I have Raynaund's. Will I eventually develop scleroderma?

I have had vasculitis in my lower extremities (in remission now). I also have developed neuropathy from a chemo drug. Now I also have Raynaund's in my feet and hands. The only time I have any relief from the pain in my feet is when I'm able to get some sleep. Feeling very alone. Although I have friends that are supportive, I feel like the pain is winning the battle. Any hope?

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  • Only a doctor could answer your question after tests. Do you have a rheumatologist? As far as I know most people who have Raynaud's do NOT have scleroderma. You seem to need treatment to improve. I know how you feel with your pains, it makes you feel very lonely and the future does not seem rosy. I am in this situation at present. But it does improve and I find that if I try and do things, go out, see people it takes my mind off the pains. Get treatment. All the best.

  • not everyone who has raynauds will get scleroderma. It sounds as if you are suffering and this can make you feel depressed at times. Please don,t let this go on . You need to speak to your gp and ask to be referred to sort out your pain. You are not alone and there are people out there who can help you. best wishes Nuala

  • From what I understand Raynaud's can either be a condition on its own - known as "primary" - or it can be caused by another condition such as scleroderma - known as "secondary". The best thing to do is speak to your GP and ask for a referral to a Rheumatologist who will be able to reassure you and carry out any tests he/she feels are neccesary. Also take a look at the information leaflets on the Raynaud's website - they contain lots of useful information.

  • Raynaud's is very common - there are 10 million people who have this condition in the UK with symptoms varying from very mild to more severe. Of these people only a small number (approx. 8,000) also have scleroderma. Tests are available which can help to eliminate or confirm whether or not you have scleroderma or any other underlying condition. Blood tests look for circulating antinuclear antibodies (antinuclear and anticentromere). If you are at all concerned then do ask to have a blood test. If the results are negative then you don't have scleroderma and if positive, further tests can be carried out as not everyone who has positive antinuclear antibodies develops scleroderma. Stress doesn't help so don't worry about something which may never happen when there is a way of finding out. All these conditions can make us feel isolated but the RSA has a good network of people who support each other. They also run a helpline if you want to discuss your problems.

  • Faith

    I have been torturing myself with this question for several weeks. Today, I had my annual l review with the rheumy and was totally honest with her about my concerns. She examined me thoroughly, and determined, I do not have scleroderma, despite having a digital ulcer recently. She is also re-doing bloods to be doubly sure.I do have Rynauds and Sjogren's syndrome. She also thinks there's something else auto-immune going on, but is not sure yet what it is. Time will tell.

    Just wanted to say, do what the others have suggested and see what your rheumy says. Fear makes all our symptoms worse.

    Hugs

    Kathy

  • Although almost all patients with the systemic form of scleroderma develop Raynaud’s phenomenon it is still a very uncommon condition. Less than 1% of Raynaud’s sufferers develop any associated disease. An ANA (anti nuclear antibody) blood test, can help to confirm or eliminate any underlying condition. If you want to chat call the Helpline on 07530 810 964

    All the best

    AM

  • Hi faith89. No, the chances of getting scleroderma are very slim. If you are worried it would be best to speak to your doctor and get a blood test done to rule out any associated conditions. If you would like to speak to someone at the Raynaud's & Scleroderma Association please cal us on 01270 872 776 or email info@raynauds.org.uk Everything is kept confidential. You are not alone with this. It is good to hear you have supportive friends. Please get in touch.

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