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Anyone out there with Erythromelalgia?
Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)Comment receiving replies
Thanks for moving this post. I’m still trying to figure out this site. Symptoms started 3 years ago with feet just swelling really bad. My body temp then became so over heated ( I live in Houston) I must have had my thyroid tested every month. Then my hands became swollen and red. Then, neuropathy in hands and feet. Last December I had the worst flare w/ my feet. I couldn’t stand, they swelled, hot and so painful. Mind you, nobody knew what was going on. That lasted 3 months, subsided, and from there on, my face is so inflamed, nearly every day, all day. That causes my dry eyes, migraines and other flares. Backing up 3 years, I was diagnosed w/ gastroparesis, achalasia, undifferentiated connective tissue disease, and finally Erythromelalgia. Nobody I see, including neurologist, motility, podiatrist, dermatologists, rheumatologist and Pain specialist know how to treat. Literally, this all hit overnight and explained as idiopathic. I keep my house at about 65 during the day. If I get myself “chilled” flares start to calm. What is crazy is my hands will become white and cold as ice, yet I will be sweating and miserable. I’m taking plaquenil and has helped w/ joints and typical autoimmune symptoms. I’ve been taking aspirin every day, I have also stared magnesium supplements , rx creams, And stomach spores supplements To “heal the gut”. The concern is I need a dr to help monitor what I’m doing for this. Seriously, I live in Houston, one of the best places to be in the medical community and I can’t figure out who to see. Believe me, it took almost a year to figure out there are “motility experts”. I certainly have considered a mayo clinic but after I read how awful this condition is/ can be I think, mine is nothing compared to sores or a wheelchair. Do I seek treatment, Opinions now? Before or Incase it progresses? Or wait? My mind is near exploding. Seriously, what are the chances of all these rare conditions? I should buy some lottery tickets 😉
Replies to "Thanks for moving this post. I’m still trying to figure out this site. Symptoms started 3..."
@ runwthme. Wow. That is a lot to deal with! You are suffering enough that you should try to get to Mayo. Many people could not handle everything you are dealing with! Don’t minimize your self worth! I agree with Hank.
Dear runwthme, I am heavy-hearted to read about your plight. I am so very sorry you are suffereing so. I worked in healthcare for over 20 years and one of the things I've learned is that medicine isn't an exact science rather some science and some art of practice and, everything is a risk/benefit ratio. Bummer huh? I have been told over the years by almost every provider I've seen, that I have either the longest list or one of the longest lists they've seen. One even asked me if they could do a case study on me! I have mixed connective disease and so many diseased organs and glands, neuropathy, severe osteoporosis, aarthritis, and so much more! There are something like 86 autoimmune diseases and most have many of the same symptoms. Have you seen a gastroenterologist for your stomach problems? Is that what you mean when you say, "motility"? Have you seen a vascular and/or hemmatologist doc for your Erythromelalgia? I myself have 3 rare things: innumerable benign lung tumors called "minute diffuse meningotheliomatosis", Nutcracker's esophagus and now a brachial artery stenosis. I will see vascular surgeon to find the cause, most of which are serious such as peripheral artery disease. It's so scary! I will pray and ask God to give you clear direction for what specialist you should see and that you get in to just the right one/s for you asap. Often if you tell them you're in a lot of pain, that can help to get you in sooner. It's alwasy good to bring as many records and diagnostic reports that you can. I'm sure you already know that but just in case. Sometimes the most skilled docs have the worst bedside manner. I hope you get one/s that have both! Keep us posted. We all care very much. Warmest regards, Sunnyflower @colleenyoung
Hi @runwthme, I thought I'd check in with you and see if you saw the helpful replies from @jesfactsmon @sunnyflower and @hotfooted with their thoughts on seeking medical care. How are you doing today?
Good morning, @runwthme , You sound just like I did 3 years ago. Overnight, my whole life changed. The local doctors weren’t helpful at all. I was finally hospitalized because I was in bad shape. The doctors did an MRI. of my brain but couldn’t tell what they were
wlooking at. My husband said enough is enough and got an appointment with a neurologiy-inflammatory doctor and I’ve been going there ever since. To be sure, it has t been a bed of roses, but they know what they’re talking about.
So, to make a long story shorter, you want to find an experienced rheumatologist or just go to a large medical center or university medical center. Write down everything that happened, a timeline, whatever you can think of and take it with you. I wish you a lot of luck and all the best. ADVOCATE for yourself! Be sure to let me know what happens-will you? Becky
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@runwthme
I am not familiar with your ailments or conditions. However, my heart goes out to you for all you are enduring. I think you should not wait, but rather be on the hunt now for a GOOD health practitioner, a medical doctor if possible, certainly. But if you can't find anyone in the medical field who can help and understand your situation (and it sounds as if that is the case at the moment), don't automatically rule out alternative health practitioners such as naturopathic, chiropractic, chinese medicine practitioners, or whatever. Be open to what comes you way, but do put your mind toward finding the person who is right for YOU. That is the best way to eventually connect with the right help that you personally need. This forum was a great place for you to come, there are a ton of networking possibilities here.
Others will likely have some more specific ideas for you which might address your conditions. This is just my own feeling as to what you should be doing for yourself, i.e. start now (or I guess more accurately, don't stop) to seek help for yourself. Hope this helps.
Best, Hank