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, Alumna Mentor, marychapman, Lmnl09, lioness ... see all
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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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, Alumna Mentor, JK, Alumna Mentor, grandmaR
@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.
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, Alumna Mentor
@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
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@grandmar why won't anyone prescribe Tramadol ?have you seen your rheumatologist? She prescribes it for my fibromyalgia.
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@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 GailBL, Volunteer Mentor
@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
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
@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 GailBL, Volunteer Mentor
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
@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)
@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
@gailb
Hello!
I actually DID some research on the ART you previously suggested.
I also went as far as to find one close to me.
At my last visit with the neuro-surgeon, I brought it up.
He said it was another chiropractic procedure and felt it could do me more harm than good.
Now, this guy has approved of me continuing with the pain doc for my lumbar spine and to return for therapeutic massage.
He was just against the ART practitioner.
I am VERY well aware that I need to be my own advocate!
I am afraid if I do go, and I will still need surgery, I will lose his talents.
He is a very talented surgeon who is very well rated on all websites and I really don't want to lose him.
I just don't know???!!!
Ronnie
(GRANDMAr)
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