I have been told I have primary. I have a chronic back trouble my hand get cramps and losing movement my feet are bad feel like bones are going to snap as so stiff. Have real trouble with movement walking swelling etc had blood tests came back normal .??? I take high proteins and ginger etc etc that's why my levels look ok putting photo of foot when having attack please can anyone give me sound advice as not getting any better or staple feel like I'm losing the will many thanks Shirl

8 Replies

  • Do you see a rheumatologist? The troubles I have come and go. The spirit follows on.

    You seem to need treatment. Best wishes,

  • Thank you for your reply no I don't and haven't. It was only confirmed this week. I always thought it was bad vascular problems as had D V T. when I was 29 yrs.I have a good Doctor but don't s he u Nader stands this. It got worse when I was put on beta blockers for paltions. I want to see a rheumatologist but don't want to offend my doc she has offered me a tablet I said no as if eel I want to see someone propley who understands what's going on

  • I did reply to you but think I done it wrong new on here ;)

  • Hi Shirley, while I'm no expert I really think 'a tablet' is not going to solve your problem. You really must insist on getting referred to a specialist and you mustn't feel this will offend your GP. When I was first diagnosed I didn't want to annoy anyone and was afraid to fight my own corner, often to the detriment of my health. However after 20 years I have learned I know my body better than anyone and I have learned to stand up for myself. Hope this is of some help to you.

  • Thank you for your reply. I will ask to be referred today. I have been fighting Doctors and Hospitals for 10 years now and made a name for myself. As kept beening told nothing wrong with me. For the past 3 years I have been taking photos to prove I'm not lying . This is why I have a problem now of asking because of so many years of trying to get them to believe I'm ill . I gave up work last October . As can't do it anymore. And I'm not getting better only worse. Thanks again

  • Hi Shirley, From what I have read it can take people many years to be diagnosed with something like Scleroderma and that blood tests can be negative even if you have the illness. I have Raynauds which is secondary to Scleroderma and for years I was told theres something wrong with my bloods but it was only mild & they didn't know what it was. I had aches & pains in my joints & was constantly fatigued along with my Raynauds attacks getting worse. Eventually my GP sent me to a rheumatologist who diagnosed me which was done through taking a clinical history, examination, X-rays & bloods. Do ask to see a Rheumatologist and don't give up.

  • I was lucky - if you can call having scleroderma lucky- in that I was diagnosed relatively quickly following a consultation I paid for with a private rheumatologist. I am now having all treatment on NHS including 6 monthly appointments at the Royal Free in London who are really clued up about Scleroderma. I was a bit concerned that I would upset my GP and local rheumatologist but I think my health is more important than their feelings and in any case they were not upset and are pleased to get the reports on my condition from the Royal Free. I have only been diagnosed with scleroderma for one year but in that time I have realised you have to be proactive in your own care. I have seen at least 10 consultants in a bid to try to find a cause and a cure for the relentless pain in my feet. Although I feel I have been passed from pillar to post I won't stop until I do. DON'T GIVE UP HOPE.

  • Hi thank you for you I put . I have to make appointment with a rheumatolist so hopefully things will start to get sorted

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