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

[Rudynate]

I got a second opinion from an anesthesiologist today. His spin was slightly more positive. He told me, yeah, this usually happens later, but this case is not two standard deviations out. He sees younger people all the time. Recommended that I try prednisone and traction first, then do the injections if that doesn't work. . Also, I was upfront and asked him, "We're talking about my neck here. I want to go to the best person nationally. If Bill Gates had this problem, where would he go?" He gave me both local and national recs. He also agreed with @sniper and said, "The fact that the MRI looks scary doesn't mean anything. Your right side looks bad too and it's unaffected." Even said that while he does the injections one way (translaminally), it might make sense to take the slight additional risk and do it the riskier but more effective way transforaminally (from the side). I'm trying to decide which is less scary: Oral prednisone (acne/weight gain, yuck) or the nerve block injections into the neck part of my spine.

 

Thank you @Rudynate @playwrestler @WilliamM @Reg

 

Rudynate, You get it. If a wheelchair would help, I would do it. The weird thing is that walking around is often better than sitting up on a straight-backed chair. Yes, whenever I can travel back home, I will definitely get a flat-bed seat. I was in real trouble on a flight recently (due to the first issue) and sat there, looking at the flight attendant, wondering whether I should have the pilot ask an EMS crew to meet me at the gate. I decided that they'd look askance at that for anything that wasn't life threatening and took an Uber to the ER from SFO.

 

William and Charlie, thank you. Truly. @not2rowdy Thanks, I will take a look at the US News list.

 

@OneFinger, Again, I'm glad you're working hard on the PT. I hope it works out. The physiatrist recommended CBD too. I'll look into it. The second guy was like, "Smoking marijuana isn't going to help you."

 

@Chris1976 , I know exactly what you mean about the pain. I am thinking of you and hope you find relief soon.

 

@playwrestler , I'm glad the PT worked out for you! That is a great outcome.

 

I know there are several people I have forgotten but I am a little tired and prepping for surgery tomorrow. About to take a second dose of a drug that caused serious abdominal pain but stiffens up the organ to avoid puncture. Good thing I'm on pain pills already.

 

 

That's true, you can't let the imaging freak you out. My spine films show one or both of disc disease and joint disease at nearly every level of my spine. Yet, I feel fine.

[Rudynate]

I got a second opinion from an anesthesiologist today. His spin was slightly more positive. He told me, yeah, this usually happens later, but this case is not two standard deviations out. He sees younger people all the time. Recommended that I try prednisone and traction first, then do the injections if that doesn't work. . Also, I was upfront and asked him, "We're talking about my neck here. I want to go to the best person nationally. If Bill Gates had this problem, where would he go?" He gave me both local and national recs. He also agreed with @sniper and said, "The fact that the MRI looks scary doesn't mean anything. Your right side looks bad too and it's unaffected." Even said that while he does the injections one way (translaminally), it might make sense to take the slight additional risk and do it the riskier but more effective way transforaminally (from the side). I'm trying to decide which is less scary: Oral prednisone (acne/weight gain, yuck) or the nerve block injections into the neck part of my spine.

 

Thank you @Rudynate @playwrestler @WilliamM @Reg

 

Rudynate, You get it. If a wheelchair would help, I would do it. The weird thing is that walking around is often better than sitting up on a straight-backed chair. Yes, whenever I can travel back home, I will definitely get a flat-bed seat. I was in real trouble on a flight recently (due to the first issue) and sat there, looking at the flight attendant, wondering whether I should have the pilot ask an EMS crew to meet me at the gate. I decided that they'd look askance at that for anything that wasn't life threatening and took an Uber to the ER from SFO.

 

William and Charlie, thank you. Truly. @not2rowdy Thanks, I will take a look at the US News list.

 

@OneFinger, Again, I'm glad you're working hard on the PT. I hope it works out. The physiatrist recommended CBD too. I'll look into it. The second guy was like, "Smoking marijuana isn't going to help you."

 

@Chris1976 , I know exactly what you mean about the pain. I am thinking of you and hope you find relief soon.

 

@playwrestler , I'm glad the PT worked out for you! That is a great outcome.

 

I know there are several people I have forgotten but I am a little tired and prepping for surgery tomorrow. About to take a second dose of a drug that caused serious abdominal pain but stiffens up the organ to avoid puncture. Good thing I'm on pain pills already.

 

 

That's true, you can't let the imaging freak you out. My spine films show one or both of disc disease and joint disease at nearly every level of my spine. Yet, I feel fine.

