jlfisher56
@jlfisher56
@jlfisher56
Posts: 64
Joined: May 02, 2017
Chronic Back Pain for Years
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.
Liked by Jen, Volunteer Mentor, marychapman, Lmnl09, lioness ... see all
Jen, Volunteer Mentor
@sandytoes14
@sandytoes14
Posts: 596
Joined: Mar 22, 2016
The support and encouragement i have gotten here has been just unbelievable!! I have never gotten SUCH CARING even close to this!!! I can't stress that enough!!
Sadly, I have severely re-hurt my back over and over these past few years especially, because my doctor told me I had absolutely no limits on what I could do. I have leaned over many times to pick up heavy things, only to be "frozen" in gut-wrenching pain, and not able to straighten back up for at least a week. I really thought my doctor knew best.
I sadly have no family near by who can help. I live alone (my fiance died unexpectedly several years ago due to an unknown congenital heart condition) and must do everything myself. My doctor always said that it was OK.
I have no other health insurance, or recourse.
One hard and ugly truth I have learned over and over about the VA hospital here.. if you slight a certain doctor, not follow what he says or try to turn him in, you PAY for it a hundred times over. I hesitate to even mention specific circumstances as most people would probably not even believe that any doctor could EVER stoop to or dare to do such things.
The more I try to complain or try to stand up for myself in even the smallest way, the more certain doctors can (and do!) get back at you. It becomes so brutal and traumatizing, over and over and over. But it is REALITY.
It makes it worse, I believe, that I am a woman, as certain male doctors will shamelessly and openly harass and cruelly sexually abuse women patients, with no fear of reprimand whatsoever.
PLEASE PLEASE NOTE: MOST DOCTORS here are VERY ethical and VERY kind to all. I just happened to have gotten the very bad one or two.
@lifetime Hello Lifetime! I am Jen and I am a Volunteer Mentor here on Mayo Connect I have read the many postings about your problem with the healthcare at the VA. My husband served in the Navy for 30 years, retiring in 2014. Over the past four years I have learned quite a lot about the VA. May I ask if you retired from the service and how long ago? What state do you live in? I know the VA did start a program for Veterans to get their health care from private physicians. Perhaps this could help you.
Gail, Alumna Mentor
@gailb
@gailb
Posts: 735
Joined: Jan 19, 2017
I said I would check in with you all after my ART treatment today. After my ART treatment this morning, I am MUCH better. I don't know if it's just the endorphins or what, but I'm enjoying the lack of pain and muscle spasms. I am sold on ART, as practiced by my chiropractor! My grandson just started treatment for a painful shoulder that has bothered him for 10 years. I'll be interested if he finds relief because he's done massage, accupuncture, and exercises all these years and they haven't relieved the pain. He's 27 which is too young to have this problem. I'll let you know if he finds relief too.
Gailb
Volunteer Mentor
Liked by Jen, Volunteer Mentor
Jen, Volunteer Mentor
@sandytoes14
@sandytoes14
Posts: 596
Joined: Mar 22, 2016
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)
@grandmar Hello Ronnie,
I'm so very sorry to hear you are having these horrid headaches. Has any doctor tested to see if you are perhaps leaking spinal fluid? I know you write that they ease when sitting up so I wonder if it possible that you are leaking fluid while laying down. I would ask your neuro-surgeon. It couldn't hurt.
Gentle hugs to you,
Jen
Liked by Gail, Alumna Mentor, JK, Volunteer Mentor, grandmaR
lioness
@lioness
@lioness
Posts: 5373
Joined: Jan 09, 2018
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)
@grandmar why won't anyone prescribe Tramadol ?have you seen your rheumatologist? She prescribes it for my fibromyalgia.
Liked by Gail, Alumna Mentor, grandmaR
lioness
@lioness
@lioness
Posts: 5373
Joined: Jan 09, 2018
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.
@gailb Thank you for this information I,he been trying to find trial studies I will call them .Hope your feeling better and now can enjoy your new home Linda
Liked by Gail, Alumna Mentor
cognac
@cognac
@cognac
Posts: 89
Joined: Dec 06, 2017
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.
@gailb, recently I received a similar call from another company offering me a free genetic testing kit. They said Medicare had contacted them and wanted them to do so. They had all my personal information – home address, Medicare number, etc., so I agreed. I called Medicare to verify and was told it was a scam. Medicare asked me to call back when I got the kit to give them the information on where it came from, etc. Medicare also gave me the phone number for the National Fraud people and asked me to call them, also. I only bring this up to ask everyone to be extremely careful giving out personal medical information. @cognac
REPLY
Gail, Alumna Mentor
@gailb
@gailb
Posts: 735
Joined: Jan 19, 2017
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.
