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

[jjkrkwood]

Fortitude and cognac.

 

Robber, I hope that comment was tongue in cheek, because living with relentless, chronic pain is no laughing matter....It reduces you to a shell of a person.....

[+ FreshFluff]

Robber, I hope that comment was tongue in cheek, because living with relentless, chronic pain is no laughing matter....It reduces you to a shell of a person.....

 

I've only been dealing with it for only 11 weeks so far (not that I'm counting), and it's like it has always been this way. It has sucked everything out of me.

 

I'm so glad the spine surgery worked out for you and that you can walk again. That must feel great.

 

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

 

I've tried. I've also read the physician specialty sub-forums. I've learned a great deal that way that I didn't pick up from reading the literatue

Edited July 9, 2019 by FreshFluff

[Rudynate]

I've only been dealing with it for only 11 weeks so far (not that I'm counting), and it has sucked everything out of me.

 

I'm so glad the spine surgery worked out for you and you're out of pain.

 

 

 

I've tried. I've also read the physician specialty sub-forums. I've learned a great deal that way that I didn't pick up from reading the literatue[/quote

 

I'm like you - I like more information rather than less. My surgeon was very patient with me that way. It didn't matter how many emails I sent him, he always responded promptly and gave very full answers to my questions. He's a real jewel.

[stop]

I am not a doctor but I am in a tangential occupation. As others have expressed as much expertise as you can do. Get second and third opinions. I can tell you we see far more unsuccessful back surgeries than successful. There is a lot going on back there and what may seem like one thing could be something else.

 

The problem with pain and extremities is your spine is it’s like a electric train track one piece could be causing the pain for the entire track. So you think you are fixing L5-L6 but that is just a symptom of a T vertebrae where the real problem is.

 

One other piece of advise and I do not get why doctors aren’t explaining this to patients but the more narcs you take the more pain you are going to have. It does the inverse after 30 days or so. Realistically most people should not need narcs for more than 7-14 days The problem is when you stop taking them your body is still going to hurt because it needs exercise, etc once you past the 14 day mark you are entering into dependence stage. And then at the 30 day mark a persons pain feels worse. So the doctor ups the prescription and they begin the endless cycle our country is in today.

 

Keep in mind that narcs are measures as a morphine equivalent. A doctor charts how much morphine equillevent a person is on. Most people over 90 days are taking more morpheme equivalent than their body can process

 

Narcotics and opioids were created for stage 5 cancer patients so they would not have to go to the doctor every day to get morphine. They were originally intended to relieve pain in the 30-90 days up to death.

 

So be careful with the drugs you are taking and honestly if one of a doctor we used did that just volunteer’s so many drugs, we would instruct their patients they probably want to find a new doctor

 

An initial supply per EBM for a non fracture non emergency is generally 3 days. The doctor is supposed to evaluate the patient after that to see how they are doing.

 

Again I am not a doctor I come from the side that deals with evidence based guidelines such as ODG and ACOEM guideline which are based on years of testing and scientific principles

[Rudynate]

I am not a doctor but I am in a tangential occupation. As others have expressed as much expertise as you can do. Get second and third opinions. I can tell you we see far more unsuccessful back surgeries than successful. There is a lot going on back there and what may seem like one thing could be something else.

 

The problem with pain and extremities is your spine is it’s like a electric train track one piece could be causing the pain for the entire track. So you think you are fixing L5-L6 but that is just a symptom of a T vertebrae where the real problem is.

 

One other piece of advise and I do not get why doctors aren’t explaining this to patients but the more narcs you take the more pain you are going to have. It does the inverse after 30 days or so. Realistically most people should not need narcs for more than 7-14 days The problem is when you stop taking them your body is still going to hurt because it needs exercise, etc once you past the 14 day mark you are entering into dependence stage. And then at the 30 day mark a persons pain feels worse. So the doctor ups the prescription and they begin the endless cycle our country is in today.

 

Keep in mind that narcs are measures as a morphine equivalent. A doctor charts how much morphine equillevent a person is on. Most people over 90 days are taking more morpheme equivalent than their body can process

 

Narcotics and opioids were created for stage 5 cancer patients so they would not have to go to the doctor every day to get morphine. They were originally intended to relieve pain in the 30-90 days up to death.

 

So be careful with the drugs you are taking and honestly if one of a doctor we used did that just volunteer’s so many drugs, we would instruct their patients they probably want to find a new doctor

 

An initial supply per EBM for a non fracture non emergency is generally 3 days. The doctor is supposed to evaluate the patient after that to see how they are doing.

