1. < Chronic Pain

How to deal with constant pain for years

Posted by kathyclickner53 @kathyclickner53, Apr 22 11:20pm

I have dealt with severe pain for years it’s hard to do things I used to do pain in my hands my back. My eyes legs I take pain meds tynol I use cream patches. I have been kinda discouraged lately I keep hoping soon i could be delivered of pain I have to depend on walkers canes wheelchair I loose my balance a lot this pain has changed my ability to work visit go places It’s been very discouraging.

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barbbielor | @barbbielor | Apr 29 6:17am
In reply to @bebold "Revised from another post I wrote on the SI thread but maybe some of y'all have..." + (show)
@bebold

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.

Jump to this post

I am with you about cortisone. Sends me into depression. My pain management doctor gives a quarter of a dose when absolutely necessary. He learned the hard way. Long ago he gave me his cell phone number over concern for an allergic reaction to something he injected. It gave me laryngeal edema. Since then we text back and forth and after a full dose of cortisone he received some disturbing texts from me.
CRPS is nasty. My faith in Jesus and His ability to heal keep me moving forward. I found in times of depression calling on His name, thanking, and praising Him chases the blues away. Healing has come in a variety of ways. My podiatrist just got Qutenza approved for the SFN and CRPS in my feet. I have an appt in a couple of weeks. May you find relief in a way that works for you.

REPLY
glenc | @glenc | Apr 29 8:01am

Electroacupuncture has really helped me have spinal cord compression and a bunch of pinched nerves gave me movement back in neck. Now going to get it for lower back. Drug free and it helped.

REPLY
Mentor
Rachel, Volunteer Mentor | @rwinney | Apr 29 10:45am

Hey there @kathyclickner53, welcome to Connect. Hugs to you for a little support in knowing you're not alone. Outside of medication and things doctors can do, its important to think about what you can do for yourself. Living with chronic pain can take one of two Avenues. It can rule us if allowed or it can make us stronger more inventive and more resilient, but that takes personal work and desire. May I ask, how are you being supported during your most troubled times? Do you have family and friends that support you with encouragement? And how do you support yourself? Perhaps talk therapy, or journaling. For me, keeping a gratitude journal has helped keep focus on looking for positivity even on the days when I don't feel positive. We know that the sun will always shine again it just gets a little dark sometimes. Also, joy and distraction is important. What helps your brain take a vacation from pain in the way of distraction such as watching or listening to a funny movie or podcast, calling a loved one or paying a compliment to others. Crazy but helping others is a great way to help us feel better about ourselves. Precisely why I'm here to help encourage you... it's win-win. You've had so many great responses, I'm wondering how you are doing today?

REPLY
bb03 | @bb03 | Apr 30 5:51am
In reply to @bebold "Revised from another post I wrote on the SI thread but maybe some of y'all have..." + (show)
@bebold

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.

Jump to this post

I too live with chronic back pain due to arthritis and bulging discs and pinched nerves. I’m also allergic to all opioids, and yes it is a Good thing . I can see how many people become addicted to pain meds. I do take Sam E, Boswallia, hyaluronic acid and fish oil daily and some people add Tumeric to that mix but it hurts my stomach. With Bipolar I don’t know if SAM-E is contraindicated? Ask you Dr. I can’t even take Lyrica because of my slow gut, I’m on Linzess for that. I keep moving, eat healthy and drink lots water. I’ve been a nurse 42 years and three years in an ER while in school. I’ve hurt my back from heavy lifting numerous times. I do a sit down RN job now but like you said hurts when you stand and hurts when you sit. All said Drs don’t have all the answers. I pray God gives you and them wisdom to help you in the best way and I also pray for God to heal you. It says in the Bible you get not because you ask not. Keep asking. Be a pest!, LOL! Also give him thanks even for the small things. I’m sorry for all your going through. I know it’s tough.

REPLY
tjanet | @tjanet | Apr 30 10:22am

I have had constant abdominal pain for over 3 years and no pain medications helped. A nurse suggested a low dose of haldol, so I talked to my doctors and got on a low dose of haldol within a couple days my pain was much better.
I have short gut syndrome. I had a bowel obstruction in 2019 and had 3 surgeries because of it now I only have 2ft. of my small intestines left but I have all of my large intestines. The doctors are saying that I am doing better than expected. I am able to eat normal food but I have to limit my fiber. Plain water makes me dehydrated so I have to drink fluids with sodium and glucose in them so my body will absorb fluids.

