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Scleroderma & Raynaud's UK (SRUK)
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Hi everyone

I'm 50, male and was diagnosed with raynauds and limited scleroderma with overlap polymyositis almost a year ago. I've got a rheumatologist who's been monitoring my symptoms, but doesn't seem to have answers for a few of them. I have sores that keep appearing on my arms and seem to never fully heal. Also my legs seem to tingle (for lack of a better word) all the time. My iron levels have been on the low side because I was a anemic so I'm on iron twice a day. They think the low iron could be causing the sensation in my legs. So I was taking 1iron pill for well over a year to bring levels up and now am taking it twice a day. Getting alittle discouraged and am feeling like these issues are falling on deaf ears. Has anyone else had these symptoms or similar to them. Would appreciate and feedback.

Thanks, Terry from Massachusettes

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Hello Terry,

I am aged 57 and have a similar diagnosis to you, plus psoriasis. I have never had the tingling symptoms nor the sores. Have you tried upping your dosage of Vit. C and Vit. D?

I occasionally take iron in the form of a liquid in a sachet called Spatone. I have it in fruit juice. Where are the sores on your arms?

I am not surprised you are feeling discouraged. It is so difficult to understand Scleroderma - it is like a monster with multiple heads. Cut one off and another one pops up. Eventually you get used to it.... :-(

Best wishes,

Tim

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Hey Tim'

ThAnks for the reply. The sores are mainly on my forearms and the skin around them tends to get really tight causing them to be quite tender. Also I didn't mention but I'm taking methotrexate and I read that it can lower your immune system. I was wondering if that could also be adding to the issue with the sores?

Thanks again, Terry

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I am not a doctor so I can't say, but it sounds plausible. What dosage of Methotrexate are you on? I'd imagine a low dosage should be tolerated. Can you check the side effects of M online? Have you had a vitamin deficiency test at all?

T

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Are your sores ulcers?? Many of us suffer from ulcers, mostly on fingers because of the reduced blood flow from Raynaud's, but I get them around my ankles. Haven't had any for a couple of years because I am fanatical about wearing thigh high support stockings. Sclero has been described to me as a blood vessel disease and in some ways that seems correct. We get Telangiectasia which are collections of capilliaries under the skin on face, hands and trunk. I have a few in those places but now I am prone to Anaemia because of Angiodysplasia in my small bowel. Once again Angiodysplasia is a collection of small blood vessels but these ones bleed - related to Telangiectasia they tell me. I have Systemic Sclerosis which involves my internal organs such as Oesophagus (Achalasia) Stomach lack of peristalsis, small bowel lack of peristalsis and muscle tone, and rectal incontinence due to muscular atrophy. No fun at all actually but I am now 72 having had this beast since I was 22 and am planning to be here for a good while more. I probably have vitamin deficiency because of the lack of proper digestion and I probably am a bit deficient in vitamin D because I find it hard to get out of doors often enough.

Like you mention I have wierd problems in my legs, painful and weak calf and thigh muscles which the so called experts tell me is caused by me not trying hard enough!!!!!!!!!!!!!!!!! The more I try the more painful they get and the more tired I get and the longer it takes to recover. I have a wheelchair which I resort to for longer walks, like a visit to meet my brother at the airport yesterday. No way could I walk from the car, through the terminal then wait in the arrivals area for goodness knows how long until he appeared, then back to the car and so on and so on.

I thought the idea of Methotrexate and similar drugs was to lower or suppress ones Immune system because it's overactivity is what couses our problems.

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Yeah I'm taking a total of 20 mg of the methotrexate plus vitamin D.

And again thanks for the reply, I guess it may sound like I'm looking for a diagnosis but I was more hoping that someone might have had similar symptoms.

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please contact rick simpson email ricksimpson98@gmail.com

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