I have a very understanding family and friends who are very supportive but sometimes it’s only the people on here who I think really ‘get it’.
Does anyone else find it a little depressing when they read about people who wake up one day and can hardly move due to pain, are diagnosed and then following treatment they’re back at work and running marathons etc? Don’t get me wrong, I’m pleased for them honestly, but I wish I could get something that effective. My rheumy team are amazing and consistently try very hard to find something that will work for me but not much luck so far.
If it wasn’t for this format I’d think I was just a misery and that all those successful people were just more stoic than I am and I’m moaning about nothing. My question is, do we accept that pain and limitations are just part of our lives and if so, how much pain should we put up with and when should we ask for help?
I’m really sorry if I’ve brought anyone down. I’ve been fine emotionally during the last nearly 2 years but I think the rapid rise in COVID cases, the return of restrictions and not feeling any better physically has finally got to me.
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Bizzie
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I often think this, I've found absolutely no one can tell you how much or little RA will affect you.
Few months ago my rheumatology clinic arranged and online introduction to having RA and there were about 20 patients, i came away really upset;Out of the 20 people its was only about 3 of us who had more than say 3 affected joints, most said they could still do everyday things amd work etc. I thought I must be really bad then 🤷♀️
Of course I'm happy for them but for me I was really sad and wish I had never done it.
Oh Marion I’m sorry that something that was supposed to help did the exact opposite. I know I would have felt exactly the same.
I work hard every day at being positive, (and I bet you’ve heard many people claim that’s why they’re so well) but it doesn’t necessarily make the difference it’s said to.
Thank you for responding to my whinge. It does really help that other people just know how much of a physical and emotional struggle this can be.
I hope you’ve managed to leave that behind and are feeling a little less sad. It’s a shame this Christmas is looking to be like last Christmas as far as seeing friends and family are concerned but I hope you enjoy whatever you do.
I understand where you're coming from. It's not jealousy as such but don't you just wish it could be you too? We have to believe that there is a successful treatment out there for us and keep our fingers crossed. Sending hugs
Thank you Gnarli, and yes you’re right, we must keep hoping, but for a number of reasons I just seem to have run out of steam. I’ll get my mojo back I’m sure. Just venting and getting support from the lovely people on here helps enormously!
I think often it depends how far down the journey you were before diagnosed. I have ankylosing spondylitis and had it from my mid 20s but wasn’t diagnosed till I was 51. By that time a lot of damage and fusion had occurred. My SI joints and ribs are fused. I only have 0.8cm chest expansion and I have 3 slipped discs, the one at C6-7 has calcified in the slipped position and now starting to press on the canal. I struggled with both knees, eventually found out both knee caps are subluxed due to the tendons shortening and pulling the patella out of alignment. What I’m trying to say is that the pains due to the damage will continue no matter how well my biologic and MTX work.
I do think we need to listen to our body and if we ignore and push through we pay the price the next day. My AS has also damaged my lungs so that has forced me to slow down or I get quite breathless. Be kind to yourself, accept help from others. Stay safe 🤗
Oh my Maureen, how awful for you that it took so long for you to get a diagnosis. I can only imagine how difficult it must have been for you all that time!
I was diagnosed 7years ago but was lucky to have a good GP and an even better rheumatologist. The treatment I had initially worked for a few months then I developed other health issues. The medications I’ve had since seem to work just long enough to give me a taste of what it’s like to be pain free for a few weeks before they stop working.
I too have lung problems which adds to the daily struggle but I do push myself some days otherwise I’d never do anything. It’s difficult getting the right balance isn’t it?
I was diagnosed with Stills Disease aged 17, I’m now 59. I have been drug free since my mid 20s except for pain relief. I use limb support and compression bandages and carefully limited all physical activity to protect my joints. I have never had a pain free day since it started, I was taking my O levels at the time! I have associated AI conditions like Lichen Sclerosis and Interstitial Cystitis.I have always worked, have two grown sons and two grandchildren. Don’t despair, you will manage, living with pain is exhausting as we know. My best advice is to have an outlet for it, go in the park and scream if necessary, anything to get it out, I’ve even called the Samaritans to talk before now. You are not alone, let me know how you’re coping. 🤗
Thanks Stillsdisease. I’m about to try a new biologic but it has risks that really worried me to the extent I wasn’t going to go ahead with it. However, having spoken to the rheumatology nurse and got more information I’m going to give it a try. I won’t stop trying but as you say pain is exhausting and sometimes it’s difficult to keep going. Fingers crossed this is the one that works.
I don’t find it depressing - I just think they’re lucky and that’s the stage of their journey they are at. It might last or it might not. We’re all different. It’s like wealth - I will always be richer than some people and poorer than others, so I will always be in better health than some and worse than others and I will always have more pain than some and less pain than others.
I also think that a lot of the time you (I) just get used to pain. Low-ish level background pain then something will happen and it gets a lot worse.
I’ve got inflammatory arthritis and I’d say 🤞 at the moment it’s not all that bad, certainly not compared to other people on here and I feel really sorry about the pain they are in. . I take hydroxy daily and top up with the odd paracetamol if I need to..I’ve also got osteoporosis which doesn’t in itself cause pain - I only found out when I broke my wrist - that was agony - but I’ve now got a fractured sacrum which is or has been terribly painful and I’ve got lots of problems in my lumbar spine which at the moment are causing a lot of nerve pain in my legs which is horrible.