REPLY
healthybon | @healthybon | Apr 30 3:11pm
In reply to @bebold "Revised from another post I wrote on the SI thread but maybe some of y'all have..." + (show)
@bebold

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.

Jump to this post

Hi Be Bold,
Just read your post. I feel for you, and although my pain is from burning mouth syndrome, pain is pain.

Have you heard about Low Dose Naltrexone? There is a lot of success with this for chronic pain. I’m going to try it for my mouth. My life has become so small…..the pain ruins everything.

Google it and see if it might be a possibility for you. There may be doctors in your area that will prescribe it.

Feel better, BON

REPLY
1 reply
coachrandy | @coachrandy | Apr 30 7:28pm
In reply to @heisenberg34 "Like you, the thought of fenanyl scares the dickens out of me. If it were safe..." + (show)
@heisenberg34

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.

Jump to this post

I used fentanyl patches for many years and it helped better than anything I had used before than. I have been disabled for 29 years and have had chronic pain longer than that. I eventually was taken off it and started ablations on my neck and back. My advice is to get outside as much as possible and exercise if possible. It is not a great life but you have to try to go on. I know I get tired of people who have no pain telling me this, but I am living the walk everyday so I can say you have got to try to improve you life everyday. Best wishes.

REPLY
1 reply
BeBold | @bebold | May 1 6:45am
In reply to @healthybon "Hi Be Bold, Just read your post. I feel for you, and although my pain is..." + (show)
@healthybon

Hi Be Bold,
Just read your post. I feel for you, and although my pain is from burning mouth syndrome, pain is pain.

Have you heard about Low Dose Naltrexone? There is a lot of success with this for chronic pain. I’m going to try it for my mouth. My life has become so small…..the pain ruins everything.

Google it and see if it might be a possibility for you. There may be doctors in your area that will prescribe it.

Feel better, BON

Jump to this post

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.

REPLY
2 replies
BeBold | @bebold | May 1 6:57am
In reply to @coachrandy "I used fentanyl patches for many years and it helped better than anything I had used..." + (show)
@coachrandy

I used fentanyl patches for many years and it helped better than anything I had used before than. I have been disabled for 29 years and have had chronic pain longer than that. I eventually was taken off it and started ablations on my neck and back. My advice is to get outside as much as possible and exercise if possible. It is not a great life but you have to try to go on. I know I get tired of people who have no pain telling me this, but I am living the walk everyday so I can say you have got to try to improve you life everyday. Best wishes.

Jump to this post

Sadly with CRPS of both legs, walking outside is out except to car and back. Need to save my walking pain tolerance for thjngs like grocery stores, washing dishes, cleaning the cat box etc. People say that to me all the time, I've not been able to walk like that my whole life, except when I went inti remission for about 8 years and lived at the gym. I did an hour a day on the elliptical. My gym rat time was a nice time in my life.

Now I have a failing knee replacement afyer 15 years, and the other knee needs to be done - I don't have the energy to add more pain. Bilat shoulder surgeries leaves me out of the gym at all. I really am trying to do life as best I can hoping this fall didn't change things forever.

Thanks for reading and for suggestions. I know it was long. I wish I could walk. It seems where I live, retired people hike all day every day. I live in a beautiful place with mountains and waterfalls. 10 minutes to the Blue Ridge Parkway. Us people in pain need to find each other. I always loved to play cards, almost anything, and just doing that again would bring me pleasure. Thanks.

REPLY
heisenberg34 | @heisenberg34 | May 1 10:22am
In reply to @bebold "Hi BON, Thanks. I've been on LDN for about 4 or 5 years. I take 4mg..." + (show)
@bebold

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.

Jump to this post

I wish my pain management doc would take the time to REALLY look into my chronic pain. I have the pain pump and after a year it has provided little pain relief. I asked him if he might confer with some of his colleagues regarding my years long pain journey. He seemed willing but the proof is in the pudding. Any bets as to if he actually takes the time to confer with someone else. ANY BETS?

REPLY
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