I'm turning 40 in September and feel absolutely gutted and sorry for myself...
I know I need to be strong but it's so hard when you're in pain and so tired every day
I cried most of the day yesterday and I feel so low. My pains got worse suddenly yesterday and today I'm also very bad. With a hip that doesn't work and a shoulder, arm and fingers that are getting much worse by the day, I just feel like I can't make any commitments or plan a party for my birthday! I certainly can't go dancing... given that I can hardly walk
It's so depressing. I just have to hope that this time next year I'll feel better and can finally plan a party and just get on with my life. I hope my meds will start working and give me some relief eventually. x
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regina79
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I was 49 when I was diagnosed but suffered for 12years before I was diagnosed. GPs said I was depressed I honestly thought I was going insane. I wish I knew earlier so I could be treated straight away rather than ending up with hand and feet problems that I have now. Once your treatment starts working you feel better
I see that's not good. Suffering for SO LONG! What were your symptoms/pains for all those years pre-diagnosis? Poor you. I was always bad.. like bad knees and couldn't stand up for many hours, etc. This has been going on since I was a teenager, but it suddenly got worse in the past year.
And yes I had foot issues too since years, and couldn't wear heels at all or very flat shoes.
I'm so happy to hear this!! Words of HOPE! I can't wait for them to start working Thanks so much. Are you feeling better now with the meds? xx
My first symptoms was fatigue really bad fatigue. I often had the flu??? 2 or 3 times a year aches and pains begged doctor for help was told I was depressed no matter how many times I told them I wasn’t. Then I got lumps on my feet had hobbled in the morning doctors just shrugged their shoulders. I was referred to a rheumatologist who said I didn’t have RA as my bloods were good. Fast forward 5 years the fatigue was getting out of hand my fingers and knuckles were swollen and my toes were separating and my toes hurt and were burning (?i had no stride I just waddled) again the Gp just shrugged his shoulders . My cholesterol went through the roof. A young pre reg doctor took one look at me and said I had RA and referred me. Found out I was s- negative and it doesn’t always show in blood tests.
Diagnosed 3 years ago have been coping really well till Christmas when things started to get out of hand. Had a battle to get seen by rheumatologist ( so busy) but starting new meds in September 🤞this works.
The NHS is wonderful, but under great strain. It does not explain why some Drs still label people, often with labels they have only their medical student knowledge of..depression being the big one. Most GPs have no post graduation knowledge of mental health issues, but throw around labels (which then become a legal log in your notes) as if they were experts.
Yes. I’m not impressed with any GPS I met. They lack of sensitivity and tact also shocks me. They have no idea how a person who is in constant pain might feel. But also they don’t try and help. Most of the times they say things to make you feel worse rathe than Better. I guarantee that if they would be more tactful with their words even the patient would feel a great deal better already. It means a lot to be sensitive to someone who’s suffering. Xx
I contributed to another posts somewhere a few days ago saying much as you have said. No one should be unkind to people who are ill. Full stop.
If you are being paid to work with people who are ill, a Dr or a nurse perhaps, then keep your attitude to yourself and be thoughtful and generous. If you can't do that then move onto employment where you are not working with ill people.
Being busy is not an excuse, often its attitude, poor practice, lack of education, having a higher view of yourself than you should have (Drs being the worst, in my experience). All staff are trained at great expense from and then paid through public taxation, many Drs seem to be unaware they are public servants and answerable to the public.
My GP has upset me last time. Basically she called me an hypochondriac stating that she’s been knowing me for a long time now... and that I have too much of an health anxiety! When she clearly hasn’t bothered looking at my scans which clearly showed that I have real inflammation!! That made me really angry and I think I should let her know next time I see her. As Im certainly not making up my pains and I work full time and it takes physical and mental energy and time for me to actually get to the docs. I wouldn’t waste my time going there if I thought I wasn’t ill. Xx
Are you prescribed corticosteroids to see you through till DMARDs kick in? That’s assuming you can tolerate those with your other health conditions and drugs?
Prednisolone and Tramadol are commonly given to tide us over.
It’s normal to experience feeling scared and to struggle with the reality of diagnosis of RD.
