How does one survive chronic 8/10 pain and quickly deteriorating health?

[+ Gar1eth]

Talk to your local "head shop" as we used to call them.

 

I was in Seattle for a friend's death, and his roommate ... "non-sexual life partner", he was an Abbot ... suggested some sleepytime weed. A square lasted 12 hours (anticipate length of effect) and was ALMOST better than Ambien, to which I was habituated for about eight years.

 

Be careful with the comestibles. A friend from Dallas came to Seattle and tried some. I don't think he is a naif when it comes to Mary Jane. But he said the food zoned him out for hours.

 

 

And just as point of discussion, not all CBD has a significant amount of THC. The limited amount of CBD available legally in Texas doesn't.

 

Gman

[LivingnLA]

When you've apparently misunderstood the pain scale.

https://www.youtube.com/watch?v=5XlTnpTSio8:560

 

This is a cop who was shot once in the face and twice on the hand.“Pain is a 7 out of 10.” I’m still not sure if I’m overestimating my pain or they’re underestimating or both.

 

(The officer lived and surgery on his jaw was successful.)

 

Pain is an output from your brain based on sensory inputs from your body and your life experiences. A 7 out of 10 is his perceived pain. That is indepedent of how you perceive pain, though since pain is a perceived experience with sociological and psychological aspects, your perception of your own pain may shift some since you've seen this and been affected by it.

[LivingnLA]

CBD can be very effective for some people. It all depends on dosage, how it's taken, and how your body reacts. I would suggest a 100% CBD topical that you apply to the localized area when you perceive pain.

 

And just as point of discussion, not all CBD has a significant amount of THC. The limited amount of CBD available legally in Texas doesn't.

 

CBD is CannaBiDiol, which is one of over 100 cannabinoids identified from cannabis plants. It does not appear to impair your conscious mind (ie., it doesn't make you high).

 

THC is TetraHydroCannabinol, which is the principle psychoactive cannabinoid in cannabis plants (ie, it makes you high).

 

The highly limited research that we have so far, has found many medical uses for both of these cannabinoids and many others. But, American bigotry, classism, and xenophobia has greatly restricted research in this area until recently.

 

https://splinternews.com/the-racist-strain-of-marijuana-1822511845

 

Industrial hemp has only recently been legalized, which will be great because it has many useful applications. One application that will be huge is that it can be a great source for pure CBD. Sadly, CBD and THC are still Schedule 1 listed by the DEA, so this makes it challenging sometimes to find them. But, if you live in a state with legalized cannabis, your local dispensary should be able to help you. They will likely recommend something that is not 100% CBD because the ways the laws are written leave such products in a gray area. It's easier for them to sell a 90% CBD/10% THC product than a 100% CBD.

 

If you can't find a good quality pure CBD topical ointment or cream, direct message me and I can refer you to some online sources.

Edited June 5, 2019 by LivingnLA

[+ OliverSaks]

Just a small correction, because it gets repeated so much. CBD IS psychoactive, but it does not get you “high.” A Yale researcher made this point clear to me during a grand rounds presentation on his two decades of work with the substance.

 

“Very simply stated, what is clear about CBD is that it must be considered psychoactive because of its ability to act as an anti-anxiety agent and an anti-psychotic agent," Russo said.”

 

CBD can be very effective for some people. It all depends on dosage, how it's taken, and how your body reacts. I would suggest a 100% CBD topical that you apply to the localized area when you perceive pain.

 

 

 

CBD is CannaBiDiol, which is one of over 100 cannabinoids identified from cannabis plants. It is nonpsychoactive. In other words, it does not affect your conscious mind (ie., it doesn't make you high).

 

THC is TetraHydroCannabinol, which is the principle psychoactive cannabinoid in cannabis plants (ie, it makes you high).

 

The highly limited research that we have so far, has found many medical uses for both of these cannabinoids and many others. But, American bigotry, classism, and xenophobia has greatly restricted research in this area until recently.

 

https://splinternews.com/the-racist-strain-of-marijuana-1822511845

 

Industrial hemp has only recently been legalized, which will be great because it has many useful applications. One application that will be huge is that it can be a great source for pure CBD. Sadly, CBD and THC are still Schedule 1 listed by the DEA, so this makes it challenging sometimes to find them. But, if you live in a state with legalized cannabis, your local dispensary should be able to help you. They will likely recommend something that is not 100% CBD because the ways the laws are written leave such products in a gray area. It's easier for them to sell a 90% CBD/10% THC product than a 100% CBD.

 

If you can't find a good quality pure CBD topical ointment or cream, direct message me and I can refer you to some online sources.

