Hi I have what my drs are calling over lapping connective tissue disease and recently been getting burning and tingling in my hands and feet wondering if it could be erythromelagia? I've attached a photo TIA
Burning hands and feet?: Hi I have what... - The Erythromelalg...
The Erythromelalgia Association
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Burning hands and feet?
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Lynzy6
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Hi Lynzy6 😊🌸🌿🦋
You’re pic looks like the redness of Erythromelalgia especially down on the lower left side. Do you react to the weather or stress?
I have inherited Erythromelalgia...I was born with it and therefore one of only three globaly with this form. When I flare I turn as red as a cooked lobster and with severe flares all over. The worst flare up includes billions of hot needles being pressed all over my head. My breathing is impaired and I feel faint. It is excruciatingly painful. As mine progressed it involved the head/needles in 2012.
I also have MCTD mixed connective tissue disease.
How long have you had your symptoms?
Feel free to ask me questions.
😊🌸🌿😊🤗💗😘
hi honeybug I was reading your post I also inherited erythromelalgia I was diagnosed 20 years ago but ive had it since birth so I know what your going through I get the needles in my head aswell which can be very painful and for the burning in the hands and feet but I also get it jn my knees aswell I'm like tis nearly 7 days aweek I put my feet in freezing water for hours at atime its the only thing that helps I also take paracetamol 500 with dihdrocodeine 30mg have done for 20 years takes the edge of it gabapentin I just pile weight on I suffered for 30 years without doing anything I'm 56 now .
Hi bullet275 😊🌸🌿🦋
I am sooo very happy to meet you. When I was diagnosed 5 years ago this year by DNA (which was done twice to confirm ) then my 🌟 Neurologist Dr Eva Feldman at the University of Michigan conferenced the other specialists in this field to get their opinions. They all concurred that I indeed was 1 of ONLY 3 worldwide with inherited Erythromelalgia.
You would be one of the 2 remaining people with this rarest form of this gene mutation.
Welcome to our most special group and I’m am thrilled beyond words to finally meet you.
Please keep in touch with me. Once you get to know me we can exchange email addresses to continue our chats more privately when desired.
I’m so sorry to hear about your having to put your feet in ice water for hours for relief. I couldn’t do that because of my severe Raynauds Phenomenon. It is cyclic to my IEM. One always follows the other or simultaneously. Do you have any damage to your feet /lower legs from the ice water treatment? Oh I feel sooo badly for you about how you’re suffering. I just said a special prayer for you dear.
I talked with Dr Feldman about the serious burning pins/needles sensation especially all over my head and how it affects my breathing and told her I knew it had a hormone component to it. She was amazed that I made that correlation and agreed. She prescribed Paxil/Paroxitine Hcl tabs 20 mg 1daily. It is the only thing that has helped me since I stopped my HRT post total Hysterectomy at age 46.
Also with our rarest form of IEM salt is a huge trigger as well.
I can’t take pain meds as my GI tract won’t tolerate them.
So I just have to endure all the pain which I admit is getting harder as I age.
I hadn’t gained much weight until I had steroid treatments started in 2012 - 75 to date - and since having those injections in my thumb 6 months ago I’ve really gained weight.
I am a member of the TEA -The Erythromelalgia Association - are you?
I forgot to tell you I’ll be 68 in April.
I live in Michigan in the USA 🇺🇸 where are you located?
Thank you so much for contacting me. 🤗
EvaJo 😊🌸🌿🦋🙏🤗💕😘
Hi bullet275
How are you doing? I hope you’re not suffering too much.
We’re having a big weather change from Spring to harsh Winter conditions today. These big swings are so hard on me. Do you suffer with them too?
Does stress trigger flare ups for you too??
Hope you have as painless rest of the week as possible.
Take care. Best wishes.
xx
A agree with honeybug great reply
my version of this always flares on a daily cycle all year round: usually at it’s worst by early afternoon and continuing extra bad through to evening and into the night. My feet, hands & face are worst affected. It’s aggravated by anything that warms me up, including exercise & bedding. I was diagnosed by a rheumatologist, several years after symptons began to bother me. My GP had never heard of erythromelalgia, nor had i
My erythromelalgia is simultaneous with raynauds, both secondary to infant onset systemic lupus (and the usual secondary illnesses including sjogrens, small vessel vasculitis etc). I was born with another connective tissue disorder: Hypermobile Ehlers Danlos Syndrome. I am 64 and have had raynauds since i was a little child, but my erythromelalgia came on in my 40s. My health profile is fairly typical of the way immune dysfunction & connective tissue disorders tend to overlap
Here is a link to the best official source of info i’ve found on erythromelalgia. This article has helped me lots to understand my diagnosis and how it relates to my other illnesses, also how to best manage my erythromelalgia symptoms:
rarediseases.org/rare-disea...
Take care and good luck 🍀🍀🍀🍀 coco
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