I was diagnosed with RA around 8 months ago.. I can’t find words to explain the struggle I’m in..I’m not on any medication by choice, I’m treating myself with being vegan and herbs and my last blood test shows I’m in remission but I don’t feel in remission... every day it’s a struggle.... still hurts all the time. My brain is foggy, I’m exhausted all the time and by 4pm I’m ready to go to bed and THIS IS NOT ME... I’m so so angry... someone please tell me at some point somehow it gets better or at least bearable...
Please help... can’t come to terms that I have RA, I ... - NRAS
Please help... can’t come to terms that I have RA, I don’t know how to cope, how to be me again, how to live, I feel completely lost...
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forislava
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I’m so sorry you have RA and are really struggling. It is hard to come to terms with the diagnosis initially but gradual acceptance is possible.
There are some very effective RA drugs available and it’s unfortunate that you have chosen to avoid them. It’s almost certainly why you are suffering so much and without such medication your joints are being continually and permanently damaged. And the brain fog and fatigue are all part of the RA package.
Please reconsider your decision and ask your Rheumatologist to start you on medication immediately. You will find that continuing to eat healthily will help too but without proper RA drugs I think it most likely you will continue to suffer.
After trying several drugs I’m now on one that’s working really well. I no longer need to take painkillers regularly because I have little joint pain or swelling, not as much brain fog or fatigue now either. I’m eating healthily and take some supplements, try to keep down my stress levels, sleep well and rest and relax when I need to. This combination with my meds works well for me and I hope it will do for you too.
Thank you for sharing and getting back to me, I truly appreciated... I thought I could push through too - I'm one of those control freaks who knows everything and does everything - I used to do sport gymnastics, I am a runner, well, was a runner and loved hitting the gym, and now I have to learn how to pace myself... this is such a novelty to me that I simply don't now how to do it... I'm getting there though, because when you crash you don't have much of a choice. Did the medications helped with the fatigue?
Yes, when you have your RA under control with the right medication for you the fatigue is greatly lessened and for some it does disappear. Plenty of RA sufferers go on to run competitively and fundraise for NRAS. In the short term, whilst you are waiting for the effects of the RA drugs to work for you, a short course of steroids will make you feel so much better and give you back your energy (think Duracell bunny!!).
Your GP can prescribe the steroids (Prednisolone) immediately for you but it's probably best if you ask the consultant to suggest the dosage and then he/she sends a message to your GP to prescribe them for you. May I suggest a phone call to your patient helpline/rheumy nurse or phone your consultant's secretary to get the ball rolling.
Meanwhile if you want to find out more do look at the NRAS and Versus Arthritis websites which are some of the best sources of information for those in the UK, and offer advice and support.
Here's a link to get you started : nras.org.uk/how-is-ra-managed-
So many others have responded to you because we know how it feels in the early stages so can understand that you are finding it so tough. I hope you feel that we are offering you our best advice and support from our own personal experience. But, I believe, knowledge is power so informing yourself and taking control will make a huge difference for you and to how you feel about the disease. And I'm sure your family will be very supportive and want to do all they can to help you.
I already had a one shot of corticosteroids and didn’t do any good, it simply made me crazy, I mean crazy crazy, especially emotionally, didn’t help with the pain at all.. so I’m not sure I’ll go this way again but let’s see what the doc will say. Is prednisolone milder than the corticosteroids? I know they are basically very similar and both are steroids essentially but just asking. Thank for the link!
I'm not a medical expert I'm afraid but the shot will be a high dose and is methylprednisolone acetate whereas the tablets are just prednisolone.
I woke up one morning unable to move and had to be taken to hospital in an ambulance. I was given a shot into each shoulder and was soon able to move again. Then I could wash, dress, brush my hair, walk, get in and out of bed go up and down stairs, and cook. Before I could do none of those . The shot can also be given intramuscularly. The prednisolone tablets are given in various dosages, determined by the doctor. If you had a bad reaction to the shot you may find the oral tablets work better for you.
I suppose it really depends how desperate you are to be rid of the agonising pain and debilitating fatigue as to whether you will consider asking for prednisolone or RA drugs. But I'm sorry to have to tell you that diet alone is highly unlikely to alleviate your pain and other symptoms. I wish it were otherwise because you are obviously suffering greatly at the moment and I do sympathise as I know what that's like.
This is excellent advice!
Poor you ... I won’t lie it’s not easy. I always believed I could beat this disease how wrong was I . I have never been someone to let bad health in the way but RA is different . It’s an individual and complex disease and each persons experience is different. I thought I could push through a flare even with a chest infection with disastrous results. I ended up with cytokine storm which ended with anaphylactic shock kick starting a dramatic change with my disease and still not settled after 2 years.This was a wake up call. I now listen to my body and my Rheumatologist . I don’t want to struggle through life or sit on the sidelines I want to participate in life so I will take the meds so I can have some quality. Things are getting better but I’m not there yet. There are so many people who live a full life but it takes time to get there .
