Fibromyalgia and Spinal Bone Spurs

Hi @robbinr,

I found these discussions about bone spurs, on Connect which you may wish to view:

Wondering what's involved in surgery to remove bone spurs and how long [...] http://mayocl.in/2stOIbb
Bone Spurs in neck http://mayocl.in/2tmgPJh

@jjwest @tallygirl @sandytoes14 @jrohrmayer, do you have any insights to share with @robbinr?

@robbinr I'm sorry to hear you have this pain.
I have bone spurs on my cervical spine. Between that, degeneration and bulging of discs, I have been in extreme pain, much like you describe. At this point I will spare the long story, but ask your primary care doctor to send you to a pain management specialist. I am on Percocet 10/325 1x 6 hrs as needed for the pain. Do you have any input on the doctors you see? With my insurance I can see only those in my plan. I found that going to a group of docs who specialize and were trained in pain management are the best. Previous treatments that I have had were epidural steroid injections which must be done under fluroscopy.(You don't want someone sticking needles in your spine without X Ray to guide them!) so I specifically look for a Dr who is also an anesthesiologist.
I hope you find the relief you need.
Jen

Thanks for the response. I'll see what Pain Management options are under my plan.
Robbin

@sandytoes14 Hi Jen: What great advice for someone who needs a pain specialist! Thanks for the information - if I ever need a pain specialist I'll be much better prepared and know what questions to ask. Teresa

HI, As a follow up, I went to a Pain Clinic in Colorado. After an MRI, their Dr. did four shots in my low spine L5-S1 and in the trigger points of my glut. I have no pain now. They did prescribe Nuycenta but I have not had to use it. Wow. R

Thanks for the update, @robbinr. So glad you're feeling better.

@robbinr, sounds like you have some real issues there. But may I suggest you talk to a hematologist about the possibility of mis-folded protein disease deposit, or Amyloidosis of some kind. The reason I say this is that one sidelight of some Amy is the growth of lesions or growths of bone or other tissue along the spine or anywhere else in the body. I, several of my current family, and one of my kindred a years ago had these. I have had shots, surgery, braces, even massages and cardiac therapy (which nearly therapied me right to the grave). I would suggest Mayo-Rochester, Brigham and Women's, Stanford, U of Utah with ARUP Labs, etc. An experienced lab and a well-trained hematologist could deal with this in a hurry. Now, understand, the chances that you have this are not great, but if you do, and do not deal with the issues, ...... Check the videos on Mayoclinic.org called "Grand Rounds", especially done by Morey Gertz MD and Martha Grogan MD. And contact Amyloidosis.org for info. DO NOT rely on local labs for the work unless you live in Rochester, Los Angeles, Boston, Salt Lake or Palo Alto.

OMG! I think we're twins! I started w/ Fibro Dx after Carpal Tunnel Dx. (Workers Comp MD found it while treating me for CT. I immediately went to MY MD to see what this "condition" was. I didn't have the name yet. I was referred to testing.... I had the answer waiting for me next MDs appt. as usu. pT was recommended.. What I got was torture!! They wanted me to "work out " the knots by using a foam roller!! REALLY!!?? Sooo painful!!

My W/C MD was a Physiatrist & Rx'd Ultram & low dose Anti Depressant therapy. After about a month, I started to realize some relief. My MD Rx'd Neurontin for my Sciatica (R/side.... ) then.. My W/C MD was an Angel!! He cared so much about me... And my pain.. God Bless him!! Flash forward to about 2 yrs ago... My Back MD ( MY health plan) ordered an MRI... BINGO!! Spinal Stenosis!! (Bumps on the vertebra ... Shifted L/4/5 pinching my spinal cord... Also due to bone on bone of my R/ Knee (x-Rays) my gait is like I'm drunk! I weave all over the place!!

Knees KILL ME!! Rheum. Refused to Rx pain Rxs.. Dumped me to My Personal MD. Then the HELL starts.. W/C dumped me!! No longer would pay for Ultram for Pain ... Anti dep (Lexapro) ... & Ambuen to @ least get 5 yrs of sleep... I went into the most horrible pain syndrome. I had to prove all over again (w/my insurance) that I really needed the Rxs STILL!! Well I did.. THE most horrible pain... Couldn't walk!! Did EMG of arms & hands... Found I had THE worst CT ever!! That just shooting cortisone the W/C folks pushed did NOTHING to correct!! I had initial DeQuervaines Surgery on dominant hand & tendon to side of wrist. (R) then L/
Then when the Hand Surgeon looked at my films... He asked me his I had lived??!! I told him I didn't!! I almost lost my job!! Told me you BADLY need a FULL C/T surgery to CUT the tendons in both hands!! I tried to use my L/hand to not get fired!

