Entire spine hurts - Due to Fibromyalgia?

Posted by frustrated47 @frustrated47, Dec 5, 2018

Hi. I am a 47 year old female, diagnosed with fibromyalgia in 2004. Now my entire spine hurts from scull to SI joints. I have 3 bulging disks cervical, 4 disks lumbar, 2 thorasic. My lower back feels like it's being crushed all the time. all the nerves in my legs hurt. I have muscle spasms, stiffness, joint pain, nerve pain, degenerative risk disease, and I can hardly walk. Sitting kills me!
Been on lyrica many years. I'm wondering if anyone out there is going through this with fibro. My doctors are saying all these symptoms are caused from fibro but I'm not convinced.

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

Pain meds are DEFINITELY NOT the first choice of treatment. I lived with 20+ years of chronic, debilitating pain that occasionally rated 10/10, but continued to work as a full-time physical therapist working 10 hour days, without more than Advil because i refused to become dependent on stronger pain meds. After so may years of pain, surgery for cervical fusion, diagnosis of fibromyalgia and mass cell activation syndrome (which affects my lungs and breathing primarily), I could not longer function or remotely live the life I was used to living. I was used to running 9 miles a day, coaching my kids soccer/basketball teams, working as a PT. Then over the course of several weeks, I could barely make it through a normal day. I was emotionally and physically in shock. I found a rheumatologist and psychologist who I continue to work with that continues to help me get through each day, each week. I continue to live an active life because that is who I am. I am NOT my disease. I am sharing MY PERSONAL EXPERIENCE with you all in hopes that it helps someone else like me. It is possible to have FM and be physically active.

I am still working as a physical therapist, specializing in aquatics, and I work closely with my patients. My education includes biokinesiology (how the body moves including the biomechanics of correct movement patterns), how the nervous system interacts with the musculoskeletal system, etc. I have referred patients back to their doctors when I suspect more is going on than originally thought. My job is to improve patient's functional mobility so they perform activities of daily living with less pain and usually with less to no medications. I have helped many patients with FM and others with pain management problems improve their range of motion, strength, and endurance so they can function better and live a better life. Exercise is important to maintain strength and balance to minimize falls and improve overall function. PT's educate patients on how to move their bodies with proper body mechanics and improve their postural awareness to minimize or eliminate pain.

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@leilanis

Pain meds are DEFINITELY NOT the first choice of treatment. I lived with 20+ years of chronic, debilitating pain that occasionally rated 10/10, but continued to work as a full-time physical therapist working 10 hour days, without more than Advil because i refused to become dependent on stronger pain meds. After so may years of pain, surgery for cervical fusion, diagnosis of fibromyalgia and mass cell activation syndrome (which affects my lungs and breathing primarily), I could not longer function or remotely live the life I was used to living. I was used to running 9 miles a day, coaching my kids soccer/basketball teams, working as a PT. Then over the course of several weeks, I could barely make it through a normal day. I was emotionally and physically in shock. I found a rheumatologist and psychologist who I continue to work with that continues to help me get through each day, each week. I continue to live an active life because that is who I am. I am NOT my disease. I am sharing MY PERSONAL EXPERIENCE with you all in hopes that it helps someone else like me. It is possible to have FM and be physically active.

I am still working as a physical therapist, specializing in aquatics, and I work closely with my patients. My education includes biokinesiology (how the body moves including the biomechanics of correct movement patterns), how the nervous system interacts with the musculoskeletal system, etc. I have referred patients back to their doctors when I suspect more is going on than originally thought. My job is to improve patient's functional mobility so they perform activities of daily living with less pain and usually with less to no medications. I have helped many patients with FM and others with pain management problems improve their range of motion, strength, and endurance so they can function better and live a better life. Exercise is important to maintain strength and balance to minimize falls and improve overall function. PT's educate patients on how to move their bodies with proper body mechanics and improve their postural awareness to minimize or eliminate pain.

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@leilanis good for you yes we have to keep going When I fractured my back and after the turtle shell I did P.T in pool I still do Im full of O.A in back and everywhere so still go to pool but I started chair exercises here no machines it's easy on the body but after an hour you feel it I just took my shower for my fibro flare feel better but it's my nerves going into my groin that is worse now ..good for you

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@lioness

@suecreader thanks yes I've tried all the tools plus my Tramadol didn't touch it so am going to get s hot shower usually makes me fill better but I,ve been on connect all day so haven't had time to get depressed lol

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Good for you!

