I am new to the site and wanted to say hello. I am a 43 year old single mom who works a hectic full time job and is currently dealing with a mother whose health has been rapidly declining. Needless to say, life has been very stressful for awhile. Unfortunately, I believe stress is my main trigger.
I began experiencing a myriad of symptoms the summer of 2010. A positive ANA on blood work ordered by my primary in early 2011 got me a visit to a rheumatologist. In May 2011, he diagnosed me with Sjogren's syndrome through a lip biopsy. Despite putting me on Plaquenil (which did help to a degree), I continue to have sometimes debilitating symptoms. I continue to be somewhat skeptical of the SS diagnosis, as I do not experience the trademark SS symptoms (mainly dry eyes and dry mouth). I have brought up the redness, hot skin and swelling (mostly in my hands now, but also feet, ears and knees), but the rheumatologist continues to pin everything on SS. My primary physician is stumped and sent a referral to Shands in Gainesville, FL, which I am waiting to hear back on.
I wanted to share a few pictures and get members' opinions on whether this looks like what they experience. It's the only explanation I've been able to come up with in all the research I've done myself.
Thanks for reading! I hope to connect with others who are going through the same thing and encourage others.
Hi Samantha, I'm really sorry for all the stressful things in your life. I'm retired and my kids are grown. I can't imagine having EM, and being a single, working Mom!
Your condition LOOKS familiar. I sure can't say what it is. Erythromelalgia can be (and more often than not is, I think) secondary to some other problem. I just mention that because even if you become diagnosed with EM at some point, there's still the question of Why?. I googled Sjogren's syndrome. I can see why you wonder, without the dry eyes and mouth. Maybe a second doctor, from another specialty, would have another angle on it? Dermatologist, vascular guy?
I completely sympathize with how frustrated you must feel. Stay with it. Did you ask the rheumatologist what in the biopsy told him it was Sjogren's. What I read was that dry mouth and eyes were the first clues. Is there a marker in the blood for Sjogren's, like there is for rheumatoid arthritis?
I sure don't know, but I've been reading my brains out, and most of the proposed reasons for EM symptoms are not actually being connected to autoimmune problems, though a few are.
I tend to ramble on, so I'm sorry if I have said more than I know anything about (as usual). But every angle is worth considering with EM. I hope the best for you.
I am 39 and believe that I too have both Sjogren's and EM. Like you I suddenly started experiencing a myriad of symptoms, just over a year ago. Nearly all of them fit with Sjogren's syndrome - including dry eyes and mouth. However nothing has shown up in my blood tests yet so I cannot get a positive diagnosis. But I can find no other explanation for my symptoms and neither can the many doctors I have seen. The Sjogren's symptoms include circulation problems and these seem to have triggered the EM (diagnosed by the Royal Free hospital in London). All sorts of autoimmune conditions seem to cause blood vessel issues like vasculitis and I believe anything that effects one's circulation can set it off. I am lucky that mine is mild compared to most people. I get it in feet, hands, occasionally ears, and genital area. I think your photos certainly look like EM. On the Sjogren's forums there are certainly a few people who have a positive Sjogren's diagnosis without the dry eyes and mouth - I think that all the autoimmune conditions can be very clearly distinct in some people, but in others can be quite vague and overlapping with people experiencing all sorts of combinations of symptoms, and that's why doctors get so perplexed. You may have some kind of 'unspecified' mixed connective tissue disorder......
I am not a doctor at all, but I would say one of the major symptoms of erythromelalgia (apart from the redness, swelling and heat) is burning itching pain, so you may want to look out for that. My best advice would be search for a dermatologist or rheumatologist who has an interest in this area who can diagnose you properly, as it may be primary or secondary EM, or it may not be EM at all. This website is a great place to find one. I live in the UK, so I'm afraid I can't help you there, but I have been referred by one rheumatologist (who kind of reached a dead end with me, but was thorough enough to find another doctor) to another who has an interest in erythromelalgia.
