How to deal with constant pain for years

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.

Get a pain pump.

It is so sad to see so many of you who are in constant pain, like me. But, I am still mobile and able to do some work around the house. This will be kind of a stretch, but here goes. Has anyone discovered that they have long term Lymes disease? I have had Lymes several times. When all my pain symptoms suddenly reappeared three years ago after being under good conrol, I had a Lymes test. It was presumptively positive. The Western Blot test showed a negative due to there not being enough bands in the positive range. I keep wondering if my Lymes has been lurking in the background just out of detectable range but still actively causing many of my chronic symptoms. Anyone else out there discover this, or, am I grasping at straws. Thanks and hope you all have a less painful day..

I wondered aboit that long ago. I actually can't remember if it was positive. I do have other stuff tho that accounts for all my pain. Nothing random. Were you treated with antibiotics each time?

Hi BON,
Thanks. I've been on LDN for about 4 or 5 years. I take 4mg right now.

I don't know what burning mouth is but I have ulcerative oral Lichen Planus which is probably similar painwise. OLP is autoimmune. I have other autoimmune stuff as so many of us with chronuc pain. Too much adrenaline and cortisol in our systems that lay waste to pit regulatory systems.

About 6 years, I heard about LDN and after studying it for a year! I quite intentionally found a doctor in town that prescribes it. There used to be a yahoo group with some good patient experts, one being a chemist. After studying so much, I feel rather like an expert too unless the rules have changed drastically.

You know, its funny (not funny at all) I've kind of lost a friend because of LDN. She has fibro and ive talked about LDN for a long time. Finally last week she was pleased to show me she was going to start it. She (esp her sleep) get very deregulated quickly. Her first script was for 4.5mg. I was like NO, NO. NO. I told her how nuanced dosage was and how to be successful with the least side effects and reason to fail, she needed to start exceedingly slow.

I hate it when Drs hear about it, prescribe it, and dont fo it right. People can't sleep, have terrible dreams, sometimes systemic candida blows up and they say LDN sucks. Didn't help. And in my case, my "friends" don't think I have any knowledge sadly (I'm also a nurse.) She had already gotten it filled so waa just going to take it because hiw can I know more then her doctor. Course lots of doctors prescribe it now and don't study it first. She invite me, via text, to go with her on her next appt and "school her doctor." I just don't have the bandwidth for snark and esp from a friend that should respect me. If you call someone a friend, don't respect them and don't trust them, then why bother esp like you said, life gets so small.

She took it ti the far end and suddenly started swearing at me big time on text which I wasn't even reading her texts, just trying to save her sleep which after 5 years and numerous doctors she is sleeping.

Well sorry to go on, its just funny you would mention LDN. I lost a friend over it last week. Its hard for me to decide to just not care and watch her go down ths rabbit hole. We were with other friends in the car so at least she can't be a "victim" to LDN. Victim is kind of her specialty sadly.

So at a time when I'm in bad shape and already struggle to do thjngs with people because if you keep saying you can't, soon people stop asking and we are alone.

For me right now, I'm used up with pain. I can't invite people over because my house is so trashed as what happens when you live alone and pain is the overriding thing in your life. I'm just trying to find a reason to stay on earth when I'm 69, all that's left is death anyway and this will be it to the end. Why bother.

Been a hard week. My therapist specializes in chronic pain and trauma. Seeing her today. Anyone else struggling with "what is my purpose" anymore when alone and barely able to get to the BR in the morning? Probably not the right thread but being in constant pain again like this (I've been on crutches since 24yo pretty much with CRPS. I fell so things are so much worse at the moment.) So pain isn't new, just so much worse since the fall. I run a small graphic design business from home and under deadline for a big project that is physically killing me to do but the money will help me hire someone.

Enough of my sob story. I get tired of myself these days. Yup, pain runs your life.

Did you know that as of right now, LDN is approved for thd off label treatment of only CRPS. Funny odd. But we need to fjnd doctors who actually know how yo prescribe it. She said she would break the capsules and take it that way. Also so wrong with any capsule and get the right dose.

Well, sorry to go on and on. LDN is one of those thjngs that yoy have to really commit to. No opioids and it can take 6 mos or more to help. I went off if it 2 years ago and it can help so slowly you can feel like it does nothing - until you go.off and realize two months later, if you put it together "oh. I guess it was helping." But its a long term commitment. I'm on for life. Ths way it helps regulate your adrenal glands, a pharmacist in FL who is truly an expert, has his whole family on it. People don't understand how it works tho and that less is more and don't start at 4.5mg. Unless you want to fail. Find a dr who not just prescribes it unless they have studied it. LDN has almost become a fad drug. I headd one person say they were on LDN and take 50mg a day. Eek.

But being willing to stop opioids for at least a year can be daunting for people who rely on it. I consider myself kind of lucky to be allergic to all opioids. Never an addiction to add to things. Thanks for bringing up LDN. I wish more dictors would study it before prescribing it.

Sorry so long. Lot to say aboot LDN! Helps me tons.

Thanks but too invasive for crps and I'm allergic to all opioids. Won't work for me anyway.

When I think things can't get worse, turns out if you fall, they can. Same with invasive stuff, scar tissue and how do you drive, or think with a constant infusion of drugs?

Oh. I also take LDN, so no opioids. I don't even take tylenol.

I’m sorry about that. I don’t drive. My pain is in my bottom so Ican not sit. That includes sitting to drive. I either stand or lay.

Hi Be Bold,

I empathize with you re the pain. I hope over time the LDN will improve your life

My primary dr prescribed it at my request, but I am going to a pain clinic at Emory hospital in Atlanta where they know a lot about it .
My primary actually had to look it up in front of me because he is not educated about the LDN. I want a dr who knows a lot about the dosing etc.

I appreciate you writing to me about LD N. Perhaps we can chat here from time to time re our progress with LDN.

There have been clinical trials with very positive reports on Fibro and burning mouth in terms of using LDN. I am hopeful. Opiates were a dead end street for me. I just went thru a medical detox to get off tramadol.
Keep in touch. Bon