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Date: 28.08.2013
From: Ann

Subject: Hi ... Im new

Hello all. Just stumbled across this forum and so glad Ive found you all. My story is a bit long so please bear with me ...

I was first diagnosed with RA back in 2006. I was going through a very stressful time in my personal life and working long hours. It first started with flu like symptoms and tiredness. Then one day while sat at my computer my right hand started swelling, then my other hand with what I would describe as a feeling of having badly sprained wrists. I was sent home and by the time I got there both my feet were in agony and I struggled to get to the doctors. He took one look at me and said straight off ... RA. However the test he did came back negative, but I was told this sometimes happens. He was brilliant and referred me straight to a rheumatologist. By the end of that week I had it in my knees, shoulders, neck and elbows. I couldnt walk, drive or even bare to have the duvet on me at night because I was in so much pain. Ide never known anything like it. It got so bad I went back to docs who put me on a low dose of steroids. This helped to a certain extent but I still couldnt function properly or return to work. I ended up on the sick for 4 months, eventually returning on a part time basis as it was all I could cope with.

The Rhuematologist when I saw him put me on Sulphasalizine (Im sure Ive spelt that wrong!)and I also had a steroid injection into my right knee. Things ticked along for the next 12 months and seemed to settle. My main pain was in my feet and knees, the rest seemed to settle down but along with the awful fatigue I was suffering from I decided to give up work altogether in June 2007, one year after diagnosis.

Fast forward a year and I fell pregnant at the age of 41 ... a shock to say the least. During my pregnancy I was taken off all medication apart from strong painkillers and I don't know if it was my pregnancy hormones, but my RA seemed to settle. I had pain in my knees and feet but it was bareable. Anyway, I had my son in July 2008 and almost immediately I started to deteriorate. Feet, hands and knees. I couldnt bare anyone to touch my feet and my fingers would swell up and go stiff one day and take 24 hours to go down again. I struggled to get up the stairs and the fatigue was back ... I know I had had a baby so lack of sleep added to this, but to me it was a different kind of fatigue to just lack of sleep, Ive had 3 children before and this was totally different.

Anyway, I went back to the doctor who sent me back to my rheumatologist. Now this is where it all goes downhill as far as the NHS is concerned! He took one look at me and said ... I dont think it is RA. I think it is OA. because there is no significant swelling and no obvious deterioration since diagnosis. If it was RA you would be worse 2 and a half year after diagnosis... he then sent me for an MRI on my feet and hands. He refused to put me back on any medication apart from ibuprofen and sent me on my way to come back in 6 months. I had to ring the department to get my MRI results as no one had got in touch and was told all was normal. I felt so alone and rejected.

I struggled on for 6 months on painkillers. Pain in my feet was continuing and every now and then Ide get inflammation in my hands and wrists and knees with stiffness.

Next appointment with rheumatologist and it was a different consultant to the last one ... Im told its most definitely OA. That Im only tired because I have a baby (he was a year old by now and sleeping 12 hours through the night!) and that there is no swelling (despite me insisting I do get swelling) and the only thing he can put me on is ibuprofen. I felt like crying, as if he was calling me a liar and I was making it all up for attention. I was made to feel like a fraud and hypochondriac. Away I went again with an appointment for 12 months time.

In that year I cant believe I struggled by on ibuprofen. Some days I could hardly walk with the pain in my feet. I had a young child to take care of and I couldnt even get on the floor to play with him as my knees would not allow me. Some days Ide just sit crying from the frustration of it all.

At my next appointment I saw a different rheumatologist again who was german and I can honestly say I struggled to understand all he was saying ... who read my notes, had a quick look at my feet and hands and decided to sign my off!! I was so low by this point I just accepted it and went home, starting to feel like maybe I am imagining it, maybe I am just a nuisance.

By now we had moved house and had a new GP so after that last hospital appointment I went to see him. He was lovely and totally sympathetic. He ran some more blood tests which showed normal again. But after examination agreed there was slight swelling in my hands and feet and put me on strong painkillers and celebrex.

Ive coped reasonably well over the past couple of years on this medication. However, over the past 4 months or so my feet have got a lot worse. I have awful pain in my heels and balls of my feet aswell as my toes and Ill get a horrible ache right up my right leg to my knee which is bad enough to wake me up at night. The little and middle finger on my right hand is permanently swollen and both hands are so weak. I struggle to get up and down stairs and occasionally Ill get pain in my shoulders and kneck. Im so stiff in the morning that I have to hold onto walls and furniture to make it to the bathroom. I cant stand for longer than an hour with out having to take the pressure off my feet because Im in so much pain and i try to avoid walking as much as possible ... even a trip round the supermarket is a struggle and Im so grateful to have the trolley to hold onto. I havnt been doctors because the 3 rheumatologists I have seen have convinced me Im a fraud! However, after a summer of feeling like crap Ive got an appointment to see my GP this afternoon. I cant go on like this for much longer. I feel rejected and on the scrap heap. I cry alot and have a general feeling of worthlessness. Im sure Im suffering from mild depression because of all this and am sure Im going to end up in tears in front of the doctor when I start letting it all out about how Im feeling.

