HI I’m Erika,
I live in Arizona, my hands have always seemed colder that most people but about year ago I went to my PCP because not only were they freezing at times they were burning at times as well along with my feet. she said right away I probably had Raynaud’s which my mother also has. She sent me to a Rheumatologist who was not helpful he said whatever it was that was happening with me was not going to kill me so basically he didn’t know and sent me on my way. I then saw a dermatologist who said once I finally got in that well she had no clue and looked at me like I was crazy because I wasn’t in a flare right then even though I have so many photos. Last dr was vascular he ran lots of test finally said Raynaud’s and out the door again I go he said see me in a year. I’m so frustrated I dnt like feeling like people think I’m crazy, and I dnt like that until now there was no one like me that I new that I could talk to about this. My symptoms came on very fast over 100 flares a day back and forth all day long and nighttime is the worst my hands just burn so bad and swell I cant make a fist I often sleep holding and ice pack. My feet are also bad I work 12hr shifts and I have to go sit and take my socks and shoes off to try to get relief turning the day because they just burn so bad in shoes. I thought ok Raynaud’s my mom has it figures I would to but this is more than that and she doesn’t have the same symptoms I struggle with her pain is worse with cold mine becomes much worse on the warming part. Also seems to be spreading to other parts of my body face ears knees thighs at time and parts of my upper arm. Its a constant battle between being to cold and being to hot and there doesn’t seem to be any doctors that know even when I have mentioned it from searching on the web. I’m glad to be here I hope to get some helpful info from other people like me and maybe finally find someone out here in AZ that will help me finally get a diagnosis
I am so sorry that your doctors are not treating you with curiosity and respect. There is a Mayo Clinic in Arizona, and although the Mayo in Minn. is the focus place for EM, I am sure the Arizona clinic could coordinate for you.
You could then apply for disability, as you are disabled by this condition. I had to leave work when I began to flare severely, and have only sympathy for you. Be sure not to hold ice to your skin for too long or it will damage the skin. Try to look in this sites sections on meds and treatments.
Hold on. We are all out here with you!!
Thank you so much it means so much to know there are others out there going through this to. I did read about the mayo clinic and wanted to go there, however I work for Banner and my insurance wont cover there. I just have been feeling pretty alone in this and turned away at every door. After time you start to feel like your crazy or something I just turned 39 and have four kids and I try to just do the best I can I dnt want this to beat me, but some days are a struggle for sure.
I completely understand! I go through the same exact things, only my main issue is my face and ears. It’s taken me over 2 years to figure out what it was and get a diagnosis, go to Dr Mackey at Desert Dermatology.
I think you need to see a neurologist instead of dermatology. I am new to this, but I understand it like this. The nerves misfire affecting the dialation and constriction of your blood vessels.
I live in San Diego and have a good Dr. Here if you can make the drive. Check your diet first. Any vasildialtor there. Fish, garlic, beets, supplements? B vitamins, niacin, turmeric, fish oil ? All these will make my flares more often and much worse.
Good luck and God bless. Living with this is very difficult. Let me know if you want Dr info
Ok thank you so he im guessing is pretty familiar with EM patients. I would just like to know that a doctor see’s what im saying and it’s not just in my mind.
It is so frustrating to hear your experience with EM and the surrounding doctors. I can’t imagine all the frustration, confusion, and questions you must be pondering. Many people have went through this just to get a diagnosis. A passion of mine is to make the awareness of Rare Diseases less rare because of stories like this. They are all to common.
I do want to share just a few resources:
The Erythromelalgia Association has a list of doctors who other EM patients have recommended. You might be able to find one in your area using this link: http://www.erythromelalgia.org/Support/DoctorDirectory.aspx
It would be nice to get a perspective from someone who is familiar with the disorder.
Here is a patient guide about EM. What to do, trial medication, research etc. I carry mine with me ALL the time to provide education to people. Here is the downloadable copy: http://www.erythromelalgia.org/Portals/0/TEA-PatientGuideBook_fin28pgWEB.pdf?ver=2016-04-17-104037-597
Lastly, I encourage you to continue to use this forum. All though I was in significant pain when I joined this forum, one of the hardest things was feeling alone. I found so much comfort and support here. Sometimes I share my bad days, but I always remember to share my good days. I have been on 150mg of Venlafaxine for over a year now and it has allowed me to continue working. I have flares, but very rarely. There is HOPE.
Praying for you!
I have Raynaud’s and EM among other health issues. Turns out it is all from Lyme disease. I’m now getting antibiotic treatment from a Lyme literate NP and getting better. You might want to consider Lyme as a possible reason for your symptoms.
Unfortunately Lyme is a very political issue and at the present time traditional medicine doesn’t believe in chronic Lyme. As a result, most Lyme literate doctors are private and not covered by insurance.
Wow that’s crazy Lyme disease. I had a dog when I was younger that had that got it from ticks. Is this how you got the lyme disease? I’m sorry to hear your struggling as well but glad you found an answer at least and that medication is helping you.
Little_k thank you so much for your concern and your info. I think its great that you try to help others who are suffering and spread knowledge and resources with them. I will look at these site for sure. I have a neurologist that I already see and next week when I go I will talk to him about all of my issues not sure if he has heard of EM but I hope so if not I will be looking for other dr in my area that have at least heard of this. Its crazy how the only reason I even thought I had EM is because when I typed on the internet my symptoms it popped right up but when I ask people they have no idea. This is a miserable disease and people need to be heard and helped it’s just not coming so finding the right resource is harder than it seems. I appreciate your thoughts and prayers and your right it’s a great relief to talk with others who can relate because it becomes very lonely and depressing feeling like your alone.
I’m curious if you had any other symptoms with lyme disease? (like a bulls eye rash) I’m glad you’ve gotten some answers for yourself.
No bull’s eye rash. I recall having a small (dime sized) rash on my ankle around a decade ago but since it wasn’t a bull’s eye never saw a doctor.
New and bizarre symptoms kept popping up over time. Raynaud’s in 2008. GI problems in 2010. Foot pain in 2013, attributed to a neuroma (swollen nerve). Had surgery to remove the neuroma in 2014, after that things got really bad. That’s when EM showed up (didn’t know what it was then but feet were so sensitive I couldn’t wear socks for an entire year). I knew then something was very wrong with me. Was having panic attacks, losing lots of hair, shooting pains in my legs. Finally 4 months later someone thought to check my B12 and it was very low, and I was diagnosed with pernicious anemia. In 2015 my EM was diagnosed and also autonomic nervous system problems. In 2016 I was diagnosed with pure autonomic failure, where in the mornings my BP would drop so low on standing up I would nearly pass out. My feet were incredibly sore and painful so I was in a wheelchair.