Has anyone tried “street drugs” in addition to their prescribed meds? If so was there any that helped? I’m at the point where I can’t do this the way I have been doing it for much longer. I have the most apathetic Dr. who doesn’t care to help me and my pain is so under treated it’s pathetic. It would be nice to be able to have the energy to do the basic things like brush my teeth or have the strength to change clothes. Someone mentioned trying the street drugs. Has anyone dabbled in them?
Medical marijuana is legal where I am. My derm was trying to rx dronabinol (synthetic THC) for me but it wasn’t covered under my insurance, so he suggested if I wanted to try, to get 10 mg THC (he said it was THC that mattered and to not pay attn to CBD). He said he rx’es dronabinol to patients with neuropathic itch as a way of stabilizing the sensory nerves and some patients get dramatic improvement (I think same nerve fibers are involved in EM).
I tried it for ~3 wks, and it really does help with heat tolerance / neuropathy. However, it seemed to make my afternoon “internal / clock” flares worse. Almost like it flattened the small triggers (so they weren’t triggers anymore, like car heater … yes I did a double-take that I could tolerate the car heater!), but exacerbated the bigger triggers? But success w/ it is probably individual, like everything else. THC is very dilating so I also had to work up slowly. I got an edible form and could not go higher than 5 mg. If you take at night around that dose, then any euphoria will be gone in the morning, but leave you with fatigue / brain fog the next day.
I have an upcoming ketamine infusion (ordered by pain doc) for a couple days, I’m not sure if one considers that a street drug anymore. It will likely take a while to schedule, though. Have you tried that?
Is your doctor at least willing to rx partial opioid agonists, like tramadol / buprenorphine?
Random thought - Have you tried vagal nerve stimulator? It looks like that can work very well for CRPS and other pain conditions (I remember you also had CRPS?), when it works.
I am so sorry you are not getting along with your doctor, and that you are in so much pain. hope you are managing ok tonight.
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I appreciate your candour. Yes on the CRPS. My old Dr prescribed me Ketamine orally to knock me out through the night pain so I could sleep. The pain is unspeakable at night so I would keep myself awake with Red Bulls til I dropped usually 5-6 days before sleep. It didn’t help with that but it helped with my depression so well and fast. People noticed within days! We were going to try the Ketamine infusion at his office when he got very sick…that was 2 years ago he never came. So I have a new dr who was good up until I tried to commit suicide last summer in large part due to the pain and to everything I have lost because of the diseases. She cut my pain meds back by 75% and would not refill any of the other medications. I have enough now to make it through 3 days of the week 4 if I’m lucky. I don’t want to talk about the rest of the week…I think though I will try some marjana it can’t hurt. Thanks again
I was just re-reading what you wrote. I don’t know if we are allowed to ask but pot is legs where you are? Are you in BC? That’s where I am, it’s legal here…
Hi Sandy
I am in California and marijuana is legal here (medical + recreational … forgot that we made recreational legal last yr).
I am so sorry things are so hard for you up there in BC right now and I wish I could help more. One thought I have, is that maybe your current pain doc isn’t working for you and if it’s possible to find someone else who you feel more confident in navigating your treatment. Hoping you find some moments of peace in your day today + know that someone in CA is thinking of you <3
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I was diagnosed 8 years ago with EM, no known cause. I recently found an industrial hemp CBD salve that has really helped reduce my swelling and soothes the pain.
https://www.cannainfuzionscolorado.com/
I use the 1000 mg Soothing Salve. I have also used the tinctures with some help in sleeping.
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