 

Again I am not a doctor I come from the side that deals with evidence based guidelines such as ODG and ACOEM guideline which are based on years of testing and scientific principles[/QUOte]

 

 

I think you are improperly lumping together different patient types and attempting to prescribe a single treatment approach for all.

 

In someone who isn't experiencing chronic pain, limiting opiate treatment to three days and encouraging the patient to get up and exercise and move around makes perfect sense.

 

But to prescribe the same treatment to someone having a documented pathology and months or years of chronic pain would be seriously under treating that patient.

[jjkrkwood]

I am not a doctor but I am in a tangential occupation. As others have expressed as much expertise as you can do. Get second and third opinions. I can tell you we see far more unsuccessful back surgeries than successful. There is a lot going on back there and what may seem like one thing could be something else.

 

The problem with pain and extremities is your spine is it’s like a electric train track one piece could be causing the pain for the entire track. So you think you are fixing L5-L6 but that is just a symptom of a T vertebrae where the real problem is.

 

One other piece of advise and I do not get why doctors aren’t explaining this to patients but the more narcs you take the more pain you are going to have. It does the inverse after 30 days or so. Realistically most people should not need narcs for more than 7-14 days The problem is when you stop taking them your body is still going to hurt because it needs exercise, etc once you past the 14 day mark you are entering into dependence stage. And then at the 30 day mark a persons pain feels worse. So the doctor ups the prescription and they begin the endless cycle our country is in today.

 

Keep in mind that narcs are measures as a morphine equivalent. A doctor charts how much morphine equillevent a person is on. Most people over 90 days are taking more morpheme equivalent than their body can process

 

Narcotics and opioids were created for stage 5 cancer patients so they would not have to go to the doctor every day to get morphine. They were originally intended to relieve pain in the 30-90 days up to death.

 

So be careful with the drugs you are taking and honestly if one of a doctor we used did that just volunteer’s so many drugs, we would instruct their patients they probably want to find a new doctor

 

An initial supply per EBM for a non fracture non emergency is generally 3 days. The doctor is supposed to evaluate the patient after that to see how they are doing.

 

Again I am not a doctor I come from the side that deals with evidence based guidelines such as ODG and ACOEM guideline which are based on years of testing and scientific principles

 

I had gotten to the point where opioids, even the strongest ones did nothing for me, so I moved on and tried CBD and the like, also with ZERO effect. Keep in mind I had the spine problem PLUS having NO right hip left. I was either bedridden or in a wheelchair daily... That's no life....I was devastated when I had to stop driving. It was like death. Its been a long road, and currently I walk with a limp, but ill TAKE IT over what I was before the surgeries…. Having my independence back means the world to me.

[robberbaron4u]

Robber, I hope that comment was tongue in cheek, because living with relentless, chronic pain is no laughing matter....It reduces you to a shell of a person.....

I am afflicted with rheumatol

Robber, I hope that comment was tongue in cheek, because living with relentless, chronic pain is no laughing matter....It reduces you to a shell of a person.....

I am afflicted with rheumatol arthritis. Humour helps. . .

[jjkrkwood]

I am afflicted with rheumatol

 

I am afflicted with rheumatol arthritis. Humour helps. . .

 

Perhaps sometimes.... Sorry to hear. I wish you only the best.

[+ HornyRetiree]

We are all different and our constant pain is the result of varying injuries/conditions. Mine is RA. I tried CBD and noticed enough difference to know when I skipped it!

 

I moved on to Cannabis - first time in my life at 70! Just missed the pot era - Never had anything against it. Friends smoked around me and even grew on my acreage -- I Just didn't need it UNTIL NOW!

 

THC allowed me to reduce pain to very low, sometimes non-existent levels -- it allowed me to stop ALL prescription and over the counter pain meds. I have become a big advocate!

 

I use a PAX3 vaporizer for dry flower, vape oil and take tablets -- It doesn't make me "high" (well it has 2x in a year) -- Don't know if this miracle herb will work for everyone but it has given me my life back!!

Edited July 9, 2019 by HornyRetiree

[edjames]

Sorry to hear of your problems.

I have been having shoulder and neck pain for several weeks.

Had a spinal MRI and thankfully the results were "Normal spinal cord" and some left foraminal narrowing C3-C4 and some right foraminal narrowing C5-6.

I have a followup with the neurologist but you know how difficult it is to get a doctor's appointment .

