Hi All, My name is Liam, i am 26 years old and have been living with RA now for 3 years. Why have i joined this forum? Well i don't know anybody in my circle who has this horrible disease so i guess it would be nice to find someone who i can just speak with and try to learn more on how others are affected and how they deal with it. I've searched for groups to try find others but everything in my area seems very limited, especially for young people. Of course I've spoken to friends/family but i don't think they can really understand what it is like, "Well you look alright", is a saying that i have constantly heard and with every time i hear it, it annoys me even more. One of the worst parts of my RA is in my lower back so people presume "oh its just back pain" well i can tell you now (i'm sure others here completely understand") its so much more than back pain.
Struggling to literally get out of bed, pain/aches in nearly every joint in my body, constant fatigue, constant leg pain, etc. My brain still wants to do everything that i used to do without even thinking about, football, tennis, partying, even just to go bowling with my friends! but my body says "errm no Liam, No way" In mind i am 26 (Maybe Younger) but i feel like i'm trapped in an elderly body which is falling apart.
To conclude, i am new here i don't particularly know what this page is going to bring me but after 3 years of battling through everyday alone it would be nice to meet someone who unfortunately knows this illness and perhaps can make some friends.
Thanks for reading.
Kind Regards
Liam
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Sorry to hear that you are having such a difficult time of things and at such a young age.
It must be terribly hard to get your head around things and is imagine, quite overwhelming at times.
It can be a very isolating disease in so far that others can find it difficult to understand, particularly as it can be changeable and we can sometimes look ok - hence the invisible disease tag.
I'm glad you've found us as everyone here is very giving of their time and experience abs here , at least you don't ever need to feel alone.
It certainly has been and still is hard to get my head around. I do feel like i miss out on a lot of things, for example i was asked by a close friend who is getting married later this year to be his best man, which of course i accepted. I knew a main roll would be organising and attending a stag do. Spending a weekend away with your mates watching them drink and party whilst sitting down drinking water was particularly hard (I know you don't have to drink to have fun but still) I felt quite isolated that weekend, had to sit and watch them all go go karting and having to head back to hotel alone as my body just couldn't last the day on my feet. Things in life like this affect the mental state as much as the physical.
I am glad I've found this page as much as friends and family do care and would talk if i wanted to, i just don't think they quite understand what i'm going through. I haven't really opened up to anybody as i'm not the sort to go looking for or wanting sympathy. Ideas on things that can benefit dealing with this would be grateful!
Yeah, I get that . It really can be tough and you're right, the emotional impact of the disease is significant.
The best advice I can offer and perhaps one of the most helpful, is learn to pace yourself. Be compliant with therapy and remain as active as is possible , at any given time.
Pacing is a hard one though. If you're anything like me, in your head you live how you always have so find yourself perhaps doing things that you pay for later on?
If you search for " spoon theory", you'll find a helpful tool that allows for an understanding of pacing but importantly, allows others to understand in relation to your energy levels , the cost of everyday activities and the impact. I love this theory !
What meds are you currently on? Are they helping? Sometimes the meds can bring their own set of trials and issues !
Glad you agree and im not the only one! Its something which i feel is becoming more prominent but i am dealing with it.
Thank you for that, that is something i have been trying to do for a little while now, i feel i'm at the stage where I've had the madness of this disease suddenly arriving and having all the tests etc.. but now i'm like right, this is the cards i have been dealt with, now i have to learn how to live with this. I am the same as you i too suffer from doing too much at times. I have a season ticket at Ncfc football club and i know now that i should just attend, sit down and take it easy and just enjoy watching the game, but easier said then done i have had a season ticket since the age off 11 and went to my first game when i was 8 so I've been brought up on it. So as much as i know il pay later i cant help but stand/sing and go crazy when we score (As crazy as i can in my condition) I always regret it when i get home due to pain but for those short moments i forget my problems and enjoy the moment. I suppose that's probably an answer there. Find something which takes you away and makes you forget your problems, hmm.
That is interesting, i will research spoon theory tonight, thank you.
I am currently on Codeine, gabapentin and also 36 weeks into a new trial drug which if i'm honest i haven't noticed much difference! but hopeful it will kick in. To be honest i love the codeine, for me that is the only thing which actually allows me to get out of bed and do anything but i am conscious that its not actually curing me but only masking my RA. I feel constantly tired which the codeine probably doesn't help! What meds are you on and do they work well for you?
Thats quite alot bless you, are they just making it bearable or helping to benefit long term?
Yes its to treat the RA The trial , AS0005 study (C-optimise)
A multicentre, open label(part A)followed by a randomised, double blind, parallel-group, placebo controlled study(part B) to evaluate maintenance in subjects with Active Axial Spondyloarthritis (axSpA)receiving either Certolizumab pegol 200mg Q2W or 200mg Q4W as compared to Placebo. (Thats the headline in the documents they gave me, what it means im not 100% sure, they talk about wanting help get remmision?
Aparently its something they give people who suffer really bad and at elderly age, they are seeing if introduced earlier in RA that it will help with remission.
A lot to get your head around! Let's hope it succeeds in terms of remission- you deserve that break.
The hope with the biologics and methotrexate was to slow the progression of the disease . They must certainly makes things more bearable but as yet, informed that I'm not quite where I need to be.
I was diagnosed , like you, three years ago with AS and RA and unfortunately it is extremely aggressive and therefore proving difficult to get under control .
A few months after diagnosis, I had both hips replaced (same time) and 3/4 months later both knees replaced ( same time ). I've since had further surgery on my foot and will soon be having elbows replaced. It's been a journey!
However, my thinking now is that pretty soon I'll be fully metal and there'll be nowhere for the disease to go so, every cloud and all that 😂😂
Even though i was weary as i don't like thought of drugs being injected into my body i felt like i have nothing to lose as treatment before the trial wasn't doing anything at all.
Its hard to say whether is helping, the codeine does well at masking the pain so i wonder if its helping me or if it's just the codeine, i went to a family event last weekend and forgot my tablets, had to leave early as pain was too much. Only real difference is morning pain/stiffness seems to have got a bit better. I used to take about a couple of hours for it to ease but now is around an hour so perhaps it is slowly helping, its hard to say because randomly i get a really bad day which feels like back to square one!
OMG bless your heart, you have had a lot of surgeries!! What are they like? Do the replacements make that area completely better? Certainly sounds like it has been a journey for you!
Haha, you will soon have to start calling your self the Terminator! hasta la vista RA!
Have you tried juicing, Liam? It literally combatted my fatigue and gave me so much natural energy. If you have a local juice bar, maybe be adventourus and try some ginger green juice (amazing for inflammation). I fill up a growler and go through it in 3 days. Literally made such a difference for me when. I changed up my diet (gluten + sugar are major triggers for me). Do you take any supplements? Fish oil and tumeric are great supplements to take for inflammation (or do a tumeric shot at your local juice bar *smile*).
When I rebelled against my body and wasn't avoiding the foods I know I should have, I literally felt worse than I ever had. Fatigue snd emotional wear, coupled with the swollen/painful fingers... I was just over it. I love to work out and couldn't even work out for over 8mo. I'm finally on the other side of it bc I changed up my diet again. Fatigue is gone, energy is back, I'm 2mo back into working out (huge for me!), but I'm still dealing with 2 fingers who are majorly inflamed (so fat and gross!), but we're getting there. Day by day......
Hang in there and know you're not alone. I also totally get what you're saying about people around you not getting it. It can feel very isolating if you allow it to. Keep exploring different all natural methods until you find what works for you. I don't do any meds but Advil at this point... just my own personal preference at this point in my life, but for me.. I know diet has played such an important role in keeping the inflammation down as much as possible.
So glad you found this site. There is lots of support on here, and it helps a great deal. Bless you, you are far too young and I feel for you. What medication are you on?
Stay strong, and lets pray that the drugs you take, help and put RA into remission.
Its a hard throw of the dice getting this 'interesting' condition when you should be having the best time of your life. I'm far from your age group and always thankful that I didn't have RA until later - though it's still a ------ having limitations I don't want.
And you're right - one of the worst things is that most people have no understanding of the disease (but most of them know a magic cure....)
on the bright side, you'll find knowledgeable people on this site to give advice and support (I'm still keeping my head in the sand myself, pretending it'll all go away one day).
And there's so much research happening that surely diagnosis and treatment will be revolutionised in your lifetime. Just keep looking after your joints so that when that day comes they're still in good shape,
The "Keeping my head in sand" is probably exactly how i am myself, i don't want sympathy or to be treated differently which is why i don'/haven't really spoken to friends/family much about it. "Im alright" is pretty much what i say to everyone although it never is what i actually want to say but opening up isnt really me. This is the most open i have been but after 3 years maybe its needed as i know now that it isn't going to go away so i am going to have to learn to deal with this for the rest of my life.
Fingers crossed they do find something, as yet everything im on only masks the condition.
Hi Liam, welcome and so sorry to hear about your symptoms. I only recently joined the forum and it's been an absolute life saver - you'll find the same thing I'm sure. I feel it's the only place people truly understand what we're all going through. Have you seen the website 'Arthur's Place'? It's geared towards young folk and was a relief to come across, although I'm a wee bit older at 37 haha. I felt all the other websites were automatically geared towards a certain stereotypical age group. I'm only recently diagnosed with Psoriatic Arthritis and my first steroid shot the other day took the edge off but it still feels like my body is exploding, wrists and knees are the killer - the slightest movement can catch me out. I had to get a walking stick within 2 weeks of the pain starting it was insane! I was mortified. Some days I feel defiant like I'll find ways around the day to day problems, other days I feel a bit hopeless cause of simple things like I can't get in and out a swimming pool, hold cutlery normally or just lounge about watching Netflix comfortably. Are your meds helping at all?
Bless you, i feel your pain! Its completely horrid, I think i've found that the mental side is becoming just as crippling as the physical side but isn't really spoke about by gp's. I go to hospital regularly and not once have they asked about my mental state (Although i probably wouldn't say how it is anyway but i don't think that's the point)
No i haven't seen Arthur's page, i will have to check that out thank you.
37 is still young! Before i got RA my knowledge on Arthritis was very little and something i only thought occurred in older people, seeing already on here that i was completely wrong with that!
I agree with you, i too have days that like. One day can be determined to get on and enjoy life, other days all i want to do is stay at home, not talk to or see anybody and question what i have done to deserve this! Netflix too has probably become my best friend haha.
I am currently on Codeine, gabapentin and also 36 weeks into a new trial drug which if i'm honest i haven't noticed much difference! but hopeful it will kick in. To be honest i love the codeine, for me that is the only thing which actually allows me to get out of bed and do anything but i am conscious that its not actually curing me but only masking my RA. What meds are you on and do they work well for you?
