Something on another thread, got me thinking

[VeronicaF]

Please excuse spelling and Grammer (its not my strong point) and sorry its long

I was reading what

helixhelix said on another thread-

Sometimes it can take years for RA to develop fully.

got me thinking what happened to me 20 years ago, I was getting pain in joints and felt ill

I keep going back and fourth to GPs, in end they I was referred to a rhemy, in those days it took two years to get an appointment, you went on a waiting list, 2 years!!!

I didn't know then in those days what a rhemy was, to me it was a specialist to find out what was wrong with me

he looked at my fingers and said it was depression and suggested I went on anty depress tablets, but on way out was told to have a blood test.

it was some weeks later near xmas, I had a letter from rhemy, saying on the blood test they were concered I could have a heartattack and make an appointment urgently to see my GP, something like that, it was a long time ago now.

it was xmas and GPs closed, so had to wait all xmas worrying, xmas went saw the GP with my letter.

they said-no it just showed how much pain I was in on the blood test-I didn't know or understand anything in those days-,and I was shy and wouldn't ask anything or question anything, wouldn't stick up for myself-in those days.

anyway it was then that GP said he thought it was fibromyalgia and I was treated for that for years, then after, when I say treated-I mean being told there is nothing we can do for you, just rest.

so for years I would go to bed when I was ill like that, take painkillers and rest and it would eventually go, it could take a week,or two to go and I could go a week or two or years before another bout of it,

but then the last few years it was coming quicker and faster,and would not go even with resting

I couldn't even lift my arms to dry my hair at times.

I remember ringing doctors crying for help, only to be told , oh veronica you have had fibromyalgia for so many years ,there is nothing we can do for you, why don't you go and join a support group for support.

then in may I noticed my fingers looking bent, and these funny looking lumps on them, and pain that didn't shift, 6 weeks and it wasn't going, and I was living on pain killers just to get through the day.

so back I trotted to GPs, this time it was a locom GP

and I asked if I had gout as I had looked on computer and my fingers were bent and my pain wasn't going.

I told him I suffer in silence, he said yes but sometimes you need help, and it was him who sent for RF test-and from the results everything was fast tracked, I saw a rhemy the next week after High RF.

when I went to see rhemy this time I was expecting the same treatment all those years ago-this time everything went very fast and all so differernt.

so reading what helixhelix wrote has got me thinking, did I have it all along? just taken years to come out fully?? I know I will never know but if I learnt anything

is to find out everything yourself, maybe that's why I am not so trusting with the medical profession???

so anyone on here in pain, don't put up with it with your GPs, demand help!!!!!!!!!!!!!!!!!!!!!!!!

please excuse grammer and spelling- what has happened to me over the years is all true!!!

[Mmrr]

As you say you can never know for sure, but it does sound as if something has been going on for a while. As far as I am aware fibromyalgia does not cause deformities in your fingers to occur. It is really important that you get the medicines that will help you now.

I too suspect that I have had RD for a long time, I've had 5 blood tests for rheumatoid factor the first in 1989 ! All negative. I've only been considered to have sero negative RD for 18 months, all previous episodes of fatigue and achy joints being put down to other things. I've got deformities in my hands and feet now.

I don't think our stories are so unusual, many people once diagnosed , retrospectively think they have had RD for a while.

[VeronicaF in reply to Mmrr]

Thank's Mmrr, I am and do now,they all can't do enough for me, I wonder why? I get the impression my GPs have been told off, not sure for sure but they give that impression they have when they talk to me now, the way they speak to me gives me that impression

I asked GPs for cream yesterday voltarol, had no problems-straight on repeat

[pauluk60]

been there am there NOW body aching head to toe again foot killing me at moment so gone on painkillers nefopam dont want to use Tramadol if poss seems as though nefopam taking sting out it but getting back to post been like this for yonks and no proper diagnosis well out of game at moment hopefully nipped it in bud not looking forward to a night in bed like this dont know if its going to get worse or not knew their was something brewing for a couple of days weekend now supposed to get a blood test done when it happens and steriods rheumy say so well akward now

[Natalie-Lhianne]

Funny you should say this Veronica - I was talking to my mum earlier about my recent flare and we can trace unexplained swellings etc back to when I was about 8 or 9. Not often enough to be at the GP all the time but I remember once having an xray on my red swollen v sore wrist. Also I have some hyper mobile joints and didn’t walk until I was nearly 2.... could very well all be connected.