I just dont understand how when I was first diagnosed with RA I was absolutely riddled with it and even without a positive blood test I was told it was definitely RA as it dosnt always show up in blood tests. True, its nowhere near as bad as it was then, Im able to drive etc but I know Ide struggle to hold a job down. Has this change of diagnosis happened to anyone else? I just feel so frustrated and now 7 years after initial diagnosis dont feel like Im any nearer to knowing exactly what I have.

So sorry for my long ramblings but I wanted you to have the full picture which has lead to where I am today. If you read it all thank you for your patience.


Ann.x
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Date: 28.08.2013
From: Colin W

Subject: Re: Hi ... Im new

Hi Ann

not every one with RA are positive for RF , in general those with negitive RF tend to get it a bit milder if treated well

have they done blood test to show how much inflammation you got ( CRP & ESR ) there are other test they can do other that to check for RA

what happened to you when you had your son is typical for RA , never read this happening with OA and the main reason they developed steriods in the first place to mimic what happens with pergent women & there RA improving so much , the morning stiffness is also a sign of RA

personaly think you should be refered again , it dont sound like OA and the way it started it could be something other than RA because it dont normaly starts so quick , one thing in the link section above there is NRAS & Arthritis Care & both have free helplines if you need them
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Date: 28.08.2013
From: Eve

Subject: Re: Hi ... Im new

Hi, sounds like you have had a rough time of it. I know how frustrating it can be, especially seeing a doctor who doesn't seem to believe you.

I was going to ask about your inflammatory markers too, whether your ESR or CRP has been raised to indicate inflammation.

Have they done anything like an ultrasound on your hands? I know one of the doctors who doubted me quickly changed her mind when she could see disease activity on an ultrasound even on a high dose of steroids.

I was lucky in that my consultant was in the room a previous time and intervened when the registrar suggested I didn't need to be on drugs!

I really hope you get a resolution soon. It's a hard enough battle once you've got a diagnosis to get the right meds etc...

A good GP is a godsend. I was diagnosed with inflammatory arthritis pretty much straight away and later confirmed as Rhumatoid when the RF showed up in my bloods but my GP has been amazing, ordering scans which have shown up other issues.

I wish you all the best.
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Date: 29.09.2013
From: Ann

Subject: Re: Hi ... Im new

Thanks for your replies and sorry for not responding sooner. Been pretty poorly but now after 3 visits in 2 weeks to the docs (I can be determined when I want to be) It has finally been confirmed I have sero negative RA (she also called it inflammatory arthritis in the the same breath so a little confused over that.) My inflammatory markers were up but all other tests normal/borderline.

However, she dosnt think I need to be referred to a Rheumatologist yet and is keeping me on celebrex (not sure if thats the right spelling) co-codymal and ibuprofen.

Im still in pain with my feet and some days struggle to be on them atall and am getting alot of pain in my right leg at night which keeps me awake. The worst part tho, is the extreme fatigue and tiredness. It really knocks me for 6 and would say it is worse than the pain I suffer. I find Im breathing heavy and no amount of sleep seems to help. I have good days when Im not so tired and try to get everything done then I pay for it for days after.

Im going to give it a month and if I feel no better Im going to return to docs and insist on a referral I think.
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Date: 29.09.2013
From: Colin W

Subject: Re: Hi ... Im new

hi Ann

GP's tend to know very little about RA & would ask to be referred to get proper diagnosis , think you need a Disease-modifying antirheumatic drugs (DMARD) like Sulfasalazine or Methotrexate because it helps in stopping long term joint damage

would not give it a month , week or two max & insist on the referral
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Date: 30.09.2013
From: marlene

Subject: Re: Hi ... Im new

Hi Ann, just wanted to pop in and say high. Sorry you are having so much trouble being diagnosed. I have OA and although some things are similar you sound like more of a RA sufferer to me (although I'm not a Dr).
I hope you get sorted soon keep your chin up xxxxx
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Date: 30.09.2013
From: Ann

Subject: Re: Hi ... Im new

Decided to give it a week then go back to docs. I just dont want to seem like a 'moaning minnie'. Feel like Im camping out in the waiting room at the moment. On the other hand, I think Im entitled to ask to be seen by a Rheumatologist and receive the best possible care.

Thank you for all your kind replies. So glad Ive found this forum.x
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Date: 30.09.2013
From: marlene

Subject: Re: Hi ... Im new

Hi Ann, you are entitled to be seen by a Rheumatologist. When you decide to see your GP again tell him/her rather than ask that you would like to see a specialist.
Don't worry about keep knocking on the Dr's door it is the only way sometimes.
Take care x
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