[LivingnLA]

Just a small correction, because it gets repeated so much. CBD IS psychoactive, but it does not get you “high.” A Yale researcher made this point clear to me during a grand rounds presentation on his two decades of work with the substance.

 

“Very simply stated, what is clear about CBD is that it must be considered psychoactive because of its ability to act as an anti-anxiety agent and an anti-psychotic agent," Russo said.”

 

An interesting point. It all gets murky fast when we start talking about how the mind influences the body and how the body influences the mind. I accept your correction with the understanding that our knowledge of CBD's psychoactiveness may actually be that it affects other bodily processes to produce psychoactive effects. Take the recent example of how flawed assumptions led Pfizer to bury the efficacy data on Enbrel as an Alzheimer's treatment because it's an "anti-inflammatory that doesn't pass the blood-brain barrier." But preliminary research shows Enbrel injections in muscles near the spinal cord were highly effective in reducing TNF-alpha in the brain which led to immediate improvement in the patients in the study.

 

And here's an interesting article about CBD and how it many help people with anxiety:

https://www.leafly.com/news/health/cbd-for-treating-anxiety

[gallahadesquire]

An interesting point. It all gets murky fast when we start talking about how the mind influences the body and how the body influences the mind. I accept your correction with the understanding that our knowledge of CBD's psychoactiveness may actually be that it affects other bodily processes to produce psychoactive effects. Take the recent example of how flawed assumptions led Pfizer to bury the efficacy data on Enbrel as an Alzheimer's treatment because it's an "anti-inflammatory that doesn't pass the blood-brain barrier." But preliminary research shows Enbrel injections in muscles near the spinal cord were highly effective in reducing TNF-alpha in the brain which led to immediate improvement in the patients in the study.

 

And here's an interesting article about CBD and how it many help people with anxiety:

https://www.leafly.com/news/health/cbd-for-treating-anxiety

 

I heard this on the ultra-conservative Boston Public Radio today, and what was not clear to me is whether Enbrel prevents Alzheimer's, or could actually treat it. The article cited above shows what I mean: When looking at insurance claims, the prevalence of claims related to Alzheimer's was down 64% compared to historic controls. Thus, it appears preventative, and Pfizer won't bother to study it, as it is going off-patent and it would cost about $80 million to evaluate its efficacy.

Edited June 6, 2019 by gallahadesquire

[LivingnLA]

I heard this on the ultra-conservative Boston Public Radio today, and what was not clear to me is whether Enbrel prevents Alzheimer's, or could actually treat it. The article cited above shows what I mean: When looking at insurance claims, the prevalence of claims related to Alzheimer's was down 64% compared to historic controls. Thus, it appears preventative, and Pfizer won't bother to study it, as it is going off-patent and it would cost about $80 million to evaluate its efficacy.986542

 

Here's a good article about some possible reasons why Pfizer probably buried this data:

 

https://www.fool.com/investing/2019/06/06/5-reasons-pfizer-sat-on-a-potential-new-alzheimers.aspx

[+ FreshFluff]

I’m very sorry for what you’re experiencing. I had a similar experience a few years ago. Two epidurals followed by fusion fixed THAT problem and I wasted no time getting off the narcotics that were liberally prescribed (and barely helped anyway)

 

During this, the only relief I received came from both acupuncture and dry needling. The relief was temporary (as gravity was my enemy) and getting there and back was excruciating, but those few minutes of relief made it all worth while.

 

Thanks for sharing this. Was this in the neck or lumbar spine? How much relief did you get from the epidurals, and did they cause any problems?

 

My experience with the meds is the same. Maybe it's because I took a low dose, but it has barely takes the edge off when the pain is unbearable. There's no high either. In fact, there was a sort of anti-high when you get barely any pain relief.

Edited July 6, 2019 by FreshFluff

[+ sniper]

I found the combination of opioid(Percocet) plus muscle relaxant(Skelaxin) was what made it more bearable. It was like I still was in pain but wasn't as distressed by it. I also found bad standup specials absolutely hilarious. But I wasn't, like, happy with no outside stimulus.

[Rudynate]

Thanks for sharing this. Was this in the neck or lumbar spine? How much relief did you get from the epidurals, and did they cause any problems?

 

My experience with the meds is the same. Maybe it's because I took a low dose, but it has barely takes the edge off when the pain is unbearable. There's no high either. In fact, there was a sort of anti-high when you get barely any pain relief.

