Raynauds and Thoracic Outlet Syndrome

Hi, I am 39 and I have suffered from Raynauds since I was 16, apart from when I had my children. The past few years have been unbearable. I was also diagnosed last year with Adenomyosis (a very painful disease in my uterus) and recently started GnRH injections to bring on a temporary menopause. This hormone injection has stopped the Raynauds attacks and they only come back when I am due my next injection. I've only just received a diagnosis of Thoracic Outlet syndrome this week but I have been experiencing nerve and circulation problems and pain for over a year. I have problems and pain gripping thing and my hands turn purple or white depending if I have them lowered or raised. Lying in bed causes my arms to ache, go cold and "go to sleep". The specialist is going to try physio first but if not surgery to release the trapped nerves and arteries/veins into my arms. I just wondered if anyone else experienced anything similar? I feel like hypochondriac with all these problems!

8 Replies

  • I have the symptoms of Raynaud's disease like you, hands and feet white and so on, but having Raynaud's does not mean that you can't have other troubles as well. It's interesting that you Raynaud's improves when you have children. I think that I had the same experience. I have Raynaud's and scleroderma with complications due to that, but I have recently had a hip replacement (not due to the same cause). You are not a hypochondriac (I know the feeling) you are someone with several problems. The best thing to do I think is to continue to be medically followed and treated. Are you depressed?

  • Thanks for your reply. I have suffered from depression a few years ago but not recently. Why, can it be related?

  • It could be related. Perhaps you should see a doctor about it.

  • Hello, sorry this is nothing to do with Emp76 original question, but you mentioned a hip replacement. I had one 18mnths ago and it is extremely stiff. I have had it checked by the surgeon who says from his point of view everything is fine. The rheumy says it is not caused by Scleroderma, but as all my joints are stiff I am not so sure. How is yours?

  • It was explained to me that I had to do exercises and walk as much as possible. The physio only gave me some pointers but I have developed some exercises by myself to keep my joints moving especially to get in and out of the car and drive. As for walking, it's not so easy because of my scleroderma but I do what I can. It takes longer because of our condition. Best wishes.

  • You're not a hypochondriac! I feel a bit crazy when I am asked about health conditions. I was having a conversation in work about some of the medical appointments I have - haematology for this, rheumatology for that, gastroenterology for the other etc... We all started to laugh about it - thankfully sympathetic people. I made the remark that I would make great glue if I were a horse. I do feel like a walking episode of House sometimes. The only thing is the tablets are working, I am being well looked after and can lead a normal enough life. I love normality!

  • I have seen so many consultants in the last year for various conditions that I have suddenly acquired, it does seem one thing leads to another. I have had Raynauds since I was in my 20s and had nothing much else wrong with me until I had my gall bladder removed 2 years ago, no warning signs at all just a very severe pain one night and I ended up in A&E. shortly after that I was diagnosed with scleroderma then a few months later essential thrombocythemia. I am sure my doctor must be sick of seeing me. I just wonder what I will develop next. I do feel a bit like a hypochondriac but everything I have got is real, so I can't be! I have stopped telling people all the things I have wrong as it does sound quite unbelievable as I look quite normal and am still functioning perfectly well apart from the intense pain in my feet which no one can offer a solution for.

  • I am so sorry you are going through all this. Don't think you are a hypochondriac because you are not you are going through really tough times. I knew I have been there. Your in my thoughts.

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