An introduction to me, and a few questions

Welcome New Member Introductions
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lisers

Yes shes really a great dr I really feel shes through and listens.And she always has a correct answer she cares about her patients.It is hard when people don't understand how it effects our lives.



lisers said:

Cheryl, I'm surprised your Rheumatologist was able to diagnosis you. The practice I was seeing for my Fibromyalgia didn't have a clue as to what was going on with me. I'm sorry your gp told you it wasn't disease. Regardless of what name it is called, a disease, or a pain syndrome you are still experiencing disabling symptoms that change your life dramatically.

It makes me mad that those of us who suffer from a rare medical condition are not usually supported or helped much from the medical community. But boy if we were given a diagnosis of say "cancer" (I could also list all kinds of other medical diagnoses) we would have all kinds of understanding & support. I'm not minimizing other illnesses but it sure seems like doctors minimize what we are experiencing.

crazygrandma said:

I also am grateful for this web sight.I also have trouble with stumbling sometimes when walking too.I was also told I didn't have MS.My gp told me that EM was just a symptom of something else not a disease!!So from now on I won't be asking him any questions about EM because he clearly doesn't have a clue!! I will be going back to my Rheumatoligist in March who diagnosed me.I will get my info from her only.I am also new to this sight and the people here have great information and are very helpful if you have questions.Welcome.

Cheryl

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Wow - the possible link with MS is interesting. I have an aunt with MS and she has the same flushing and swelling but her Dr. has just written it off as a possible side effect from her meds.

23

Welcome Mandy! I am new too, and have many of the same questions that you do. Thank you for initiating the discussion so that wonderful people on this site can respond. Their responses have been helpful to me as well.

I also feel wobbly since my EM symptoms began. I am not at all comfortable climbing even a little ladder. I have to be very careful getting out of the bathtub and putting pants on, because it's easy to loose my balance when standing on one foot.

My redness is also mild compared to many of the pictures posted here, but I always get some swelling with a flare. My flares are triggered by heat, pressure (like standing or cutting veggies) and the time of day. 4pm is the magical time when my hands and feet begin to tingle and itch, and I'm much more sensitive to heat that time of day/evening. I also always awaken with swelling and pain, though cooling my hands and feet and doing some exercises to get my blood flowing helps a lot. It is terribly painful to walk when I first get out of bed, though.