Chronic Back Pain for Years

Posted by jlfisher56 @jlfisher56, May 2, 2017

6 back surgeries (extensive cervical and lumbar fusions) with neurological complications. Left with chronic pain. Accident happened in Nursing career 1992 and worked with first fusions until 1999 (failed fusions). At my age, and as a former nurse educator, I never wanted to had to rely on medication/s for the severe pain. Having thoroughly exhausted exploring sites using non-pharmaceutical methods, using psychological methods, biofeedback, trying to accept my limitations, i.e., I still believe somewhere…out there…is hope. The strong medicine has caused gastroparesis, further complicating my health problems. They are too numerous to write and I will not focus on them. I am looking for “help” and guidance. If I can be of assistance to anyone throughout their trials, (perhaps similar to some of what I have gone through), I will.

@gailb

@grandmar

First, I'm so sorry that you are experiencing this pain and suffering after your previous surgery for your cervical spine. Falling is a dangerous thing for all of us as we age, and even more so since your recent successful surgery. At the risk of repeating myself, I would like to suggest that you try ART (Active Release Technique) before you opt for another surgery. I know ART has prevented for over a year my needing major back surgery for my L4. My practitioner has worked on various other debilitating pains in my left shoulder, my TMJ, and my cervical radiculopathy over the past few months. Every time it has worked to relieve the pain. I see him this morning for the second treatment on my lumbar area since I awoke with acute pain and inability to walk last Thursday. I am much better after the first treatment and have been able to walk for limited amounts of time since the Friday treatment.

This is why I would like to see you check out ART treatments before the invasive surgery. Please let me know how you feel about this option. You are facing difficult times right now. I'm glad you have this forum to connect with others who are having chronic pain as well. Your contributions and expressions of support for others here are so important for so many. I hope you find relief for your pain.

Gailb
Volunteer Mentor

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Thank you for your advice.
I am very particular when it comes to the docs I see.
I will travel 2 hours to see someone.
I do VERY thorough research to find what I consider the best based of peer and patient reviews, education, fellowships, training, etc.
I do get my therapeutic massages and that helps, even though it is short term.
I have to see her more often.
Right now I go every 3rd week for 90 minutes.
I think I am going to go every 2nd week for 60 minutes (90 min. would be too expensive, so often).

Thanks again!
Ronnie

REPLY
@grandmar

Hi all!!
It's been a bit of time since I wrote.
For those of you who are new to the group, I also have chronic pain.
After years of shots, procedures, etc. I had surgery on my C5/6 spine.
I was getting horrible headaches every day that woke me up.
It seemed the surgery worked (done in late Feb.).
After surgery, I had only 2 mild headaches, then soon none.
At about week 10, I fell twice. Thank you lumbar! (another story)
Within days, my headaches came back, not daily, however.
At week 12, when I went back for my last cervical check-up,
My surgeon could not help but see there was something going on since I was now walking with a cane (advice from my physical therapist).
Now, the headaches are back fast and furious on a daily basis.
I now awake each and every morning (anywhere from 1am – 5am) to a violent headache that only stops when I get up into a sitting position.
It is usually gone within a 1/2 hour of getting up, sometimes sooner.
I am so upset with this!!!!
I see the surgeon a week from tomorrow.
That appointment was suppose to be about the surgery for my L3/4.
Headache or the ability to walk?????????
I was once told that headaches are not an approved reason for cervical spine surgery.
I never pursued it since the headaches were pretty much gone after surgery.
I don't know what is going to happen now?????????????????

Stay tuned for the next episode………..
To walk, or not to walk, that is the question???????
To have headaches (and sleep) or not to have headaches, that is the 2nd question???????

Wishing you a pain free day,
Ronnie (GRANDMAr)

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@grandmar Ronnie,
I heard about it when I had a injection in Hawaii. (BTW-your doctor cannot call into another state to order a Rx for you) A patient next to me in recovery had an injection. His reaction was an incredible headache, worse than a migraine was how he described it. I remember the doctor saying he may have a spinal leak. The patient was taken back to the OR and I was discharged so I don't know the outcome. I have read that a possible fix is a blood patch, using your own blood.
I figured it doesn't hurt to ask the doctor. Hope you are feeling better soon. Have a great day!
Jen

REPLY
@grandmar

Hi all!!
It's been a bit of time since I wrote.
For those of you who are new to the group, I also have chronic pain.
After years of shots, procedures, etc. I had surgery on my C5/6 spine.
I was getting horrible headaches every day that woke me up.
It seemed the surgery worked (done in late Feb.).
After surgery, I had only 2 mild headaches, then soon none.
At about week 10, I fell twice. Thank you lumbar! (another story)
Within days, my headaches came back, not daily, however.
At week 12, when I went back for my last cervical check-up,
My surgeon could not help but see there was something going on since I was now walking with a cane (advice from my physical therapist).
Now, the headaches are back fast and furious on a daily basis.
I now awake each and every morning (anywhere from 1am – 5am) to a violent headache that only stops when I get up into a sitting position.
It is usually gone within a 1/2 hour of getting up, sometimes sooner.
I am so upset with this!!!!
I see the surgeon a week from tomorrow.
That appointment was suppose to be about the surgery for my L3/4.
Headache or the ability to walk?????????
I was once told that headaches are not an approved reason for cervical spine surgery.
I never pursued it since the headaches were pretty much gone after surgery.
I don't know what is going to happen now?????????????????