I am not sure which is worse: to have Juvenile Ideopathic Arthritis, meaning severe pain from possibly toddler age, or to enjoy pretty good health and employability then be struck and robbed quickly of so much.
But many do get almost normal life back once DMARDs kick in.
Anyway, it’s no wonder you are reeling from diagnosis and pain. I hope you might call your Rheumatology Dept helpline, if you have one, and ask for pain relief to tide you over.
Pain at the levels I get with strongly anti-CCP RA is terribly depressing, disabling and unbearable. X
Sadly NOT! She said that she wants to wait to give me those as she won't be able to know whether it was the DMARDs or the steroids which is working.. So she said to wait. :(((
Thanks for your kind words.
Do you have Juvenile Arthritis? That's terrible. So sorry to hear.
I think that it's all bad.. there is no option which is better surely. It's still painful and debilitating.
I guess it's hard when you were exercising, dancing, going out a lot before and then suddenly everything has to stop..
But I'm so hopeful after you and many others say that these drugs make you feel so much better!! I can't wait to feel better. I just need to be more patient..
How high were your anti CCP levels at diagnosis time? Mine were 53 I think. xx
No, I never had JIA. Anti-CCP, I was told, was strongly positive result. I don’t have copies of tests results to know what it was and never asked for a number, being too sick to care.
I recall now, you had said your Rheumatologist expressed that desire to wait.
But for how long? Three months is the usual time for DMARDs to begin to kick in. I had a taper of prednisolone in January 2016, at the same time as starting Methotrexate together with Hydroxychloroquine.
It took four or five months to begin to help me. I felt like death but had to make it through without steroid medication too. It was a very long haul.
I was totally incapable of any work and going through divorce too. No car, it was across the pond in the USA. But I got my bus pass, being over 60!
We all need others who understand the pain, distress and nature of the disease. I am fortunate to have a sister who is supportive, and a son living with me. Although he has Asperger Syndrome (autism spectrum) he too is supportive, filling and lifting the kettle, pouring tea etc, carrying my cup or plate when I can’t do even those little things.
The whole disease is horrible. I am sure many here sympathise and understand. X
She said that my anti-CCP were positive and quite high and we have also repeated them twice.
Yes, I will have to tell her that i'm in too much pain and I can't wait for months.. I don't know why she seems to think that the DMARD's will work very soon... sooner than 3 months! She had a couple of patients who apparently experienced that.
How long did you without steroids then...? Poor you
Horrible you certainly didn't have an easy ride.. but I'm very glad that you have someone to help you and care for you when you need it xx
The taper was just a few weeks, and did not allow me to dance at my third son’s wedding in Feb 2016. Rheumatologist said I would be able to but she obviously did not realise the level of pain I was enduring.
I had splints though, for my wrists, so could drive to the wedding. And due to the steroid taper I finished yesterday, I have been able to drive again; had not been able for two years due to tendons and swelling and weakness of hands and wrists etc.
After bringing up four sons alone for 17 years, I went to the USA where I lived out in the sticks, and used to help on the tree farm with apiary in the, clearing the 32 acres of branches on the trails, digging drainage ditches after storms, doing the gardening, hiking for miles, knitting and sewing, doing voluntary work, housework etc, looking after five dogs.
I am currently off steroids but barely started on biologic injections.
And due to a virus, will miss my second injection tomorrow on instruction from Rheumatology.
They have agreed that I should be put back on steroids for a while before the biologic works, if it will work for me. But no prescription yet, I have to call and say when joints are getting really bad again. So I am making the most of an interval of freedom from most pain and swelling.
I need to get out, but you are far from alone here! X
Biologic/biosimilar ie Amgevita in my case, takes 3 to 6 months for full benefits. But also very risky. It works for some. Could not have my second biosimilar injection yesterday due to virus this week; Rheumatology specialist nurse via helpline at local Rheumatology Dept instructed me to inject only after I feel completely well again. It will be like starting over, a delay.
Yes. And other things that are rare but are fatal. But paracetamol can also have very bad effects.
Any DMARD lowers our ability to fight infections, heal etc.
Biologics suppress our immunity further than DMARDs but quite a few say it brought them a new lease of life. So I decided to give it a go and see if it works for me.