Ah yes, co-codomol.... That's the highlight of my breakfast haha, I take ibuprofen aswell cause naproxen doesn't agree with me but it doesn't feel like it does anything. I've always been a morning person but now I'm like a tortoise first thing. You're right, medical advice is so factual and doesn't address the more human stuff. My first Rheumatologist appt was only on Monday and it was so rushed, medical staff are so pushed because of staffing issues etc, I understand that but it doesn't help you mentally. It was like, 'you've got Psoriatic Arthritis, here's a leaflet, you're starting methotrexate, here's a steroid shot, we'll take some blood, make appointments at the desk, get blood tests every 2 weeks.....' I was like, 'whaaaaat?' If I hadn't googled in advance I wouldn't have had a clue and I was at least able to request self-injection instead of tablets cause my stomach is so fussy I know it would make me sick. I get my first methotrexate injection lesson today, long road ahead. I'd cross my fingers for luck if I could lol. I've discovered a physio clinic who use a hydro pool that has easy access stairs etc so I'm gonna give that a go next week. Even getting in and out of taxis is like a military operation but I'm trying not to loose too much confidence and just accept the new pace of life, easier said than done. I really hope your meds work out for you, the waiting aspect is so daunting. Yep, Netflix is always there when you need it.
Haha i agree, highlight of my breakfast, lunch & tea!! That's interesting i was on Naproxen for a while but same as you it done nothing for me at all. I then moved on to Ibuprofen the massive pink ones! I had to stop them as were giving me the most horrific stomach pains, so I've just stuck to Codeine and Gabapentin plus the trial for time being. Like a tortoise, that's a good way to put it! I'm the same, i hate the morning, would say is the worst part of the day. First thing i do is take my tablets and wait for them to kick in!
Its horrid isnt it, i know the nurses, doctors all want to do well and help but they are all so busy, so under staffed, under paid and unfortunately the system makes them prioritise patients. I feel like they think "he can still walk" i think if i was unable to walk then they would make more of an effort but naturally i don't want that to happen!
Oh you only just had your first Appointment? Yes i know exactly the feeling, i remember mine with my RA Doc, came out so confused like what the hell is this all about, i remember just feeling lost so i rang my GP who has been since i was born and spoke to him for bit more understanding as the hospital were like bang,bang , bang. take this, come back in 2 weeks bla bla bla , thanks Mr Betts - NEXT! Those first few months/Year was really hard and mind blowing, there really doesn't seem to be much support out there within NHS. Yes they will test you give you drugs but actually to sit down and explain how this is gonna affect you and advice on how to deal with it, well in my case haven't seen a thing!
Best of luck for your appointment today! I hope it goes well, let me know how you get on!!! I hated injections before this, but I've had so many now i don't even think about it! But they ain't nice but i guess its something we have to put up with.
You will have let me know how you get on with physio clinic, i had one appointment with physio at Hospital, he checked me over for about 20 mins and said will see you in a years time i was like what? Was actually meant to go back last month but they canceled as i was travelling up as the physio was ill!! Can you believe it? Ha.
I know what you mean but your right we just will have to learn to pace ourselves but it is definitely easier said than done!!
Thank you, likewise with yourself. No fair that people have to live in pain like this!
Hi, happy Friday. Injection lesson went better than expected. I get a bit woosey after injections sometimes but I had absolutely no adverse reaction or pain. What a relief! The rheumatoid nurse explained things really well and put my mind at rest about methotrexate. She said it stops your immune system over reacting and brings it to a normal level cause I was worried I had to start avoiding people with colds etc but it's not the case. She also prescribed me a new anti inflammatory I hadn't heard of but it's only one a day and you take it at night so it tides you over till the morning and the idea is you're not awake early wanting a painkiller but I'll see how that goes. Meant to post this link before arthursplace.co.uk/. That's frustrating about the physio. It's such a minefield sometimes.
Oh good! Glad the injection went well and that you had no adverse reaction or pain, that's really good!
Good, glad the nurse was helpful and was able to explain well for you, it's always nice to come across a lovely nurse. That's good to know, i was warned i could be more susceptible to contracting flues but touch wood other than the odd cold i haven't really been too ill other than the RA.
Fingers crossed that goes well for you, would certainly be nice not to wake up rushing for pills!!
Thank you for the link, i will have a look at that
Yeah it certainly was not what i was expecting and wasn't happy at all really, was meant to reschedule but i thought why take time out of my life to waste it for something pointless like that!
Hi Nicanoo, any particular reason? I don't know the basis of rheumatology advice on which non-steroidal anti-inflamatories a person can take. I was switched from ibuprofen to Arcoxia because of the effects on my stomach rather than the potential interaction with methotrexate.
Because it can irritate the lining of your stomach and put nore strain on the kidneys. My consultant recommends never taking it with methotrexate. Hope that helps x
From what I have been told, ibuprofen is okay with mtx, but not acetaminophen (tylenol) and aspirin because they increase the blood levels of mtx causing major side effects.
Hi Liam. I have primary Sjögren's but was initially diagnosed with RA. It's similarly isolating. I use this Healthunlocked and another, Lupus UK, because my disease spans both. I think and hope there will be others of your age here who come on to welcome you. But if not there are lots of people your age with Lupus and there are many similarities between the two diseases. Take care.
Oh bless you, so sorry to hear that! As much as i have came here to find others in my position its horrid that so many have to suffer and live with this!
It would be nice to find someone who's around my age and who lived not far away but also just to talk to anybody any age who knows what is like to have someone to talk to who understands and can relate to what its like.
I hope they can come up with something which will make life better for you hopefully for all.
Thanks Liam - you really deserve some good things to come so hoping that you find others your age in the Norfolk area (guessing that's where given the football club!).
Two out of three of my sons are football mad too - in their case Celtic! They are just a bit younger than you and I'd hate for them to have RD or related. It's brilliant to have a place to be able to offload, help others, make some truly great friendships and spare your everyday friends and family from some of the more miserable aspects of living with pain and fatigue.
If no one comes on who fits this description then it's really worth phoning the NRAS helpline and ask if they can put you in touch with others or tell you of a local group who might be able to help. They are really good to talk to. Otherwise Lupus UK has quite a few young people with connective tissue diseases of one sort or another as I've said.
Hopefuly the trial med will kick in soon for you but if not, many find that Methotrexate is very effective and there are plenty of others to try. Some find these drugs give them their life back but it can take a while to find the one for you.
It's such a shame that there's so much support for people diagnosed with some diseases when first diagnosed or undergoing difficult treatments where others such as the rheumatic diseases have very little by way of counselling or support provided in or near the hospital for the newly diagnosed.
I always think about this when I see Maggie's centres in hospitals I've attended and find myself thinking of those newly diagnosed with a rheumatic disease. It would be good to have autoimmune disease drop in centres like this too where people can drop by for a cuppa and some calm after hospital visits, being newly diagnosed or after a day of infusion treatments. I'm sure if all the autoimmune charities came together for this purpose, relatively rare diseases on mass are affecting enough people to make this dream scenario worthwhile. And the drugs we all take are often the same ones too. We need a Maggie of our own it seems!
Yes it would be nice to find someone around here and make friends with. I am indeed Norfolk & good. I live in a small town around 15 mins from Norwich.
Bless them, i went to Celtic park few years back to watch a pre-season match Norwich vs Celtic. Atmosphere was incredible and the Celtic fans were very nice and welcoming, i too hope your children or anybody in fact doesn't have to live with this!
I am finding that this certainly is, i'm blown away with how much response, kind words i have received in only the 1st day. I didn't expect to get this much response! Struggling to keep up replying to every kind soul that has messaged!
It doesn't necessarily have to find someone local or my age it was kind of just a would be nice if could but isn't essential. Is lovely to discuss with kind people like yourself But i didn't know you could do that with NRAS, i may look into that thank you. Feels like quite a big step today, i suppose im a typical man, bottle things up and not want to cause a fuss and show my emotions!
Thank you, i do hope so too! If not i shall mention Methotrexate to my RA consultant and see what they say.
I couldn't agree more, literally nothing has been mentioned to me or anything. I found this page just due to looking, i happened to come across NRAS only due to a post popping up on my FB. There certainly should be more support available for people as its quite a big deal really! Its taken over my life which im sure it has with you too!
It's lovely that you are getting so many responses - this is a great community. I was diagnosed with Rheumatoid six years ago after a lifetime of various kinds of autoimmunity. Then, after a few years of feeling certain that it wasn't RA after all, I finally got rediagnosed last year with primary Sjögren's after ANA and then a lip biopsy showed up 100% positive. It has turned my life upside yes, but it's also made me focus on the things that matter most to me and I've learned to manage my health much better than I ever did when I was your age.
I do lots of voluntary work as well as being a practicing artist. I'm presently trying to help a chap of 28 with a baby daughter who is sure he has Sjögren's but can't get taken seriously by doctors apart from for early stage kidney disease - which they are viewing in isolation to the rest of his symptoms and telling him young men don't get Sjögren's. It's very frustrating and distressing for him and I must say it's always good to at least know what we've got and be taken seriously. Lemons and lemonade! Xx
My Mum had a kidney transplant last year because they didn't monitor her kidneys and had sjorgrens for over 30 years, it was the worst thing she did. She had a better life on Dialysis and although it was restrictive it was a much happier life. I think this Young Dad should go to his Local MP and bring this up with the Government as I am doing, £75,000,000, in foreign aid to refugees in another country whilst our NHS is buckling and is on it's knees. My CBT therapist has complained to her MP and I to mine, think it's time we need a voice and need to be heard!
Don't get my started on the political side! Millions given to Greece over years to "Bail" them out because they can't function! Once or twice okay but they haven't learnt, how many times do you keep giving if its resulting in same result? Our NHS certainly is in trouble, and now Tories have won again im afraid it is only going to get worse. To think future generations may never know a NHS and it becomes privatised which could mean so many poor souls miss out on the treatments they should get!
Country a mess, government only care about the 1%, but people are becoming aware!
Well stay strong! But yes sense of humour is key, if we cant all have a laugh then what is the point? you have to try have a laugh, best medicine they reckon?
Thank you Liam, I will, sometimes you just need someone to tell you can do it and have faith in you but when your closest friends and family aren't the ones doing this it makes it hard to comprehend.
it certainly is, i have been very humbled for it all and only wish i had found this sooner! Why don't docs tell you about platforms like this?!!
