What my Pain Specialist had to say about Em

Thought I would share what I consider a success story . After having worn myself out both emotionally and physically - surprise ,surprise my my flares went rather wildfire! Thankfully my kind general practitioner was able to get me an appointment with a pain doc. After so many doctors visits I was not really holding out much hope. A cure not being realistic and already taking considerable medications that until this point had been helping … thought I might just be out of luck.
Imagine my delight when the doctors first words were ," I am so sorry you have Em ,it is a painful condition and looking at your referral you have been coping very well" I was so relieved I felt teary, the relief of not being looked at questioningly and then being told that I was doing ok despite all the meds I take was amazing . Deep down , I now know I felt guilty for taking meds for pain relief ,that I should be able to get by with fewer or that I was weak for needing them or… something like that.
Talking to Dr T was nothing an epiphany in that I have been avoiding opiates because of fears of addiction . I had tried Endone before ,but not the trial I would usually give a drug - almost a quick - oops, one tablet didn’t cure me ,I’ll ditch that.
The doctor calmed me down by explaining opiates prescribed to patients with stable lives , who are emotionally mature etc ,etc are extremely unlikely to become addicted. Also slow release opiates further reduce this risk .
I trotted off much reassured with 10mg Targen( endone but with less effect on bowel) and 5mg quick release for breakthrough pain.
I have to report I felt a bit floaty for a day or two,then much reduced flares in both intensity and frequency . It seems I am lucky that my pain is opiate responsive.
Dr T also spoke about dose ranges , rotating opioids and if these did not work the possibility of nerve blocks and Mexil / lidocaine.
So I take 10mg Targen x 2
75 mg Lyrica
150mg Effexor morning
75mg Effexor night
Prefer not to of course ,but I’m out and about in the world again , and I guess for me that’s the price of a ticket!

There is so much censure around pain killing meds like opiates. I have struggled with it for 7 years. Not only lay people, but some pharmacists and doctors have given me some attitude. And, like yours, my dosage is low. Heavens knows what sort of attitude people on higher dosages face?

I take opiates for migraine control and for the past 3 years I have been experiencing more frequent and more painful migraine breakthrough pain but I still haven't discussed increasing dosage with my pain specialist. It has to do with the social judgements I experience, read about etc.. but I also worry about dependence - needing these meds, being tied to regular doctors appointments for scripts, being able to get to the pharmacy to fill the scripts, hoping the meds are in stock etc.. The one problem I don't have is addiction. The pain specialist and I talked a lot about addiction vs dependence. And what really helps me is his opinion that " the right to pain relief is a human rights issue."

there is a more effective medication for my migraine - ergotamine. It constricts blood vessels. And i do think it may have helped with EM as well, but not sure. I'd love to be able to take it again. . But it is a 'dirty med' apparently, that can have

very long term serious consequences on the heart. I was taken off it by my specialists and have been told not to take it. That it was not a good medication for me to take. It was non addictive and has no social judgements attached, but it is dangerous for me.

I am so glad you are getting such a good response from your meds, tizzy. Thanks for sharing. I have a new ssri to try but have been trying to get up the nerve to take it for a month now. I am frightened it will cause more migraine pain but I know I have to try it eventually., because, of course, it could help.

I want to try it, but I do hate trialling new meds.