Thank you! Ears, nose, throat, sinuses. Not a really heavy cold but coughing and irritation of passages with bad headaches. Almost gone now. Started with one little sneeze two weeks ago. Then some violent sneezing before it finally manifested. Annoying but mild compared to how it might have been.
I so understand I feel better for a few weeks, then like at moment I can barely
walk, people who have not got R/A don’t understand. Thank God for this site.
I was 60 when I was diagnosed now 73 like many others. I was years before diagnosis , just keep taking the tablets, smile there is nothing else to do, sometimes I feel like ending it all when the pains that bad , but I got family and a beautiful dog three cats all rescued, and a wonderful husband which I know It would be very selfish, wish you very best Elizabeth x
Oh I know how you feel. I’m in constant pain and yesterday I really don’t know how I got myself home I swear... I was in pain and so fed up. It can be a very depressing place.
We are so luck to be able to speak to people who feel the same and therefore understand! I’m very happy about this site and all the lovely supportive positive people on it! 🙏I’m so very grateful.
Why are they not changing your drugs if they aren’t effective? I hope they will. You’re very lucky (I can definitely say this) to have a family who cares for you. I wish I did but all my family is back in Italy and I’m here practically on my own. Friends at 40 years old have changed she have less of them now. It’s very hard and I do feel lonely. Xxx
Liggie, it is very difficult to come to terms with. I felt like opting out too, till about a year ago. As you say, how would others be affected though.
You are very blessed to be surrounded by such supportive family and pets. I hope you find a treatment that brings more freedom from the pain.
I was diagnosed when I was 36. I'm now 68 and when I read posts from people who have problems getting a diagnosis, I'm so sorry for their situation. My GP diagnosed my RA after doing tests first for Rheumatic Fever. My test results were negative, but as my hands looked like bunches of bananas and I could only shuffle along, he prescribed me Diclofenac (Voltarol) and when after a few weeks my ESR was 86, he referred me to a rheumatologist who immediately confiremed my GP's diagnosis and put me on Sulphsalazine. My CCP suddenly shot sky high 6 years ago and I now also have Rheumatoid Vasculitis and I've had Sjogren's Syndrome since the beginning. Although I now have hands and my mobility problems are caused by OA and OP, things I've had to give up are dancing, walking, knitting and singing. Now housebound and taking MTX, Leflunomide and Pred.
Wow, that's young too. It's not nice to struggle with illness for so many years
It's very good though that they have diagnosed you soon enough. You have been lucky I guess. Better to know and start the treatment than not knowing for sure!
Bless you xx
Which is why I feel so sorry for those who can't get a diagnosis, but I don't think I was lucky in that as a young mother of 5 children who used to walk for mles in the countryside (how I miss that) can't even make it down to the local Co-op now.
I was diagnosed 5 years ago at the age of 20. At least nowadays it's much easier to pick up the disease early so that it hopefully won't develop into anything debilitating. Just be patient with the methotrexate because it can take over 3 months to start working
I started off with painful and swollen fingers and sore feet. I struggled to get out of bed and I couldn't hold anything. Luckily my GP was really good and referred me to the rheumatologist where I was diagnosed with seronegative RA (my blood tests were negative). I had an ultrasound on my hands which picked up the inflammation. I started off with 7.5mg Methotrexate and then went up over a few months. Unfortunately I now do have more joint involvement (knees and back as well) but I'm certain that I would be in a worse place without the mtx.
Also I do the methotrexate injections and they are brilliant compared to the tablets. So if you can change and you're okay with needles then I'd go for it
I was 51 when diagnosed with Sero negative RA and thought my life was finished,I’ve been through ups and downs still am but can do a lot more now that I’m fairly steady on my meds but still have ups and down days, when I first started out on my journey I could get out off bed then had to retire medically at working all my life including 6years in the Armed Forces so I wasn’t going to let this illness get me down and I go to the gym most days and body conditioning 2 a week so I’m occupied most days so keep the chin up and you’ll get there but be patient and take things as they come xxx
When I went for my ultrasound they said it was just a flash of red where the inflammation was and there was so much synovial fluid my joints looked like they were floating. When the meds started working you could see the thickening on my first 2 knuckles on both hands.
