That’s really interesting! Yeah, such a brilliant lady took me in to hospital for a week once to do every test possible (before I got tested), really didn’t stop until she knew! , also an amazing professor down in London, he has been dealing with us for over 30 years! The man knows his stuff, he also told me EM symptoms I had but didn’t think they would be EM related, and unlike a lot of doctors out there, listend to every word! And because I travelled down to London, he sorted out some new meds to try (saly Tegretol was one, but now all meds get checked over by dermatology so I don’t get SJS again).
Some EM symptoms you might have and didn’t realise was related are, dihydration where within 5mins your mouth gets very dry ( I have this so bad but would have never linked it!) also, mouth ulcers, migraines, nerve damage is also one I have had that from start but people don’t always have it though testing can be done to see! I have nerve damage in my sensory nerves, although I feel burning sooo bad on my feet, one time I dropped my laptop on to m Y toes the blood was everywhere, and it just stung a little nothing painful, which some would see as a great thing! Lol, but I wishi didnt feel burning!! Haha
Thanks for the info. It sounds just horrible what you went through. So often it is the patient that saves themselves or figures out what is going on medically before the doctor does. I googled Tegretol & thank goodness read it thoroughly because it said not to take if allergic to Amitriptyline(Elevil) which gave me rash & itching. So I won't be trying that drug.
Lauren said:
Yes, I was hospitalised for 2week, head to toe extreme fiery blistered up rash, blisters the size of golf balls on my face, ulcers all inside my mouth, couldn't eat or drink for a week, could barley open my mouth. Tegretol is a drug tht has extreme rash as an allergic side effect and once I stopped I'd still developed extreme rash up to a whole week after as it was still in my system. I had this June this year and to this date when I get hot the light rash marks come out on neck, hands, palm of hands and belly. They said I would make full recovery with no scars, I still have marks and when I get hot I get a very irritable jogging sensation, which is like a minor effect I had of SJS. It was horrific to go through, my stupid GP saw me and said it was a viral at first and I believed him and still took Tegretol due to it, I saved my own life by knowing something serious was wrong, as the burning, un variable itching became too much, and if I hadn't went I could have been close to death!. I'm not sure if you have it for life, but I still get small symptoms when too hot, but they look un interested so I'm not sure. But Tegretol if your fine with it worked very good for bad EM cases like mine, hopefully you are more lucky if you try it! . But I was on Tegretol for a full month before I developed SJS. lisers said:
Are you saying the Stevens Johnson syndrome was caused by the Tegretol? And if so is it now a permanent syndrome you have to deal with or did it go away once you went off the Tegretol?
Lauren said:
Tegretol I got for EM it was amazing and worked!! Until I got Stevens Johnson syndrome, which is a life threaten allergic reaction, and it was too tht med, but Mabey would be different for others as it was really good
Thanks for you response. I am not sure the arthotec is working and it had icky side effects. I have tried Cymbalta but it did not work for me. The side effects were pretty bad. I appreciate your advice :0)
Joanie said:
Hi Mschell,
I have taken Arthotec before. Arthotec contains misoprostol. It is the misoprostol that has been known to help a small percentage of people. I know it also contains aspirin. It was not effective for me. Personally, I believe that if aspirin was not effective for you than the misoprostol contained in the Arthotec will not be effective. I see your on Lyrica, have you tried Lyrica in combination with Cymbalta or Effexor?
I actually got the EM dx first but future docs just ignored it as they did not know what it was. I finally say a Rhummy who basically said you have FMS and or CFS and to get a hobby. yeah he literally said that. I became disabled in 2008 and have watched ex co-workers, friends and family kinda drop off. They have a hard time understanding. My dad told me not so long ago I needed more internal fortitude. sigh. I ramble, I will not know what type of EM I have until I go to Stanford hopefully sometime early this year. From what I have read, here and online, it looks like many of the treatments for FMS and EM overlap. Name a med and I have probably tired it. Lyrica was life changing. Lyrica did not stop the pain but made it bearable enough to get off the couch after a year. I am still trying to figure out what type of pain I am having when and due to what. It sounds weird but it has been a good process as then I can try to more acurally report my pain to docs. I hope the Lyrica works wonders for you!
mshell
lisers said:
Hi Mshell,
You have Fibromyalgia also? I have it & CFS. Do you have both? If so then wouldn't the EM be a secondary pain syndrome for you? Maybe I'm thinking of someone else that said their EM was initial diagnosis.
I will probably be trying the Lyrica soon too. I have been afraid of possible side effects because I basically have tried every drug out there to treat Fibro/CFS & get weird side effects. My pharmacist pointed out to me that Lyrica doesn't have any weirder side effects than all the other drugs I've tried. :) Effexor is one I haven't tried either & I read some where that both it & Lyrica are used to treat EM. I realize Effexor is an antidepressant but sometimes those help with pain also.
So have you found any improvement with the Lyrica or is it too soon to tell? If you feel like it keep us posted on how it is working for you & at what doses.
I take 300 Lyrica @ 150 per day. i have a script so I can take an afternoon dose but have found the side effect too much (dizziness). However, I may start upping my evening dose soon. Let me know what your taking also and how it is going. :)
I have all of those symptoms too Lauren, but know they're EM stuff because of info on PubMed mostly. Wish my doctors had been aware of the connection. The Magnesium I take for EM also prevents my migraines, lucky I'm one that it works for. I'm to have a 3rd EMG next week because I can no longer feel a fan blowing on my right foot and there's a different kind of additional burning. It's been years since my last EMG which was normal. I'm to see a new geneticist in late March. Maybe she knows how I could get tested for IEM here in the states.
Lauren said:
... Some EM symptoms you might have and didn't realise was related are, dihydration where within 5mins your mouth gets very dry ( I have this so bad but would have never linked it!) also, mouth ulcers, migraines, nerve damage is also one I have had that from start but people don't always have it though testing can be done to see! I have nerve damage in my sensory nerves, although I feel burning sooo bad on my feet