You have decided not to go down the medication route and are struggling. Why not try the medication and if it’s not for you you can stop at any time at least you tried. I wish there is one pill fits all but it’s not that easy. Trial and error healthy eating , exercise , pacing yourself all help manage this disease. I hope you improve
forislava• in reply to
Hi J1707, thank you for your reply, this really is an amazing place and I'm glad I've found it... I was exactly the same as you, I truly believed that I'll beat it too. I pushed through so many things so I thought oh well that's just the next obstacle.. as you said how wrong was I. As I mentioned in one of my replies I am a very athletic person, used to do sport gymnastics, I was a runner, I had energy to keep going every day for 12 hours straight... Now I have to re-built myself as a person, I feel my identity ha been taken from me and I've no idea how to become exactly the opposite I was before... As my husband is saying I don't have a switch off button, I keep going until it's done no matter what. "Dying" is allowed only after I've completed my tasks, whatever they are. But after so many of you are giving me consistent advice to give it a go I probably will, I don't think I have any other options left and I really want to live my life as fully as possible. Once again thank you!
• in reply toforislava
Anytime.... I too was very physically active and there wasn’t enough hours in the day to do everything I wanted.
You have the advantage. You are young and will still have your underlying fitness. There are people who have posted on here that they 95% back yo normal thanks to medication and are doing long distance running etc the key is to know your limitations and listen to your body.
Please keep in touch .. you will get there x
forislava• in reply to
Thank you... it’s nice to hear someone saying to me that I have an advantage... I don’t consider myself young young (I’m 40), but you are right, I have my underlying fitness and I know for a fact that muscle memory is real... I’ve recovered after collapsed lungs twice years ago and two c-sections... RA should be a walk in a park🤥 I know I sound more positive but I’m not really... playing the game fake it till make it...
Hello florislava, It will get better, you will adapt. I spent last winter on the couch taking morning and afternoon naps. I would sleep all night but wake up every hour in terrible pain. I too didn't want their medicines but I ended with a total of five weeks of methotrexate and two shots of depo medrol, months between shots, (80ml, a thigh shot). Each time I had a shot I could move the worst pain sites more, this led to more exercise and movement and now I just take 1.35g tumeric root powder and 150mg of turmeric extract (three pills, truvani brand) it reduces swelling beautifully. I have been on a nine month journey and today I can say that I don't have the brain fog, I want to do things again and for my mild pain I take one celebrex 100ml every other day if needed. I think the being able to move and increasing walking and cycling (trike) daily helped out tremendously. Hard at first since body says no. lol Rheumies say I have Ra, but I think it's Psa, at first they said it was Polymyalgia Rheumatica. Very painful times, never want to do it again. I can now squeeze my hands together and there is no pain. I am a vegetarian. When first diagnosed I ate some meat for a week or two hoping it would help. Didn't help. Not moving for months really atrophies your body strength, so now it's buildup time. Go slowly. Maybe one day I can get in and out of the tub without contortions. lol You can do it! When things are unbearable I think the depo medrol shot was a lifesaver. It gave me hope( I actually think the next day after my first shot my depression lifted), hope is a powerful drug. Good luck.
It’s really not easy coming to terms with being diagnosed with a chronic disease. You do have ro go through a sort of grieving process to accept the new you. It took me well over a year, and even now I have small blips where I get angry or frustrated at having got this. So don’t beat yourself up about feeling this way.
But from being in a similar place to where you are now, I am now 95% normal. I have to look after myself, eat properly, exercise and sleep. However that’s now part of my new life.
I tried all sorts of diets with no affect on my RA and the thing that worked was the drugs. If you had a broken leg would you refuse to have it set back in place? So maybe try to think of the drugs as a temporary splint. Then when you feel the time is right talk to your rheumy about tapering off them again. That does seem to be more likely to work than just diet.
Have you seen a Rhumatologist ? and had any advice from a medical professional. I just wonder why you've not given any medications a chance to work ? I'm surprised that your blood shows remission after such a short time and with no medications.
In my book there’s a difference between low levels of inflammation according to one blood test and real remission! What do you think?
Not sure what you mean ? and I notice in one post you refer to 'light chemo' but a lot of medications have multiple uses in different strengths. RA is not a death sentence, I've had it for many years and I have no pain or swelling or stiffness now due to the effects of very good medications. It is progressive and frankly I'm not prepared to risk the effects of RA on my organs, blood etc. its not just about pain and swelling. Its is a shock, but its a condition that I live with not suffer from. I can think of a great many other illnesses that are far far worse. I'm not disabled or even less able as the medications work and work well for a great number of people. So I'm not sure what you're seeking really as remission is surely the target for everyone with RA as it has no cure.
I don’t think you meant to send your reply to me!
I totally agree with you Medway-lady and could not have managed without my RA meds as I was totally wiped out by it’s onset and could not have carried on living on my own. Now I lead a relatively normal life thanks to my RA drugs.