Stay tuned for the next episode………..
To walk, or not to walk, that is the question???????
To have headaches (and sleep) or not to have headaches, that is the 2nd question???????

Wishing you a pain free day,
Ronnie (GRANDMAr)

Jump to this post

@Gail Your welcome Tramadol 50 works where the Tylenol in it doesn't for some reason the Tramadol isn't as effective for me just plain Tramadol. I just received an email from a Bill at TM test wanting to know if I still wanted to be tested did you before you where? They gave an ABC report about the testing also.Did you receive this information?

REPLY

@gailb I see the pain specialist/neurologist in August. I will ask him about the Tramadol. Out of desperation I had botox injections from DDS because of TMJ. Not FDA approved for TMJ and set me back $1200. Trigger point injections in several areas as the clinching/grinding had my upper back (scoliosis) in a lot of pain. I have a splint and having it built back up has not helped. All docs around are fearful of prescribing anything stronger than OTC's. Hopefully this fear will pass. I don't have a history of substance abuse. The injections in my jaws has helped some. The whole body is connected!!! No relief from the other injections, but it can take 3 to 10 days to notice any change. Sure hope I did not throw that money a way.
Anyone else have experience with botox injections?

REPLY
@gailb

For those in the Chronic pain thread who have Fibromialgia, I have copied a message I received from the EpicGenetics group on how to participate in their study. They did send me the blood test kit and had a phlebotomist come to my home to draw my blood and FED Ex the kit back. It was super easy and cost nothing! Also, their website contains excellent information about the work they are doing and the study they are doing with UCLA, and other partners.

"Give our NEW, Easy Telephone Application your name, phone, and email address, and we’ll call you to complete your application over the phone—at your convenience*. Once completed, we will verify your insurance coverage and connect with your healthcare provider—we can even arrange for your blood sample to be taken. EpicGenetics is committed to real answers that will lead to real treatment options for those who have Fibromyalgia. Application Assist is just another way we’re making things better for the FM Community."

CONTACT:
https://fmtest.com or call: 310-277-4600, 9:30 to 5 pm PDT, M-F.

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@cognac thanks as I was wondering about the validity of some of these things. Can get sticky with insurance and giving out personal information…dubiuos.

REPLY
@gailb

For those in the Chronic pain thread who have Fibromialgia, I have copied a message I received from the EpicGenetics group on how to participate in their study. They did send me the blood test kit and had a phlebotomist come to my home to draw my blood and FED Ex the kit back. It was super easy and cost nothing! Also, their website contains excellent information about the work they are doing and the study they are doing with UCLA, and other partners.

"Give our NEW, Easy Telephone Application your name, phone, and email address, and we’ll call you to complete your application over the phone—at your convenience*. Once completed, we will verify your insurance coverage and connect with your healthcare provider—we can even arrange for your blood sample to be taken. EpicGenetics is committed to real answers that will lead to real treatment options for those who have Fibromyalgia. Application Assist is just another way we’re making things better for the FM Community."

CONTACT:
https://fmtest.com or call: 310-277-4600, 9:30 to 5 pm PDT, M-F.

Jump to this post

@gailb@grandmar here's a link for the fibromyalgia report from ABC http://www.wcub.com/article/mass General research-fibromyalgia -,vaccine10364683

REPLY
@parus

@gailb I see the pain specialist/neurologist in August. I will ask him about the Tramadol. Out of desperation I had botox injections from DDS because of TMJ. Not FDA approved for TMJ and set me back $1200. Trigger point injections in several areas as the clinching/grinding had my upper back (scoliosis) in a lot of pain. I have a splint and having it built back up has not helped. All docs around are fearful of prescribing anything stronger than OTC's. Hopefully this fear will pass. I don't have a history of substance abuse. The injections in my jaws has helped some. The whole body is connected!!! No relief from the other injections, but it can take 3 to 10 days to notice any change. Sure hope I did not throw that money a way.
Anyone else have experience with botox injections?

Jump to this post

@parus hi haven't heard from you ,this is lioness Linda didn't you say you also have fibromyalgia?A website http://www.fibromyalgia.com says TJM also they relate it to fibro,Post above about a test for fibro blood test now which they never had gailb talks about it then I found info that it was on ABC I called and am going to take it.