Thanks for the heads up about the scam. I too think I was part of a similar scam. The person had all my information too and wanted to send me a special pain cream. I was suspicious of them, but the woman finally talked me into giving them some information. I wouldn't give them my SS #, and she assured me I would be receiving my cream soon. Of course, I've never received the cream. Fortunately, I have 2 protection groups that look for signs of fraudulent use of my credit cards or stolen identity.
I'm confident the website I provided the link for is reputable. However, you can never be too careful.
Thanks, Gailb
Volunteer Mentor
lioness
@lioness
@lioness
Posts: 5373
Joined: Jan 09, 2018
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.
@Gail I just went on the website Gail didn't you say a nurse came to draw your blood?I did contact them online so will see.I have heard before that their is now a blood test for fibro and saw an add in my Dr,s office for this company EpicGeneticts so hopefully it's o.k.
Liked by Gail, Alumna Mentor
Gail, Alumna Mentor
@gailb
@gailb
Posts: 735
Joined: Jan 19, 2017
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)
I was taking Tramadol 50 mg. for nearly 1.5 years for my back pain. I took it 4 times a day and it worked great for me, much better than the oxycodone I had been taking. I have withdrawn from it because my pain has improved so much, although I still take a half pill up to twice a day when in pain. I never felt the need to increase my dosage during the time I took it regularly. I had no bad side effects from it. I understand that it's one of the few "narcotics" that doctors can still prescribe. I used CBD to help me withdraw when I was ready. I had some anxiety and wasn't thinking well for a couple of weeks, but it was relatively easy. I took 3 months to withdraw.
What I'm suggesting is, ask your doctor about the possibility of Tramadol 50 mg. for your pain. Don't let him give you the Tramadol 5/350 because it got acetaminophen and isn't as effective on pain. I hope this information is helpful @grandmar.
Thank you for your suggestion @lioness!
Gailb
Volunteer Mentor
grandmaR
@grandmar
@grandmar
Posts: 1118
Joined: Feb 07, 2018
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)
@galib
Thank you for the information.
I also found that oxy and hydro do not really help except it will take off the edge. But so did my large dose of ibuprophen (which I am no longer allowed to take).
For some reason, my pain doc was hesitant to prescribe the Tramadol.
As a matter of fact, in the 4 years I went to him, he only prescribed pain meds for me one time and that was when I had RFA (radio frequency ablation).
We were once away, in Hawaii, and I was having a terrible time with pain.
I did not have any pain pills, at all.
I called to ask him to prescribe something.
His answer was that he was not licensed to practice in Hawaii so he could not do it.
I don't know if he was avoiding giving me pain meds or he was really not aware he could prescribe in Hawaii.
Really spoiled things for me on that trip!!!
Anyway, I think I will ask my neurosurgeon for the Tramadol.
Thanks for the advice.
Have a great and pain free day….
Ronnie (GRANDMAr)
grandmaR
@grandmar
@grandmar
Posts: 1118
Joined: Feb 07, 2018
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)
@lionessI
I do not know why my pain doc wouldn't prescribe Tramadol?
Like I said, he only prescribed me oxy or hydro.
I am no longer going to see him since the shots and procedures are no longer working.
At this point I am going to stay with the neurosurgeon.
I do not see a rheumatologist.
When I did, I did not find her of any help.
I really think the fibro is under control and this is all stemming from my cervical and lumbar spines.
I'll have to see what the neurosurgeon says when I see him.
Ronnie
grandmaR
@grandmar
@grandmar
Posts: 1118
Joined: Feb 07, 2018
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)
Jen,
Thank you for the suggestion.
I never heard of that.
I certainly will ask the neuro surgeon when I see him next week.
Do you know how they treat that?
Guess I could look it up.
How did you hear about that?
Thanks again for the suggestion!
Have a great and pain free day!
Ronnie
grandmaR
@grandmar
@grandmar
Posts: 1118
Joined: Feb 07, 2018
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
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
Liked by Jen, Volunteer Mentor, Gail, Alumna Mentor
Jen, Volunteer Mentor
@sandytoes14
@sandytoes14
Posts: 596
Joined: Mar 22, 2016
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)
@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
Liked by Gail, Alumna Mentor, grandmaR
@gailb
@grandmar
Please follow your surgeon's advice and your intuition about ART. I know you are good at being your own advocate. I thought maybe you had considered ART in the past, but I didn't remember for sure. My surgeon was skeptical about ART at first, and his only advice was not to let him do any "adjustments on my spine. My ART practitioner only works on my muscles, and was fine about not doing bone manipulation. I understand your concern about the possibility of losing your surgeon. Follow your body's needs. Your surgeon certainly knows your condition much better than I could ever know. I'm glad you are seeing a reputable surgeon who is advising you. It's so important to have excellent doctors who encourage communication with them.
Warm regards,
Gailb
Volunteer Mentor
Liked by Jen, Volunteer Mentor, JK, Volunteer Mentor, grandmaR