I was diagnosed 10 years ago, aged 21 and I remember the shock and sadness. It’s early days for you right now and it does take some time to get established on treatment. I know it’s easy for me to say but you do learn to accept your new normal and adapt your life. In the mean time I fully appreciate it is hard and we are here for you. 💜
Diagnosed only 6 months ago age 34 had symptoms for around two years before seeing a doctor, I didn't realise all my symptoms were linked. At the start I thought stiffness in the morning was down to poor sleeping posture, I put the fatigue down to looking after 3 young children, my sore feet and knees I put down to being on my feet all day. I just simply thought I was getting old once I started getting pains elsewhere! However none of my friends were having these problems in their thirties so after having a chat with my doctor and realising my dad had psa my gp ran some bloods and referred me and thankfully started my treatment to one day maybe hopefully feeling better.
Diagnosed in April this year, age 48 but thinming back have had the symptoms for about 8 years. Started with feeling stiff when waking, and getting flue like symptoms constantly kept going to the drs, but they just kept saying nothing was wrong. Then developed carpal tunel, and pain up Into my shoulders then feet and knees, had says when my legs gave way on me when I tried to get out of bed. In constant pain and had a steroids injection, a dr mention RA but my Dr dismissed it. I insisted on being referred and after the appointment was cancelled by the hospital went private, was told within 30 mi s that I had RA and given a prescription for Steriods 10ml and 20ml of Methotrexate, such relief to finally know and have the pain taken away, fairly quickly. Still have a bit of pain, and may have to have an operation on my hand for the carpal tunel causing pain still. Am able to do most things now but am aware that I will have the steriods reduced soon. I think if your in pain you need to tell your Dr to see if there's anything she could give you to help you. Good luck x
I was diagnosed in March this year aged 52. I had palindromic Rheumatism before that which was diagnosed in 2012 (aged 45) but I first had pain and stiffness in the morning in 2006 (aged 39). It was quite intermittent for a few years but really kicked in in 2011 and it took 18 months for them to diagnose PR. My anti-CCP was very high though so they have been monitoring me since then for signs that it was progressing to RA. I felt it change last year but at my appointment last Spetember, the change wasnt clear cut. In March there was no doubt this was now RA. I had been taking hydroxychloroquine for 5 years but had to stop when it became toxic. They then tried sulphasalazine but that caused a fairly drastic gastric reaction so was stopped after 4 weeks. I am now on Methotrexate injections (I have ongoing issues with my stomach now). I was on 15mg but it wasnt working well enough so they have been trying to raise it but the side effects of the higher dose are debilitating so I am back on 15mg for a few weeks then trying 17.5mg. If that doesnt work, I start biologics. My rheumy and GP have been giving me steroid injections in my bum every 3 months to help with the pain and inflammation until the RA drugs kick in. Each injection only has a good effect on me for 4 or 5 weeks so they can clearly see how the RA drugs are doing between injections but it means I get 4 or 5 weeks of relative normality every 3 months. There is no need for you to be in terrible pain. I would go see your GP and be completely honest. Get them on side, fighting your corner with you. If you mention your big birthday coming up, your GP might agree to give you a steroid injection to at least let you enjoy that! My very first steroid injection lasted 3 months - pain free! Good luck x
Thanks so much!! It sounds great reg. Injections! I didn’t know that they did the bum ones so they were effective for the whole body! That would be a much better solution for me too since they surely can’t inject every part of my body!
Where are your major pains..?
Poor you- so sorry to hear that all those drugs aren’t effective enough for you
Plus all the side-effects 😭
But... I’m so sure that if they give you the Biologics you’ll feel so much better! Everyone says that they are the best.
I hope they give you those soon.
Question: how do they find that the drugs don’t help? Is it cos you tell them or cos of the blood work and inflammatory markers..?!