So sorry to hear this condition has got you too and you've had to ordeal 6 years of this horribleness! You are correct, before i didn't really give things a thought, didn't worry about consequences but now i am very conscious, watch what i eat etc.. trying to take care of my body. Life is short so focusing on the important things is probably the best thing to do. Glad to hear you have manged to be able to get a grip on things, it's not easy!!
Bless you, that is an amazing kind thing to do! With all the madness that is going on in the world it's nice to know there is lovely people out there still like yourself!
I can relate to that, it took nearly 2 years until i actually finally got diagnosed with RA, they kept saying you have all the symptoms of it but your too young, we don't think this is what it is. Frustrating to say the least! Especially when they finally say, actually yeah it is that!
Let's hope they can get to the root of it for him and help him out, no one should have too suffer, a great thing you are doing though. I would love to get into charity stuff, especially RA as i have first hand knowledge, but i literally haven't a clue how you go about getting involved?
Hey, don't know if this is helpful at all, but I recently had a new Rheumatology doc who referred me to the Occ Health at local hospital. The lassies there were brilliant cos their goal was to help you get your head round the normal 'living' side of RA instead of just the meds/pain side & they completely understood where I was comin from unlike the non-RA population of the planet. They sent me to a 6week class (a couple of hours a week) which basically re-programmed your brain to living with RA - all the wee daft things like showing you tools/gadgets which can make things a bit easier round the house. I struggled a bit initially cos I was still in denial, but came to terms with it eventually and now use some of the gadgets in my house. I've even got myself a 'granny trolley' (albeit pimped up slightly) for when I need to go shoppin etc which was embarassin the first time I used it but now can't live without it!! (Particularly in Aldi when the cashiers take part in their Olympic sport of throwin your shoppin at you at high speed!) I don't know if you have something like that Occ Health service in your area but it might be worth checking it out. Every wee bit of help makes a difference, makes you feel like you've got folk around you who just 'get it' - which for me is half the battle of dealing with it.. Good luck
My heart goes out to you, I am in the middle of having tests due to a lot of pain in my joints and I live with DDD (disc degenerative disease) CFS, Raynaud's disease.
I completely see where your coming from when you say about people saying you look ok and the feeling that you are loosing the person you used to be. I also have family who sometimes forget the pain I'm in and see me as normal. Not to mention the times I've been told, you can do what you want if you put your mind to it.
Arggghhhh the pain, some days I'm up and about in a manner of speaking but some days I'm bed ridden. I long to go out and party again, go swimming, go for a walk and just be ME. But I know that part of my life is over. I am roughly 20yrs older than you but that doesn't stop me from wanting to do every day things and live the life I once had.
To end my reply all I am going to say is your not alone, I use this site to vent, get more of an understanding of my illnesses and to be around people who feel the same as me.
Take care of yourself and I'm here if you want to chat 😊
Sorry to hear that! I hope they can find what it is and help you on this as living in constant pain is horrid and something no one deserves to have to endure.
Yes they are two of the hardest things (Other than the pain) which comes with having this illness. To pretty much everyone that see's me at a glance would think im a normal 26 year old lad, and the days were its really hard to deal with pain whilst friends/family want to do stuff but all you want to do is stay at home and not do anything is hard. I feel like they think im becoming "Boring". The other one i get is "Why are you always so grumpy" I just want to say well why dont you borrow my body for a day and maybe then you might understand how hard it is to smile, to be positive and to even get out of bed in the morning!
I feel for you, i the same have those problems. I have loved football since i can remember, not being able to play no more is horrible. I hate the fact this disease can stop you from doing what you love as life is so short that you should be able to do what you want and enjoy all the things you love, nothing should stop that but as much as im sure we all try, unfortunately with all the will power in the world our bodies just wont let us!
I think that is the same reason i went looking for something online & eventually came across this platform.
Thank you, that is really kind of you and would be nice, same goes to you too.
I also feel like I'm becoming the family bore, they want to go out for meals, days out ect.... I try to explain I'm in to much pain, I don't want people to see me struggling or feel horrible around strangers.
There is an upside and that's this site and I also go to a group but not to deal with my illness, more the mental health side of it 😊
I couldn't agree more, its hard because you want to go,you want to be the fun, energetic person you used to be but as much as you try you just physically cant do it which people don't seem to understand. Ive actually had family say to me "Oh yeah that excuse again" I find its hard to actually explain to someone who doesnt have it what its actually like. I would love for them to have my body for just an hour or even 10 mins, then maybe they could understand.
Yeah i am finding that out, response today has been incredible! I feel very humbled by all the kind souls here like yourself. I hope we all can be cured and live our lives like we deserve too!
If they find a cure for our illnesses it probably won't be in our time but for our children and loved ones that go to live on I hope it is in their time. 🤗
I am a relative dinosaur to yourself at 48, however I was 29 and an avid football player when I first got ill.
Not gonna lie to you, it knocked me for 6. I stuck my head firmly in the sand and tried to carry on as much as possible. I managed about 5 years longer at work, with it becoming increasingly difficult. I worked in IT services - so lots of meetings with clients that I had to cancel at the last minute etc. Got too much in the end and that was that.
I recognise all the things you say about friends / family not 'getting it', but also like you say I had no idea myself what RA really was until I had it, so how can they get it?
I've still had a pretty good life, lots of travel, married, 2 kids (that I adore) etc. I've been 'lucky' (ha) that I've continued to be paid and my wife has a v good job, so that's one worry I haven't had.
I have had 3 joint replacements (2 hips, 1 knee) but they have been pretty successful.
I have also never found anyone near me / my age with similar woes, apart from one good mate that I've known for years who has chronic reactive arthritis. He's the only person that really understands and we've become pretty solid mates.
One thing I will say, and I know this may sound a bit patronising (sorry) is that there are worse things that can happen. I've had major back issues over the last few years and this has affected me possibly more than the RA. At least with RA it can come and go, but it turns out there are lots of conditions that don't, and constant pain is not fun.
It took about 10 years to find a drug that really helped and that I didn't (yet) have a reaction to. For me it's Humira at the moment. In my experience as a (at the time) young person they do tend to be more inclined to keep on until they find a treatment regime that works, I guess because you may have to live with it for a long time and the longer it goes on out of control, the more accumulative damage gets done (and the more it then costs to look after you).
I never did play football again, which is a bummer, but these days the ability to walk properly would be enough.
Good luck with your journey, and consider telling some of the people close to you the truth about how you are. It's tough enough, but doing it all without some empathy can make you a very angry person and that ends up bad for everyone. People won't see you being angry and automatically know why (trust me on that😀), they aren't mind-readers and if you don't tell 'em - who will?
Haha, you're younger than my parents so your still young! Nice to find another footy fan!
Yeah I completely understand that! It's not something you expect to have happen and have to deal with! That's probably exactly what I've done, bury my head in the sand and acted to others that I'm fine! It certainly affects work, I was a bricklayer and was told I would have to change careers which at 23 when I knew from probably the age of 12 when I used to help my dad who's a builder in summer holidays that I wanted to be a bricklayer was pretty tough, im fortunate that my work is understanding, they gave me a new role in the office which certainly was a massive help and I'm very lucky to been given the opportunity.
That's so true, I felt and still feel the same, I didn't know anything so how are they meant to even comprehend what I'm going through?
That's good that you've still managed to achieve in life, kids are special. I'm a new uncle to two little gems and a godfather to my best mates daughter and I love all three of them. I'd hate them to have what I do!
How were the surgeries? They've touched on the possibilities of surgery with me but have kind of said it should be a last resort, due to being young they said my body is at age where exercise & healthy diet can help and more reactive to medicines.
That must be good having a friend that can relate, luckily for my friends/family none of them have my issues which is a good thing but would be nice to find someone who understands.
No you are correct and I am well aware of that, I see others when I go to hospital and you see people on tv and social media which your heart goes out too and makes you think "well it could be worse" constant pain certainly isn't nice, sorry to hear about all your pains! I feel for you.
Glad you managed to find a drug that has helped and long may that recover. I think that's what there doing, trying different things to see what works. I do feel like a guinea pig sometimes!
That is a shame, for this disease to stop you doing what you love but glad to hear you can still get around! 😊
Thank you so much, same goes to yourself. Yeah I know what you mean, I have tried at times but don't really like opening up or want to be treated differently but I probably should be more honest, would make relationships a lot easier! But us men to do like to bottle things up!
Thank you, all the best to you and thank you for your message.
A bricky- not surprised that didn't last. I used to lay pattern imprinted concrete when I was younger. I'm thankful that I had moved on and (via 4 years at uni) gone onto a job that offered benefits such as private health care and long-term sickness cover, or my life may well have gone down a slightly different path. Good that your employer was understanding, construction is perhaps not always the most sympathetic industry.
The surgeries were, hmm how to put it. The first one (hip) was scary as hell, but I really had no choice and have had no problems since. Second was better as I went private, same outcome. Third (knee) was the most painful and one that has had lasting repercussions. I was told I was 'too young' for a replacement so to 'put up with it' for as long as possible. So for about 5 years I hobbled around with my left leg getting progressively more deformed until they eventually said it's probably time. Unfortunately the years of walking on one side more than another, possibly combined with the effects of certain long-term medication left its mark on me. I was walking up the stairs one day getting the kids ready for school / nursery and (it turns out) 3'of my metatarsals in my right foot snapped. Lasting pain.
Worse still my spine wasn't happy with me walking lop-sided and then suddenly walking upright (after surgery) and decided to fall apart. 8 discs prolapsed, 2 emergency surgeries, 5 nerve block injections under general anaesthetic and 18 months of recovery later and I still can't walk properly. So be aware that looking after what you have got and what you can do will pay dividends later in life.
On the bright side I have now gotten into going to the gym regularly, so can say with some certainty that exercise is very possible (and massively recommended). Without it I would not be able to do half as much and would probably still be in a lot more pain than I am.
I know what you mean about not wanting to be treated differently, but if your mates are anything like mine you don't need to worry about that! I don't open up to many folk, but you can tell the ones that will listen and talk to them. It definitely helps to be able to get it off your chest sometimes. On the other hand I no longer speak to some 'friends'. Being told you have a psychosomatic condition by a so-called best friend (just before my first surgery) was enough to make me realise that some people aren't worth the effort. And mates were everything to me when I was your age (sound like a right old-fart).
To be honest it's much easier to sit here and type out advice to a stranger, far far harder to actually do any of it in the first place.
Go easy on yourself and be honest with yourself.
You are so right about the mental side of things being overlooked to some extent, it occurred to me reading your posts that possibly the most important thing to learn with regards to your health care is that nobody else is as bothered about it as you are. You have to shout (not literally) to get the best from the NHS, and just because a doctor says you should do something or take something doesn't mean you have to. You're the one that has to live with the consequences of the wrong drug, not being listened to, or whatever else it may be. Research is your friend.