Sorry your right x
Yes, I’ve seen rheumatologist, one of the best they say in Radcliffe hospital, yes they gave me advice but also told me that the potential drugs might damage my liver and I have to have check ups every 2 weeks... This scared me to death. My test shows remission so quickly because I became vegan - this is coming from a mid I’m rare steak with a glass of wine girl but never mind
- I also don’t eat gluten, sugar and night shade vegetables... I’m also juicing but I guess I get sluggish on my regime or what I did was simply slowing it down. I’ll get back to completely clean eating again, but will see my rheumatologist again, if this thing is starting to damage my joints than I’ll take whatever they give me... I just feel completely defeated...
• in reply toforislava
Good decision it won’t hurt to talk to your Rheumy. Don’t forget it’s not just joints this disease attacks unfortunately it is the only physically visible one. X
Its usually check ups that decrease in frequency and a hell of a lot of drugs can damage you, they always tell you worse case scenario but personally I think you're so wrong in making a leap in construction between diet and going into remission. I think this is all sounds very odd but then again I don't know of any dirty food either. As my mum would have said if your hungry you eat. BTW I'm diagnosed Celiac its never affected the RA. I wish you well but frankly you you're very lucky to see a Rhumatologist in these days around here as no F2F appointments at all. Finally if RA was affected by diet do you seriously think that the NHS would've people a diet sheet and wave goodbye. It'd be a lot cheaper than the wide range of medications offered to relieve the symptoms and by the time you realise the damage its already done so whatever you take it won't rebuild the dreadful deformity your risking. Oh well I'd add that you could read up on the medications on one of the leaflets on the NRAS website. but if your set on just a diet approach then good luck.
Thank you all for your replies, it really helps as even though my husband gives everything he’s got to support and understand me I don’t want to share my darkest thoughts with him... he’s worried enough... I was barely able to walk when I was diagnosed and now the pain is only in my wrists and fingers. There are occasional pains here and there, but nothing serious. I’m fully mobile now, I can walk 5 to 10k a day, still have morning stiffness but now the pain doesn’t go away. It stays there all the time, it’s not excruciating, it’s not unbearable, but it makes me slow, I drop things and it’s driving me crazy! When I started the herbs the pain dropped from a 100% to 90% so that’s my hope... I refused medication because I couldn’t believe the side effects, it’s basically a light chemo, this scared me to death... so I said no, went my own way and now the docs are saying I’m in a spontaneous remission whatever that means... I did another blood test few days ago, results should be ready shortly to see if anything changed and I’ll be seeing my rheumatologist shortly too so will make a decision afterwards how shall I continue with the treatment...
Emotionally I’m a wreck... and I don’t know how to cope with that part at all. Sometimes I just cry for hours or stay in bed all day. I have two beautiful children and I can’t be the mum I always was anymore. My husband looks after our daughter mainly and during the night because I can’t pick her up with stiff hands and changing a nappy it’s quite the challenge... I know it’s stupid and irrational, but because he spends more time with her (she’s 1,5 years old) she is happier to see him more than me and this is killing me... I really know it’s normal but I waited so long for her and now I can’t take a proper care of her... had 5 spontaneous miscarriages before her. I also have a 9 year old boy and he is aware of my illness and I’m going mad that I’m going to somehow damage him with the mood swings, seeing me crying, although everything is explained to him so he can understands..
I’ll give a serious thought about the medication and will stop rumbling..
So sorry to hear of your symptoms I think alot of people can totally relate to you.
I would be asking why the Drs say you are in remission when you clearly are showing signs of active disease.
It will help if you can dissociate the RA drugs from their other uses, the dose we take for RA is so much smaller than for cancer therapy and it will potentially change your life for the better. Sometimes the road ahead in finding the right DMARD for you maybe winding and bumpy but at least you will be in your way to getting relief . Personally I would act now before the choice gets taken away.
Take care x
Yes please please please do talk to your consultant about proper RA medication because you have so many symptoms of the active disease as others have said. Do tell your consultant about all your symptoms because the blood results never tell the whole story as we can assure you.
RA can affect your lungs, heart, eyes and other organs if not properly treated with disease modifying drugs; it’s not just about joints.
Please look on the NRAS website for lots of information on how to cope and live with RA and don’t be frightened of trying the drugs your consultant recommends. Many of us have few side effects but are willing to put up with any in the short term so we can get back to some semblance of a normal life.
A short course of Prednisolone would help you to feel so much better until the proper RA drugs work their magic.
Please believe all the replies you have received & seriously understand .....all the time you refuse medication your joints could be being irreparably damaged.
You say you want to care for your daughter and play with your son..... so please take the drugs......we would all love to throw our drugs down the drain...... but we understand the price we would pay if we did....& it’s a price too far.
• in reply toforislava
Dear Forislava,
I'm sure most people on this site will understand your feelings because the diagnosis is devastating and the pain and disability at the start are overwhelming and shocking. Many of us were like you, feeling useless, hopeless, constantly crying, but please, please take notice of all the people who are telling you that it does not have to be like that, the drugs are not nearly as bad as feared for most of us and if they are, there are plenty of alternatives.