I have been having weekly adjustments with my new chiropractor. I've also been going to the massage therapist, at least twice a week, and things are beginning to improve, but I am not out of the woods yet.

Been applying a hot pack on the neck a couple of times a day/evening.

Been thinking of intense bourbon therapy!

 

My thought and prayers are with you..

[LivingnLA]

Please remember to get expert medical opinions from doctors with at least an awareness of current research. Our understanding of pain is vastly different today than even a decade ago. Further, imaging is not the end all be all of diagnostics. If we imaged the entire population, the vast majority of us would have degeneration or other completely normal physiological issues without any pain. Finding structural issues does not necessarily mean they are the root cause of the pain nor does it indicate surgery will fix things. Pain is an incredibly complex experience with myriad inputs, especially chronic pain.

 

Systematic Literature Review of Imaging Features of Spinal Degeneration in Asymptomatic Populations

Imaging findings of spine degeneration are present in high proportions of asymptomatic individuals, increasing with age. Many imaging-based degenerative features are likely part of normal aging and unassociated with pain. These imaging findings must be interpreted in the context of the patient's clinical condition.

 

Reconceptualising Pain According to Modern Pain Science

There are four key points:

(i) that pain does not provide a measure of the state of the tissues;

(ii) that pain is modulated by many factors from across somatic, psychological and social domains;

(iii) that the relationship between pain and the state of the tissues becomes less predictable as pain persists; and

(iv) that pain can be conceptualised as a conscious correlate of the implicit perception that tissue is in danger.

 

This science writer and MT has decades of experience and education in pain management and science. He's one of my favorites for staying up to date:

Painful Lessons

Vulnerability to Chronic Pain

Edited July 10, 2019 by LivingnLA

[LoveNDino]

Terri Gross has this great conversation with a bioethicist who had to deal with his opioid problem.

[+ honcho]

Terri Gross has this great conversation with a bioethicist who had to deal with his opioid problem.

 

I heard a replay of the conversation last night while driving 80 miles to record a musician for an upcoming album. The professor himself had gotten dependent on opiods as a consequence of having 6 operations to repair his foot which had been crushed in a motorcyle accident, and said that the pain of withdrawing was as bad (in different ways) as the pain from the surgeries.

 

It really was worth listening to ...

[jjkrkwood]

I heard a replay of the conversation last night while driving 80 miles to record a musician for an upcoming album. The professor himself had gotten dependent on opiods as a consequence of having 6 operations to repair his foot which had been crushed in a motorcyle accident, and said that the pain of withdrawing was as bad (in different ways) as the pain from the surgeries.

 

It really was worth listening to ...

 

All I have to add to everything that has been said is my experience with opioids and NSAIDS prior to any of my surgeries. My pain had gotten so bad that I was desperate for relief and nothing was helping. So I decided to mix and match diff meds in various quantities above and beyond what was prescribed. The pain lessened slightly, but I noticed my eyesight was funky... My vision keep "flashing" and I had tons of floaters... I called and was speaking to my doctor about it and I blacked out in my kitchen.... As I was unresponsive but still had the doctor on the line, THEY called the EMT's and they also had my emergency contact numbers, so my neighbor let them in, and I was rushed to the hospital... After a battery of tests and brain scans, the diagnosis was that I was "over-medicated".... Once I withdrew from my medicinal "cocktails", my sight and everything went back to normal, although the crushing pain was still with me, I then just stuck to what was prescribed while waiting for my surgeries, a period longer than usual because I also had had 2 heart stents put in prior, and there is then a mandatory 6 month waiting period before any surgical procedure can be performed. My Golden years have been a bit "tarnished"....

[BaronArtz]

FF- dearest, I somehow completely missed this thread. I am sorry to read what you are going through. My thoughts are with you … I hope and pray you will find a medically safe solution.

[stop]

I think you are improperly lumping together different patient types and attempting to prescribe a single treatment approach for all.

 

In someone who isn't experiencing chronic pain, limiting opiate treatment to three days and encouraging the patient to get up and exercise and move around makes perfect sense.

 

But to prescribe the same treatment to someone having a documented pathology and months or years of chronic pain would be seriously under treating that patient.

 

 

Sorry you are correct I was referencing acute pain regarding the 3 day supply etc. I was trying to make a point that many doctors don’t understand the implications of opioids and how to prescribe them.

 

But the comment on the increase in pain or as others have referenced as tolerance is medically documented and supported. They were not created for long term use yet doctors are prescribing them for that. Yes chronic pain is devestating and debilitating but a doctors reliance solely on opioids is not supported by evidence based medicine.

