Chronic Pain members - Welcome, please introduce yourself

My name is Amy, I’ve been living with fibromyalgia for 15yrs and I also have CRPS in both of my feet. I have tried 11 different kinds of treatments and have yet to find relief. My PM Dr is a jerk who has horrible bedside manners and has had me on the same dose of norco(7.5/325) for 5yrs now. I’m completely tolerant to it and have to take all my daily pain meds at once just to barely take the edge off my pain. He refuses to increase my dosage or change my pain medication. So here I sit just existing😔I can no longer do anything I enjoy or plans. All my family and friends have abandoned me💔. So I thought I’d try this support group in hopes of meeting people in similar situations to give me some hope

So sorry, its tough. I feel that my doctors abandoned me after surgery and also neglected to recognize that I had two situations going on, one the result of the first. I am still trying to be hopeful that the second situation has some resolution. I've told the doctors please deal with this, I can deal with the first pain issue in lower legs, I just can't deal with the hip pain in left leg that is debilitating.
Incidentally, I am Rosie, I have an spinal cord compression from a minor trip in July 23. Doctors did not recognize the problem at all, said I had tendonitis in both arms, suddenly. When I did get an MRI of the neck the radiographer marked it for immediate attention. There were two MRIs, one urgent and one not. The NP ignored the stat on the one. I was getting worse, I wanted to get the info, and after a song and dance I read the information myself and started things in motion to get attention, but had lost all faith in the my medical team. Eventually fusion C5-7 in January 24 at Mayo. Happy with surgeon. But secondary issue was balance that lead to bad walking and problems in the left hip. I am left with this problem (along with the neuropathy in all limbs and the balance)
need support too. Trying CBT

@daxel79 in my experience it’s hard to find a compassionate pain med doctor. I would go “doctor shopping until you found one. They are out there, just few and far between.

@rrenaut I have a cervical spine issue that left me with progressive spasticity which lately has caused worsening balance issues. I go to PT at a dedicated spinal cord center (I started with regular PT close to home but it was essentially a waste of time). I was introduced to a vibration plate. I am up to 9 minutes 2 x a week while at PT and my balance is greatly improved. One objective measure is tandem walking. Heel to toe, like the drunk test. Before PT I couldn’t tandem walk at all. After the vibration plate I can now easily walk 9 steps. I foresee more improvements when I get my own and can use it every day.

One cautionary note. If used on hardwood floors or time the vibration can cause nails to come out of the wall in the house behind the drywall. It is recommended to use on cement with a “vibration cushion “ like a really thick yoga mat underneath. For me this mean I must use in the basement (I’m not quite steady on stairs) or in the garage. The garage seems less than ideal but that’s what I’m going with. I’m going to clean out a little corner and have either a ballet bar or grab bars installed to help with my steadiness.

Vibration plates range in price from $100 to $5000. I don’t know what the difference is really but only the ones over $1500 come with bars to hold onto. The really cheap ones don’t have the hertz (frequency) needed for spasticity, 22-26 hertz,

@laura1970

What exactly do you mean by Dr shopping? I can’t meet with a new pm Dr until my records are sent to them to even schedule an appt. Also won’t that make me look bad if I’m having my medical records sent too many different places, I feel like they’d label me as a drug seeker then😔

@laura1970
Thanks for the idea. To add to my problems I had a bad concussion in Jan 2025, but the upside was that I did finally get to a balance PT and was with her for 5 months. It really helped. I rolled up my yoga mat, on a cushion, and it worked quite well as a substitute for something sophisticated, so this is an idea others can try. Long term not so good on the yoga mat, but that is a cheap replacement. I still need to work on this, but the idea of standing on this and focusing on a spot with eyes open and then eyes closed, using a timer, and see what happens. Keep a chair nearby because if you are like me you will think you are fine with your eyes closed, but no, suddenly I would topple onto the chair. I've moved beyond that . We did not do the heal to toe walk, so I will start that practice. Thanks

@daxel79 Probably depends on your insurance, as to whether you can self refer, and whether your insurance will allow multiple opinions

@daxel79 A lot of us here, myself included, sometimes feel like all we're doing is existing, nothing more. My chronic pain prevents me from doing much if anything physical anymore, which is maddening at times because I worked a very physical job for over 35 years. Now, my wife does the majority of the yard work while I have to sit and watch her do my job.
It's no wonder so many chronic pain suffers are depressed and even suicidal at times. Hang in there.

@daxel79 yes many uncompassionate docs may see it that way. If they do, you can rule them out. In my part of the country, mid Atlantic region, most pain management docs just want to do procedures. I was on a medium dose of tramadol but talked into a Medtronic intrathecal catheter. Cash cow for them. 6 years later after much advocating for myself had it removed. I had it placed for neck pain and spasticity but developed low back pain which the pump didn’t help with. After removal, went to a spine surgeon who diagnosed me with arachnoiditis, an inflammatory condition of the thin lining surrounding the spinal cord. There is no treatment, and it is progressive. In advanced forms, patients are usually wheelchair bound and in constant agony. This was at a very reputable teaching hospital.

I have seen a few pain management docs at other highly regarded institutions. I haven’t found one I clicked with and refuse to compromise. I refuse to have anything else injected ito my spinal cord (that’s how all this happened, why would I repeat).

Maybe they consider me a drug seeker. When I find a good one I have hope they will see the greater picture.

What I have learned is there is no better advocate than yourself