Yes, thinking back Bricklaying was probably never going to end well if this disease was waiting to become prominent! But as i said was something i was always interested in (Other than playing for Norwich). Always been an outdoors hands on person, so it was perfect. I have had to adapt but very fortunate to work for a very good company who didn't want to let me go (i joined at 16) and offered me a great opportunity which as of now is going really well! Which is a relief as being told you have to change career as well as trying to get head around being diagnosed was tough enough!
Ouch, they don't sound nice at all, horrible to think people like yourself have to go through that. I take my hat off too you though! That seems to be the way doesn't it, they kind of palm you off until finally there is no choice so then they act, pity they couldn't be more pro-active rather than reactive. would save so many like us having even more problems than we start with! 3 snapped at once? OMG ouch, i bet that was excruciating! so sorry to hear you have had to suffer like this. Thanks for that, i will certainly bear that in mind! I suppose most live for now which nothing wrong with but in our health situations, probably wise to be conscious to that.
You've certainly been through the wars! What have you found which as helped you go through it all? I've had times where I've thought i wouldn't actually mind if i didn't wake up again, to not have pain no more would be, well, i can't actually remember what it is like to be pain free!
Glad to hear you are able to get to the gym and do some exercises, I try to walk as much as my body will let me, go swimming if and when i can (again body dependent) and have done some Pilates but again all depends on what my body will let me do. I do agree i think exercise is key and is something docs keep saying to me, as i'm young they say exercise is the best as my body at my age will be more reactive (Apparently).
No you probably are right, i am lucky to have some very good friends and they probably would be fine, i guess i just don't want to be a burden or come across like it's all about me when i know everyone has something going on in their life. That's so horrid to think someone who you though was a friend can be like that, but maybe in a way its good that happened as showed true colours? No doubt you're better off without that person? Still, not nice, no doubt. ha ha you don't sound like an "old fart" at all Ade.
Very true, it certainly is, especially behind a keyboard!
You've probably hit the nail on the head there, and that answers more in life than just our health. People/Government etc.. don't care about things that are most important to you, I suppose you just need to do you and embrace those that want to share the journey of life with you, hmm thanks Ade.
I just kind of think, well they are doctors so i should listen but you are correct i guess, is my body, my problem there for my prerogative. Cheers you've made some points which are definitely eye opening. Before my trial if i'm honest they weren't doing a lot so i'm conscious if i take myself off the trial (Which they do say every time i see them am in willing to continue) it will go back to not a lot like before.
Thanks so much for your message Ade, have a good Friday and a good weekend.
Yes I used to enjoy working outside, and doing a physical (but creative) job. It was hard work and not good for my back (it turns out!), but enjoyable (when it wasn't raining!).
The thing with the knee surgery was that there is a limit on how many 'revisions' that can be done with a knee (or any other joint) replacement. The fear is that you will outlast the replacement and there won't be anything they can do. In the end, I again had little choice as it was totally gone. And as my rheumatologist put it, better to have 10 years of mobility now than when you're 80. I may not agree when I'm 80 but still.
For me though the consequences of waiting have been fairly extreme. The foot thing did hurt when it happened, but not as much as it sounds like it would. I still got the kids to school (on crutches in the snow - a morning I don't want the repeat in a hurry!). It may sound odd but I didn't even find out what had happened until recently as I had so many other things going on I just limped for a bit and ignored it. Now it is pretty painful to walk on and I can't walk barefoot far.
As for things that have helped, I wish I could give you a simple answer. I was put on antidepressants a long time ago for 'reactive depression'. This was around the time I stopped working. Hindsight is always better than foresight, but I wish I hadn't bothered. I spent a long time on them and have only recently managed to get off, along with a few other drugs that I decided I didn't want to keep taking. They are a nightmare to get off and only have limited value to be on IMHO. I feel now that it wasn't surprising I was a bit depressed, one minute I was a 20 something party animal who enjoyed football etc, the next I couldn't do my shoes up or walk to the kitchen to get a drink. Bit of a shock to say the least. I now believe that antidepressants possibly prevented me from getting used to things, sometimes depression (if we must call it that) is there for a reason. I would say now it was more grieving for the life I had before. And grief is a process that you can't hide from.
Dealing with the surgeries (and the rest of it) os just something that you have to do. I've had good support from those close to me, and time is a great healer. I'd gotten used to the RA and then my back went....
One thing I'm curious about, and forgive me if this is mentioned elsewhere in the thread (you've got so many replies I haven't read them all!), but is the trial you are on a placebo, blinded one, or do you know what you are on? I'm a bit surprised that you say you weren't on anything else before and are worried that if you stop the trial you won't be on anything afterwards. If you have a diagnosis of RA (or similar) you should be getting treated for it. Early treatment is known to be best for long-term outcomes. Preventing damage to your joints is far, far better than replacing them when they are worn out.
It took nearly 10 years but I have been in clinical remission for the last few years - thanks to Humira. I was pretty much pain-free (apart from my knee, oh and shoulder but that's another story). There is definitely hope for you that remission can provide periods of relative calm in your life, but you really need to be on the right drug for you. I hope you can find it, with the help of your rheumatologist.
Exercise is a funny one, because it really does help, but boy can it be hard work and painful. I started going to see a good personal trainer after I lost loads of muscle mass following the disc prolapses and due to spinal cord injury. I literally couldn't stand up unaided let alone walk.
Seeing a PT has been the best thing I have done for myself throughout this being ill thing! She has enabled me to learn which pain was 'ok' and which pain was not ok. As alluded to above my shoulder is a bit knackered (torn rotator cuff and eroded collar). The only surgical option is a total shoulder replacement, but this is contraindicated due to the nature of the damage, so there is a high likelihood it wouldn't work and would leave me in more pain. I declined and have been 'putting up with it' for about 10 years. Going to the gym has enabled me to build up the muscle around the shoulder and this in turn has helped massively with the pain. I can sleep on it again, which I couldn't for years. So as hard as it can be sometimes, doing some exercise is a massive positive. Even in the gym there are lots that you can do if you know how. The cross-trainer is great, low-impact cardio for example. I do targeted weights / resistance type stuff, Pilates / core stuff etc. I sometimes wear wrist protectors and compression gloves if my hands / wrists are painful. It's not football ☹️, but it's better than nothing by a long way.
Speaking of which you're a Norwich fan? I know your chairman (Steve Stone) as chance would have it. In fact I was his guest at Wembley (club Wembley in a box, free beer 🍻 😜) for the checkatrade trophy last year. For your info he's a die hard Coventry fan and a top bloke.
One final thing, when I was saying about it being your body, I didn't mean to ignore your doctors - they are the experts after all. Just be aware that they are not gods and are not always right. GPs aren't experts in rheumatology / mental health / orthopaedics etc, and ultimately it is your body. Ignoring them is not good, but being an informed, proactive and involved patient will mean they tend to listen to you more than if you just blindly accept what they say. Questioning them is your right, if they don't like it, find one that does. A good rheumatologist will be one of the most important things for your health going forward.
Anyway, apologies for the essays, I'm sure you've got better things to do!
Hi liam and welcome ! I have only been a member of this forum for a short while and have found it very helpful with everyone ready to help with advice ! I was diagnosed last November and yes it was abit of a shock ! I have RA in my feet and hands and the pain in my feet made it unbearable to get around ! Anyway i have had quite a few hospital appoints and have been taking Sulfasalazine which have been a great help so much so I am now in remission ! So I am hopeing it will stay like that but no one knows what's around the corner ! So we will see ! Keep your chin up Liam and keep smiling and I feel sure that there is a light at the end of tunnel for you ! God bless and my prayers are with you ! Takecare
I'm the same, my first day and I must agree I am finding it the same! People like yourself have been so kind and helpful to take time out of there day to message me.
Sorry to hear about your diagnoses, it certainly is a shock isn't it! Oh bless you that's horrid. Hospital appointments are so fun ain't they? I haven't heard of that drug before, glad it has been a help to you and that you are now in remission that is excellent.
Very true life can be unexpected so fingers crossed something good will come.
Thank you so much, I hope I find that light soon! Thank you for your kind words, I hope your situation keeps improving! Thank you, my prayers are with you too!
Thank you for your kind words, it's really appreciated.
Welcome, I'm pretty new also! As a 24 year old I can completely understand where you are coming from. I am a keen mountain biker, so being restricted because of the arthritis can be very frustrating at times.
Fatigue can be a very irritating and invisible part of this disease. I often find my self wondering how on earth other peers manage to achieve so much in one day, when I can feel exhausted just making some lunch or having a shower. My advice is to take full advantage of the better days, and allow yourself to rest on the not so good days.
People are age definitely do not seem to understand what we go through. Even on days when I don't have a visible limp, I am still in constant pain, but because I don't make a fuss people tend to forget that it's still there.
Good luck with everything and I hope your medication is more effective soon!
24, wow, even younger than me! So sorry to hear that you suffer from this horrible thing too! It's hard isn't it, especially at such a tender age! Frustration is a massive thing isn't it.
I know the feeling, I can't remember the last time I didn't feel tired or fatigued. Never used to be the type to sit down but now struggle to do too much. Bless you that's isn't nice, hopefully things can improve for you.
I think that is key, try to enjoy the good days and take it easy when you can. Shouldn't have to be that way at our age but I guess that's the cards we've been dealt with. Life is an interesting journey, peaks and valleys, twists and turns, life can surprise the hell out of you!
No they certainly don't, and I find it hard to try to correctly explain what it's actually like, they think it's just a bit of pain but is so much more than that. I'm the same, don't want to make a fuss so just Carry on that all is well.
Thank you so much, good luck to you too! I hope so, I hope they can get things that are effective for yourself as well. Thank you for your message.
Yeah it's definitely not ideal. I've always tried not to look at it in the long term though, as it can be quite scary thinking about how much of our lives are going to be dominated by this disease. But there are positives, and there can be times in our lives when it is under control. And who knows, we can always hope that by the time we are older there will be a cure!
There is definitely still a lot of misconception that this disease only happens to the older generations. I've lost count of the amount of people that respond with "oh but you're too young to get that!". It's important for people close to you to understand though, so they know how to best support you. Although I know thats easier said than done, because I've often gone through it feeling that if I don't talk about it then it isn't there and I can be a 'normal' person.
For me one of the most important parts of coping has been the mental side of the disease. The pain I can cope with, but the mental battles are much harder for me. And the more fatigued I am, unable to do things, the more it brings me down. But you have to try and look at the positives, I've done lots of things I probably wouldn't have done if I didn't have RA, because on the good days I can have more motivation to push myself and make the most of what I am able to do.