The "gold standard" drug is methotrexate. It has been used for decades and plenty is known about it. Compared with cancer patients, we take tiny doses and for a large number of RA patients it works! Give it a fair trial (6 months, maybe) and if it really doesn't suit you, discuss other options with your rheumatologist.
To tide you over before the MTX gets working, your consultant would probably offer you Prednisolone. My personal recommendation would be to take it as it got me out of the situation you are in currently, absolutely in despair, unable to get out of bed or wash and dress without help, constant crying. If you take it for longer than two weeks you have to reduce it very slowly, but honestly I didn't find it that big a deal. I took a medium dose for a couple of weeks. It honestly changed my life. Okay, it might have been "chemical happiness", but it was infinitely preferable to dark despair. I continued on a very small dose for 3 months and finally tapered off it completely over 5 months. I haven't taken it for 10 months now. The MTX is working and I feel really well. Of course. it might go differently for you, but you haven't much to lose by giving treatment a go and if it's successful, your whole family will be happier.
I expect it has been explained to you that RA attacks our internal organs if it gets the chance and that some of the damage is "silent", i.e. the patient is unaware of the damage being done until it has become very bad. That's another reason not to leave it untreated.
Many people who are being treated lead lives that are very close to how they were pre-diagnosis. You don't read about many of them on this site because they are just getting on with their lives. Please give yourself a chance of being one of them.
Sending you all good wishes.
Lolabridge• in reply to
So true and excellent advice.
I know this will probably sound very hard hearted but there are people all over the world with really, really horrible things wrong with them - much, much worse than Rheumatic Disease, people who have children and even children who are at present in agony and have no future at all.
If you read through other posts on here you will see a lot of people on here live in awful pain and I say that as someone who is in a lot of pain right now, I’d love to be able to walk 5-10k a day.
I completely understand why you don’t want to take medicines - I take meds for my RD but rightly or wrongly I’ve stopped taking the bisphosohonates I was prescribed for osteoporosis, like you I’ve moved onto diet, vitamins, minerals and weight bearing exercise for my that . I found the osteo meds very scary and I definitely don’t want to have osteoporosis but that’s it - I’ve got it, just like you and I and all the others on here have RD -
Rheumatic Disease is no joke for anyone and to me it feels almost like the death of the person you used to be - osteoporosis definitely does - but please for the sake of your poor husband and children you really need to stop crying and staying in bed all day. It won’t do you any good and it must be absolutely horrible for your son - he must be worried about you
I know, I know... you are right... all I’ll say is that I’m incredibly happy that this is happening to me, not to any member of my family... I’m sorry if it sounds I’m complaining for nothing, but I’m loosing myself, I’m loosing my identity, my abilities and I have to accept that and I can’t. I know I have to walk/move otherwise it gets worse.. I’m an ex gymnast, runner, fitness maniac... walking is like... total defeat. I’ll never experience the joy and satisfaction after a 5 mile run drenched in sweat and I know how this sounds in the contexts of what you are saying - it could be much much worse, I’m simply not ready to give up... I’ll see my rheumatologist again, I promise. Thank you for your reply!!
Forislava, I'm really glad that you sound much more positive today, you really were at rock bottom earlier in the week weren’t you.
I see exactly where you are coming from - my life and the things I enjoyed doing came crashing round my ears in 2012 when I developed Graves’ disease. I went from having loads of energy to do serious long distance walking, cycling etc to barely being able to stand up. That was followed two years later by inflammatory arthritis and now this year I broke my wrist which pretty much took care of the rest of my less active hobbies then I discovered I’ve got osteoporosis. I’m in my 70s so I’m fighting against age as well as the other things.
I often think ‘where is the me I used to be?’
On the plus side you sound a lot younger than I am which is awful for you but which is also good in a way because you’ve got time on your side.
Be aware though - no one told me (and I think all the departments I dealt with must have known) that my inflammatory arthritis and it’s treatment and my thyroid problems and their treatment, plus a family history were markers for osteoporosis. Stupid old me didn’t realise any of that and so didn’t think to ask even though my Pilates teacher kept saying I should ask for a bone scan but I didn’t
Also be aware that things like steroids and PPIs that you may be given as part of your treatment don’t do your bones any good. Had I known that I could have done more to look after my bones - I would have asked for DEXA scans for a start.
So once you start treatment take a real interest and ask questions about everything, you could ask for a DEXA scan so that you know what’s happening with your bones (hopefully nothing) but don’t be caught out like I was.
I hope that once things settle down for you, you can regroup and will be able to get back to doing the sort of things you love or else find something equally good to take their place.
Be kind to yourself though, you've had a terrible shock but anyone who can cope with a 5 mile sweat drenched run is made of tough stuff so once you’ve got over the shock and had a chat with your rheumy (tell him / her what you’ve told us so that he / she knows exactly what you’re going through) fingers crossed things will get a lot better for you. Good wishes to you and your lovely family.
Sad but true forislava the only way to relieve your symptoms or “get better”as you put it..... is to take the DMARDs-disease modifying antirheumatic drugs.