I'm not a doctor, but the picture of your hands (in particular) and feet are *exactly* what my hands and feet look like and I have medically diagnosed Erythromelalgia. While I don't have it on my ears, I have read of people having it everywhere from their head to their feet, (including ears, legs, head, you name it.) Have you brought these photos to a Neurologist or been tested for neurological disorders? My EM happens to be secondary to Neuropathy, so there's usually an underlying cause. Unfortunately, because EM is so rare, very few doctors have heard of it, let alone know how to diagnose or treat it. On my 15th+ try, I thankfully found my Neurologist/Pain doc who works with and (attempts to!) treat Erythromelalgia. If you're able and willing to travel, there are a few doctors scattered throughout the US (and Dr. Davis at the Mayo Clinic) who are able to diagnosis it. Ask around here, ask on the EM- Helping Hand Facebook page, or contact the Erythromelalgia Association for referrals and/or help.
I completely empathize with you and what you are dealing with. The past two years (for me) were spent going from specialist to specialist, getting test after test. I was about to go to the Mayo Clinic, but was finally diagnosed correctly, so I opted not to go. I was only diagnosed earlier this year, but have been dealing with this illness for two years now.
I wish you the best and if you're uncomfortable with your Rheumatologist's diagnosis, I would highly suggest getting different opinions and making sure you have the correct primary diagnosis.
You said that you have found a Neurologist/Pain Doctor that is trying to treat your EM. Would you share some of his treatment ideas, medicines etc. I currently use Tramadol, Cymbalta,and Hydrocodone. I tried Lyrica but would not give that to anyone....it messed with my memory. I tried Capasacin, but had a horrible rebound effect turning up the burning times 3. Aspirin worked well for about a week. Will try most anything that is legal....even hanging upside down in my underwear eating bananas!
Bex77 said:
Hi Samantha,
I'm not a doctor, but the picture of your hands (in particular) and feet are *exactly* what my hands and feet look like and I have medically diagnosed Erythromelalgia. While I don't have it on my ears, I have read of people having it everywhere from their head to their feet, (including ears, legs, head, you name it.) Have you brought these photos to a Neurologist or been tested for neurological disorders? My EM happens to be secondary to Neuropathy, so there's usually an underlying cause. Unfortunately, because EM is so rare, very few doctors have heard of it, let alone know how to diagnose or treat it. On my 15th+ try, I thankfully found my Neurologist/Pain doc who works with and (attempts to!) treat Erythromelalgia. If you're able and willing to travel, there are a few doctors scattered throughout the US (and Dr. Davis at the Mayo Clinic) who are able to diagnosis it. Ask around here, ask on the EM- Helping Hand Facebook page, or contact the Erythromelalgia Association for referrals and/or help.
I completely empathize with you and what you are dealing with. The past two years (for me) were spent going from specialist to specialist, getting test after test. I was about to go to the Mayo Clinic, but was finally diagnosed correctly, so I opted not to go. I was only diagnosed earlier this year, but have been dealing with this illness for two years now.
I wish you the best and if you're uncomfortable with your Rheumatologist's diagnosis, I would highly suggest getting different opinions and making sure you have the correct primary diagnosis.
Hi Samantha.
I am sorry to hear about everything you are going through and all at once! I have an un specified connective tissue disorder. There is nothing in my blood work apart from an occasional elevated SED rate but just based on the many problems with basically my whole body in the last 3 years fro skin rashes,neurological ,hair falling out, gastrointestinal and 2 blood clots one in my arm and one in my leg ( both unexplained) and that’s not even mentioning my burning skin! I finally found a doc that is treating me she says if it walks like a duck and quack likes a duck it’s probably a duck! She recognizes my EM as a separate condition and we are trying to treat it (not so much luck yet) but she seems to think I just have to unrelated conditions. I am not convinced. It just seems so strange because they both came about at the same time not to be related. Unfortunately my treatment for my autoimmune is helping with those symptoms to a degree but not mu EM. One might think that means they are not related but maybe the autoimmune caused damage to my nerves and that’s how it started. Long story long… I am no doctor but I think it is helpful if you have EM as well as an autoimmune that it’s important to get it properly diagnosed because the treatment is different.please keep us posted as you find out more. Take care.
Alina