It definitely seems like its worth you going and having a chat to your doctor about the medication you are on, thats a long time for you to not see any improvements from a drug. There are other options out there and they should be supporting you with that!
It certainly is overwhelming to think this is it for life, and that it could get worse and worse as time progresses! You are probably right, best to take day to day and enjoy what you can. I truly hope for us and others suffering and to avoid future generations they can find a cure!
Ha, i get exactly the same Kirsty! After a while it get's rather frustrating i have found. very true, i do feel they all think its just a bit of pain i'm in, i don't think they actually realise what RA is and it is so much more than "just a bit of pain" I don't think they get how some days i'm worse than others. I had a few okay days last week but Sunday was horrific, i got "you were fine the other day" I tried explain i was having a flare day but they don't seem understand that it can be so up and down. That is so true, i want them to understand but at the same time i want to be treated as normal, i would hate to think Friends/family when organising think "oh we cant ask Liam to do that with us" or to think i could miss out on social events because they think better if i wasn't there due to my condition. Despite this disease i am still the same person.
Bless you, i think i am the same. I have had some very low days and had some very very warped thoughts which i never thought i would ever encounter. That is a good way to look at it, i think it is important the enjoy the days that you are able too.
Thank you, i have a review and next dose of injections for the trial at the Hospital next week, so will see what they say once they review the progress but certainly food for thought so thank you Kirsty.
A cure would be an amazing thing to happen, but unfortunately I don't think people really understand the suffering of RA and therefore it isn't much of a priority in medical research. Well done to you for being part of a research project though and hopefully helping people in the future as a result of you being a test dummy!
Flare ups are definitely hard to explain, I've just been advised to keep pain charts to take to the consultant but maybe they would be useful to show friends and family as well? I've downloaded an app on my phone that allows you to record your pain levels, fatigue, mood etc each day and produces graphs to show how it is. It may also be useful in learning what triggers more pain and fatigue and how to control that better!
Sorry to hear about your dark thoughts, it's definitely a side of RA that is overlooked. When I went to my consultant last year and they asked for the medication I was on; one of them was an antidepressant. I was a little disappointed when they just said okay and wrote it down without even asking how I was coping!
Try to stay positive, and don't distance yourself from those close to you! Although they can't understand what we are going through they can be there to make you laugh on days you feel like all you want to do is cry
I hope your hospital appointment goes well, keep us all updated with how you get on!
Kirsty
p.s sorry for my rambles, like you I've never had a opportunity to speak to people going through the same thing before!
Unfortunately you are probably right, although i reckon many would be surprised how many poor souls suffer with this, it should get more coverage! Thank you, of course i accepted as willing to try anything that may help but to also know that it may help others was another reason i pursued it. I must admit i was hoping for more and quicker results but the fact this could also benefit others is making me stick with it, my hospital has 2 others doing it and apparently one has pulled out so i feel i should keep going as would love to find out in years to come that from being a guinea pig others have benefited!
Yeah they sure are, can be weird, i can go from having one really bad one a month to have a full 2 weeks! Usually always happens just as you have something planned! That could be an idea actually, what app have you downloaded? that could be useful.
Sorry to hear they treated you like that, i don't think in 3 years any GP/nurse/consultant has ever asked how my mental state is. Tbh i would probably lie and say yeah i'm fine but it would be nice if they asked! It certainly is a big part of it, it affects your whole life so of course your bound to have mental problems occur from it?
Thank you, that is so kind. I don't mean too but i probably have, especially with friends, i just don't have the energy nor do i particularly want to go down the pub on a Friday/sat night, drink water and sit in pain whilst they all get drunk but i probably should see them more, i do think a lot think im getting old and boring and don't realise i dont mean to be a recluse but i literally don't have the energy.
Thank you, i will update how it goes. You aren't rambling at all, i honestly value every message, i may not be able to always reply straight away but i will try my best to answer back as soon as i can. Hope you have a good weekend and the pain isn't too bad!.
Hi Liam, welcome to the forum. I am so very sorry you have this horrendous condition. I totally understand your frustration. It is an invisible disease, mostly. I hate when people say oh you look great or they have the magic cure! Everyone knows someone with 'arthritis' ! I suggest you start by referring to your illness as Autoimmune Rheumatic Disease rather than RA.
Many doctors do not understand the difference it seems and definitely people around you will not understand the difference. OA and RA are very different conditions. I can only imagine how difficult it must be for someone your age.
There appears to be an increase in the young people affected by RD. During the WalkFor Arthritis, they introduced two leaders in their early twenties. How terribly frightening it must be. The good news is technology is accomplishing amazing things all the time. Nanotechnology, genetics, and assistive devices make living with this illness , more tolerable. Many people have found tremendous relief from the new drugs now available as well.
This is a great place to vent as well. I am sure there are times you just want to scream in frustration. Feel free to scream, laugh or cry. We get it. Hang tuff Liam, who knows a cure could be just around the corner. But you are not alone. Big Big 🤗
Thanks for the welcome, I certainly feel welcomed. 😊 thanks, I'm sorry that your here die to this horrid condition too! Yep it definitely is, most people wouldn't even have a clue you have a serious condition.
You look great and massive cure are indeed frustrating and upsetting sayings! That's a mouthful haha how about ARD? Is that a thing? I just call it RA as that's kinda how the docs summarised it. Yeah it certainly isn't easy and has been and still is hard to adjust too.
Do they do walk for Arthritis yearly? Would be nice to get involved in something like that! Technology definitely keeps getting better so fingers crossed that can find something which can help us all.
There has been many times I've wanted to scream as ask what have I done to deserve this. Thank you so much, I'm glad I've found this page and got to talk to lovely people like yourself. I wish you all the best, let's hope that cure isn't far away!
That a really interesting point, I find people understand much better when I say the terms 'chronic' and 'auto-immune'. My able-bodied self had no clue about arthritis before this all happened and I would hear the word 'arthritis' and not really think about what it truly meant in terms of a person's suffering. I came across this leaflet, although it's for employers it really sums up the challenges faced and I think anyone could read it and understand a bit more nras.org.uk/publications/wh...
Me too, i literally just thought Arthritis was something that happened when you were in your 70's/80's plus, didn't realise affected so many and at all ages! And that it is so debilitating and painful! So sad to know so many our affected by this horrid condition.
Thanks for the link, that may be handy to give to family members, may help them understand a little more, so thank you so much. You are a very kind soul.
Yeah, I've recently been referring to it as a 'Chronic auto-immune condition' which has resulted in less "oh, yes my granny/uncle/neighbour had that" or "But you look fine to me/you're too young to have that" type of thing!
Liam, just another wee add-on and no need to reply to all as fingers and hands get sore.! You are doing Fantastic--I would be so proud of you as my son!! Well done in your determination to understand what is happening your body. A lot of your replies were a great help and so supportive, even to me an oul' wan!!! But I am new to this disabling state too. For family and friends, how about handing them a med leaflet explaining symptoms of RA? They also need to "get" what's happening to you. Have you asked about the stats on the trial drug? If 36 weeks up and you have often said you are not sure its working, then you need to be on something that will give you quality of life NOW. Check out all the experiences here and like I did this morning, knew what to ask for to tide me over by the responses I got. Keep chasing everything, if we are not in pain, we are living! You have a beautiful style of writing, divert to another format to enjoy life--- you would make a great Councillor with your first hand experience! I wish you well and thankyou for sharing. Xx
Thank you for replying and for your kind words, you have put a smile on my face😊 people like your kind self have took time out of their lives to message me so I will try to reply to everyone as soon as I can!
Aww thank you that's so sweet, I do hope my mum is proud! I think now that it is key to understand. It's something that isn't going to away so I need to understand to better myself for living with this. I have been touched by the response and kind words from lovely messages like yours.
Sorry to hear this has recently affected you, it's not fair or nice, I wouldn't wish it on anyone in the world. That could be an idea, I'm up the hospital Tuesday, I could perhaps get a leaflet then and give to them. I get constant reviews and they are slightly disappointed with the results "which makes me feel useless" but they still think I should continue and I'm up for anything that could help so I'm sticking with it.
That is true, pain is apart of life! Oh thank you, I actually suffer from Dyslexia. It's more my handwriting which is like hieroglyphics and memory, I've always been pretty good at spelling but thanks for the kind words. I would love to get involved in charity work to help others, especially regarding RA as I have first hand experience of what it's like so I can relate! But I haven't a clue where you even start to get involved in things like that.
Thank you for your message, you've really said some kind things which have really put a smile on my face, I'm sorry you also suffer but I also wish you well, let's hope we both can soon find a happy ending to all of this.
Take care xx
Liam
Hello Liam
Welcome to the site. I can relate to everything you wrote, we all can. No one really understands RA except others with this condition.
I was 44 when my first symptom of RA happened, and it wasn't until I was 48 that I got diagnosed with it. I thought I was too young to have to deal with RA, but you are only 26!! I have a 25 year old son and it would break my heart if he had to deal with RA. I guess what I'm trying to say is that it breaks my heart that you have RA at such a young age.
I'm just babbling now, must be my "mothering" instincts
Thanks, you are correct which is the main thing I've found today about this site, as horrible as it is to know others also suffer from this, it's nice to be able to talk to others who are going through this condition and hear how they handle it and what meds etc . That they all take.
So sorry to hear you've got this and had to endure for 4 years, it's not fair or pleasant at all!! 44 is very young as so is 48! I hope they can find something which can help take the pain all away for you!
Thank you, it certainly isn't nice and I hope your son never has to deal with this as nobody should have too.
That's okay it's sweet and means a lot, someone you've never met to care is so overwhelming and lovely so I thank you from the bottom of my heart.
Hi and welcome Liam! As I think you will have gathered by now, this is a very supportive group!! I first became unwell in January 2016 when I had a very sudden severe onset of symptoms, a month before my 40th birthday, which completely floored me. I was on Doctor Google when I happened to come across this site (the one and only time I was grateful for Doctor Google in the early days, most of the time it terrified me!!). You have no idea how much I have appreciated the support and advice I have received from the good people on here. I really hope you will gain as much from being a part of this group as I have.
Yes it certainly has come across that way, honestly blown away by the response i have had. I didn't really know what the site would bring but the amount of response i have had and the kind messages, love and information i have received has been amazing. Also horrid to see so many others suffer from the same thing and on so many different levels.
So sorry to hear this condition has got you too! 40 is young, shouldn't have to live with this disease! Glad you found this page, it was stumbling across NRAS on FB which has led me here. Pity docs don't share things like this site, this would have been good for when i was first diagnosed as that was an extremely tough time in my life.