Interesting point you make and good advice x

[Hidden]

Thanks for posting Veronica.

I think probably many of us have had very similar experiences.

I can remember something rumbling when I was about 18. I woke up one morning covered head to toe in a rash, my whole body hurt. I felt awful. Doc said I'd contracted German measles. Weirdly ever since then I'd get joint pain and rashes. Things would die down, snd then suddenly flare up again.

Annoyingly my joint pain was often put down to depression. In fact I was later misdiagnosed as having bipolar disorder. I get depressed, but do not have bipolar disorder. Mostly I get depressed when I'm in pain and inflammation is high. I also got very depressed when having my physical symptoms dismissed...shocker!

Since being treated for PsA my depression is much less severe. Firstly, I was right, there was (is) something physically wrong with me! Just being believed made me feel better. Secondly, I'm not in quite so much pain, and inflammation is reduced, which alleviates depression. Thirdly, knowing what the problem is makes me feel less helpless. Once i knew, I was able to research the issue and become bit more proactive in dealing with health issues . I hate being 'done to.'

I get depressed at times, and there are still occasions when I don't feel listened to, but knowing the beast I'm dealing with has given me a better chance of fighting it. It's also easier to put my case across to over worked stressed out professionals. Just tellibv me I'm depressed no longer cuts the mustard! People become depressed for a reason, find the cause alleviate the depression.

[stbernhard]

Hello Veronica, I hope you are getting the right treatment now and are in less pain. We can't really blame our GPs, many have no experience or training in recognising RA. So you are right, we have to inform ourselves and not be afraid to be a pain in he GP's backside by insisting on tests. All the very best to you.

[oldtimer]

It is certainly true in the past that many GPs had no training on how to spot early Rheumatoid Disease and were only familiar with picture of the severely disabled person who had had it untreated, or poorly treated, for many years. It was actually pretty similar for many specialist rheumatologists!

It is only now that the earlier signs are recognised more commonly that early referral is regarded as something to aim for. But everything is hamstrung by the lack of resources - recommendations for rapid referral are all very well, but if there are no rheumatologists to refer to...

[Hidden]

I think it's quite common to be misdiagnosed in mental health. You could go to six different psychiatrists and come out with six different types of disorders! There are no blood tests or xrays that prove bipolar, or any other mental health disorder. It's all based on the views of whoever you see on the day.

This doesn't mean that depression does not exist. Of course it does, and it's painful! The medical model stinks though. There are many illnesses that cause psychiatric issues. I had hyperthyroidism. It sent me batty!

[Leics]

Yeah I think I had issues with Jia I remember going to see a GP with very swollen knees and being in agony and I was told to go home get a bucket of water with two aspirin in it and soak my feet. I was 13 I think at the time and was examined with knee high boots on. My problems continued until I was 18 but then got better until I had a hysterectomy at 35 so in my case I think they thought it was all in my mind. I wish I was stronger in those days but I spent 2 years looking after my mum from the age of 14 until she died when I was 16. The rheumatology and GP wouldn’t mess with me now but I’ve had to have a few fights on the way.

[Hidden in reply to Leics]

Sorry about your Ma, and sorry you had to look after her at such a young age. That must have been exhausting in so many ways .

All the best.

[Stormpetrel]

Dear Veronica F

I read your post with great interest

Sounds so familiar and for many people on here I should think.

Sure you had RA from the start

I am not convinced about fibromyalgia to me it sounds more like an excuse for pain, it’s just a symptom of an autoimmune disease.

Anyhow thanks for taking the time to post this very thought provoking post.

All the best

stormpetrel 🌊