erythromelallgia

[ajftk]

I  suffer from Erythromeelalgia Fibromyalgia nas Psioritic ArthritisBut its the EM that has ruined my life the most
I currently take Lyrica Cymbalta Methadone Tramadol      Zimovane
Does anyone have any input or auggestions as none of the meds make a blind bit orf notice and i live my lifei in pain .Aall over, Every minute of everyday

[Jorbu]

(Response to "ajftk" continued)

     I'm sorry, but my eyes are bothering me, so I'm going to have to wait to finish this up.  I hope to be back tomorrow or ASAP.

(continued ASAP in next post)

[Jorbu]

(Response to "ajftk" continued)

    You didn't say if your Erythromelalgia (EM) was primary, secondary, where it causes you pain, what former Rx's you've tried, or your age.  If it is any difference to you, my EM is secondary to my MS and a less common variant where burning and hypersensitive skin (to clothing, touch, etc.) is usually from the shoulders up, with my face and ears being the worst and hands/forearms and feet less severe/constant.  I have other health problems (like you probably do).

     My cancer was diagnosed two years ago.  So, at age 43 I ended up with a double mastectomy.  I assume if I'd not skipped three years of mammograms, I'd have been even younger when diagnosed.  To show how aggressive I am in finding gold standard treatments, I used oncology here, but made three trips (6 weeks total away) out-of-state for my mastectomies/reconstruction.  You sound similar in your efforts to find help for your EM (or you wouldn't be here).

     My MS course is atypical and difficult.  I had burning as a symptom (not uncommon with MS) from the start, but as it progressed, I noted that it was way out of the bounds of MS burning.  My neurologist discounted the severity of my burning and alloydinia even when I started feeling suicidal.  MS and EM can both have thermal (temperature) and mechanical (touch) alloydinia (pain from things that normally aren't painful).  Years of using 3600mg. of gabapentin (aka Neurontin) and being unable to use other anticonvulsants I tried due to serious side-effects, pushed me towards a pain management doctor and opiods, even though they were only mildly helpful to neuropathic pain.  

     I'd become intolerant of normal ambient indoor temperatures and isolated myself in a room (where I also sleep 95% of the time) we call the "walk in refrigerator" that has an additional ductless air conditioner.  Since cooling is a main defense and offense to EM, the room is so cold that I have to keep covered up with blankets where my sensation is normal.  Time in the rest of the house with family = pain.  My husband and I hold pinkie fingers instead of hands and I usually don't go out, except to doctor appointments.            

     The highly competent pain doctor I found in 2004 formerly practiced as a psysiatrist (disease/accident/disability rehabilitation), who actually listened, and wasn't afraid to try things.  To me, treating neuropathic pain is an exercise in experimentation.  I self-diagnosed my EM last year after finding The Erythromelalgia Association (TEA) online and reading/seeing pictures of EM there.  I took the information to my neurologist, pain doctor, and dermatologist to verify it.  Every single one of them knew about EM, but I think missed it because my feet weren't involved very much and I had another disease with similar symptoms.  A study a few years ago by the Mayo Clinic (who has done the most on EM) showed that EM is under-diagnosed.  I believe it.  The neurologist I'd switched to (fairly new back then) thought the EM symptoms fit, but doubted I had it because it was rare!  Ug.  He did prescribe oral Magnesium the next day which ended up not working for me.  In the end, if your doctor thinks you have EM and/or another cause of neuropathic/central pain, there are few differences in Rx's to try.  I'll discuss specific medications next.

(continued in next post)

[Jorbu]

Hi "ajftk",

     I will divide up my response to you in a few posts.  I'm new here so I haven't read what other threads on the site (after searching) say about Erythromelalgia (EM) yet, so please forgive me if this is repetitive or not what you're looking for.  All I can provide you with is:

*  My own experience suffering physically/mentally from EM, including former and most recent experiences with Rx's that make ANY sort of difference.  

*  Shared experience of having EM be the MOST hellish of our other significant health problems, (making the assumption the two problems you list have had a pretty severe course.)

So, you have EM and:
     1)  Fibromyalgia
     2)  Psoriatic Arthritis

I deal with EM and:
     1)  Multiple Sclerosis
     2)  Breast Cancer (age 43, double mastectomy)

(continued in next post)