If you want to get back any semblance of your former life, just listen to your rheumatologist.... accept that you need to take the drugs he prescribes for you, and hopefully you will find your magic formula very soon. But it won’t happen overnight.
If you look back on this forum at people who tried to control their rheumatoid arthritis with what they eat ....I’m afraid you will be disappointed because lots have tried & failed....of course eat a vegan diet if that is your preference but I’m afraid it won’t help the symptoms of rheumatoid arthritis any more than a normal healthy diet will.
Think about it do you honestly think the NHS would spend so much money on the expensive drugs we take .....if rheumatoid arthritis could be controlled by what we eat?
The sooner you accept medication is necessary to control rheumatoid arthritis the sooner you will start to feel like your old self again.
Good Luck!
Your post concerns me forislava. I am sorry you are struggling right now with your diagnosis. We have all been there believe me. What worries me most is how you are trying really hard not to succumb to giving medication a try. You are clearly very unhappy because you are in constant pain, to varying degrees and at the same time worrying about the future, your children and your husband. You are in a viscous circle. The key to breaking the cycle is taking steps to improve your condition by giving the medication recommended by the rheumatologist a try. You can stop if you have any bad side effects and try something else. Many of us have had lots of different medications some have worked some haven't but if you can find the right one for you it will change your life for the better. You have been in tears because of your situation and can't continue like that indefinitely because the longer you delay the more damage to your health and wellbeing will be done and that of your family. I know I sound preachy but it's only out of concern for you.
Dear Forislava, I feel your pain - it's so hard to cope with isn't it, when you're first confronted with the idea of a chronic condition. It does get better though, I promise.
I think everyone has provided some very good advice, and I would just *urge* you to consider starting on some of the excellent medication available now. I always avoided taking medication, even painkillers, and lived a healthy vegetarian lifestyle but this disease cannot be underestimated - please bear in mind that stopping damage to your joints and organs now will give you a much better outlook in years to come.
I resisted taking methotrexate for ages because of the 'chemo' tag - but the doses are minute in comparison and thanks to methotrexate and hydroxychloroquine I have gone from crying in pain and being unable to hold a fork at times, to virtually flare free.
Another vote for DMARDS - I count my blessings that these medications are available. I'm now on 3 of them about 18 months after diagnosis, doing well and feeling very lucky to have modern medicine at my disposal.
A diagnosis of RA is very difficult come to terms with, we all have our stories to tell on this forum, some heartbreaking, so we do understand your pain, both physical and psychological.
From your message your diet and lifestyle changes are clearly not providing you with what you need or want from life. Your best chance at living a reasonably normal life and being a good mum is by taking RA medication. Diet and lifestyle changes may provide some relief for some, often only in the short term and rarely preventing long term joint destruction and long term disability, so you are most likely putting off the inevitable in this respect.
Yes, the side effects of meds can be challenging until you find the one that works for you, side effect free, you may of course experience no side effects, you won't know until you try them. In the long term medication is your only option for the life you seek.
Hi I was in denial at the start 4 /5 years ago..refused the drugs I was given a steroid injection and me been clueless thought I was ok...well 3 months later I was back cap in hand...it’s is a battle for some... but mostly it isn’t... so do yourself favour and take the drugs or your life will be hell without them.. and get your depression under control.. goodluck . Xx
Hi there, so sorry to hear you are in a bad place at the moment. I echo what the good people have said .. some of our most experienced people here .. above re getting some medication to protect your joints, as if you resist you could find you have a lot of joint damage. That happened to me initially years ago as I was told by a GP I had a rheumatic virus as I was not showing rheumatic factor in my blood and didn’t for nine months. Immense pain and stiffness but not swellings or hot red joints at first. Then R.A. came on worse with a massive bang. I tried herbal meds and was told by a very experienced rheumy .. they will lower your inflammation (they did and I felt great) but won’t protect your joints. I also had steroid injections and thought I could get by on those but they are a stop gap and dampen down the fire as such as they wear off after a few months. The difference effective rheumatoid meds can make to your life is really very, very good. Don’t end up in bed for most of your time, immobile and in agony and potentially putting other parts of you at risk too as it is a systemic disease.
Please speak to/see a rheumy and you can start taking something to get you back on track. You may never return to what you were, but you can become far, far better than you are now! You can make a return to very good health and movement. Good meds controlling my RA have meant I’ve been able to pursue a dream to do my BA Fine Art and MA Printmaking and both we’re very physical and studio led.
I was told by a wonderful rheumy nurse when I was diagnosed that you grieve for the person you were and that was so true. I was an athlete and sprinted and played squash and did 25 miles hard terrain on the fells every Sunday. I don’t anymore and yes I miss it but I walk still, even if much less, and I now take my paints and sketch and sit for some of the time in the car or outside when it’s been nice whilst my hubby does a run for an hour and then returns so I’ve adapted. It was difficult and you need to dig deep but you will. You don’t want to be in bed in agony without any protection for your joints so please discuss your options with a rheumy. I know you’ll be glad when you’ve done it as it’s the start of the road to coming back. You’ll be able to play with and look after your baby without being in so much pain and have a good, active family life. Sooner you start the meds, the sooner you get that good life back. Laying in bed and wishing the arthritis away isn’t going to work! You taking control of the arthritis is, rather than letting it control you.
