Advice for Someone New to Pain Management

After almost a year of no relief and back and forth between multiple providers, I finally emailed my primary care doctor the name of two doctors on the TEA website, and she referred me to both.

One is a physiatrist at a pain management clinic. After receiving their new patient paperwork, I’m a little nervous. While I understand the need to be vigilant about pain pill abuse, the forms made me feel like I was preparing for medical tx at a police station :confused:

All jokes aside, can anyone with experience give me advice on what to expect? My hematologist (who diagnosed me) was happy for me and hoped they would try some compounding creams. Any other thoughts on how they’ll proceed with EM? No idea if this guy has seen one or many people with EM.

I Bnashville,
I apologize because I am not great at typing on my IPAD a so please excuse the typos! I didn’t want to take a lot of pills either to treat the EM. I will tell you that i have had success with the compound cream developed my the Mayo Clinic: the one which is 1% amitriptyline/.5%ketamine. I use it just before I put on my socks and shoes to go to work. It feels cool itself and it helps buffer the pain while I travel to work. I have also used it when I was having a flare. I don’t know if it is the amitrityline or the ketamine which is most helpful. Ketamine I think you know is an anesthetic and so I think it may be the numbing effect. But whatever it is-'maybe the combo it works to some extent.
Also I have used tramadol for " break through pain. Whe I have a bad day on the weekend I will take half a tramadol. I took a whole one once and it made me sick. But that was a while,ago but I a, still a little wary of a while one. The half one turns the burning to more pins and needles which gives me a break. I didn’t find gabapentin very helpful but I take 200 mgs at bedtime and it knocks me out so I can sleep. Mi hope this is helpful. I was given many other medication options. Ut I did t want to try them…yet!

Thanks for the suggestions! I take gabapentin too…think it helps a little with redness but starting to think it makes me more swollen. I’m on a super low dose (100 mg in am & 300 mg at night) but think I may be super sensitive to it.

I’m hopeful about the pain specialist but also reluctant to go to pain management…it seems really intense…& expensive. BUT I’ve got to figure something out…I’ve been flaring like crazy and would like to find something that helps :slight_smile:

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I have only had EM for under two years and was just recently diagnosed. But before I was diagnosed my doctor knew it was nerve pain so she put me on gabapentin and it would help but then get worse again. I am taking 1500 mg a day now but she added cymbalta and I noticed a big difference, I used to be on fire all day, I am still uncomfortable but I am not in constant pain now. My dermatologist prescribed lidocaine patches but they wouldn’t stick so she ordered a ketamine and amitriptyline cream from a pharmacy and they are trying to get my insurance to pay. I have heard this helps the most so I am looking forward to trying it. I am on methadone also but not for em, I have been on if for 7 years and I don’t know if it helps with my pain at all or contributes to my heat intolerance. If the cream works I want to lower my dose of gabapentin.