REPLY
@grandmar

Hi all!!
It's been a bit of time since I wrote.
For those of you who are new to the group, I also have chronic pain.
After years of shots, procedures, etc. I had surgery on my C5/6 spine.
I was getting horrible headaches every day that woke me up.
It seemed the surgery worked (done in late Feb.).
After surgery, I had only 2 mild headaches, then soon none.
At about week 10, I fell twice. Thank you lumbar! (another story)
Within days, my headaches came back, not daily, however.
At week 12, when I went back for my last cervical check-up,
My surgeon could not help but see there was something going on since I was now walking with a cane (advice from my physical therapist).
Now, the headaches are back fast and furious on a daily basis.
I now awake each and every morning (anywhere from 1am – 5am) to a violent headache that only stops when I get up into a sitting position.
It is usually gone within a 1/2 hour of getting up, sometimes sooner.
I am so upset with this!!!!
I see the surgeon a week from tomorrow.
That appointment was suppose to be about the surgery for my L3/4.
Headache or the ability to walk?????????
I was once told that headaches are not an approved reason for cervical spine surgery.
I never pursued it since the headaches were pretty much gone after surgery.
I don't know what is going to happen now?????????????????

Stay tuned for the next episode………..
To walk, or not to walk, that is the question???????
To have headaches (and sleep) or not to have headaches, that is the 2nd question???????

Wishing you a pain free day,
Ronnie (GRANDMAr)

Jump to this post

@lioness

Yes, they called me first and told me they were mailing the blood test kit. Then I called them to find out where I could go to get the blood draw. That's when they said they would come to my house and do it. I didn't know about the ABC story, so I'll look it up. I haven't been diagnosed with fibromyalgia in the past, but my sister has it and I have wondered for years if I do. I didn't want the stigma of it when everyone was questioning whether or not it was a real thing, so I never asked my docs about it. I figured I would just tough it out.

Gailb
Volunteer Mentor

REPLY
@grandmar

Hi all!!
It's been a bit of time since I wrote.
For those of you who are new to the group, I also have chronic pain.
After years of shots, procedures, etc. I had surgery on my C5/6 spine.
I was getting horrible headaches every day that woke me up.
It seemed the surgery worked (done in late Feb.).
After surgery, I had only 2 mild headaches, then soon none.
At about week 10, I fell twice. Thank you lumbar! (another story)
Within days, my headaches came back, not daily, however.
At week 12, when I went back for my last cervical check-up,
My surgeon could not help but see there was something going on since I was now walking with a cane (advice from my physical therapist).
Now, the headaches are back fast and furious on a daily basis.
I now awake each and every morning (anywhere from 1am – 5am) to a violent headache that only stops when I get up into a sitting position.
It is usually gone within a 1/2 hour of getting up, sometimes sooner.
I am so upset with this!!!!
I see the surgeon a week from tomorrow.
That appointment was suppose to be about the surgery for my L3/4.
Headache or the ability to walk?????????
I was once told that headaches are not an approved reason for cervical spine surgery.
I never pursued it since the headaches were pretty much gone after surgery.
I don't know what is going to happen now?????????????????

Stay tuned for the next episode………..
To walk, or not to walk, that is the question???????
To have headaches (and sleep) or not to have headaches, that is the 2nd question???????

Wishing you a pain free day,
Ronnie (GRANDMAr)

Jump to this post

@Gail o.k. Then I,'ll get the blood test Dr.Visual my rheumatologist in Pa.did the trigger points I had 11of 18 but want to confirm it now so thanks Linda

REPLY
@parus

@gailb I see the pain specialist/neurologist in August. I will ask him about the Tramadol. Out of desperation I had botox injections from DDS because of TMJ. Not FDA approved for TMJ and set me back $1200. Trigger point injections in several areas as the clinching/grinding had my upper back (scoliosis) in a lot of pain. I have a splint and having it built back up has not helped. All docs around are fearful of prescribing anything stronger than OTC's. Hopefully this fear will pass. I don't have a history of substance abuse. The injections in my jaws has helped some. The whole body is connected!!! No relief from the other injections, but it can take 3 to 10 days to notice any change. Sure hope I did not throw that money a way.
Anyone else have experience with botox injections?

Jump to this post

I’ve had Botox injections for neuralgia pain in my head. For me it did not work. But, I know people that it worked for and they swear by it, returning every 3 months for repeat injections.
I have 3 nerve block injections for my pain done every 3 months. Because they work for me I swear by them.

