Cold, tight leg muscles

[ADonnelly]

Hi, I have had Reynaud's in my fingers for many years. It's mild and I manage it without any treatment.

For the last 18 months I've had an issue with my legs which can't be explained but it does seem to be related to temperature. The muscles in my calves go very tight and it can also move up into my thighs. Sometimes there is a prickling sensation though not pins and needles.

The symptoms disappeared completely during the summer but have come back with a vengeance since October. Although the tightness is there all day I can feel a difference when I go into a cooler space in the same way that the Reynaud's in my fingers can be triggered.

I know that Reynaud's is confined to the extremities but I'm just wondering if anyone has experienced anything similar. My doctor seems to have no idea what's causing it and so far the only way to relieve it is to curl up with a hot water bottle or go to bed.

Any suggestions would be welcome.

Thanks

Anne

[OldTed60]

Have you had any blood tests for autoimmune diseases I wonder? I don’t have any experience of primary Raynaud’s because mine only started menopausally, after the sudden onset of poly arthritis - diagnosed provisionally as RA - later as Sjögren’s and now, Systemic Sclerosis. But I do experience similar pain to that you describe in legs - amongst many other symptoms. The rheumatology nurse asked the scleroderma team about worsening knee, thigh pain with discolouration and they told her to let me know that Raynaud’s can affect the knees as well. I’m not diagnosed but I suspect mine is mild Myositis. I would think your GP should test and refer you to a rheumatologist to get this looked into. I find a heated throw/ over blanket invaluable for my leg pain.

[ArthurFoot]

I have had Raynauds and Scleroderma which is under control but now have a problem in my legs and feet. From being on websites like this there are plenty of people who have leg and foot problems but the doctors are not interested in it. I was referred to a vascular surgeon, the scans of my legs show a vascular make up that no-one in the vascular team have seen before until they conferred with a scleroderma doctor. The scleroderma doctors are not interested. The vascular surgeon has been very supportive but theres not a lot they can do ... sorry I can't be more help but there doesn't appear to be any medical interest at all except from vascular who are interested because they have never seen anything like it before.

[ADonnelly]

Thank you both for your replies.

ArthurFoot, I'm sorry to hear that no-one seems to be interested in your problems. I'm sure that's very frustrating for you.

OldTed60, my doctor has done some blood tests, but I'm not sure what for - I think they were mainly around vitamin deficiences. I'll push for autoimmune and rheumatology tests neext time I visit.

You're right about the heated throw but it's not always practical, is it? I don't want to be tethered to a power point, or a hot water bottle for that matter!

[Driver58]

Hi ADonnelly, I am having a similar problem with my legs especially the outer sides. When it comes on it feels like I am being injected with ice cold water in that area. It starts at my ankle and runs up my outer thigh sometimes accompanied with cramps. Do you feel that sensation too?

Thank you.

Driver58

[ADonnelly in reply to Driver58]

Sorry to hear that Driver58. I wouldn't describe mine as ice cold water. I notice the muscle tightness first. I don't have the pain I'd associate with a cramped muscle. It's the back of my calves and sometimes the lower parts of my thighs. The tightness can be so much that it's noticeably uncomfortable to walk. Then sometimes a shivery type of cold, the way I'd feel when my skin is going goose-pimply.

Do you think yours is connected with Reynaud's?

[Driver58 in reply to ADonnelly]

I was hoping there was a connection because I have the most severe advanced type where I actually get infected nail beds and have been close to gangrenous so am on Nephedipine. I have been unable to get a doctors appointment thus far :(. Thank you for responding😘

[ADonnelly]

Just to update this in case it's any use to anyone.

I haven't made any progress medically with this - still don't know what's causing it. But I have discovered that wearing nothing on my legs, or loose trousers reduces the effects. So wearing only a dressing gown with bare legs is best, loose pajamas aren't too bad, close fitting jeans cause the symptoms almost immediately.

So I'm getting some relief but I'm not the sort of person who's happy going to the shops in pajamas so it's not entirely practical.