Chronic Pain members - Welcome, please introduce yourself
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.
So sorry for what you are going through. After reading your issues, I don’t feel so bad for myself. I too have multiple issues with my bones because of RA. After this last surgery 5 weeks ago, a lumbar decompression and fusion (I’ve had 11 surgeries so far), they wouldn’t give me the level of pain meds I needed because I was already on opioids before surgery. Post surgical pain cannot possibly be helped with a maintenance dose of meds, so I suffered for 4 weeks, crying, screaming, and just miserable. Finally, I got a break and this week I’m at a level 8 pain. I still am unable to walk or stand straight, but at least I can lay down. So, someone abuses these drugs and the rest of us pay! Sad…
Hello @lathak, Welcome to Connect. I can't imagine what a struggle it has been for you having rheumatoid arthritis on top of 11 surgeries and a serious lung infection. One great thing about Connect is learning that you are not alone and there are a lot of members here to help and share their experiences with you. Since you mentioned RA, you might want to read through the following discussions where members have shared their experience and things that they've tried and what's helped.
-- Rheumatoid Arthritis (RA) - Introduce yourself and meet others: https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/
-- Rheumatoid arthritis questions: https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-questions/
Are you able to share a little more about your symptoms and what causes you the most trouble?
I agree with everything you wrote, especially about government involvement. I was told by my former physician and very dear friend, that if doctor's didn't go by the government's rules & regulations, as well as the pharmaceuticals, they could get their license taken from them. Doctor's are so afraid to cross the government for that reason. I would love to hear about your own experience. Thank you for responding and giving me this information. If you're still in pain, I pray you are getting the support you need and pray you're not being treated as an addict. It's a terrible label to put on people who really need the medication. There are times when I wish the doctor's could "see" my pain, even better, "feel" my pain. But I wouldn't wish that on anyone. Do take care and thanks again for your response. I hope to hear more about your experience. I had one of my own that I'll share too. God bless you.
Welcome to the group. I have RA too so I can really sympathize with you. I know you'll find great advice from this group. I sure have. Tell us more about the "proverbial you-know-what hitting the fan". I'm sure there are people out here willing to help you. Good luck and God bless you.
I meant s*** hit the fan!
My symptoms: with RA, my joints in my hands and my hip joint flares up. Almost all my joints are bone on bone, so have needed replacement. I’ve had both knees done, one hip done in 2017 and the next one will be on March 15 coming up, my cervical fusion has been done 3 times, my lumbar fusion was done last Dec. 2021. My rotator cuff (shoulder) has a big tear and the shoulder needs replacement, but will have to wait after I recover from my hip surgery in March. That can take up to 5 months!
It makes me want to scream and cry when reading stories of people being in chronic pain. I have degenerative disc disease and so far have had 3 spine surgeries, 1 laminectomy, lumbar fusion L4-S1, and cervical fusion C4-5. I've been dealing with cervical radiculopathy for about 15 months while experiencing a heart attack and triple bypass. Nerve pain is the worst. There needs to be a delineation between opioid abusers and people who need pain medication to manage their symptoms and life. It's simply maddening. I imagine if the people mandating the laws, government, had any of this disease, there would be plenty of opioids available. People have to be accountable for themselves and I don't think the blame goes entirely to doctors.
In 2007, when I had my last surgery, I had the medication I needed. Today, if you ask for hydrocodone, there seems to be a stigma surrounding your request. Things need to change. I can get a script for 30 pills, but if you're having a bad flare up, that amount wouldn't do much. I usually take, tylenol and ibuprofen and supplement with some hydrocodone if needed.
@retirement75 Amen to everything you said! I am exactly there right now, in a very bad flare and feel very nauseous and haven't slept. Things just aren't cutting it, but I'm still living and breathing, so I consider that enough for now... chronic invisible pain is the worst, especially when you have layers of it.
We can't wait 'til life isn't hard any more to be happy!
Hi @rivermaya34. I'm sorry to read you are in a bad flare. You mentioned having a doctors appointment a couple weeks back. If memory serves, you may have been visiting your neurologist and possibly discussing CSS and/or pain rehab. How did that go for you?