[Rudynate]

I got excellent pain relief from opiates. Before surgery, I took Tramadol, which is intended for moderate-to-severe pain. I took the Tramadol for months at a time. A downside was that it was slow to take effect. A fringe benefit was that it amped my libido.

 

In the hospital, for the first couple days post op I got dilaudid IV. That definitely worked. The downside to it was that it's very disinhibiting, so you gave make it a point to behave yourself.

 

After that I had Norco. One Norco is the same as two vicodin. I was prescribed two Norco every 4 hours. They stressed taking them as directed so that you remain pain free.

 

I was also prescribed neurontin for nerve pain and valium for muscle spasms.

 

I had no difficulty stopping any of them when it was clear I no longer needed them.

[gallahadesquire]

If you look at the MRI of my L4/L5 vertebra, the space in my spinal canal drops to a diameter less than 10% of the vertebrae above it. Nerve on bone. And that's what it looked like 18 years ago.

I'm just saying you can have a scary-looking picture and be surprised at what you can do. And if I live long enough, I am certain I will need the surgery(bones get thicker as you get older and can't let that 10% go to 0% or I'm paralyzed.

Just reading through this thread. I was a chronic pain physician for about ten years of practice.

 

It’s just the cauda equinavat below about L3 ... spinal cord per se ends variable L2-L3. 10% is plenty of room, it’s just nerves at L4-L5.

[+ FreshFluff]

Long story short: 10 weeks after this began, the tingling on index/middle has mostly away, the elbow pain is decreasing (maybe 3.5-4/10), and I can stand without terrible scapula pain. But the arm pain still flares when I use the armagainst any sort of resistance, like arm wrestling surgeons neuro exams. Any real PT is thus impossible for now.

 

The surgeons/PM docs almost all told me (1) good chance the pain improves on its own and (2) if it doesn't, get an epidural first before I consider surgery. The issue is that, even in good hands, cervical epidural steroid injections are risky and chance of temporary benefit is 50-60%. So I have to be certain this isn't improving on its own. To check, I've reduced both meds 50% over the long weekend.

 

The pain is up and down and it’s hard to know the trajectory. Also, I'm going back to NYC and am still scheduled for unrelated surgery w/a long recovery time. If I still need a steroid injection I'd need to fly back here or else start consulting from scratch there.

 

BTW, I give a lot of credit to the doctors I've seen. All have been really honest and have not tried to sell me anything.

 

Thanks for all your support and responses. Will respond soon.

Edited July 7, 2019 by FreshFluff

[+ FreshFluff]

Just reading through this thread. I was a chronic pain physician for about ten years of practice.

 

It’s just the cauda equinavat below about L3 ... spinal cord per se ends variable L2-L3. 10% is plenty of room, it’s just nerves at L4-L5.

 

I hadn’t known that you did PM. Did you do c-spine injections often? Transforaminal or interlaminar?

 

My understanding is that ESIs are It’s much riskier there, even ifthry do interlaminar and stay at C7/T1. Doctors appear to rely on finger feel as much as imaging to figure out where they are.

Edited July 7, 2019 by FreshFluff

[Rudynate]

I hadn’t known that you did PM. Did you do c-spine injections often? Transforaminal or interlaminar?

 

My understanding is that ESIs are It’s much riskier there, even ifthry do interlaminar and stay at C7/T1. Doctors appear to rely on finger feel as much as imaging to figure out where they are.

 

 

I had a bunch of epidural injections in the lumbar spine. The pain relief was spotty. A couple times I got a few pain free weeks, but from others, the effect was negligible. You were only supposed to be able to get one every three months, but my doc in the chronic pain clinic allowed me to get them more often.

[+ FreshFluff]

I had a bunch of epidural injections in the lumbar spine. The pain relief was spotty. A couple times I got a few pain free weeks, but from others, the effect was negligible. You were only supposed to be able to get one every three months, but my doc in the chronic pain clinic allowed me to get them more often.

 

I heard the same thing. See d like a lot of risk for the benefit.

 

@sniper and Rudyhate, I’m on a similar medication regimen. I found the long acting formulation better. But I have to cut it back now to see how the underlying pain is.

[+ Funguy]

I truly sympathize.

I went thru a very long period of severe lower back pain, herniated discs, degenerative arthritis, etc etc and I finally gave up my medical practice when I was 49. I had already had 2 surgeries (fusion and discectomy) which vastly improved my condition but not enough not to be able to have a productive life.

A very good pain doc gave up on me and referred me to a colleague who was amazing. He was formally an anesthesiologist who switched to pain management. He was also against surgery for most cases because of side issues - my problems mostly turned out to be scar tissue (from trauma rather than the earlier surgeries) wrapped around nerve roots and it is just about impossible to get rid of it. He was able to do epidural endoscopy ( put a scope into the epidural space) and scrape the scar tissue away from the nerves but it never lasted.

