Have you found anything to successfully treat fibromyalgia pain?

@migizii Best of luck. Keep us posted.

LDN
https://www.verywellhealth.com/low-dose-naltrexone-ldn-for-fibromyalgia-cfs-716070

@debkl I noticed some familiar stuff in your post, as I've been there myself. I have had C8 nerve root abnormalities, and I have thoracic outlet syndrome and I did have spinal cord compression because of a collapsed disc with bone spurs at C5/C6. I had a spinal fusion at Mayo to fix that. Spine issues of a compressed spinal cord can exist without pain and be a complete surprise to the patient. Likewise, if nerve damage from nerve compression is is significant enough, this nerve conduction studies and EMG tests don't hurt as much for those specific nerves. That was my experience, and I found those tests to be very uncomfortable and painful. It took me 2 years and 5 spine surgeons before I found one who understood the issues at Mayo and fixed the problem.

I wanted to check in with you since your post was last month to see how you were doing and if you have any new findings. Did you have any new imaging ? I know how easy it is for symptoms to be overlooked and dismissed or misunderstood.

Hi Jennifer, Thanks for your comments.

I had a C-spine MRI 2 wks ago that showed bilateral severe foraminal stenoses from osteophytes from C5 through C8. Most of the stenoses increased from a 2017 study .

Three needle insertion points from the neck and arm NCV still hurt. About 75% of the test was not painful.

I had an appointment with a new PCP for unrelated things and explained what was going on. She thought I needed urgent surgery. I told her I don't have pain but do get numbness and tingling which she said is pain. She blamed me for not providing adequate details to prior docs to make an accurate diagnosis.

At my appointment with a highly regarded spine surgeon last week, he ridiculed much of what my neurologist stated about diagnosis and treatment. I do agree with surgeon that I do not have fibro, but he thinks all my symptoms come from thoracic kyphosis. He referred me to a physical therapist who specializes in posture correction. This type of PT has never been validated, in fact, it's been debunked. I get muscle weakness after exercise, even though my muscle strength test on neuro exam is excellent. Neuro surgeon also told me my "problem" was that I was obsessed with getting a diagnosis. Today I had upper abdominal weakness from laughing a lot. I'm not sure what my next step is.

Just a suggestion, but a physical therapist suggested that I use a kneeling chair whenever possible. I had four newy-herniated discs at the time and could barely sit up on a horizontal surface but the healing chair was comfortable and helped save my posture. They're fairly inexpensive and utilitarian looking but can make sitting up straight possible and comfortable. And stable so that, if you laugh too hard, you're totally safe...wishing you more laughing moments and fewer doctors who aren't quite helpful.

@debkl This makes me sad to hear that you were treated this way by doctors. You have a right to seek a diagnosis, and when a surgeon doesn't know with certainty what exactly is causing your symptoms, they can make up excuses. That happened to me and I was turned down by 5 spine surgeons before I came to Mayo Clinic. Surgeons don't want to get it wrong and they are under a lot of stress and pressure not to make mistakes. The other factor is they are rated by insurance companies with the success of their procedures and they don't want to risk a poor outcome that will lower their ratings of saying how successful they are. They put themselves above the patients they could be helping. I don't want to generalize and say all surgeons are like this, but as patients we go in trusting that a doctor wants to help us, and it isn't always the case.

Another problem is that there is no collaboration between your neurosurgeon and your neurologist. They should be helping each other for your benefit, and you deserve compassionate care, not a doctor blaming you for your condition. The reason that 5 surgeons refused to help me was because I had pain symptoms that they didn't understand and could not connect to the spinal cord compression on my MRI. A top (non Mayo) surgeon told me I may have MS, and that he didn't know if surgery would make me better or worse... at least the second statement was true.

The doctors at Mayo Clinic would not treat you this way. Compassion is actually part of their job description (I looked it up) and they collaborate with each other very efficiently. You won't be jumping through hoops and waiting months for appointments with various providers and being passed around. Honestly, I didn't know medicine could be this way. I came to Mayo after finding medical literature with cases similar to mine at a time when this wasn't widely known. I was sent for neurological testing and a consult with a neurologist from the spine center assigned to me by the neurosurgeon I would see. All the testing and imaging was completed in a few days, and at the first meeting with the neurosurgeon, he offered surgery to decompress my spinal cord, and he and the neurologist were both familiar with my pain symptoms that are known as "funicular pain". You have severe foraminal stenosis affecting the nerves that exit the spine between your vertebrae.
All this is mapped on a dermatome map that shows where the nerves travel as they reach the skin surface of the body.
The C5 through C8 levels affect these areas according to this link:
https://www.healthline.com/health/dermatome#dermatomes-list
C5: area of the collarbones, upper shoulders
C6: shoulders, outside of arm, thumb
C7: upper back, back of arm, pointer and middle finger
C8: upper back, inside of arm, ring and little finger