[Chris1976]

I was told most have some sort of disk disease some more advanced than others. a physical therapist told me the car wreck in 98 had a lot to do with mine plus being a licensed massage therapist for 20 years he and the neurologist felt I did it for too long. add in bad body mechanics. massage does a lot of pulling on your chest which can overdevelop it which can pull on the back. I've never once asked for any pain meds because the moment you do there's always this one doctor ready to label you. once I went too the emergency room blood pressure 200 over 110 and some snarky female doctor told me they don't treat chronic pain. one doctor told me I was too nice and nice people die and that I needed to learn to be a bitch lol his exact words. normal not wanting to deal with doctors and scared of surgery I self medicate with the use of medical cannabis and kratom and a once a month visit to a chiropractor. Also got me a little dog. the love of an animal can do wonders

[Chris1976]

I was told most have some sort of disk disease some more advanced than others. a physical therapist told me the car wreck in 98 had a lot to do with mine plus being a licensed massage therapist for 20 years he and the neurologist felt I did it for too long. add in bad body mechanics. massage does a lot of pulling on your chest which can overdevelop it which can pull on the back. I've never once asked for any pain meds because the moment you do there's always this one doctor ready to label you. once I went too the emergency room blood pressure 200 over 110 and some snarky female doctor told me they don't treat chronic pain. one doctor told me I was too nice and nice people die and that I needed to learn to be a bitch lol his exact words. normal not wanting to deal with doctors and scared of surgery I self medicate with the use of medical cannabis and kratom and a once a month visit to a chiropractor. Also got me a little dog. the love of an animal can do wonders

[LivingnLA]

If the entire population were imaged, a large majority would be found to have disc issues even though they have no pain or loss of function. Imaging is frequently not helpful in chronic pain situations because the pain is often caused by soft tissue issues. An expert medical massage therapist is often much more effective at reducing or even eliminating pain compared to pain medications or surgery.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4464797/

Edited May 25, 2019 by LivingnLA

[+ honcho]

I wish there was something I could do or say from hundreds of miles away to be effectively helpful; good luck on your proceedure tomorrow.

 

Sincerely,

 

Keith.

[Rudynate]

If the entire population was imaged, a large majority would be found to have disc issues even though they have no pain or loss of function. Imaging is frequently not helpful in chronic pain situations because the pain is often caused by soft tissue issues. An expert medical massage therapist is often much more effective at reducing or even eliminating pain compared to pain medications or surgery.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4464797/

 

 

 

I had an amazing result from a guy who did myofascial release.

[LivingnLA]

I had an amazing result from a guy who did myofascial release.

 

Some myofascial techniques can be very effective. Each case is different and requires different things to see results. I'm glad you had such a positive beneficial experience.

[Mjonis]

Sorry to hear about your situation. Nerve pain is atrocious.

 

I would strongly suggest trying to find the most experienced surgeon for a second opinion.

 

I'd inquire also as to nerve pain meds such as gabapentin or lyrica. They unfortunately take a week or more to start kicking in. Opioids can help but generally don't do well with nerve pain.

 

I had two very rare nerve tumors on my brachial plexus. I had to go on gabapentin for about 4 months and then had a reaction to it, but by that time I was able to get two more second opinions, including a doctor outside my network. At the time he was only one of two top neurosurgeons in New York that dealt with these. Fortunately the surgery was successful with minor nerve damage, so I can understand any trepidation in having surgery.

 

Thoughts and prayers are with you.

[liubit]

Best wishes for your procedure, @FreshFluff.

[+ FreshFluff]

Out of surgery. On my way home with a fall risk bracelet.

 

[instudiocity]

Oral prednisone (acne/weight gain, yuck).

Not to be a smart-ass, but prednisone doesn't cause weight gain - it turns off your insulin response to eating so you never feel full. Just monitor your food intake and learn to overlook your hunger and you won't gain weight. It's all in your mind and your metabolism.

[+ Gar1eth]

Out of surgery. On my way home with a fall risk bracelet.

 

 

I totally missed this thread. I'm hoping your recovery is going well!!

 

As for neuropathic pain-about 5 years ago when I had no health insurance I developed this burning pain down my upper arm. The pain was probably a 6 to occ 7 out of 10. This had been preceded by difficulty turning my head -which I had noticed when trying to look behind me while backing up/parking in the car.

 

Because of the no insurance, I went to one of those clinics in the poor side of town. He did regular xrays. As I remember the disc space between some of the vertebrae in my neck looked almost non-existent. I think he gave me some Flexeril or some other non-narcotic pain medication. The pain remained the same or was worse. I did some reading on spondylitis. It said that steroids hadn't been proven to work by studies but were often tried. I went back to the clinic, and he prescribed me some prednisone. After months of increasing daily pain, I was pretty much pain free after 2 to 3 days.

