Hi,
Lately I have been getting Raynaud’s symptoms in my left hand, in that past, the hands and feet just burned all the time, then they started to alternate between hot and cold, now my hands are getting white/ blue tinged… Have many people in the group been Dx’d with this?
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I know you are an old timer (member that is), and aware/posted on our Raynauds/EM spotlight. I have therefore put the link for the benefit of our latest members :) http://forum.livingwitherythromelalgia.org/forum/topics/spotlight-on-...
To answer your question , Jon ,
Approximately 40 % of EM 'ers report having co existing Raynauds, which is highly indicative of severe hyperactivation of the sympathetic nervous system causing extreme vasodilation/constriction of the peripheral blood vessels. Raynauds is also informally labelled an 'inverse erythromelalgia'. I am so sorry you are developing Raynauds, Jon. I suffer with EM and co existing Raynauds myself - as do my colleagues Alina and Nel, and it is an intolerable double whammy. Could it be you are taking something thats causing you to overly constrict?
God bless
Hello Jon.
As Mads said it is quite common. I have this too and mine started several months after my Em. It can make treating both quite difficult both medicine and lifestyle treatments are complicated. I call it living walking a temperature tightrope. Just a degree or two one direction or the other sets one and strangly sometimes both off at the same time! I am sorry this has been added to your daily struggle. Mads put a link to some great info on this.
Take care
Hi Jon...Sorry to hear this. I have had Raynaud's for the past 4 years and have developed EM only after an operation about 5 months ago. Did anything really stressful to you or your body initiate this? Literally 1 week after my surgery all my issues have worsened with the Raynauds and the EM kicked in. Hope you feel better soon!
Thanks for the responses, I have had EM for 29 years, the cold feet and hands started a couple of years ago. The hand changing color just started recently. I did have epidural injection in my lower back, so maybe the steroids triggered some reaction?
The doctors think I may have Ankylosing spondylosis, because my SI joints have eroded, so that is a tad stressful…
Yes! My one finger gets white if I get real cold or pick up ice. First happened 2 years ago. Maybe once every 3 or 4 months. not often. Now one finger on the other has happened once.
I test my numbness with Iliana, my friendly Macaw…
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