Wish I could get answers and help to stop these symptoms

Wish I could get answers and help to stop these symptoms

Have been told I have vaso spasms really unsure to what this is and how it started and why.When asking gp and rheumatologist neither have much to say which dont helps.They say it could be Raynaud's still and then say meds may help but as I'm only 31 they don't really want to do that yet.So I'm still each day having purple toes mainly when sitting down which are icy cold and have a creeping sensation on my legs which when I standup turn reddish purple on my knees and get a mottled purple look over the legs this goes away if I sit down,I also get alotof pins and needles in feet and legs which gets really bad quickly.I'm at a total loss I have no clue what to do to stop this or to help it and it worries me daily i have 2 children and just wish i could get rid of these feelings,I did quit smoking months ago,have not noticed any difference though.I have posted a picture which shows how my legs go when stoodup both legs are the same the image don't show the colour very well though.Sorry for the long post am hopeful someone may know something which may help.

8 Replies

  • I'm sorry to hear you are dealing with this. I have something very similar but I also get the other extreme where my blood vessels overdilate, turning the skin red and causing swelling. Because of this, not much can be done unfortunately. Tramadol helps me with the pain some and also a cream with lidocaine. I am pursuing a new treatment - ketamine infusion - but not sure about it yet. Since you have only the one side of the coin, they should be able to give you something to help the blood vessels dilate. Have you seen a vascular specialist?

  • Hi I used to have that last year in summer my feet went so hot and burning but I guess for me it has to be so hot before that happens I do notice when I evaluate my legs it helps the tingling and is not as bad and the heaviness but I cannot sit with my legs up all day and as soon as I put them back down within minutes it starts again,ive sat with one foot raised and one on the floor the one on floor toes turn purple other raised one dont stays normal colour,for me its the sensations of the creeping feeling and the discolouration that I hate so much I won't wear shorts or dresses and needing socks on to keep toes warm too.I have not seen a vascular specialist I saw someone at royal free hospital who did a thermography test and capillarscopy he said I have vaso spasm but gave no other info I just worry as it seems to be getting worse and its daily my gp just seems to not know either😢

  • We sound exactly the same. I am unable to leave my feet down for long. The pain is the worst part for me. Mornings are best so if I need to do any shopping or walking I tend to do it in the morning. Then the rest of the day my feet are up. Let's keep each other posted if we can figure something out!!

  • That's exactly the same as me I love mornings I rush about getting as much as I can done lol ☺

    Absolutely keep updated hopefully we will figure it out.

    All the best xx

  • Go back to your doctor, if you need medication you need medication.

  • I have the livido redicularis patterning on my lower legs ahd arms. My knees are quite spectacular. Rheumy has seen thrm but isn't concerned.

  • I wear jeans or jogging trousers so, to be honest, don't really notice if my legs turn funny colours....but, I do get a lot of pins and needles and numbness in my left leg mainly...I sit with my feet up on the coffee table an awful lot because it is painful to my knees and back to have them on the floor too much. But, recently was given x.rays and MRI scans which showed my spine is bending at the base of it which I was told was causing the horrible back pain and sciatica but no cure for this just painkillers. Never had back trouble in my life before the Sys. sclero. so am not sure if this is what is causing the joints and spine problems.

  • Mine is the same and I've had this since a teenager. No doctor or rheumy has told me what it is just poor circulation.

    I have been diagnosed with MCTD, sjrogrens and raynauds since age 36 when I started to get severe raynauds so I don't think it's linked but may be a genetic link to the autoimmune conditions

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