Its only my second day but already with all nice messages like your's have been so lovely and supporting, im glad it is helping you out.
I definitely know how you feel, I am 23 now but was diagnosed at 12. Everyone says they get it but unless they have it they really do not. It can take a while to figure out what you can do and what is too much.
12? Oh my bless your heart, that is horrid! I thought me being diagnosed at 23 was bad but 12! So unfair. You are right, people think they know "Oh its just a bit of pain, it could be worst, just take some paracetamol, you will be alright" (if only was that easy) You are correct and i think that's where i am at now.
I was just lucky to get diagnosed then, I like some other people were unfortunate enough to be born already symptomatic, just took till 12 to see the right doctor, after my 4th surgery. People just do not get it, even some docs do not even get it. I hope your medical treatment, if your getting any, is going way better then mine was. Sometimes the meds seem more extreme then the condition on the good days.Thought sometimes the pain will make you try anything to make it better. Even being knocked out sounds good sometime, but then there are good days. I really hope you find what helps you, and like most people here if you need to talk with people who know what your going through we are always here to help.
Thank you so much, it has been humbling the response from lovely people like yourself.
My heart goes out for you, i've battled with this for 3 years which is hard enough but for all your life, life can be so unfair its unreal. I probabaly took me around 4 gps to actually be referred for a MRI and then nearly 1 and half -2 years until i was finally diagnosed. I think your right, of course they study from books on what RA is, but they dont have it so they will never know what it is like unless they had it!
I am currently trialing a new drug which i am 36 weeks into, before that though treatment was pretty non existent, just anti-inflammatory and pain killers. To me the meds just mask it, can give you false hope. Some days i can feel not too bad but if i miss my meds it kicks in horrifically which just shows meds are just hiding it if that makes sense? I too would love to be knocked out sometimes. I've wished and prayed this goes away, but honestly if i could have just even 1 hour a day pain free, my oh my i would cherish that!
Thank you for your message, i hope your situation improves and send you nothing but best wishes.
Hello welcome. I'm sorry you have been diagnosed so young. I was only diagnosed myself 4 weeks ago but I'm a bit older than you. I didn't even want to take meds and wanted to do things the natural way but I was persuaded to take methotrexate. So far so good after three weeks. I'm still in pain with my hands and feet though. I wish you all the best and hope your trial drugs work for you so you can enjoy life without pain. Xxxxx
Oh bless you, so sorry to read its got you too!! I know exactly what you mean, i to was the same! Didn't want to accept it but i guess its one of life's challenges. I would love the natural way as i do think, i know meds help the pain but is this really good for my body?
I've seen a few mention this methotrexate, i had never heard of it, its doing good for you? Hopefully it maintains helping for you!
Thank you, me too! I wish you all the best too, let's hope we can both beat this condition! Life without pain would be a dream!.
Sorry you have been so unfortunate to be saddled with disease. I am 48 and have Rheumatoid Disease (Not just the joints affected the eyes, lungs liver etc) Secondary Sjogren's Syndrome, Depression, Stress and Anxiety, the latter 3 caused by my inability to cope with chronic Fatigue and from never seeing a doctor to 23 tablets 6 days a week and 31 on the Friday, today which is methotrexate day! I am so frustrated like you as I was a get up and go and get everything done and had a family who needed me. I cannot stand the fact that none of my illnesses are visible to the human eye and so therefore if they cant see it it doesn't exist or can't be that bad. I was suicidal on the 28/04/17 due to other things as well and now the DWP have informed me I am fit for work, If I was I would be working and not wasting my time with them. More stress which is not needed, as I worked even with the RA until it was no longer possible for me.
I attended a fatigue management course at my local hospital which was excellent and helps you understand what you have to do to get the most of of your day without crashing and burning. I would also ask your rheumatologist about exercise classes as you did mention sports but you have to be careful about how much you do. I like swimming which is excellent for the lungs and all the body muscles, the water takes your weight and it doesn't feel like hard work.
When I get cramp in my legs and my feet are on fire or can't sleep due to the restless legs, I started taking soluble magnesium tablets once a day and this has mad a huge difference to that, but I rarely get more than 4 hours sleep and it just becomes a vicious circle if you don't manage it well. Not helpful when your nearest and dearest don't understand either.
There was a wide variety of ages at the Fatigue Management Course, it was great just to know that you are not the only one suffering and feeling this way. I have a hydrotherapy bath which helps my joints, I listen to music as therapy and I also have a relaxation cd. If you do not rest, you cannot relax, if you don't relax you can't sleep. Do a little and rest, but don't fall asleep for more than 40 minutes as this will take you into a 2nd sleep cycle and make it difficult to sleep later.
If it all gets too much I go out in my car to a peaceful beauty spot and just take in nature and the beautiful surroundings. Life was already difficult before this and most days I think I won't let this beat me but others I just think whats the point! Then I look at my handsome 22 year old son who graduates on the 29/6/17 with a 1st Class Honours Degree and I remind myself that is why I carry on, my son has Autism and has battled hard his whole life, he didn't give up and neither am I.
If you can't find a local Rd group, when you are up to it why not think about starting one, there are a lot of people out there like you who think they are alone, young people are affected just as bad as the elderly, mines started when I was 40 just like my mum, but none of my brothers or sisters have it, lucky me middle child syndrome and now RD!
I hope you have a sense of humour as that is what gets me through most days. Keep talking Liam it's the only way to get answers and to get people to listen.
Thank you for your reply, sorry to hear this horrid condition also affects you! wow that is a lot of meds, how do you find taking all of them? Bless your heart.
With it being invisible is certainly frustrating the "well you look alright" really gets me, frustrates and upsets me, i may look like that on the outside but can tell you now i am far from it. So sorry to hear that you were suicidal, before this condition i could never understand why people would be that way but since having RA i have had suicide thoughts myself. never done anything and hope i never will but definitely thought about it, to not be in pain would be an absolute dream and i don't think anyone who hasn't had this could ever understand. I am glad you didn't follow through and i pray that you will be okay and stay strong, its so hard but life is so short and should be treasured albeit can be hard to have the will to go on at times. Horrid too think they would try make you work, i can understand why not and to think there is people out there who could work but sit and take the Micky and fleece the system (I am sure you know the type) are out these whilst poor souls like yourself who shouldn't get forced too is horrible!
The magnesium helps then? Is that prescribed or off the shelf? I try to take as many vitamins as i can. Sleep can be very hard, i don't get much more than 5h a night and often wake during the night, waking up is horrible and fist thing i do is take my meds.
That is interesting, do all hospitals have fatigue management courses? I struggle badly with this and would find that very informative. That sounds a good way to do it, cant remember ever feeling truly relaxed but if you can then that is good. I do love a nice warm bath.
I am blessed where i live with some lovely outdoor views which you certainly can get lost in, there is this place near me which has a lake and there is a little hill, to go there as the sun sets and watch the sun set over the lake is truly stunning and makes you think as bad as the pain is how truly beautiful the world is and how lucky we all are to step foot on this planet. I know what you mean, i have asked myself what the point is too! That is sweet about your son and well done on him, that is some achievement for any body to accomplish but with autism very commendable, you must be proud? Congratulations to your son and i wish him all the best!
I've seen one or two in my local area but unfortunately their meetings take place in the week during the day which is no good for me. Would be something i would like to do so would love to find something. Bless you, i have three siblings and im the only lucky one to get this! Seems we both been "unlucky" or maybe god chose us as out of the siblings we are the strongest? Who knows.
I certainly do, i do love a laugh, always have and hopefully always will. This can bring me down and make me not feel like it but i always try to laugh. A life with no laughter would be a very miserable place.
Thank you so much, it means the world to me, lets hope we can both improve and live happy, healthy lives as we deserve!
Hi Liam, I was 27 when I was diagnosed and also had the feeling of being trapped in a old person's body. Three years on no one in my life understands the pain, but at least I do a bit more which is what counts.
This site will give you the right perspectives on what your disease is because the ones from people who don't have it are pretty damaging in my experience.
Hope you're getting some treatment soon, I spent a few years thinking I would be able to do without, but I've learnt I can't and that's cool!
So sorry to hear you suffer with this horrid condition as well.
Not nice is it? Was my first thought " I'm 23, this is something people in their 80's get, why has it happened to me?" Yeah you are probably right, and in order for others to understand i suppose the more you do yourself the better you can explain to others, but still i don't think unless you have it, any body can truly understand.
Yes i am finding this site very humbling and educational.
That's key isn't it, you want to just say i can deal with this myself but its okay to ask for help and we certainly need all the help and treatment we can get, so unfair to have to live with this pain.
Best wishes to you too, i hope we can all get over this rubbish.
Have a lovely weekend Terri, thank you for replying.
I really feel for you , I found it really hard to accept , even having a full meltdown and refusing meds! But after a few weeks of downtime and joining here I have gradually learnt to accept this condition needs controlling!
I think reading other peoples stories and the lovely support that is given will really help .
You wont feel so alone and isolated.
I am on Methotrexate / folic acid struggling badly with nausea, am hoping it will settle.
I also have Osteo arthritis and fibromyalgia .. I had a total knee replacement just over a year ago.
Keep your chin up and use this site to gain experience and insight into this awlful disease.
Thank you, it certainly is hard to get around that this is what life is going to be like, and learning to have to live with and adapt to constant pain and limitations. I too had the meltdown stage and still come close at times but i'm trying my best to carry on and live life as best as i can.
It certainly is, been blown away by the response, support and information i have been given. Seeing how others have also suffered knowing i'm not the only one and others are in much worse way than myself!
Tiredness is a killer isn't it? Don't think i ever actually feel completely awake and energised.
How did the knee replacement go? Has it helped? Sorry too hear this condition has affected you too!
Thank you, i'm trying!! I am glad i have found this site with lovely people like yourself.
I am prescribed folic acid for the 6 days I don't take the methotrexate, I have only just found out that it is to control the nausea, every one else I know only takes 1 tablet 2 days after the methotrexate. I thought I was being overdosed on it but the locum Rheumatoloigist told me in May that is why I am taking 6 as well as lanzoprazole and a whole host of other medication.
I've not read all the replies so prob will repeat what others have said . I'm 27 but have enough ailments for a life time and it sucks! My body aches everyday but I look normal.
One bit of advice to you I would give is to try to maintain the best mental health that you can . For me I have depression and that certainly makes everything worse . I got into the pits of despair at one point thinking worst case scenarios.
Most people don't know arthritis can affect any age including kiddies !