 

Gman

[+ FreshFluff]

I just want to thank everyone for the responses and the support. I've told a couple of people IRL but I'm not the type who posts this stuff on FB. So your support means everything to me. Will respond individually as soon as I can.

[Walker1]

I just want to thank everyone for the responses and the support. I've told a couple of people IRL but I'm not the type who posts this stuff on FB. So your support means everything to me. Will respond individually as soon as I can.

Hope you get well soon. These types of chronic stuff often just go on and then out of the blue some doctor -after years and years of treatments-suggests a small thing and you are back to normal. Weird stuff.

[+ Reg]

Out of surgery.

 

I wish you strength and healing.

[+ easygoingpal]

I just want to thank everyone for the responses and the support. I've told a couple of people IRL but I'm not the type who posts this stuff on FB. So your support means everything to me. Will respond individually as soon as I can.

Glad to know that you received the support that you were seeking... A lot of people shared meaningful stories that I hope have helped you and I know have helped me better understand pain and how to deal with it. Wishing you health, joy, and peace... Cheers!

[+ FreshFluff]

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.)

Edited May 28, 2019 by FreshFluff

[gallahadesquire]

When you've totally apparently misunderstood the pain scale:

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

“Three of America’s greatest hospitals”

 

Quite the slight to Beth Israel Deaconess.

[+ FreshFluff]

Because of the no insurance, I went to one of those clinics in the poor side of town. He did regular xrays. As I remember the disc space between some of the vertebrae in my neck looked almost non-existent. I think he gave me some Flexeril or some other non-narcotic pain medication. The pain remained the same or was worse. I did some reading on spondylitis. It said that steroids hadn't been proven to work by studies but were often tried. I went back to the clinic, and he prescribed me some prednisone. After months of increasing daily pain, I was pretty much pain free after 2 to 3 days.

 

Gman

 

Thatnks for thisreply! Thats exactly what my imaging showed and I have the same pain. What a great outcome on the Prednisone. How long was your course and at what dose? Has the pain returned at some point!?

[+ Gar1eth]

I totally missed this thread. I'm hoping your recovery is going well!!

 

As for neuropathic pain-about 5 years ago when I had no health insurance I developed this burning pain down my upper arm. The pain was probably a 6 to occ 7 out of 10. This had been preceded by difficulty turning my head -which I had noticed when trying to look behind me while backing up/parking in the car.

 

Because of the no insurance, I went to one of those clinics in the poor side of town. He did regular xrays. As I remember the disc space between some of the vertebrae in my neck looked almost non-existent. I think he gave me some Flexeril or some other non-narcotic pain medication. The pain remained the same or was worse. I did some reading on spondylitis. It said that steroids hadn't been proven to work by studies but were often tried. I went back to the clinic, and he prescribed me some prednisone. After months of increasing daily pain, I was pretty much pain free after 2 to 3 days.

 

Gman

Thatnks for thisreply! Thats exactly what my imaging showed and I have the same pain. What a great outcome on the Prednisone. How long was your course and at what dose? Has the pain returned at some point!?

 

This is close to 5 or 6 years ago. So I'm struggling to remember. And there it goes-I can't. But going by prior experience with prednisone I was probably on about 60 mg (this is often weight based and as we know I'm a big guy. So smaller people often receive smaller doses.) for a week and then reduced doses over the next 4 days until I was off.

 

The pain went away after a few days. And so far I've never had that pain again or as much trouble turning my head. I do have some problems turning my head. But I don't know if any of that is due to my Myasthenia Gravis or not.

 

Gman

[+ quoththeraven]

Sorry I haven't been around to see this sooner. I wish you the best. I have chronic pain, but it's not unbearable, just bad enough to be annoying and distracting. Even at that level, it takes up far more of my brain than it deserves.

[Guy Fawkes]

Try CBD. When the pain is at it's worst, it takes the edge off me. Ease into it and find out if and how much works for you.

 

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.

[+ FreshFluff]

Try CBD. When the pain is at it's worst, it takes the edge off me. Ease into it and find out if and how much works for you.

 

This is what I’m thinking. I spent my childhood being brainwashed against mj, and the doctors so far have kind of scoffed at the idea. But at this point, it makes sense to try everything.

 

Any recs for good high CBD strains? Would prefer edibles or capsules if poss.

[gallahadesquire]

This is what I’m thinking. I spent my childhood being brainwashed against mj, and the doctors so far have kind of scoffed at the idea. But at this point, it makes sense to try everything.

 

Any recs for good high CBD strains? Would prefer edibles or capsules if poss.

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.