I'm a new member here from England and I was wondering if there are any members with ME/CFS, POTS, EDS and Erythromelalgia?
I became ill with ME after the Epstein Barr Virus gave me Glandular Fever. I had classic ME symptoms until 7 years ago when the nerve pain kicked in and spread from my toes to my head over a short period of time. I developed Postural Orthostatic Tachycardia Syndrome/Dysautonomia at the same time. It's been a real battle to get any diagnosis apart from neuropathic pain and ME. Apparently there is a link between POTS and Ehler's Danlos Syndrome and unbeknown to me I was born with this connective tissue disorder. If you have EDS that predisposes you to getting ME/CFS and I certainly did!
The doctors in London for private dx and treatment link Erythromelalgia to EDS, ME and POTS and I finally have all the pieces of the puzzle.
What are the treatments available? I'm hoping that Midodrine or Florinef will be prescribed at some stage for the POTS. I currently take Gabapentin and Nortriptyline for the burning nerve pain, but I don't think they work any more. I cannot take codeine or morphine. I take a beta blocker to help with the tachycardia and BP issues.
I am sorry to hear you are going through so much. It is hard enough just having EM. I don't have your other conditions myself so I can't be of much help but I know there are others here that have at least one of your other conditions at a time and collectively all of them if that makes any sense. I hope you get some help from those that do. I know POTS is a common one with a lot of EM patients.
As moderators we are trying to post a spotlight on related conditions once every couple of months with our current one on Raynaud's . Keep your eye out for the ones in the future as I am sure some of your related conditions will be featured with helpful research and getting others talking about the spotlighted condition.
Thanks very much for your response in this matter. I think when you have so many conditions that are linked it can get complicated. I shall keep on popping back to this site as you have so much informations about Erythromelalgia which is sadly lacking on other websites.
I have autonomic neuropathy with POTS and EM and find that time release Mestinon helps with both, though it’s certainly no cure. It does help me function at a higher level, in part because it helps me sweat.
It might be brain fog but I didn't realize you were a new member. I have a feeling I definitely have talked to you before but my brain fog is so bad and I've had a lot of family worries and migraine going on lately that it is a wonder I can even remember anything correctly.
I have POTS, EM. And chronic daily migraine that are medicated with low dose of opiates around the clock and extra for breakthrough migraine pain. The opiates don't seem to help with EM but I can't be sure of this as I've been taking them for quite some time. If they ever did help it would seem like the are not anymore because EM pain has increased over past 3 years. I did have to take a pill for breakthrough migraine pain yesterday and last night was pretty rough with EM stuff so I'm wondering if maybe they might make EM worse for me. I have wondered this for some time. My best treatments for EM are cooling with showers and fans. I also have lots of allergies now. And have many food intolerances. Everything I have seems to tie in with the experiences of some other people I have met over the Internet except that I have slow transit motility and severe constipation and although constipation is common with pots it's not all that common with allergies, intolerances and flushing. The constipation is very hard for me to treat and as so many meds for pots and Em can cause constipation I'm limited in my treatment options. I haven't found anyone yet whose experiences are the same as mine.
I saw my POTS/EM specialist only last Friday and he told me that there was nothing much he could give me to try. But we didn't get to talk about it in depth because we got sidetracked with the discovery of what sounds to him to be mitral valve prolapse and he also found I have an enlarged thyroid. So I have to have ultrasound and an echocardiogram. Perhaps once those tests are done we can talk further about any meds that I might need to take. MVP is not uncommon with POTS.
I DON'T have EDS but I do know it is quite common in people with POTS. I don't know if you have visited the DINET.ORG site yet (maybe we have interacted there?) but it has great resources and forums with people who I know have most of what you have although EM is not common on there yet (I suspect more people will be diagnosed with it though and they will surface).
Keep posting and have a look at dinet also. Sorry about not knowing if we have talked before or not. I'm a bit embarrassed about my memory. I've been worrying so much lately about a close loved one that I can't keep my head together terribly well at the moment.
Hi there. I know you're looking for answers, so I apologize for hitting you up with a question :) Did the gabapentin produce any results? For how long?
And it all came back to me, and of course we have corresponded on dinet. Sorry for vagueness caused be tired brain, trish.
Blue
TCP36 said:
Thanks very much for your response in this matter. I think when you have so many conditions that are linked it can get complicated. I shall keep on popping back to this site as you have so much informations about Erythromelalgia which is sadly lacking on other websites.