I would say try to remain hopeful . No one knows the future and things may improve or stabilise. You can go through a long time feelings really grim then feel better .I hope you get the remission you deserve ( something tells me that you will be okay).There are new treatments coming out and there is nothing to say you won't lead a normal life even if it doesn't seem like it right now.
Lots of people have 'invisible' illnesses and these days there is quite a bit more awareness . You might find it handy to look on social media such as Instagram for other younger peoples stories with RA and other autoimmune conditions.
Thank you for replying, i have valued every message so please type away!
Im so sorry that you also suffer from this horrid disease. I know exactly how you feel, its not nice at all.
Mental side is defiantly i think something which should be considered as much if not maybe more than the physical, i have had some dark days, especially in the beginning. I do still get very down and frustrated and feeling useless and worthless but i try stay strong.
I actually on found that out on here, a person messaged me who was diagnosed at 12! how horrible! Something needs to be done, people should not have to live with this condition. There must be something out there, maybe a plant which hasn't been discovered yet has components which can aid us all, lets all hope and prey something comes so no more people have to suffer.
Thank you for your kind words and support, i can only echo that back to yourself.
Hi Liam, thought I was young at 48 getting diagnosed with RA.
I can totally relate to the fact that other people just don't get how deliberating the pain can be, I've only been diagnosed recently so have limited advice for you, but as I'm not due to see a NHS consultant till mid July, I went private and got a steroid injection, made a world of difference, was painfully as hell the day after as it was injected into the back of my wrist (my problem area) but after 2weeks I was and still am (7 weeks later) fairly pain free, not a permanent solution I'm sure, but it also pulled me out of a very negative mind set as well.
Bless you, so sorry to hear another pour soul has this horrid condition!
You are correct they certainly do not and to be honest how can we expect them too? It's something that can't be seen just felt by the unlucky person to have it.
You must be at the overwhelmed stage? I remember when I first started having this, didn't know what to think or do, does it get better? I'm not sure myself but you certainly start to learn to deal with (albeit you don't have a choice) glad to here the steroids have helped you, do you have to keep having them or just the one time?
The mind is the other part which I don't think is spoke enough about by the docs, for me it has affected me mentally as much as physically.
Thanks for messaging and welcoming me, very kind of you. Let's hope we can both overcome this horrid disease.
I'm not a complete stranger to this disease, unfortunately my mum have been suffering from this since aged 70, she's 82 now, breaks my heart to see her in pain. But she is my heroine, the way she's copes and keeps battling away at life :))....
So always had an inkling I might get it, but was thinking a few years from now.
Have a look at this website for treatments (arthritisresearchuk.org/art..., from your other posts I get the feeling your not aware of available treatments.
Treatment usually starts with DMARDS and non-steroidal anti-inflammatory drugs (NSAIDS) + Steroids
.....and if you don't get any results on these and you qualify, then you get the expensive Biologics.
I was on Naproxen, but have stopped taking them since my steroid injection has kicked in.
I've also started on Sulphasalzine (DMARDS), no side effects, but takes a while to do any good.
My mum has been through all the DMARDS, the only one that worked started affecting her Liver, and she's on her 3rd biologic now, 1st one worked but her liver readings went of the chart after a year, so they aren't always successful.
So I don't know if having a good idea of what might happen has helped me stay positive.
I was In a very bad way last month, use to love playing golf, recently took up archery, and had a very large social life involved with Salsa dancing (even been dancing in Norwich a few times) , but all that has come to an end for now. Spending to much time alone and in pain was not good for my mental health, thankfully my injection has worked for now.
I believe you can have up to 3 or 4 injections per year, I would recommend you get one if you can.
Oh bless your poor mum, I bet it does. I would hate my mum to have this, if me having this illness means no one else in my family will get it, then I would be happy for it only to affect me as would hate see them live like this. Bless her, mums are the best ain't they 😊
I think you are more susceptible if it runs in your family. I know what you mean, I literally just associated it with elderly people, how wrong was I!!
Thanks for that, I will have a look. Apart from the meds i am on and the trial drug your right, I only know what I've been taking. They have mentioned surgery but have kind of emphasised that it would be a last resort as complications could make me worse off. Being young they are hoping my body will be more Able to react and heal itself, who knows.
That's interesting, ive tried a few anti inflammatory pills but with no luck, I was on ibuprofen but had to stop due to giving me horrific stomach pains.
I tried Naproxen but no luck, glad to hear the steroids have helped you, I'm at hospital Tuesday, I may mention that to my consultant and see what they say.
I have heard of DMARDs, I think even my trial drug may be something to do with that, they all have such long words it's hard to fathom what on earth they are ha hah
Sorry to hear wasn't successful for her.
Trying to stay positive is certainly key, but much easier said than done as can be very overwhelming.
Horrible that this stops you doing what you love isn't it? Glad to hear you have been able to do other things though, that is good. No it certainly is not!
Okay, thank you for the info, will certainly have to enquire about that!
I have been diagnosed with CRPS, fibromyalgia and RA. I am 51 yrs old now but at 35 I was in very good physical shape when I began to suffer from these. I was a runner and played racket ball and lifted weights several times a week. I understand the mourning we go through because we know what we have lost and are continually missing out on as everyone else goes on with their lives.
I have been having trouble getting the RA treatment I believe I needed because my RA in sero-negative and I never show much inflammation in my blood work. I am on Plaquenil, Lyrica, oxycodone, tramadol, fentanyl patches and muscle relaxers.
I have recently been able to lower my doses of these (except the Plaquenil) because I am trying to focus more on what I can do to improve my situation. I am committed to do what I can instead of looking to find more drugs to add to my regimen. Diet and exercise is what I'm able to control so I'll do what I can.
I am allergic to gluten and dislike milk, so those were already out of my diet. After watching a movie called 'Fat, Sick and nearly dead' I was motivated to do something for myself. It's a pretty lame movie but if you've got 90 minutes to spare it shows how inflammation can be tamped down a bit by better nutrition. The movie lauds juicing as it can introduce massive amounts of good nutrients to your body without a ton of calories. And the idea of removing the poor nutrient foods and medicines that we are putting in our bodies and replacing them with natural products that our bodies need.
I did not have the will power to do an outright juice fast and I was not ready to invest in an expensive juicing machine (and there is no way I could get to the store every day and chop vegetables with my fatigue and crippled hands). Therefore I did a little research about fresh bottled juices and learned that the chlorophyll and the easily digested nutrients was what I was looking for. I began to drink two 16 ounce green juices each day, it must be green juice and the more vegetables, less fruit is the best. There are several brands and I don't know what is available for you (I'm in the U.S.) but I have been getting the Bolthouse brand Daily Greens. These juices are found in the refrigerated section in our stores near the produce department. It is an acquired taste but I've come to crave it. I don't say this lightly - it has been a miracle for me! After two days of two 16 ounce green juices a day, my fatigue all but disappeared, muscle cramping is almost gone and my joints are more flexible. I have been able to sleep better because I am more comfortable. I seriously had not had a good nights sleep in ten years.
I went on an out of town trip with friends and did not have the juice for a few days. On the third day I woke up and could barely move and did not even have the energy to shower. I stayed at the hotel and had my husband go and buy more juice for me. I missed two days of vacation with my friends before I rebounded to feeling as well as I had. I am convinced the nutrition in the juice is the reason for the improvement.
I understand that this will not help everyone but only those that need the extra nutrition but how will we know if we don't give it a try?
Hi Liam. I to am fairly new to this forum and already I have found the lovely people here a great help. I'm 34 and after struggling for 18 months I finally had the ra diagnoses a few weeks ago. I understand how you feel as everything u have described was how I have felt. I've struggled to get out of bed, to wash & dress myself & even need my husband to lift me off the toilet. Also I've had the comments of how I look fine. Looks can be deceptive. I have spent many nights going to bed and praying that I don't wake up the next morning but thankfully I'm through that stage now. I hope you find the help and support through this group like I have. Keep your chin up.
Very good of you for trying to make things better for others, but obviously you need to make sure you're able to live the best life you possibly can too!
The app is called my RA. It seems very good so far, you can add pictures and writing as well so you can almost use it as a journal, which could help to get out your feelings to ease the mental side of things too!
The mental battle is definitely made harder by the rollercoaster that RA gives you. Having no consistency to whether things are good or bad makes it really difficult to get your head around it sometimes.
Have you tried doing something other than going to the pub with your friends? Maybe suggest some plans that you feel comfortable with. I'm sure they wouldn't mind and they may even end up finding something new they enjoy. Maybe suggest things that have to be driven to to help them resist the temptation of having too much to drink aha.
Trying to enjoy the weekend, supposed to be racing my bike tomorrow but after being bed bound most of the past couple of months I may have been a bit ambitious in thinking I could take on a whole day of being out, especially given I've only ridden my bike a couple of times. Just had a walk of the track today and had to abort because I felt so exhausted. Think I was expecting to be able to just pick up and carry on but it's difficult when you've been doing so little when you've got so weak. Determined to try and complete one lap out of the three required just to feel like I haven't let RA beat me completely. Hope you're having a good weekend and enjoying the things you are able to do rather than focusing on what you can't!
Yeah I get that and of course I want whatever I take to get this pain gone! But to know I'm doing something which may help someone else, would be amazing if through me doing this trial someone else is able to get better because of it.
Thanks for that, I will download it an have a look 😊
You sure are right there, I've had quite a busy weekend, wasn't too bad Saturday and bearable during the day yesterday but last night was horrific, just never no what your gonna be like day to day. Certainly is difficult to get your head around!
Yeah we do other things than just drink lol but with being summer and better weather, a lot of BBQ's and stuff with generally end up in everyone drinking haha
It was a good weekend thanks, hope you were able to get out on the bike and the pain wasn't too bad!
The one thing I have found from this site is the massive support you get from people who truly know what you are going through. I was diagnosed 18 months ago and still trying to get the meds right, when I was then diagnosed with polymyalgia as well. I already have osteoarthritis and have had both my knees replaced some 71/2 years ago. I thought polymyalgia was for over 60s. I soon learned I was an early starter at 53.
I am now on a cocktail of medication, that if I'm honest am not looking forward taking for the foreseeable future. You are right about no one asking about your mental health. It would be nice if they did but I suppose that's not in their remit.
I am a nurse so just have to take each day at a time regarding work. I think that is so important to understand. Do what you can whilst you can, don't over do it and be honest with yourself. The spoon theory is a wonderful way to look at it.
Just remember we are here if you need us, even if it's just to have a moan.
Yes, it certainly has been that so far, so horrid though to know so many other poor souls have to live with this condition. Is nice to have a platform to talk to others and gain a further understanding.