Bit of both. I tell them but they can see or feel it in my joints. My bloods have never reached normal for inflammatory markers yet. It will happen though 😊
I was diagnosed jan this year, I am 43 but I have been suffering for last 10 years undiagnosed, now you have been diagnosed that's a positive, I know it does not seem like it, but you will start to feel better once you are on the correct medication
I was 23. Things WILL get better. Make sure you are honest with your consultant about how you are doing and I am sure they will do their best to get you better!
thanks! I will! In fact.. I have decided to have an injection in my very painful shoulder tonight.. I'm so scared that it won't work again as I had it last year and did nothing.. xx
Eeee fingers crossed that it works wonders this time around! And well done you, putting on a brave face. It's so scary the medical procedures we have to go through with this condition. You are VERY strong and we're proud of you for taking the leap! Massive good luck with the injection
Thanks... it was very painful and the pain shot into my nerves in the arm! Which normally hurts. I’m home now. Couldn’t carry my rack sack on the right shoulder and the other one also started hurting plus the left elbow and fingers :/ I don’t know how I got home :/
Going to take my second Methotrexate weekly dose in a bit.. scared but I couldn’t wait to take it any longer as I so want it to work.. I just feel that my body is getting worse by the day so I need to stop this!! :@ it’s a horrible sensation. Each joint in my body feels tender and as is going to deteriorate very quickly. It’s a very scary sensation xxx
I have seronegative RA and I was diagnosed at forty. Woke up one morning and I couldn’t move my head. Dr thought it was frozen neck muscles at first.
It moves round my body attacking different joints
I can’t take strong pain killers and still haven’t found a treatment that’s successful yet.
Also when my joints are swollen it won’t always show up on blood tests
I try An make sure I walk every day even if it’s only for a short time to keep muscle strength up.i do get depressed as it’s difficult to explain to people how I feel as most people don’t understand the full impact RA has
Hello Regina 6 months after my 50th birthday (also in September) I was diagnosed with RA after being quite unwell for almost 2 years. Reading your post I totally understand how you feel. Fast forward 3 years I am doing much better. Steroids methotrexate and other drugs did not help and I started on Benapali in February my life has definitely improved. I still ache but i have started getting my life back. It’s been a tough road but I’m a social butterfly and not having been able to see friends go out and have a life was so difficult. Although it’s only been 6 months I feel so much more positive. I hope you will get relief soon and something out there works for you. Take care and please try and stay positive 🤗
Diagnosed at 26, nearly 30 years ago now. I’m sorry you are having trouble finding meds that suit you long term. Don’t lose hope it can take a while for some of us but you will get there. Keep talking to us as we know how it is and can be supportive when you’re despairing.
Hi I was diagnosed at 43 and I was a personal fitness trainer but luckily I also had a full time Teaching role in sports. I have had to stop all my activities which wasn't hard at the time as I was in constant pain but even on good days if I tried to exercise I would pay for it the next day. RA is a horrible disease and I like you felt sorry for myself and often still do but I try to stay positive as state of mind can make things worse. All I can say is you have to slow down make sure you get plenty of sleep eat as well as you can and listen to your own body. The pain is still there sometime worse but life is for living and although we are limited and have flares keep going and hopefully the medication will take the edge off good luck xx
Thanks netball. I can imagine how you must have felt when you had to stop training. I also used to love going to the gym but I really can't since over a year and I cancelled my membership for now : (
Hi, I was 18 when I was diagnosed I'm now 57 its been up and down, loads of different drugs, but the treatments are certainly better now than they were, just keep positive, but I do know it's difficult, hope you feel better soon
I was 39 when diagnosed and I am now 69 and over the years I have taken lots of different medication. Our children being 11 & 14. So they had to grow up with a Mum who some days could hardly get washed and dressed. My husband and the children were amazing then and s still are. Our children maybe had to grow up a bit quicker, no need to ask they would hang the washing on the line, hoover, nip to the shop if I was struggling. When they went to University they both knew how to do the household chores. The medication for RD is so much better now than it was then. Be patient, life isn't going to be the same, but it still can be good. Yesterday we went to the campsite where my daughter and family are staying for a few days. Our grandaughter (4) wanted my husband and I to stay in their tent for the night. How we would have loved to but returned home to sleep. We had a lovely meal with them in the restaurant on site in the evening. We will be returning on Monday to stay in a caravan on the same site, local to us. They also have a few days to do what they wish to do and noway will I be able too. I still get bad days when I sit on the bed, in such pain when moving and just sob. It is then I think of my son 11 at the time when I was diagnosed who said 'You will get better Mummy'. Compromise, don't give into it. Take care.
Oh bless you! My same years I'm 39 now, but not for long..