He said the same - it hopefully will burn itself out. Roughly 15 years later it is finally beginning to ease up.

Of course I wind up taking 10 mg norco every night but that is certainly better than needing it during the day, too. That's why I sold my medical practice - I couldn't afford to take a chance with taking the meds AND working at the same time.

 

Several other things helped immensely - he had a psychologist in his office who specialized in hypnosis and who taught me self hypnosis in order for me to control my own perceptions of the pain - it's been years and I still use the self hypnosis, esp. on the now rare instances when the pain is exvruciating.

 

I had multiple epidural endoscopies and radiofrequency denervations to literally burn/kill certain nerves - took a number of sessions but ultimately was successful.

 

I also use marijuana edibles - every night - sleep is wonderful esp without any kind of hangover in the am.

 

Mind you, my problems were thoracic and lumbar not cervical. My bro-in-law had neck issues and had a fusion performed, still had pain but much less and I referred him to my doc who did a series of epidurals which worked like a charm. But they must be done by an EXPERT. They were done under anesthsia and with fluoroscopy to guarantee being in the right location.

 

The point of this is that should you try to wait this out without surgery, find yourself the best pain management specialist available and don't settle for one who just does an epidural and gives you pills. The interesting thing about opiates is that you can take them for long periods without addiction IF THE BODY IS IN PAIN. You may develop tolerance whereby you might begin to require higher doses but you can quit and have no withdrawal. If the body DOES NOT need them, you do become addicted.

 

As far as the edibles, I can't say that it is the CBD because I am using a hybrid preparation which gets me to sleep and helps my appetite.

 

Truly, good luck!

[+ FreshFluff]

@Funguy

 

Thanks for this extensive post, which will be helpful for all others with nerve pain as well. I'm sorry that you had such severe pain that you had to let go of your practice. I'm glad it's finally healing, but that must have been a long 15 years. Hypnosis sounds like an interesting option, and I've heard about CBT too. The ablation your doctor did sounds intriguing. How did you/your doctor learn about the scar tissue around the nerve? Did imaging show it?

 

Surgery: As you said, not happening now, especially given that the pain has decreased. I'd only do that if the pain increases again or there's progressive weakness. In the near future, it's going to be massage/whatever PT I can tolerate or epidurals or both.

 

About the epidurals: I consulted several anesthesiologists, all referrals. I asked about about volume of injections for the c-spine and what complications they had seen. After all, practice makes perfect. I think I found the best anesthesiologist/pain doc in the area. As you said, you definitely need the fluoroscopy and contrast. Even with that, there are a range of techniques involving which views are used, etc. (I got most of that from a site where trained PM docs discuss this stuff anonymously.)

Edited July 8, 2019 by FreshFluff

[+ LIguy]

I also suffer from nerve pain due to spinal stenosis, bulging discs, sciatica etc and docs refuse to operate or give me epidurals because I have 2 blood disorders, ITP and Von Willebrands, so I'm making do with monthly visits to pain management where I have to give a urine sample and doc talks to me for 5 mins and sends in a refill order for Gabapentin(3600 mgs a day) and oxycodone 10/325 2x a day. It helps but sometimes walking is very painful. I'm also dealing with adrenal insufficiency after 2 years of high doses of prednisone which worsened my nerve pain after tapering off.

[+ Funguy]

@Funguy

 

Thanks for this extensive post, which will be helpful for all others with nerve pain as well. I'm sorry that you had such severe pain that you had to let go of your practice. I'm glad it's finally healing, but that must have been a long 15 years. Hypnosis sounds like an interesting option, and I've heard about CBT too. The ablation your doctor did sounds intriguing. How did you/your doctor learn about the scar tissue around the nerve? Did imaging show it?

 

Surgery: As you said, not happening now, especially given that the pain has decreased. I'd only do that if the pain increases again or there's progressive weakness. In the near future, it's going to be massage/whatever PT I can tolerate or epidurals or both.

 

About the epidurals: I consulted several anesthesiologists, all referrals. I asked about about volume of injections for the c-spine and what complications they had seen. After all, practice makes perfect. I think I found the best anesthesiologist/pain doc in the area. As you said, you definitely need the fluoroscopy and contrast. Even with that, there are a range of techniques involving which views are used, etc. (I got most of that from a site where trained PM docs discuss this stuff anonymously.)

 

Will reply to your point on CBD via PM.