Amazing how I don't have to hold my R/hand w/ my L/ to just brush my teeth!! I have more blood flow!! Less numbness!! The beginning g of the end of SEVERE pain!!

Back MD Rx'd me the Ultram again w/ some T#3 for REALLY severe pain ( in lieu of the Ultram) also tried injecting my spine w/ Facet Injections. (cortisone). I couldn't tolerate it!! So he recommended Radio Ablation where ~ 6" nerdles are inserted over an X-Ray table and current "burns" the connection to transport pain messages to my brain!! Worked for ~ 16 mos!! Then
"Repeat, Rinse!" But BIG difference.

Knees.. X-Rays revealed I need bi-lateral Knee REPLACEMENTS ( @ age 58!!) R/ bone Vs Bone!! Sent for knee injections .. MD couldn't believe I needed both!!! Injected.. So he lectured me about health & nutrition( I'm also an EMT) and ate some cavalier comments.. But he did suggest Double Strength Glucosamin Chondroitin & Turmeric tabs. I had read they were BS... So I went into to this biased... Finally ~ 4 mos... Whoa!! Inflammation & pain greatly reduced!! I was able to walk some w/o crying in SEVERE pain! Told to lose wt for bi-lat knee replacements too! Ah! How can you exercise if you barely walk!' I was active previously in Karate... Swimming... Speed walking... And physical skills for my LE job... I also volunteered in EMS WORK & Red Cross as Instructor of CPR!! I had yo demo it to students... In my KNEES!! Well... That was NOW a no go!!

I had to start using a cane.. Which is quite humbling!! Some WANT to be disabled... NOT me... I was embarrassed... Then comes the continued issues..."you don't LOOK disabled". Fibro what?? Well don't think about it... You don't hurt!! RIGHT!!

So.. Glucosamin DS(dbl strength ( 2 caps in am
1 in pm...) Turmeric W/ Black Pepper 1 in an & 1 in
Pm... Ultram q6 hrs (50 mg) .. Ambien(5 mg) at bedtime) but D3 6,000 mg... But B Complex... 2x Fibrr Caps ( to stay regular ) & probiotic for stomach health ( I have ulcers too!) Note: the Turmeric & Probiotics are good for your stomach!!

I also gave a great medical source... My younger Sister is an Interventional Cardiologist. So I clear all w/ her!!

PS: I'm also female and went thru Menopause too thru the Dx phase!! I'm not able to take the several Antidep. I was Rx'd due to .. Excessive sweating... Then Hair loss... (I have long hair) then caused Blood pressure to go up!! Can't win for losing!! But... I'm now stabilized.. Have a few days I HAVE to use a cane.. If Im not familiar w/ a place, I take my cane!! Been humiliated by falling everywhere... Now I'm more able to walk w/o buffing it.... Only thru the grave of God and my 1st make MD (JB) did I learn about my Sx & the options available to me.

I warn you.. Not all MDs even acknowledge the existence of Fibro.. chronic Fatigue... Etc.. Gotta find someone who care enough to read them New England Journal of Medicines!! On the latest discoveries.

PS: I have common past history of multiple MVA's (car accidents I never caused but had to endure!! Some believe Fibro is due to brain memory of past pain hitting you all at once... Hoping we aren't forgotten! I still fight for the rest of my life!!

Thank You & God Bless my Bros & Sis w/ the pain syndromes!!

Don't hesitate to ask me ?s I will try to reply... As I can..( 5 total C/T surgeries... Also 3 Maxifacial Sinus surgeries ALSO RELATED to Fibro!! YES!!! I am Not crazy!!

Hello @onewhoknows,

Welcome, and thank you so much for sharing your story on Mayo Clinic Connect. You've certainly been through a lot, and I'm glad to hear you've come out of it, still fighting for your health! Kudos to you!
Let us know if you have any questions or suggestions...we're here, listening.

Hello @onewhoknows

I so admire your persistence in looking for answers and help. You have really persevered, even when you met doctors who were not at all helpful. I'm glad that you have a good family support system - that makes such a difference.

Are you still taking the Double Strength Glucosamine Chondroitin & Turmeric tab?

Teresa