I'm so glad to hear that you have a lovely family helping you out. I think that's the best that can happen. My family is in Italy and I'm not married so I'm starting to feel quite lonely without a family of my own here.. xx
I appreciate not easy for you. Food shopping online is probably my saving grace, sometimes food that is really easy to prepare and can be heated in the microwave. Colleagues from work can also be a saving grace especially if they have/know someone with RD. Both my daughter and son live a ferry journey and approx 3 hours away. My son has a colleague at work with RD, sometimes she cannot come into work and does what she can remotely at home on the computer. He is always ready to help her out if necessary and my daughter a teacher, has two pupils whose Mother also suffers with RD and on occasions has washed /ironed school shirts for them. I did manage to work in an Office even when quite poorly, my colleagues would be ready with a hug/cup of tea. Let your friends/colleagues know you are suffering. Take care.
I was 52 when I was diagnosed with RA after suffering such bad pains in my hands, the feet came later. It's been a tough nearly 8 years, but I keep trying all the new drugs and I love to dance at Pop concerts when I am not too tired or having a bad day, so don't give up and be as positive as you can.
I can relate to the bad hands pains now... as I feel the same since a few weeks. And toes have started too but not all day, mostly in the evenings and mornings.
You are most welcome 😊 my friends say I am a very positive person and even trying this Mindfulness for a min every Morning, listening to your breathing. Was just a free App on phone called Calm. Have a good week.
I was diagnosed at 29 (7 years ago) First GP said it was just a bit of arthritis, I laughed (didn’t know about RA then) and 6 weeks later my usual GP did bloods and the rest is history x
Hi, I can't type a lot as wrists bad but as above I had that sayimg a few times around age 50, Oh just a bit of Arthritis, not helpful! So many were so young I am feeling very sorry and hope we all get some break through soon.
Bless you I have severe arm pain from my shoulder bursitis and fingers pain. I think it's all due to repetitive mouse clicking (my job mainly involves clicking data) and typing.. It's the worst of the pains.
Hello Regina79, I so sorry you so young an going through this disease. I was 59 when i was diagnosed but i had been feeling it since i was 57. But when it hit it hits. My body changes every day. I can't go walking, dancing any movement. Just say when i have a good day hubby will take me to park or concert. I only can walk for a little. But my pain an body shut down the next day. Litterally still, sore pain u name it. I can't get uo till 2 in afternoon or later. I cant sleep at night so i watch tv till 3 or 4 in morning. I thank God for waking me up. Because all the medications i take, i try be careful. It becomes depressing when i can't do things i used to do. Just hang in there an keep your FAITH. I was devastated when i found out, i have all the Arthritis thats out there in life. I PRAY for you. May God BLESS an keep you Strong. Its not easy, but i will tell u about 8 months ago i thought i was in remission. I felt great for days. Then Omg it all came back. Stay positive.
Thank you so much for your lovely message and kind words Quee 🙏
Yes I feel the same way. I’m definitely feeling different in the last year. Worse than ever in terms of not being able to walk far without paying the consequences after or anyway not being able cos my knees and hips will just give in. I feel great today but yesterday It was horrible after going to a shopping Centre. I got home and took me 6 hrs to recover from the pain in my back, feet, knees, legs. It was absolutely awful. It never took so long to recover I was shocked and felt very down.
But yes there will be good days too.. just not as many perhaps. Xxx
Hi. I was diagnosed in 2013 aged 53 but had it in 2006, because that is when all different pains started and was at the doctor's all the time. I felt like a the doctor thought I was putting it on! I could not raise my arms above my shoulder, my hand were super stiff. I had problems with my knees, ankles, hands, fingers. Extremely tired all the time. Eventually saw a different doctor who thought I had an infection in my finger and put me on 2 lots off antibiotics, but only to realise that it was not an infection and decided to do a blood test. So then blood test came back and was RA. It took 7 months to get me on some good medication but had a lot off side effects. Am hoping you will soon be sorted out. Take care. From Carol XX
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Thanks so much. Are you feeling better now with the meds? xx
Consultant said \"you were diagnosed too early\"
Hi my name is Jan, 55 years old and diagnosed with RA in August.
Changing jobs when you have RA
20 years old seeking advice on process of being diagnosed with RA
