Hello! I'm new here and seeking help from fellow sufferers from a symptom that no doctor has been able to diagnose.

[cakedecorator]

I have had SS with all crest symptoms for 40 years. 3 years ago I had a below the knee amputation on my right leg due to ulcers. I have a strange sensation that no doctor or specialist has ever come across up to now. Please has anyone experienced the same? My foot and my legs (up to my knees) suddenly FREEZE LIKE YOU HAVE PUT THEM IN A FREEZER with accompanying pain. This only lasts for a few minutes, then when it subsides the rest of my body burns up and sweats. This occurs any time, place and in any temp. Roughly 5/6 times in the day and the same in the night, obviously keeping me awake.

PLEASE PLEASE can you help me?

[positivedaybyday]

Hi

I've had acute diffuse Systemic Sclerosis for the past 3 years.

I've had all sorts of ongoing issues along this journey.

At one point my legs wouldn't work, it was as if all of a sudden they went numb & I couldnt take another step. It was a horrible feeling & painful.

I also had episodes where my feet were burning so much I had to put ice packs on them.

It has subsided now after intensive stem cell treatment in 2018. I was at the point of no return before this as my symptoms were so aggressive.

I found it helpful to keep a diary, dates, how long the symptoms lasted & how often. This really helped me when discussing my issues with my consultant.

As you know we all get different issues & need various types of help.

I hope you get some relief at some point & are able to find out the reasons for your problems. Xx

[monkeyworld]

I have only been diagnosed for 5 months and been given no information by any of the health professionals. I am so frightened as I have really bad breathing problems and the issue you describe with your legs I have. Its mainly at night and it actually feels like my legs are turning to stone. Its accompanied by a feeling of hot pins and needles all over my body and sweats. I wish I could help you but I am at a loss.

[cakedecorator in reply to monkeyworld]

Thank you so much for your reply, I certainly sympathize with you and hope you find an answer. It is terrible when no one seems to be able to give a diagnosis. I do not have the feeling of hot pins and needles, just my body that heats up and sweats. Up to now I have seen a consultant rheumatologist, a pain consultant, a vascular and diabetic consultant. Incidentally I am not diabetic. No one had ever heard of it before. We are in an elite group!

I tried typing "Freezing legs" into the computer. The nearest I could find related to Parkinsons Disease, but it wasn't really helpful. Try it out of curiosity. Keep in touch, if I find out anything I will let you know.

[monkeyworld in reply to cakedecorator]

Thank you so much it helps just knowing your not on your own. You are right I was recently hospitalised and none of the health professionals knew anything about it or what to do it has taken nearly 3 years to get the correct diagnosis. x

[Hidden in reply to cakedecorator]

Hi there. I have been getting freezing legs for sometime now - only recently diagnosed with Systemic Sclerosis - they don’t know what type yet though as I also have a very neurological presentation of Sjögren’s. This latter includes an overlap called small fibre neuropathy and Erythromelagia. Given I also have Raynaud’s I think, in my case, the turning to ice or burning (and related discolouration) is this threesome combination.

However I don’t get ulceration and nor, very thankfully, have I needed and parts amputating. After I was diagnosed with Erythromelagia I read the page here about it and it all made a lot of sense.

I also think I have some low level Lymphodema everywhere which Mycophenolate is helping a bit with - but I have a lot of pitting oedema in my hands and legs despite little obvious swelling.

I’ll give you the link just in case it helps you although what you are describing might be something entirely different. In my case EM causes digital burn blisters rather than digital ulcers.

sruk.co.uk/scleroderma/eryt...