 

I will add what somebody else already said and wish I had said that you should consult with a doctor that is up to date in pain management and use of narcotics because the recent studies and evidence based medicine does not support how pain was handled even 5 years ago.

[Inkdnaija00]

I've used an iPad instead of a laptop since December, which definitely strains the neck more. I think I often slept on my stomach with head to one side. I think that's probably what caused it, along with just holding tension in my neck. I now sleep on my back, of course, but of course the horse is out of the barn.

 

Thanks for your last post about the scary MRI results not necessarily being paralyzing. That was my instinct too, but it's been 4 weeks of pain now. After so many "OMG, this is so bad", it's great to hear some hope.

 

If the nerve block works, even a little bit, that will give me time to think and consult. I'm consulting with an anesthesiologist tomorrow just to get a second opinion.

 

 

@Unicorn , Thank you. I may try acupuncture and am considering medical marijuana, which I've never tried.

 

Please look into it. Cbd oil

[Inkdnaija00]

FreshFluff, I'm so sorry to hear of your problems. But, instead of medical marijuana, have you considered CBD oil? CDB comes from hemp but does not have the "high" affects of marijuana. My nephew swears by it for his diabetic nephropathy. It comes in drops, beverages (here in Portland they're sold at the liquor stores), and lotions. SeeBeDee (https://seabedee.org/) is the site I've been looking at and they have a wide variety of products - especially one for joint and muscle pain.

 

Since Thanksgiving I've started developing some serious mobility issues. It started when I lost strength in my leg muscles and couldn't get out of a chair without extreme difficulty. Then my hands started shaking so bad I couldn't use a mouse or type. Then I got Foot Drop in my right foot. In short, that is similar to my foot being paralyzed from the ankle down. I now have a foot brace. I also had to stop using my sneakers and switched to my steel-toed work boots which provides more support for my ankles and a very non-flexible sole.

 

Ten days ago my physical therapist and 2 doctors (all seen on the same day) independently told me that I could no longer function with a cane and needed to use a walker. They also all told me to stop driving. So, I've been home-bound and have been working hard on the exercises from the physical therapist.

 

Like I said, my next option (in addition to continuing my medical tests / visits) is the CBD oil. From what I've read it has provided help and support for people with a variety of ailments.

 

Please, keep us advised on your progress. I'd explore all options before agreeing to surgery. I firmly believe in physical therapy, chiropractic massages, good diet, holistic options and similar things before surgery.

 

The best

[+ FreshFluff]

Pain flared again so I had to do an epidural. We'll see how much pain, if any, it relieves. If none or not enough, I have to try the riskier selective nerve block.

 

I'm going back next week so if I need another round, I either find an NYC anesthesiologist at the same level or fly back here.

Edited July 21, 2019 by FreshFluff

[+ FreshFluff]

So the steroid injection into my neck worked. The massive inflammation along the nerve (which was sensitive to the lightest tough) started going down the next day and improved further afterwards. But I feel like Charlie in Flowers for Algernon in that I know the effect is temporary.

 

For those who’ve had the injections, how long does the effect last?

 

I’m so afraid of going back to waiting out those long hours of acute pain before each dose of medication.

[Rudynate]

So the steroid injection into my neck worked. The massive inflammation along the nerve (which was sensitive to the lightest tough) started going down the next day and improved further afterwards. But I feel like Charlie in Flowers for Algernon in that I know the effect is temporary.

 

For those who’ve had the injections, how long does the effect last?

 

I’m so afraid of going back to waiting out those long hours of acute pain before each dose of medication.

 

 

The couple times I had an epidural injection that worked, I think the effect lasted for 3-4 weeks.

[+ sniper]

But now that the inflammation is down can you get back to Physical Therapy? They may be able to change your movement patterns so it doesn't flare up again as easily...

[LivingnLA]

So the steroid injection into my neck worked. The massive inflammation along the nerve (which was sensitive to the lightest tough) started going down the next day and improved further afterwards. But I feel like Charlie in Flowers for Algernon in that I know the effect is temporary.

 

For those who’ve had the injections, how long does the effect last?

 

I’m so afraid of going back to waiting out those long hours of acute pain before each dose of medication.

 

Now is the time to visit that doc we discussed. She may be able to help now that the inflammation is temporarily reduced.