I’ve just got resigned to it. I’ve tried all sorts of painkillers - the gaba drugs left me feeling like I was having an out of body experience and which was worse than the condition I was taking them for, naproxen which really upset my gut so I’m now only taking paracetamol and I lie on a very expensive PEFM mat that I bought in desperation twice a day for half an hour and I think has helped but it was expensive and has warnings so it’s not for everyone but using that has allowed me to cut down on the paracetamol I take and also led to much better sleep.
So I’ve just got used to pain although at the moment my inflammatory pain is not my main problem and I was lucky that I had a very enlightened GP who referred me to rheumatology when my hands hurt and I took myself along to see him.
I know the sort of things that will make my pain worse and avoid them. I can’t see any point in even trying to speak to my doctor (I sacked my useless surgery when I got nowhere telling them I thought I had a fractured sacrum) but even though the new lot seems ok I can’t see any point in trying to get them to do anything about anything theses days. I’ve totally lost faith in doctors - emergencies only for me I think.
I just think you’ve got to be kind to yourself, pace yourself, don’t do too much and make sure you do the sort of things you get pleasure from - then when it gets too much see your doctor or physiotherapist.
I very much doubt that my advice/ philosophy on life will suit everyone - my Pilates teacher who is also a physiotherapist said in the middle of all my problems that I was stoic and I think she’s probably right about that.
I so agree with so much you say.When I first became unwell with RA I found some of the pain unbearable, but the effects of gabapentin, pregabalin and amytryptaline were far, far worse...the whole out of body experiences were much more challenging than the pain, for which these meds did little anyway. Recent experiences of sciatica pre surgery aside, I believe that I have adapted to the pain and don't feel it as much as I used too.
My OH has noticed my ability to deal with pain in ways I didn't in the past.
After my recent surgery I hardly used any of the patient controlled analgesia at all, I wasn't being stoic, I just didn't need it and it was removed 18 hrs after surgery. I took a couple of codiene thereafter.
When I had my previous disc surgery 30 years ago I remember the pain being awful for the first day or two.
Oh a lot of days I want to be ok, not cured as not possible but to be just ok and lower levels pain or inflammation and even if 2 days a week NO fatigue I would be happier in myself. So it is not wrong to want it to go away or be why not me. x
Exactly Deeb. I have a number of problems, none of which can be cured and some even caused by the medication to treat original problems! I can’t be cured but oh a few days at a time without pain would make all the difference.
Also be really good to know from all the members on this page how long it took to be on a better path/has pain gone/can they work if they want too. Just to get some idea of how many of us are not finding the path of great meds better life yet!
5 years on my fatigue is bad as ever . I’m giving up work even dropping my hours hasn’t helped. Still have problems with my right ankle and trying to get this sorted.
I am better than I was but not where I want to be. I don’t want to be perfect but would like a good run of good days .
I've had Rheumatoid Disease for many years. Yes it stopped me climbing mountains, but not walking in them, and it did stop me running as well, especially after some years. I did change my work so that I wasn't having to get up in the night any more, but the change was a positive one and I had a really good work and social life with occasional flares. I did have a really bad flare with problems with my bone marrow which stopped me working, but by then I was 65years old, so gave up. In summary, changes had to be made, but I had a good life. Treatments are so much better now too. If you are not able to do what you want, think hard about what you DO want and make sure that you are getting the treatment you NEED to do that. You need to be your own advocate and persevere to get this outcome. Fight for a 'good enough' life.
You’re right of course oldtimer. We must be our own advocates but sometimes I just don’t have the energy to fight and, as I said in my original question, it’s difficult to know whether it’s possible to live a reasonably pain free life or whether constant pain is now my normality. I too have had to make lots of changes - I don’t think it’s possible not to when we have these diseases - but it doesn’t always resolve the issues.
I don't think that these days you should be in pain all the time. If you are then your condition is not under control. I know how difficult it is to nag them and you get dispirited but there is treatment that will help. It often does take time to find it.
oldtimer has summed up life with RA really, really well. I think pain is not acceptable and one of the things that always occurs to me is that those who are positive in blood tests are much more easy to treat. Perhaps it's that RA is not one disease but a set of medical issues and every one is different. I've also had it for a long time and had 3 medications, 2 of which worked really well and a biologic which was added in a while ago but is being changed after the new year. My RA is in remission but please be careful and even those in remission can have other problems as although the RA for me is no problem I do have kidney disease and that is no fun at all and is also incurable. Many live with things that can't be changed and I have a Bluebadge, how many times do people look at me as yes I look really well, sound really well but am not. I would advise you not to dwell on the negative but look to positive things in your life. Life changes for all of us over time and we age, not many if any 60 years olds climb mountains but aged 60 I did walk up Snowden on RA meds (Lefludamide ) and I've walked and rambled in many countries and all over the UK. Then an AKI and life changed dramatically so enjoy every day, there will be a medication that works for you so keep on trying and be patient. That is not easy but some side effects do wear off and LEF was dreadful for about 12 weeks but then the pain and swelling went and it was life as normal. So it could be worth keep on having an open mind and staying positive after all you have nothing to loose and a lot to gain. Short message- Keep on fighting and stay strong. xx
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