I took my diagnosis of R.A. so very hard and I was oh so angry too as you say you are. I was unable to run or do such energetic sports again (I do weights now and normally, until the virus meant the pool was closed for precaution, aqua aerobics and get my exercise that way and I walk too but much less.) and my rheumy arranged with my doc for me to see a counsellor for several sessions to talk things over. Offload the anger and sadness. I wasn’t raging and kicking doors or throwing plates, but seething that I had R.A. Those sessions were excellent as I was never one to complain to my hubby but of course he was devastated for me, or tell friends or family how I felt, so to offload to an impartial professional was good. His advice was superb too. He also made me believe in myself again. My hubby was always trying to do that, but to hear it from someone impartial was what I needed. I wonder can you think about doing something like this even if over the phone?
Please don’t be afraid of taking the R.A. meds. You’ll be advised very well and looked after with blood tests and if something you try isn’t suitable there are many other meds. NRAS helpline are excellent too to offer support and advice. They’ve helped me in the past. Wishing you much better days and gentle hugs. x
I had CBT as I refused to acknowledge things were different and it wasn’t going to go away. He thought I had a version of PTSD. Those sessions were life savers for me. 💕
I think they are life savers and glad you have been to benefit from those. 💗
I really did and would recommend it to anyone that's struggling
So do I. Absolutely. 💗
So, so sorry you are struggling so much.
Going through the initial stages of a chronic illness is a bit like going through the grieving process. After all you are dealing with a significant loss, the loss of full health and well being. In addition to that, it’s a life long change.
We all come to terms with it in time. It’s a matter of learning to accept and adapt - much easier said than done.
A therapist or counsellor might help, or a really good friend to talk through your feelings. Your rheumatology team should be able to advise you and point you in the direction of therapy.
If you want to message me privately, please do.
I too have RA , the fatigue plays a huge factor day to day ! I may have a day or two when I’m in so much pain but not so tired then the next the fatigue just hit you like a snap of the fingers ! Listen to your body and you must lay down ! Let yourself wake naturally I usually feel like I’ve been recharged!
Try not to push yourself ! I bought hand fingerless gloves for swelling and pain ! They are good x most of all be kind to yourself don’t push it ! Rest is good ! Hope this is helpful
I’m going to be a bit controversial here. In addition to my previous response...
Diet and being Veggie or vegan does help, it helps a lot.... it is not going to cure you. You may still get pain and swelling but in my 23 years of RA (I had very high RF and Anti-CcP - the Rheumy told me It’s likely I’ll have severe R.A) it has served me well. I was vegetarian long before I had R.A. I have no obvious joint damage. For 15 years I was mostly med free or only taking anti-inflammation meds. Now I take Methotrexate. I’m also now following a vegan diet, it has allowed me to stop taking the anti-inflammatories.
My ESR and CRP are rarely above normal and never by much, my inflammation is low level. My disease activity has worsened over recent and I’m taking methotrexate now, but I still have no damage and I am still active. I walk 5 miles a day with my dogs and play golf a couple of times a week.
I’ve had bad times and can associate all of them with poor diet.
You must do what you think is right for you. It is your choice. I’m not suggesting you should do anything other than do your research and make your own choices.
I would never say that diet doesn’t help. It helps me too. But despite very low inflammation levels (which I partly put down to good diet!) without the drugs I am useless. If I eat too much fatty, greasy food I feel bloated and unwell but it doesn’t provoke an RA flare.
This can also be a very slow disease so years can pass with little activity. Hindsight tells me I actually had active RA many years before I even started mentioning aches and pains to the doctor.
To add to my previous post I give a link to Lucy11’s post of 3 years ago which I hope would be interesting to the OP. Lucy's now tapering off biologics.
healthunlocked.com/nras/pos...
Thank you for providing the link to Lucy's post. I did read it at the time she posted it, but being relatively new to RA at the time it did not mean so much to me as it does now. A great heartfelt post that kinda says it all.
Lucys post that you linked is so relevant to me, thank you
Firstly congratulations on finding this forum and posting your question. The people here are so supportive helpful and knowledgeable i honesty feel they are the best medicine. Rant away as often as you need we will all understand, we've all been there. Can't add anything to all the other replies, they are all good. Please let us know how you progress.
It is definitely a “good” time to be diagnosed with RA.....I know that sounds odd! But there are so many new treatments out there which enable you to enjoy your life again. Please discuss with Rheumatologist. Take care
You are so correct here Evie3. I was diagnosed with RD 31 years ago when our children were 14 and 11. My wake up call was when my son 11 said to me one morning 'Mummy, you will get better'. I knew for him ,my daughter and my hubby that I had to go along with all the medications that my Rheumatologist told me to take. Sadly them the drugs for RD was no where near as good as they are today. I have ended up with huge joint damage in my shoulders, feet and hands and it is only in the last couple of years that I have been prescribed a drug that suits me. I will always be in pain, not due to the disease but due to the joint damage.
