How to deal with constant pain for years

I had two trials, first with morphine, the second with hydromorphone. Only the hydromorphone took my pain from an 8 down to a 2. That's what made me decide to have the permanent implant done. I had a few days of good pain relief after about a month and a half after the implant. Then, nothing. We moved to a new state and now have a new pain doc managing the pump. After several adjustments with no effect, he suggested refilling the pump with a mix of hydromorphone and an anesthetic. That was worse than the plain hydomorphone, so it was removed and the original hydromorphone put back in. My understanding is that there are only three drugs approved for pain pumps: morphine, hydromorphone, and fentanyl. Not sure I want to go down the fentanyl route.

I'm sorry it hasn't been much help. I take Hydromorphone orally, as opioids are the only meds that have done much of anything for my CIDP.

I think that if fentanyl were the only remaining option for me I would probably try it in spite of the scary things we read in the news. My sister wore a patch for several years. With the pump, the risks are certainly lowered, but it can still be a hard decision. I hope you find relief.

Jim

agree with everything here. excellent advice.

very very sorry about the great difficulties. I have similar problems, always a struggle.

I get some relief.

Some things that have helped: meditation, Hatha Yoga relaxation exercises, lower levels of sugar in the diet seem to help, and also, generally, just staying busy.

take care now

I am in the same boat. I have been to more "pain management" docs than I can count. They all have tunnel vision regarding my back pain from a ski fall 8 years ago. Most want to give me injections. Had too many of those, none worked. Spinal cord stimulator worked for a while, then stopped about 3 years ago. So I had the pain pump implanted. This has never given me any relief. You would thin the pain doc taking care of the pump would take the time to: either investigate other possibilities, or: confer with other docs for their take and possible suggestions. But, no, too busy. Would be nice to find a doc who would take the challenge and really do serious investigation into my pain.

Like you, the thought of fenanyl scares the dickens out of me. If it were safe and actually helpd, I MIGHT consider it. I don't understand how a powerful opioid like hydromorphone doesn't seem to touch this pain. In the back of my mind I keep thinking Lyme's. I have had it several times and always test positive, but this Western blot test doesn't have enough positive lines to be considered positive. I just have to wonder. My pain has spread to other places in my body.

You might speak with a pharmacist about the safety of fentanyl. I would think that in a pump, a prescribed dosage should be fine, but I'm not a doctor or pharmacist. The fear factor is typically having to do with street fentanyl, which is often mixed with other drugs, including synthetics, which makes it so dangerous. If you talk with your pharmacist, I'd be curious to know what they say.

Jim

Good idea. I’ll see what they say.

Revised from another post I wrote on the SI thread but maybe some of y'all have an idea since I also have crps

Hi,
I've had 4 spinal surgeries, last one in 1987. My back has been kind of more of a mess on and off for about 5 years with terrible muscle spasms. MRI shows severe spinal arthritis but also protruding disks from L2 down to S1.
I can't stand up in the kitchen anymore (tile floor maybe?) So bought a stool on wheels for dishes etc. The stool went out from under me and I hit flat on my butt on tile from waist height. So much pain in my right butt cheek. Sharp disabling pain. (I have lived with CRPS from the hips down for 45 years so I have a pretty high pain tolerance.)

I was already in PT so just kept going until (already on crutches for years) I couldn't walk even with them. Xrays, questioning an Occult fracture of spine but neg for that but a lot of scar tissue. So, an MRI, then ortho surgeon who says its an SI joint sprain and offered me a shot or a spinal cord stimulator!.Refused. With CRPS anything invasive is a no-no. And who needs more cortisone. Plus I'm bipolar, cortisone is so bad for brains, and I'm already depressed so cortisone feels like a terrible idea.

My MRI results were 1.5 pages long. Long paragraph for each vertebrae. My back is a mess, has been since I was 23 (nurse slipped discs moving a patient.) I'm 69 and now so much worse.

A PT on YT had movement tests to do to see what replicated the pain. A twist to the left did (right buttock) so now what? Doc says "you don't want a fusion." No, I don't.

But its worse everyday to where a lot of this week, living alone, I've been bedridden. I can barely put weight on my right leg. I use forearm crutches but have gotten along ok till now, post fall.

I can't walk with severe pain - esp standing after sitting. I've arranged like 5 sitting areas so I can keep changing. Just really severe pain. I've lived with crps pain for 45 years but THIS! is unbearable. Not traveling down my leg.

Starting seeing chiropractor and feels better when I leave till I sit down again and can't walk again. Chiro is $80/wk out of pocket (2 visits) for what medicare doesn't cover. She says sciatica. Dr say si. I feel hopeless. Trying to do life alone. Sink full of stinky dishes right now. I still work and run a small graphic design company from home but can't very easily work.

Online says "sprained SI joint" will get better in a few weeks. This is getting worse. Medicare pays for nothing for home help. Medigap only pays if medicare pays.

I'm at a loss over here. People guess at a dx, then say offer invasive things like throwing darts at a dart board. Pain doctors only do invasive things. Any thoughts? Esp living alone and can't function. Friends seem to have disappeared when you can do less and less things. Leave hime less ans less often. Feeling very hopeless.

I take meloxicam tho I dont think it helps much. Doing cold and heat. Chiro. PT. Massage tomorrow. But I have to work. Deadlines for clients so I sit at the computer when I can and just cry. Pressure to get things done and i can't think. But need the extra income.

Who should i see next? I'm in Asheville so not the best medically. Go to Duke if I can drive that far and get told the same thing? Sorry, I'm just so discouraged. I'm only 69. I would not even consider a nursing home. Shouldn't have to. Run a small business from a nursing home???? Because I can't get help to wash my dishes?

When drs ignore you, blow you off, basically say "too bad, so sad" and you can't do life anymore... what? I'm allergic to all opioids which I guess is a good thing. I take nothing for pain except an occasional Excedrin. Not for migraines but I think caffeine can help pain. Doc says I can't take Excedrin because of Meloxicam which who knows if it even helps. Sorry to sound so pitiful an whinny. I'm at a loss and things are heading south emotionally.

Thanks.

Costachondritis is helped by my PT who practices like an osteopath. Because I use a walker my arms don't swing when I walk. She has me using a noodle when walking in a pool and I help myself by using a motion with my arms in front of me similar to walking swinging one's arms. It has helped a lot.