[Rudynate]

I can report that I had a very positive experience with PRP (platelet-rich plasma) injections. It's not for everybody, and it is a fringey treatment that is not well thought of by the mainstream. 7 or 8 months ago I sustained an overuse injury to my right hip. It had become quite painful and was really starting to affect my activity level. I had started to avoid walking any more than short distances.

 

I'm not sure what the problem was but the symptoms were suggestive of a labral tear.

 

Kaiser was absolutely no help. They x-rayed the hip and found mild-to-moderate osteoarthritis, and basically decided that they were done. The arthritis made me a poor candidate for any kind of soft tissue repair but the arthritis also wasn't bad enough to justify a hip replacement ( which I never would have gone for anyway). That was all conventional medicine had to offer.

 

I have known people who had excellent results from prolotherapy for joint tendon and ligament problems. They inject an irritant at the site of injury, which provokes an inflammatory response. The inflammatory response jump-starts a healing process in cartilaginous tissues like joints and ligaments, that heal slowly or not at all because they are not well supplied with blood.

 

I went to an osteopath who does prolotherapy and he thought the best type of prolotherapy for my injury was the PRP injections. They draw some of your blood (about half a unit) separate the platelets and inject the platelets at the site of injury. The platelets provoke a strong inflammatory response which helps to initiate the healing process. I was 90% convinced it would work and 10% skeptical. He thought a single treatment would take care of my problem.

 

The procedure itself is no picnic. He injected platelets at 10 different sites, under ultrasound guidance. He warned me in advance that they were going to feel like hot lead - and they did. It took about an hour. I was in serious pain for about 4 days, but then things started to feel much better. After about a week, the symptoms from the injury started to improve. It has been a month since I had the treatment - the pain from the original injury has decreased at least 60%. My limp is almost gone. Secondary to the injury I had developed pain in my knee, ankle and tibia. These are completely gone. I'm a believer.

 

 

It was expensive - $1500.00, not covered by insurance. But, so far, I think it is was money well spent.

[LivingnLA]

I can report that I had a very positive experience with PRP (platelet-rich plasma) injections. It's not for everybody, and it is a fringey treatment that is not well thought of by the mainstream. 7 or 8 months ago I sustained an overuse injury to my right hip. It had become quite painful and was really starting to affect my activity level. I had started to avoid walking any more than short distances.

 

I'm not sure what the problem was but the symptoms were suggestive of a labral tear.

 

Kaiser was absolutely no help. They x-rayed the hip and found mild-to-moderate osteoarthritis, and basically decided that they were done. The arthritis made me a poor candidate for any kind of soft tissue repair but the arthritis also wasn't bad enough to justify a hip replacement ( which I never would have gone for anyway). That was all conventional medicine had to offer.

 

I have known people who had excellent results from prolotherapy for joint tendon and ligament problems. They inject an irritant at the site of injury, which provokes an inflammatory response. The inflammatory response jump-starts a healing process in cartilaginous tissues like joints and ligaments, that heal slowly or not at all because they are not well supplied with blood.

 

I went to an osteopath who does prolotherapy and he thought the best type of prolotherapy for my injury was the PRP injections. They draw some of your blood (about half a unit) separate the platelets and inject the platelets at the site of injury. The platelets provoke a strong inflammatory response which helps to initiate the healing process. I was 90% convinced it would work and 10% skeptical. He thought a single treatment would take care of my problem.

 

The procedure itself is no picnic. He injected platelets at 10 different sites, under ultrasound guidance. He warned me in advance that they were going to feel like hot lead - and they did. It took about an hour. I was in serious pain for about 4 days, but then things started to feel much better. After about a week, the symptoms from the injury started to improve. It has been a month since I had the treatment - the pain from the original injury has decreased at least 60%. My limp is almost gone. Secondary to the injury I had developed pain in my knee, ankle and tibia. These are completely gone. I'm a believer.

 

 

It was expensive - $1500.00, not covered by insurance. But, so far, I think it is was money well spent.

 

Technically, since you went with PRP, that's called BRI (Biologic Repair Injection), which is related but different from prolotheraphy. But, I'm glad it worked for you. The research for its efficacy is very limited, though what good research we have seems to suggest it's mostly useful for overuse issues in the appendicular skeleton and its associated connective tissues. I'm not sure I would recommend it for cervical issues, but every case is different and perhaps the right doctor may have good outcomes.

 

http://aaomed.org/AAOM/files/ccLibraryFiles/Filename/000000000116/Research Summary - Updated Feb 2014.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4938120/