REPLY
@grandmar

Hi all!!
It's been a bit of time since I wrote.
For those of you who are new to the group, I also have chronic pain.
After years of shots, procedures, etc. I had surgery on my C5/6 spine.
I was getting horrible headaches every day that woke me up.
It seemed the surgery worked (done in late Feb.).
After surgery, I had only 2 mild headaches, then soon none.
At about week 10, I fell twice. Thank you lumbar! (another story)
Within days, my headaches came back, not daily, however.
At week 12, when I went back for my last cervical check-up,
My surgeon could not help but see there was something going on since I was now walking with a cane (advice from my physical therapist).
Now, the headaches are back fast and furious on a daily basis.
I now awake each and every morning (anywhere from 1am – 5am) to a violent headache that only stops when I get up into a sitting position.
It is usually gone within a 1/2 hour of getting up, sometimes sooner.
I am so upset with this!!!!
I see the surgeon a week from tomorrow.
That appointment was suppose to be about the surgery for my L3/4.
Headache or the ability to walk?????????
I was once told that headaches are not an approved reason for cervical spine surgery.
I never pursued it since the headaches were pretty much gone after surgery.
I don't know what is going to happen now?????????????????

Stay tuned for the next episode………..
To walk, or not to walk, that is the question???????
To have headaches (and sleep) or not to have headaches, that is the 2nd question???????

Wishing you a pain free day,
Ronnie (GRANDMAr)

Jump to this post

Hi Jen,
I actually looked into the spinal leak and the symptoms are polar opposites.
You are worse standing up or in a sitting position and better when you lay flat.
For me, I am worse when I lay down and better in a sitting position.
But during my research, I did find something else that sounded very similar.
The headache presents similarly.
It is called occipital neuralgia.
I will check both out with my doc.
Funny, once when I was in Hawaii, I needed a prescription for a med (can't remember which). My doc called it in with no trouble.
Possibly the regs have changed.

REPLY
@parus

@gailb I see the pain specialist/neurologist in August. I will ask him about the Tramadol. Out of desperation I had botox injections from DDS because of TMJ. Not FDA approved for TMJ and set me back $1200. Trigger point injections in several areas as the clinching/grinding had my upper back (scoliosis) in a lot of pain. I have a splint and having it built back up has not helped. All docs around are fearful of prescribing anything stronger than OTC's. Hopefully this fear will pass. I don't have a history of substance abuse. The injections in my jaws has helped some. The whole body is connected!!! No relief from the other injections, but it can take 3 to 10 days to notice any change. Sure hope I did not throw that money a way.
Anyone else have experience with botox injections?

Jump to this post

@lioness yes, I have fibromyalgia

REPLY
@parus

@gailb I see the pain specialist/neurologist in August. I will ask him about the Tramadol. Out of desperation I had botox injections from DDS because of TMJ. Not FDA approved for TMJ and set me back $1200. Trigger point injections in several areas as the clinching/grinding had my upper back (scoliosis) in a lot of pain. I have a splint and having it built back up has not helped. All docs around are fearful of prescribing anything stronger than OTC's. Hopefully this fear will pass. I don't have a history of substance abuse. The injections in my jaws has helped some. The whole body is connected!!! No relief from the other injections, but it can take 3 to 10 days to notice any change. Sure hope I did not throw that money a way.
Anyone else have experience with botox injections?

Jump to this post

@parus have you done any new paintings? You have quite a gift Love to see anything you,he done lately I know when you feel rotten it's tough so hope you start to feel better does your Dr. Know what's causing your head pain?feel better

REPLY
@parus

@gailb I see the pain specialist/neurologist in August. I will ask him about the Tramadol. Out of desperation I had botox injections from DDS because of TMJ. Not FDA approved for TMJ and set me back $1200. Trigger point injections in several areas as the clinching/grinding had my upper back (scoliosis) in a lot of pain. I have a splint and having it built back up has not helped. All docs around are fearful of prescribing anything stronger than OTC's. Hopefully this fear will pass. I don't have a history of substance abuse. The injections in my jaws has helped some. The whole body is connected!!! No relief from the other injections, but it can take 3 to 10 days to notice any change. Sure hope I did not throw that money a way.
Anyone else have experience with botox injections?

Jump to this post

@parus,@grandmar I found another website talks about fibro and fatigue http://www.fedupwithfatigue.com

REPLY
@parus

@gailb I see the pain specialist/neurologist in August. I will ask him about the Tramadol. Out of desperation I had botox injections from DDS because of TMJ. Not FDA approved for TMJ and set me back $1200. Trigger point injections in several areas as the clinching/grinding had my upper back (scoliosis) in a lot of pain. I have a splint and having it built back up has not helped. All docs around are fearful of prescribing anything stronger than OTC's. Hopefully this fear will pass. I don't have a history of substance abuse. The injections in my jaws has helped some. The whole body is connected!!! No relief from the other injections, but it can take 3 to 10 days to notice any change. Sure hope I did not throw that money a way.
Anyone else have experience with botox injections?

Jump to this post

Thanks for the info!!!
Ronnie

REPLY
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