Glad you managed to make the most of your weekend! Sometimes on a Sunday evening and you're exhausted and in agony you have to make the decision that it was worth it because you got a good weekend out of it! Although we'd all love to be able to enjoy our weekends without that feeling at the end of it it's definitely better than the whole weekends spent in bed sometimes.
Bbqs are a great event that you can take at your own pace. If you need to you can sit and relax in the shade, or if you're able to you can join in the more active parts of it.
I did manage to ride, although at times it felt like I was climbing Everest and just wanted to curl up on the floor and cry! But coming last is better than not trying at all right? Though it's difficult to see people I used to be right up there competing with and me struggling to complete it at all. Will fight back though!
Thank you, Certainly would be nice to be able to enjoy your weekend and not have to pay for it!! But i deffo would rather try enjoy my weekends, enjoy life and suffer because of it than just sit at home in less pain but no fun! (Although Sunday night as good as weekend was the pain does make you question!) I do enjoy the odd lazy weekend though hehe
Oh good, glad you managed to get out and enjoy yourself! Lifes to short, especially with what we have, pray for cure but ultimately could only get worse so i suppose we should enjoy what we can while we can!
I completely agree, coming last deffo better than not taking part! Good attitude that Kirsty!
Sorry late reply, i hope this message finds you well.
No problem, hope this heat isn't causing you too many problems!
I joined a page recommended by someone on this thread, and just wanted to second the recommendation as it is really useful. It's a Facebook group called authurs place and it's specifically aimed at young people with arthritis. For example one post was people discussing comfortable sandles for
Hi Liam Welcome, So sorry to hear you are only 26 and we have all been through RA issues and you have come to the right place for help & advice and a large adopted family, I've have RA for 5 years and I am on the double lung transplant list and I am on Oxygen 24/7 but RA runs my life but when it easies off I'm up and out, Stay positive Liam and ask away someone will reply. Mattcass
I'm happy to see all the love thrown your way I haven't read all the replies but know that there are many great people on here with loads of great advise and shoulders to lean on.
I'm curious how you could have been diagnosed with RA for the past three years and not heard of Methotrexate until just now? Could it be that your AS which effects the lower spine is the major concern right now?
I understand that MTX and other DMARDS don't work as well for AS but for the life of me I cant understand how you don't qualify for some of the Biologics especially since after 32 odd weeks you haven't noticed a big change with your trial medication.
I hate to see you suffer (and at such a young age). I thought that the process of obtaining Biologics was a bit easier for AS but clearly that isn't the case.
Not sure this link will help and AS may not be your main issue right now but maybe you can discuss with your doctor and see what his/her thoughts are. It's strange to me that you weren't offered MTX if RA is the main concern.
Isn't 32 weeks quite long to be sticking to a trial that isn't really working? Perhaps you have 20% or more improvement and it's enough for you? Not sure I would be satisfied with that and would probably be asking if that is as good as it gets.
Yes its been overwhelming, really couldn't imagine how much response and lovely comments i have received!
Who knows! My main bad point is my lower spine but the pains rise up my whole back, have it in my legs and wrists. I haven't heard of Methotrexate No, to be honest it took along time to even get a MRI to eventually get diagnosed. For me it seemed because of my age they just think exercise and healthy diet my body will react, but i've done all that and not much has changed!
They were hoping doing this trial would help remission, i am 12 weeks away from the point in the trial where they gain everything you have done and decide whether you "qualify" for the next stage or stop the drug and try something else, i agreed to stick at it for 12 weeks seeing as come this far and will go from there.
Thank you, its not nice no. But horrid to know that anyone has to suffer from this, no one deserves to no matter what age, but certainly sucks at my age. Not something i ever imagined would have to deal with. Not in my 20's anyways!!
Thank you for your kind words, support and info. I will have a look at that, i take your point on the trial but thought might aswell stick for 12 weeks and who knows, maybe it will kick in? Can only hope!
Hope you are doing well and wish you the best too.
Having read your comments I think you would be surprised just how many young people including children suffer from RA and OA.
Being an old fogy, hehe, mine started as OA when I was 8 and diagnosed when I was 12, being told by the consultant that I was suffering from premature old age, 50 years later it is now diagnosed as Juvenile Idiopathic Arthritis and it generally does not advance beyond the orignally affected joints, the ones in the feet for me and I had to wear specialised shoes with supporting bars and inserts, they were lethal on the stone staircases at school, many times I went down faster than intended :).
I had to give up all sports involving my feet, rugby, track running and cross country. I could only do sailing and canoeing and suddenly had to learn how to swim as I had never bothered before to learn to do so.
What no one knew, including me at the time, was it was the start of something that was going to get much worse, there was and still is, no timescale that can be given for the subsequent symptoms.
The minor ones appearing in my 20's, 30's, 40's and then the more serious and painful ones in my 50's onwards.
I feel you were lucky to get a 2 year diagnosis, it took me 3-4 years and after being diagnosed with Fibromyalgia, which really annoyed me, I decided I would do my own investigation as I was fed up with being given symptomatic diagnoses of each development.
2 weeks of daily research and I finally stumbled upon the real cause of my problems, it was like a tick list of symptoms with 2 left to get, AS and glaucoma are the last two.
It helped me that my siblings all have some of the same symptoms which meant it was genetic although there was no history of it in the family. I presented my conclusions to the last consultant, having seen 6 different consultants, she agreed totally with the documents I presented and my final diagnosis. The family had a genetic condition called Enthesitis.
It had not been helped that my very first symptom was never recorded on the GP card system and all the consultant letters at the time have been lost. I spent a lot of time tracking the old cards down and also found that the original consultant notes and xrays are in the Hampstead metropolitan archives.
Having a rare condition with less than a handful of specialised consultants and half of them only out of interest, makes it very difficult to get to the bottom of the underlying cause, it is frustrating that every referral means another 18 week wait before you see someone.
After my recent epidural the consultant wanted to do a review and I checked to make sure that the injection would still take place, he said yes but due to a (English) language problem admin dropped the injection in favour of the review, not as well as. So more hassle, phone calls, frustration, panic, stress and finally they checked with the doctor then corrected it, not at all helpful.
My own GP admin recently decided not to produce a script, the electronic system said it had been done, because THEY decided I was seeing the doctor the following week so it wasn't necessary. My complaint to the Practice manager got the response, "we called you", not with my phone logging and call recording kit they didn't, so then got the woolly response of "next practice meeting" we will make sure all reception know that they MUST inform patients, sometimes I feel they are just getting at me, because it is very worrying if everyone is getting this treatment or lack of.
At least I now know what I have got and have to deal with the 8 symptoms I currently have, which also means I know exactly how it will progress and can monitor for any further degradation in my condition, not be caught out with another symptomatic diagnosis appearing in the future.
The result is I now take a concoction of pills, creams and injections to manage the various causes and here is the list;
For Enthisitis and RA:
Citirizine and Beconase - Hayfever relief
Paracetamol - pain relief
Codeine - pain relief
Naproxen - changed from Ibuprofen as it is not slow release, l needed to get out of bed.
Omeprazole - to counter the nasty effects of Naproxen or Ibuprofen, your stomach pains
Pregabalin - Fibromyalgia
Movicol - to counter the nasty effects of codeine, you don't want to know.
The blue tablet - to counter the nasty effects of all above. see note 1 below.
Betnovate - Psoriosis
Hydrocortisone - Psoriosis
Epiderm - Dry skin
Cetomagrogol - Psoriosis
Fucidin - extreme Psoriosis
For Prolapsed disk:
Steriod epidural - spinal injection every 6 months.
Calcichew - to counter the nasty effects of the steroid on my Osteopenic bones.
I had a TIA as well so:
Simvastatin - Atorvostatin gave me violent morning/walking cramps in my calves
Clopidogrel - Anti clotting
Diazepam - For muscle spasms and when I am waiting for the next epidural.
I read up about the trial you are doing and it has very constrained requirements for participants, my FM would rule me out and the female ones even tighter. I hope it works for you, the list above shows you the current medication I am on and have been through various ones, since MY diagnosis 2 years ago, to get to a regime that works to a large extent.
I have been through all the evil DWP processes before they finally surrendered and realised they couldn't leave me stuck indoors forever. I can't go for my old long walks along the River Thames in Richmond with all the natural beauty around me any longer and I miss that a great deal, I live in probably the most beautiful borough in London, surrounded by green space and history.
Now I have finally retired I make use of my bus pass to get me out and about, I enjoy socialising with anybody, even a Brexiter I draw the line at a Tory hehe and always enjoy a good pint of ale, joke and laugh, even if it isn't PC. It is amazing what people will put with because of my age
I have a glass jar on my coffee table and go round the flat every morning gathering up the marbles that I lost the day before to put in it, not the only joke item on my coffee table though.
I am failing apart from the outside, skin, bones, ligaments, tendons and cartilage, all my internal organs are very healthy, so I will end up as a jellied lump wobbling on the floor, by then the great matter will have gone west as well so back where we started as an amoeba.
Joking apart, I agree with your comment about "man" thing, I don't show the pain I am in, in public, I just wince when out of sight, I try to keep my life as normal as possible and keep to my word when I arrange to meet people, only once have I had to call it off and I didn't like doing that but I couldn't move.
My biggest social highlight is the 6 monthly injection as it wears off early in month 5 and I am in agony. I always try to make my own way to appointments, it is part of my exercise regime otherwise, my still very good, muscles will waste away.
You will eventually find a medication regime that works, unfortunately it is a case of trial and error before you finally get the right one that reduces the pain levels, you might be lucky and actually get a cure, science is evolving rapidly.
It is with regret that we don't actually have a national NHS any longer, as all the money goes down to unelected CCG's and my own CCG will no longer perform the operation that I have had on both hands for Dupytrens (Vikings Disease), Hounslow next door is continuing to do so and it only works for 5-10 years, if I am lucky they will be doing it again in 7 years time or I will be able to hold anything.
Note 1. According to the Daily Fail today a research study has found that men (it is only men) have better cardiovascular systems with more sex than those that get less, thank god for the blue pill. Sorry if anyone feels offended, it is my weird sense of humour and that keeps me going. A laugh a day keeps the doctor away. My failing memory has its advantages, after all it means I meet new friends every day.
Well this was a very long, sorry I made it even longer, potted history of my life, I still campaign and champion the underdog, helping others when they have to face the PIP form filling and finally the inquisition. My legal knowledge is expanding rapidly and just because I forget it, again, just means I go back to all the notes and legislation stored on my computer.
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How long have you been living with RA?
I just found this link after years of living alone with RA
RA and the pharmacist
RA and fibromyalgia 