I had a face-to-face with my GP the other week, she also has RD being diagnosed in the last few years. She looks amazing, and she told me 'she feels good' due to modern medication. So to forislava speak to your Rheumy and take the medication, when you are not in so much pain you can then see the way forward for you and your family. Thinking of you and Take Care.
I know how you feel, I got the tea shirt too, its horrible ad so unfair and hard to get your mind round
its like a stream and your paddling up it but the streams going another way
it takes a while but with the right medication you can get your life back to normal, you might have times that takes you back a few steps but once you give in to it and get the right medication life will look a lot better
I know diet helps and lifestyle but its not enough, you need to give in and get medication
be kind to yourself, take care big hugs xxxx
Hello, I am so sorry to hear about your struggles. I was diagnosed 30 something years ago but I wasn’t referred to the Rheumatologist for over a year due to a mix up at my GP. When I was diagnosed there had already been damage to my joints. I struggled really badly like you with the diagnosis and became really introverted. This lasted a fairly short time as I had 2 beautiful boys who needed me. I made a decision that I had to stop and try to get on with my life. I was fortunate, I had a fantastic rheumatologist and trusted him implicitly. My advice would be to perhaps rethink your decision regarding medication as there are now so very many drugs out there. I think your struggles are perhaps due to trying to manage on your own spirit. This disease is tiring,painful and so many other things. I suggest that you try to discuss with your rheumatologist again but definitely suggest some medication. Be kind to yourself. Taking drugs is not a cop out, it will help, honestly. Also this is a wonderful, very safe place with terrific people and advice. Take care.
Hi, sorry to hear you've had this diagnosis. It's taken me years to get anywhere near acceptance but I have got used to the idea - not exactly the same thing. I chose not to take methotrexate initially because my only symptom was one swollen finger and I was aghast at the idea of such a heavy-duty drug for just that. But within a year, I couldn't get in or out of the bath or bed, and was in awful pain taking opiates regularly to try and keep the pain at a bearable level. I went back on the meds but they didn't really work for me sadly and had to try others. The whole process can be very long-winded - it can take months to see a rheumatologist and then months to see if the drugs work or not. So it's best to start asap.
I expect it's the methotrexate that frightened you but there are other drugs available so you could discuss that with your rheumatologist.
Finally, I'm sure you could find numerous websites that will encourage your fears about medication. I would honestly avoid them - they will give you very bad advice.
Best of luck and I hope you feel a bit better soon.
Hi, i too am sorry to hear you are struggling. I too am in a similar situation as I have a very active 5 year old boy, so know the struggles with dealing with the pain but also having to look after a child too. But I would never be able to do it without taking the medication. My husband works long hours 6 days a week, so often it's just me and my son. I am relatively pain free at the moment, but the side effects and fatigue are just something I have to put up with. I started on Hydroxychloroquine which worked fine for a few years, but the sulphasalazine had to be added, only last year did I start on Methotrexate which helped greatly with the pain.
I am so sorry you feel as you do. I would definitely recommend, as others have, that you take medication. I had to have 5 different ones before my consultant found the one that kills the type of immune cells that cause my RA. The journey was frustrating at times but finding the right one has given me back my quality of life. My mobility is not good, I have a stairlift and a scooter which means I can get out and about with my family and friends.
I very strongly advise you not to delay treatment because of the irreparable damage to your joints.
My level of fatigue was very high too and I was diagnosed with fibromyalgia which when I researched it made sense. I am now on medication for that too, which has helped so much.
It is a lifelong journey we face but my thoughts were and still are, why would I not take medication that would improve my life.
I wish you all the best,
Referring to treatment as ‘light chemo’ is absolutely absurd. Guessing you’ve never seen anyone go through proper chemo.
Hi Rashford20, you are right, thank God I’ve never seen anyone going trough proper chemo and I hope I’ll never will... I’m scared to death that for the first time I really don’t have an answer, I don’t have a way just to make it go... The first time I’ve ever been in hospital was to give birth to my son, I was always healthy as a horse... guess not anymore... I’m sure I’ll find a way, just don’t know when or how, but I’ll see and speak to all available medical support I can be offered as soon as possible, I don’t think I have other option...
I’ve taken methotrexate and experienced no side effects. I would say the only thing it has in common with chemo is it can give you your life back. Good luck
Hi so you have joined the club that no one wants to be in but we are here so it’s hard I know take the advice from the people that’s here try the meds available you can always stop them and the best advice I got from here was speak to a professional about what’s happening to you I took that step and boy it made me feel better in mind set cheers
I can relate to what you are saying. You are also working through a tremendous amount of stress and loss (emotionally). In my experience, the emotional weight and anguish we carry within can manifest physically as deep, wracking pain.
You should be concerned about the medications.
They are some pretty heavy ingredients to introduce to your body.
I had a prednisone shot in my hip for (what I was told) was hip bursitis.
