General pain during & between EM flares - The Erythromelalg...

The Erythromelalgia Association

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General pain during & between EM flares

8 years ago•2 Replies

Hi all

I'm new to this community, having been diagnosed on 26/05/17 by Dr Ong, from Royal Free. I need to ask if anyone has lots of pain in legs & arms, not only during, but between flares.

My EM affects feet & legs, hands & wrist, & I'm starting to feel heat & stinging on ears, face & scalp....

My hands & feet flare multiple times daily & I can only sleep with Zopiclone, which my lovely GP has prescribed.

In between actual flares, I get deep, hot aches in my legs esp- like lactic acid pain, plus jolting in foot, knee joints

I have been seeing lots of consultants over the past year - Rheumy, Orthopaedics,Neuro. I have spinal degeneration in C spine & lumbar, severe Raynaud's & because of all my limb pain my neuro thinks fibromyalgia too!

I'm on so many meds I rattle, and the only pain relief that really helps is the Zopiclone, cos it knocks me out at night! I always wake up with either a flare, or a "post flare" sore tightness in hands & feet.

Here's a list of my meds: LEVOTHYROXINE 75mg, HRT (cos GP thought my pain might be menopausal...(that was before EM really kicked in - didn't help pain but stopped hot flashes)LANSOPRAZOLE for reflux, AMITRIPTYLINE 75 mg, MORPHINE slow release 15 mg x 2, PREGABALIN 60mg x 2,ZOPICLONE 7.5 & now, Dr Ong has suggested adding FLUOXETINE to the mix!!!

I feel like I'm swallowing all these powerful drugs & still in so much pain unless I'm unconscious with the Zopiclone.......not even safe to drive at least til early afternoon, can't work (for nearly a year)

Anyone else feeling like a pharmaceutical experiment that's failed??? Xxx

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nickybee

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jlo2117 years ago

Hi Nickybee, I see that your post has had no replies - that's not helped I bet? I have recently been sort of diagnosed with EM and also have Hashimotos and Sjogrens and a few other co-morbidities. Did you accept the fluoxetine? I was very low before my Hashi's diagnosis and I quickly learnt that whilst I do not have clinical depression in the typical sense of the word, I did need anti depressants to give me that boost and help me get through each day. I didn't get on with fluoxetine so after trying almost all of them I have settled on Mirtazapine which I take at night - it works well for me. I don't know what the reasoning is behind Dr Ong's particular prescription but you may find it helps. Wishing you all the best.

nickybee7 years ago

Hi jlo211 Thanks for your reply! 😊 I also had Hashi's & had total thyroidectomy 4 years ago. The fluoxetine was added to try & help with the nerve pain...not so far, but I asked my GP to put it on repeat script cos I am getting quite low at times & I think it has helped my mood from sinking into the depths! Pregabalin was awful, and didn't reduce the pain, so it had to go! The erythromelalgia has progressed so much, that any use of my hands causes severe heat, swelling & pain 😢 and I think a lot of my general pain is linked to the E.M, plus my spinal disease......Sending best wishes to you, and thank you again! X

General pain during & between EM flares - The Erythromelalg...

The Erythromelalgia Association

General pain during & between EM flares

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