Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@kenc

The sad truth in all this, there appears to be numerous treatments but few if any work; at least for me.

Jump to this post

I felt the same way. My Drs all said take Tylenol or ibuprofen. I have poly myalgia. Prednisone helps, but really bad side effects. I called bc/bs and asked for a pain management clinic. I have very little. Pain, and getting ready to reduce prednisone.

REPLY

Also, I too had severe foot, leg, arm, hand etc cramps. Keeping warm helps. Solonapas patches work!! I wear sweats, footies, fuzzy jacket and gloves to bed. I also have a osolator board that helps with circulation and muscle conditioning. I was reminded last night when I didn’t and woke up with cramps.

REPLY

I have been relatively unsuccessful with Pain Mgt Clinic. The surgeon recommended that I see a Pelvic Floor Doctor, who is trying various thereauputics in attempt to relieve my pain.

REPLY

Hello. I am wondering why there is not a specific Fibromyalgia Support group or a Ehlers Danlos Support group? These conditions are very specific and not like all others in terms of chronic pain.

REPLY
@143salmon

I’m happy to share but I’ll be honest I’ve noticed that we are all so complex and what works for me not might not work for you and vice versa. I started taking it about a month and a half ago and I’ve had some weird reactions. One being I hated the taste because they had it in a lozenge type situation so I’ve gone to swallowing it. In the beginning I was feeling a little twitchy from it or maybe I would say tweaki. I lowered my dose a little but you do start very very low for a long time before you start moving up. Yesterday my legs were hurting so bad they feel like they were on fire. I took 2 mg and I was talking to my boyfriend and I realize my legs weren’t on fire anymore. I said oh my gosh I don’t know if it’s the naltrexone but for the first time in like days my legs are hurting like I want to chop them off. They still act but it was just a different kind of ache. Now it does take a long time to build up a tolerance and to use it but every time I take a drug and it could be some placebo but I can feel things. So even when I was taking SSRIs years ago they said it took weeks but I felt some weird stuff two days in not that it cured me from OCD but I could just feel something in my body changing. I’m very sensitive to things hence chronic fatigue syndrome and fibromyalgia. My body is just very very hyper sensitive unfortunately. I would say try it and because it doesn’t have a lot of adverse reactions like other drugs you can always stop. I’m gonna go back to trying it for a couple of weeks straight to see if I can get the pain to go down. But a sidenote and I don’t have the research to share a doctor that I go to his neurologist so essentially my neurologist was telling me about his colleague who was so adamant that naltrexone was just a scam, that guy ended up doing a big research and double blind study on it and realized it actually works and so the skeptical doctor was even convinced that it does help with pain. It just hasn’t been the great aha moment for me but it has done a little bit of something.

I think it will help you get off of opiates though because it does something in the brain to block opiate pleasure receptors or something like that but it doesn’t necessarily make you feel like you don’t have any pleasure.

Jump to this post

What are you taking? You don't say.

REPLY
@granolagodddess

Hello. I am wondering why there is not a specific Fibromyalgia Support group or a Ehlers Danlos Support group? These conditions are very specific and not like all others in terms of chronic pain.

Jump to this post

Hi @granolagodddess, There are quite a few discussions on Fibromyalgia and Ehlers Danlos on Connect. Here are a few:
-- Have you found anything to successfully treat fibromyalgia pain?:
https://connect.mayoclinic.org/discussion/dealing-with-fibromyalgia-pain/
-- Fibromyalgia: Anyone out there with the same diagnosis?:
https://connect.mayoclinic.org/discussion/fibromyalgia-20d1d0/
-- Ehlers Danlos Syndrome (EDS) & HSD, calling all types!:
https://connect.mayoclinic.org/discussion/edshsd-calling-all-types/
-- Ehlers Danlos Syndrome: Can't get diagnosed:
https://connect.mayoclinic.org/discussion/ehlers-danlos-syndrome-1/

REPLY
@granolagodddess

What are you taking? You don't say.

Jump to this post

Someone asked me about my experience with a specific medication but maybe they removed their questions

REPLY

Good luck! What is regional pain syndrome?

REPLY

Hello all - giving every one a shout out today with encouragement and support as you continue your journey. Today is a good day!

REPLY

Hi I am Pam and live in Brisbane, Australia. I have suffered with fibromyalgia for a very long time. Have tried so many things from Acapuncture, Chiro, Physio, Osteo, the list goes on. I have a book on hold at the library, 'Why Does It Still Hurt?' and from hearing about it, it seems like the approach should work because it looks at the brain being overprotective and that we need to retrain the brain and alter the neurological pathways, rather than trying to work on from a physical angle. I am still looking for the right exercise physiologist who will use this approach. If any of you know a Brisbane practitioner who might suit, please let me know. Kind regards Pam

REPLY
Please sign in or register to post a reply.