Within two days of NO sleep, heart racing, BP all over the place and stabbing stomach pangs-I ended up in the ER resulting in a hospital stay of two days. After blood work and an ultra sound, the conclusion was there was no conclusion. I was referred to my GP who referred me to a Gastrologist that began a slew of blood tests, Colonoscopy, upper GI, Endoscopy, almost an entire year of expensive "ruling out what it might be" kinds of tests. Yet no exact diagnosis of anything exactly aside from a severe case of Gastritis, some osteoarthritis, Ankylosing Spondylosis, thrown in with a yet undetermined Auto Immune disorder.
It seems that RA tends to just float about attacking what ever system it wants to aggravate. Can't sleep on your side because of hip and shoulder pain, if you fall asleep at all you are waking every hour, in pain or in a breaking sweat from fighting pain in your sleep.
There seems to be no relief.
It IS exhausting!
Needless to say after the reaction from the prednisone shot I was not excited to try the treatments being offered given the side affects they list!
Alas. I am the only breadwinner for my household.
I have to be able to work.
Therefore, despite the pandemic we were now in the middle of, I had to seek a Rheumatologist.
I was prescribed something for the pain so that I could at least make it through a day of work. I was thankful for that but work was all I had energy for. Thank God it was just me and some pets to care for-because I had noting else to give after a day of struggling to make it through work-and would crawl into bed at 6 or 7pm exhausted and wracked with pain for another night of restless, waking sleep.
I am an amazingly strong willed person who has dealt with a great matter of life. I was not accustomed to not being able to accomplish everything I normally would in a day.
If this was how I was going to feel for the rest of my life, I will admit there were times (while I am not typically suicidal) I felt so tired of being sick and feeling ill that I didn't care if I didn't wake up! I felt I had no quality of life.
On top of that, I was pi$$ed off that I had done nothing to deserve these ailments to begin with and the process of being diagnosed is slow and painfully insufficient and no one seemed to have any answers or explanations.
I was desperate. When offered a free (or mostly paid for) trial of the self injectable,
Humira-I decided to give it a try. I was seeking some kind of relief or "remission" from the ongoing "flare" I seemed to be endlessly stuck in. With a glimmer of hope, I started injections every two weeks. Initially, the reduction in pain was promising. However, after three months I decided that what little relief I did get from a few areas of pain (mainly hip relief) it was not worth the slew of side effects that made me feel worse than the condition itself.
I was missing more work from the awful Humira headache and side affects than I was w/o medication. I also couldn't help but to feel as if I were poisoning myself.
It's possible that the three months of Humira helped push my symptoms into a reduced state.
I am continuing to follow a healthy mostly meat free diet (lots of fruits and fresh product) Drinking tons of water, green tea and fluids. Rest, collagen, chiropractic, acupuncture, massage, yoga are all supportive tools you can utilize. I am also seeking alternative medicinal practices (Chinese or Eastern medicine practices) Recently I have begun taking Thunder God vine under supervision and have results that allow me to be able to function w/o feeling as if I am inundating my body with toxic, heavy chemicals.
Accepting that It is not possible to get everything done in one day like I used to has been a difficult transition. You have to forgive yourself as you learn to deal with RA.
You have to learn to listen to your body and adjust as needed.
(or pay the price of overdoing it!)
I encourage
you to seek what is most important in your life, focus on that and let the other things just fall away... at least for now.
You can get to a more functional and better emotional place.
It's possible that you can have positive outcome from giving some of the many options that are available to try. Ultimately, I am glad that I had the opportunity to try the Humira.
Medications (even temporarily) can offer some sort of relief and support.
You will have to take charge and decide how much you want to fight to become the strong example of the person, the mom and wife you want and intend to be.
You are not alone in this!
Hang in there!
Your post seems to try and be encouraging to be fair but I wouldn’t recommend anyone try chinese medicine. Most of it is complete nonsense not backed up by any evidence whatsoever, a common ‘medicine’ is fermented bird in a jar mixed with snake heads for example. I’m more of a methotrexate washed down with a cup of tea and a digestive kinda guy.
Hi Forislava, sorry to hear how much you are struggling. I am 38 and I was diagnosed with RA 10 months ago. I like you, love running and doing Bootcamp etc. Anything to stay fit and healthy. I was put on Methotrexate to start with and it took me two weeks to even touch it!! I was terrified of the side effects and what it can do to your body. When I plucked up the courage to start taking them, it didn’t take me long to forget what it can do and I just focused on the fact the doctors and my consultant are constantly monitoring me. I was taking 6 tablets a week and it did bother my liver so they reduced it to 4 and all was ok. I am now taking 5 a week and my body is still fine. To top it up they also put me on hydroxychloroquine, I take one tablet a day. Don’t get me wrong, sometimes I feel fatigued and like I have no energy but it’s not all the time. Thought you might like this ........ I can still do my Bootcamp and run 3 times a week! 😊 x
• in reply toCazbar8
Really positive post Cazbar this is what I was hoping for a young and active person to give her hope,
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