 

The scar tissue issue was not even on the board until my doc did the first epidural endoscopy and could directly visualize the actual scar tissue. He even did a complete video showing wide open areas where the contrast moved around freely and then all of a sudden it just stops flowing and backs up where the scar tissue is. He used the end of the scope to dislodge some of it and then repeated the procedure every 4 -6 months until he couldn't dislodge any more of it. The first time he did it I was pain free for the first time in about18-20 years and i refused to move off the gurney after the procedure because I didn't want to jinx the results and have the pain return. When i look back on it, it was really pretty funny, in a weird sort of way!

[+ FreshFluff]

@BnaC Sorry you had to del with the neCMy doctors totally agree with you on doing epidural first. Pinch is bad especially since it’s due to bone hypertrophy but the surgeons keep telling me I have a decent chance of relief with no surgery.

 

@LIguy I have stenosis too. I’m sorry about the Prednisone. I hope you find a solution soon. The radiculopathy sucks esp when it’s hard to walk.

[jjkrkwood]

As some may know, I have been absent from the site for nearly 2 years, during which time I had health issues with my back similar to those of Funguy and LIguy. Combined with the need for a hip replacement, I was in excruciating pain, unable to walk and in a wheelchair for over 1 year... Nothing worked to relieve the pain, meds, epidurals etc... and the sciatica was killer... I wanted to DIE.... I had always been an independent person and here I was unable to do anything for myself. I couldn't reach my feet to put on socks/shoes, I couldn't lift my legs to get in the shower , I couldn't prepare a meal.... for me it was a living Death.

This past Feb 15th, I had my spinal surgery, which turned into an 8 hr procedure due to complications of fluid sacs bursting, BUT in the end, after my stint in rehab and weeks of home PT, I have no back or sciatic pain any longer On March 30th, 6 weeks after my back surgery, I had my hip replacement... I was transported to the hospital on a stretcher and in excruciating pain, like a knife going thru my groin with any movement.... As of this writing, I CAN WALK again and have no pain, take no pain med, and can sleep at night.... It's like a miracle.... So for those of you still suffering, and feeling there is NO light at the end of the tunnel... THERE IS... You just have to hang in there and rely on doctors THAT YOU TRUST.... God Bless you all and good luck.

[Rudynate]

@BnaC Sorry you had to del with the neCMy doctors totally agree with you on doing epidural first. Pinch is bad especially since it’s due to bone hypertrophy but the surgeons keep telling me I have a decent chance of relief with no surgery.

 

@LIguy I have stenosis too. I’m sorry about the Prednisone. I hope you find a solution soon. The radiculopathy sucks esp when it’s hard to walk.[/QUOte]

 

 

I see you've mastered the vocabulary of spine problems.

 

My first procedure was for stenosis. I had a synovial cyst at L3-L4 that was protruding into the spinal canal and pressing on the nerves. The decompression was a walk in the park compared to the fusion.

[robberbaron4u]

As you know from my previous thread, I had a medical problem already and was seeking out surgery. That problem has already caused me a bunch of issues--serious issues. After several months of consults, I finally scheduled both the preliminary surgery (in a few days) and a major surgery with a 6 week recovery.

 

Then, 4 weeks ago, I wake up with what seemed like a muscle spasm. I'd had them since childhood and they always resolve after a few days. This time, it worsened. Finally, I asked for an MRI. It showed that the lower half of the neck (cervical spine) had severely deteriorated. I saw a really good physiatrist today. He basically said, "Sure, I"ll do a nerve block but here's a referral to a surgeon. You can apply for temp disability. Oh, and you just got a prescription for for that famously strong pain medication? You're clearly suffering, so it's not enough. Here's a bunch more.". With an opiate epidemic going on, you can imagine how bad the situation must be to be for him to encourage that. So now I'm facing spinal surgery on top of the original surgery. Spinal surgery is famously risky and can leave you worse off than before--with a damaged larynx or even paralyzed. Everything was relatively ok 6 weeks ago and then bam! My life as I know it is over.

 

When Avalon posted a similar thread, I thought he was pretty young. I'm about two decades younger. I could have eventually accepted being homebound, even bed bound, if that had been my prognosis. I would have been ok with walking around with a walker. (For now, I'm still walking but obviously I need medication for that.)

 

What I can't take is this level of pain, not for long. The medications can barely touch neuropathic pain, and the little relief they give doesn't last. I barely sleep because I'm woken up by pain. I hesitated to post this because I know that others have been through worse. But I could really use support right now.

Fortitude and cognac.

[robberbaron4u]

Fortitude and cognac.