The other thing about your spine is that the spinal cord should float freely in the spinal fluid and be able to change position as you bend your spine. If at any place, the cord is impinged by a disc, bone spurs, or a ligament, it can affect anything below that level, and there can also be issues if you have some cervical cord pressure added in. Osteophytes grow from uneven pressure, and poor slouching posture will add pressure unevenly to your spine. Kyphosis can also be related to tight muscles and tight fascia that keep you from standing up straight. There is a type of physical therapy called myofascial release that may be able to help if that is the case. Please see this discussion for more information:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Your surgeon may be thinking you can correct your issues with physical therapy, but that will not change the compression on the nerve roots unless you can buy some more space between the vertebrae or get it into better alignment. Would you like to start over with a spine consult? I wish I had come to Mayo first instead of wasting 2 years chasing surgeons who didn't want to help me.

If you want to seek care at Mayo Clinic, get a copy of your current imaging on disc and your report. I will give you a link to get started. Mayo will give you a temporary patient account to send in your imaging disc and they will not charge you to review your case. If the surgeon reviewing your imaging thinks they can help you, you will be offered an appointment if there is availability.
You can check if Mayo accepts your insurance in network at this web page. https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance

Being a patient is hard enough. You will need to advocate for yourself. Having spine surgery at Mayo Rochester exceeded all my expectations, and it wasn't as painful as I had imagined it to be. I can't express my gratitude enough to my surgeon, and it is the reason that I am here to help other patients as a volunteer.

Here is the link you may use to make contact to seek an appointment with any of the Mayo campuses:
http://mayocl.in/1mtmR63
Here is my patient story. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Do you have any questions about anything on your MRI report that I might be able to help explain?

Looking for updated comments from anyone with Fibromyalgia on how you deal with the pain and if any medications help. I've been having symptoms since February 2022, shortly after I got Covid, and was recently diagnosed. I have widespread body pain almost 24/7 that makes it hard to lead a normal life. I've also had severe insomnia since the pain started. I've watched video's from the Mayo Clinic and they seem to discourage any medications because they usually don't help relieve the pain very much and have bad side effects. Looking for any advice, your experience, and what helps.

@ripley Hello, what I am about to say is probably going to cause a chorus of protests, but I am just reporting my personal experience.
I was diagnosed with fibromyalgia, in addition to arthritis, 30 years ago. At the time, it was a horrendously controversial diagnosis, and probably 80% of the medical community didn't believe it was real. My doc at the time confessed that she also had it, and that like me, she had a demanding career and 2 young children, so bed rest or even "taking it easy" was not an option.
Her prescription was make time for adequate sleep and regular (at least 4X a week) exercise, no matter how fatigued I felt. She also gave me amitryptilin (stopped 10 years ago as contraindicated for people over 60) to help with sleep. I incorporated this into my life and managed to keep going - sometimes not very happily, until I was able to retire.
5 years ago I became ill with a serious lung infection & bronchiectasis that knocked me out of action for 2 years, and I became a couch potato & a ball of pain. Pain meds were no help, and ruining my stomach.
In 2020, I decided this was NO WAY to live - I went to the pain management clinic that is part of our large multidisciplinary medical practice. After 6 hard months, I was back in action, and have continued to improve.
The prescription? Visualization, meditation (still working on that), diet, sleep, stretching and daily exercise. The only pain med I take is a low dose of Cymbalta and occasional ibuprofen for a headache.
If I skip stretching any day, or exercise for more than a day, all my trigger points flare. Then I make myself go for a brisk walk or otherwise get moving - even though I want to lay down and curl up in a ball of misery.

Don't give up - look into a fibro or pain management program - they can be hard to find, but worth it. Do not think a "pain clinic" is the same - check it out - many of them rely on finding "the right combination of medication" - not what you need.

Have you asked about finding help?
Sue

@sueinmn
Sue- you were lucky to find that doctor 30 years ago. I don’t recall many in the medical community then agreeing that it was real.
My daughter was diagnosed at 15 in 1998 and my son at 13 in 2000. They were lucky to see a pediatric rheumatologist who ran a fibromyalgia program for kids. They pretty much did what you did, including the amitriptyline. Sleep hygiene it was called. Regular sleep hours, no naps. Meditation, moderate exercise- they were swimmers, which was recommended. Stress would bring on pain through the years.
When my daughter was a senior in college stress caused extreme pain during finals preparation. She saw a pain management specialist who gave her lidocaine infusion as an emergency treatment. It helped her through that time. It also reminded her how it was walking without pain!
As adults, both know they have to follow the initial recommendations to get enough sleep, exercise and minimize stress.

ThAnk you to everyone for your comments. I will be looking into some of the suggestions. Best wishes to all . I feel I have found a group who understands this changeable condition! We