Where to from here?

Help. Two and a half years ago I was diagnosed with RA then it was Chronic Regional Pain Syndrome then it was Connective Tissue Disease with scleroderma, now I've been told that the reason my left hand hasn't worked for more than two years is because it is painful. What???? Give me a break. If there was nothing wrong with my hand in the first place why diagnose me with anything at all. None of the standard RA drugs have worked, and no wonder as I don't have RA but some of the Anti TNF drugs worked for a month or two.

So now I'm really confused and have no idea where to go from here. I am in constant pain, all my joints are inflamed and aching, my fingers and toes are terribly stiff and inflamed, I get terrible pins and needles in my extremities and my feet are now so swollen putting shoes on and walking are torture.

I am not entirely sure I belong in this association as I don't have Raynaud's and I have no idea if what I am going through is Scleroderma and or something else.

Talk about confused. :(

13 Replies

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  • Are you under a rheumatologist?

  • Yes I am and even he seems to have washed his hands of me now. I saw him on the first of September and he doesn't want to see me again until January

  • Yes I am and even he seems to have washed his hands of me now. I saw him on the first of September and he doesn't want to see me again until January.

  • Ask for a second opinion.

  • Ah thanks, he is the fifth rheumatologist I have seen already so I have had 5 opinions, hence my frustration.

  • arrrrrrrrrrrh !!!! I have the same problem except ive been fobbed of with joint hypermobility and depression.....by a 2nd rheumy who has wrote a letter to my doc(with the wrong symptoms on it) stating i was very tearful and he wonders if might benefit from antidepressants and these may have an impact on my physical symptoms!!!!! Whats all that about? Stupid man...The pain and you not listening and prescribing me what ever you feel like on the day.....oh and asking me if was flu pain from my recent chest infection might have something to do with me being tearful/depressed!!!!! Im sorry for venting there but I can fully understand your frustration! Ive been suffering with pain in all my joins and pins and needles and chest pain for 10years now and it looks like its back to square one for me but I really hope you get sorted out soon!

    PS if you get any answers can you point me in the same direction!

  • OMG poor you. If I were you I would change my doctors. They don't sound terribly sympathetic.

    Guess all any of us can do is take care of ourselves as best we can and try to keep positive. I know it sounds like a cliché but I think it is true.

    I have just been taken off my painkillers as they are damaging my stomach and I can feel the skin on my face tightening up now but there is nothing I can do except find a bright side, something to laugh about and when I find something I will let you know. All the best, Ax

  • My first rheumo who was very good, told me she had NEVER treated a scleroderma patient that had not been through a very traumatic experience. I held off on the anti-depression meds for 3 or 4 years after diagnosis. Then I had a 2 week vacation from work, woke up from a dead sleep in a full blown panic attack that I had never had before. I really thought I was suffocating. From there I went into a total nervous breakdown. Long story short I have been on 100 mg. of zoloft for 7 or 8 years and it helps with your outlook and makes you feel semi normal again. I have CREST symptoms now but really believe I would have gotten much worse without the emotional help.

  • Many thanks for sharing that with me Ax

  • I have some of the same symptoms as you have. I also have neuropathy in my feet(pins and needles, numbness, pain). I think from the constant loss of blood flow then warming up my toes ad balls of my feet are now permanently swollen. Two things have helped ablout 50% with the pain. I take 200 mg of Lyrica a day and 50 mg of zoloft(an antidepressant). My feet are still swollen, but the pain is so much better. The zoloft has really helped with my mood in general. I'm much more able to cope with things especially the mental and emotional issues that come with a cronic disease. I'm also on chemo and two other heavy drugs for a rare blood disorder. Both the Lyrica and Zolf have improved the quality of my life to such a great degree. Hope this helps, Faith

  • Many thanks Faith, I will check those out. Ax

  • If you have scleroderma,an ANA blood test will come back speckled, which my first dumb ass doctor thought meant it was negative, so he told me I had carpal tunnel. so much ignorance in the medical field.

  • Yes, sometimes things are not clear and it is difficult to know which way to turn for both the doctors and us. Frustrating I know. Ax

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