thank you. started Cymbalta today.
Dear Larry,
I think pretty much all of in this spot have been through the very same thing. So don’t feel alone. After two years and six doctors I finally googled my symptoms, and there was EM, as plain as the nose on my face. I went to the Em organization web site to find a specialist in this area to get my for my formal diagnosis. There are 7000 orphan diseases and this is just one of them. So we are the ones to have to find a specialist because they’re just not out there to pick and choose from.
You a in a fine, compassionate, and caring group of friends here.
Patricia
standing_cat,
I am also in Cymbalta been on this for the last 2 years along with the gabapentin your right its crazy to me also that being on these meds didn’t stop the sudden onset of EM nor did it control the pain and burning. Maybe I have been on gabapentin for so long it just doesn’t work any more and they need to see if I would benefit more from switching to something else instead. this one derm I saw who was pretty much useless made a comment to me right off the bat that its the meds I’m on causing whatever problem I have WOW ok well you barley looked at me and only talked with me maybe 5 min ugh this is why going to doctors is so frustrating and why people give up going because they become discouraged.
For me lyrica is superior than gabapentin, in terms of pain improvement and side effect profile. My doctor said he prefers lyrica to gabapentin generally, but some insurances make you try and fail gabapentin first. I thought gabapentin / lyrica were basically the same drug but I’m glad he had me try lyrica.
Yes I had 2 derms say simlar comments. That because of the sudden onset for me, they usually trace it back to a change in meds or whatever. I say I was on same meds for years except for birth control. One derm said she thought I had too much serotonin (because of the cymbalta) and that she left me a voicemail saying she thought that was causing my problems. So I tapered off of it, waited a month and no positive or negative change. In hindsight, I think it was very irresponsible/reckless of her to make such a suggestion without at least talking to my psychiatrist. I still have the voicemail lol. But I was desperate for relief.
Best of luck to you.
I was just diagnosed with EM at Mayo Clinic last month. My symptoms started 5 months after having C5-6 Cervical Disc Replacement and within days of having second set of steroid trigger point injections in shoulders and upper back. I am convinced it is the steroid (triamcinolone) injection due to the abrupt onset and rapid progression. My neurosurgeon has referred me for patch testing to rule out delayed hypersensitivity reaction to the metal in my cervical disc. Although she did admit that was unlikely. I am scheduled mid March. I saw two neurologists and the EM clinic at Mayo and was diagnosed with EM, not CRPS. All my tests were normal. No evidence of underlying small fiber neuropathy. The most bizarre experience of my life. Sending prayers to everyone going through this!
That’s interesting. My EM also began subsequent to a corticosteroid injection into my knee. My EM symptoms primarily occur on the anterior side of my knees, which is where the injection was done. It does seem likely my EM is somehow related to the athletic injury I sustained in my knee immediately prior. It’s possible the cortisone injection played a role.
Hi Mlew,
I have the exact same thing (Raynaud’s + EM) & my theory is that they are both related to the same underlying mystery condition. Very curious to hear your neurologist’s theory. Hang in there & keep us posted:)
I was reading through the “To cold To hot” discussion and have so much sympathy with everyone that is struggling with drs and diagnosis. I was so lucky to have a dr that is not afraid to say she have no knowledge but did research and agree with my diagnosis of EM. /that was after all the test failed to diagnose anything. Meds for Raynauds helped for the first day and from there on only makes it much worse! I suffered from cold hands and feet for years as well as difficulty sweating. I also have a mild form of restless leg syndrome which the neurologist diagnosed as the problem for the flaring. The meds I got for that drove me crazy, very bad. I found Lyrica worked for me, I could feel the difference 2 hours after taking my first dose. A few years back I battled with Bracial Plexus of right arm, totally nerve related, had the most excruciating pain and lost the use of my hand. Lyrica, high dose of vit B complex and lots of physio and exercise later it is back to normal. Lost the hearing in right ear due to nerve related illness that could not be identified. Was on carbamazepine for may years and eventually stopped it and the pain did not return. When reading through all the posts you can see a so much similarities. Why do the drs not start a data bank to add all the EM patients and compare their current symptoms as well as previous ones. Surely one day they will be able to do something about it!
missnicolelynn,
I have had c5,6 and 7 fused from an injury lifting a patient at work. This was about 4 years ago now and i still have pain and see the pain doc. My symptoms seemed to also be abrupt and in hands and feet starting 2 years ago however like you i have spinal steroid injections and have been getting them for years so i to wondered if all of this could be related to my EM. I also have Raynaud’s so i constantly go back and forth trying to control my body temp. I was just diagnosis finally with EM about a month ago by my new dermatologist. I cant go to mayo because i work for a different hospital so my derm said she would consult with her friends at Mayo to hopefully see what treatment would be best. She put me on aspirin and Zyrtec to take once a day but i haven’t noticed any change in my EM. I hope your hanging in there, it’s nice to at least beable to vent on here to people who get what your going threw.
stay cool
E