Connect
Feeling at my wits end with Chronic Pain and Fibromyalgia
Usually I am not one to share much of my personal story but here goes...I have what is called moderate to severe degenerative disc disease, arthritis of the spine C3-C7 and lumbar spine, and Fibromyalgia. In the 20 years Ive had pain, I"ve been though many treatments including PT, tens unit, bio feedback,injections, nerve ablations, you name it. I'm prescribed Cymbalta 60 mg for Fibro and anxiety as well as 225 mg of Lyrica. I have been on and off various painkillers too. I'm currently on a long acting oxycodone of 13.5 mg and once a day one 15 mg of IR oxycodone. This has been my regime for a few months now as I switched from 15 mg IR oxycodone. Now for those who are worried about me ODing...I understand. I actually hype-vigilant about my meds. (And I have my hubby and son who watch) Years ago I was on 15 mg Fentanyl patch for 10 months and came off it in one month with no side effects.
Right now I'm really struggling with this rotten pain. I have no appetite, either can't sleep or nap during the day.
Like
Helpful
HugInterested in more discussions like this? Go to the Fibromyalgia Support Group.
Connect
@fmcfs I was definitely not disagreeing with you. Please reread my post, where I said "... So really, fibro is a condition that can "wax and wane" depending on other things going on, medication, stress, even weather...", it was about the same as "...It would probably not be as painful, but it would be underlying..."
-
Like -
Helpful -
Hug
3 Reactions@fmcfs I feel so damaged. I’m so upset . You made something very clear that I couldn’t manage to figure out or research on my own. If you look at my phone under notes, and texts created for different subjects so I could remember everything. I still get scared from cognitive things I should know and struggle to remember or have to learn how to do again. Throughout this fibromyalgia journey I had 2 different insurances. I had many many doctors. Of course neither of those were specifically or close to being trained on fibromyalgia meds. NOT ONE DOCTOR EVER cared to know how long I was on these meds and just kept prescribing them. Never suggesting I could or should get off. And I was only taken off Cymbalta because I REQUESTED IT and was given instructions for getting off in 2 weeks. Thank you for your enlightenment it means a lot. It’s not just brain fog, it’s these drugs too being administered without a care for the patients brain. Will I ever regain what I’ve lost? I feel like my IQ was cut in half.
-
Like -
Helpful -
Hug
3 Reactions@jeannesf1 I’m so sorry it happened! You are not alone. Fibromyalgia is such an individual syndrome, and each medication affects people differently. There is still a good chance to recover if you take care of yourself. Counseling, good exercise program like Tai Chi, and or yoga, eating well (no gluten, sugar, minimal carbs like bread, pasta, potatoes) and vitamins like D and B Complex. It’s important to find a good sleep med and avoid stress as much as possible. I moved to the beach because of Fibromyalgia. TIME will tell. But the things I mentioned will give you a fighting chance. Sending love.
-
Like -
Helpful -
Hug
2 ReactionsI’m in the same terrible place you are. I’m in 10 mil oxycodone twice a day it stopped working. I’ve also taken muscle relaxers. No one can seem to find the root of the problem. I got all the ablations all the shots that I could handle nothing has helped. I was told that I had a fiber myalgia. I do not have that. I totally feel your pain. God bless.
-
Like -
Helpful -
Hug
1 ReactionHello fellow sufferer! I do feel your pain and I do understand.
The first time in years I finally had a regimen that gave me hope. Don’t feel bad about your pain med regimen. We are all different! What finally started to control my pain was long acting oxycodone 18 mg in am and 36 mg in pm. Additionally, fast acting Oxycodone 10 or 20 mg for breakthrough pain. Yes, it happens, even on high doses of the long acting. If you can wake up and have a few good days a week not in constant agony, you forget what it feels like to feel good for just one day. Don’t let anyone tell you otherwise. It’s your body and your pain. Initially, I freaked out thinking how on earth could I possibly take so much. I’ve never been an addict or abused my meds. If you have a physician actually willing to help you, consider yourself lucky. Unfortunately, I had to change insurance plans and my new insurance doesn’t cover my pain meds. I went back to trying to survive and the pain was so overwhelming, I gave up and paid over 2k to get back on my regimen. Fibromyalgia is real. Chronic pain and fatigue is real. I also have several autoimmune diseases that contribute to my pain. I wish you all the luck and strength you can find!
@jmweissler I’m speechless reading your litany of horrific procedures and endless pain. I have fibromyalgia and chronic fatigue, failed back surgery and both knees shot from OA, failed knee surgery. Something you didn’t mention is psychological therapy for trauma. I hope you’ve addressed counseling because you obviously have PTSD and are susceptible to depression and anxiety from pain. Biblical counseling helped me more than psychologists. But everyone is different. I used to do yoga ( chair yoga is possible too). But now I teach Tai Chi for free at the senior center. This is excellent for mental as well as physical health. My paltry suggestions are likely a drop in the bucket. But I seriously would join a good church for support as well. God have mercy on you. ❤️
With what you are taking, I am surprised you can actually get out of bed, or think coherently! I have no advice for you as I too have suffered pain for decades and tried so many things. All I can say is make sure you are going to a teaching hospital with a renown staff of top physicians. It matters.