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@leilanis

I get lidocaine injections primarily in along my spine from neck all the way to low back, sometimes in piriformis (muscle in buttocks), upper trapezius. Lidocaine patches are also helpful for me when i have more localized pain.
Baclofen is an anti-seizure medicine and muscle relaxant.
I've been on low dose naloxone for almost a year. I think it does help; I am very active despite the FM. But I feel like i am able to do more without increasing my pain meds. You can get more information about naltrexone at: http://www.ldnscience.org. There has been more research showing that low does naltrexone is beneficial in the treatment of FM. It's not always covered by insurance but i am lucky that my ins covers it. Check with different compounding pharmacies; i found the one in my small town did not but then at another compounding pharmacy it was covered by my insurance.

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Very helpful leilanis! As a former alcohol and drug counselor, I was a bit taken aback by the suggestion of naltrexone. I also appreciate your information about baclofen. My restless legs have not responded to treatment (Requip, Gabepentin, Cinemet, and a host of other Parkinson's drugs) very well and I end up having to keep augmenting until the dose is high enough that the side effects interfere with other parts of my life. Good point about compounding pharmacies too.

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@suecreader

Very helpful leilanis! As a former alcohol and drug counselor, I was a bit taken aback by the suggestion of naltrexone. I also appreciate your information about baclofen. My restless legs have not responded to treatment (Requip, Gabepentin, Cinemet, and a host of other Parkinson's drugs) very well and I end up having to keep augmenting until the dose is high enough that the side effects interfere with other parts of my life. Good point about compounding pharmacies too.

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Have you ever just taken a swollow or 2of dill pickle juice this stops leg cramps of course if there's an underlying disease that's different. For years when I get a cramp at night I reach for dill pickle juice I think it's the vinegar in it

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@leilanis

I get lidocaine injections primarily in along my spine from neck all the way to low back, sometimes in piriformis (muscle in buttocks), upper trapezius. Lidocaine patches are also helpful for me when i have more localized pain.
Baclofen is an anti-seizure medicine and muscle relaxant.
I've been on low dose naloxone for almost a year. I think it does help; I am very active despite the FM. But I feel like i am able to do more without increasing my pain meds. You can get more information about naltrexone at: http://www.ldnscience.org. There has been more research showing that low does naltrexone is beneficial in the treatment of FM. It's not always covered by insurance but i am lucky that my ins covers it. Check with different compounding pharmacies; i found the one in my small town did not but then at another compounding pharmacy it was covered by my insurance.

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I have a supplement plan added to medicare. I have plan F, expensive but since I have so much wrong. I also have the top plan for part D. To help with drugs. My hydroxyzine and lyrica copay each $37 a month. Lyrica for tingling in arm, rest free covered by insurance. I also use aspercream 4% lidocreme, really helps with nerve pain. Had cortisone shots in back. Had 8 shots in lower back at once, did nothing. Very nice pain dr. I manage well, it's getting up in morning, can barely move my body excruciating pain, take 600 mg of ibuprofen, feed dog & me, back to bed. Rest definitely helps me. Whatever works for everyone is great. I have had a few seizures last few yrs, take keppra. When I go home and cuddle with dog life will be great. Broke ankle, fell Dr said fall again, 3 times never walk again. Have ms, in rehab can't stand 2-3 mos.

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@anniemaggie

I have a supplement plan added to medicare. I have plan F, expensive but since I have so much wrong. I also have the top plan for part D. To help with drugs. My hydroxyzine and lyrica copay each $37 a month. Lyrica for tingling in arm, rest free covered by insurance. I also use aspercream 4% lidocreme, really helps with nerve pain. Had cortisone shots in back. Had 8 shots in lower back at once, did nothing. Very nice pain dr. I manage well, it's getting up in morning, can barely move my body excruciating pain, take 600 mg of ibuprofen, feed dog & me, back to bed. Rest definitely helps me. Whatever works for everyone is great. I have had a few seizures last few yrs, take keppra. When I go home and cuddle with dog life will be great. Broke ankle, fell Dr said fall again, 3 times never walk again. Have ms, in rehab can't stand 2-3 mos.

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In response to 47 frustrated. I totally disagree with drs blaming everything on fibro. Get new drs. Lazy attitudes when they don't know what's wrong. Please soon your symptoms sound like a lot of other things but not fibro. Back issues like bulging discs not fibro. Find a pain dr for back and see a DO Dr instead of an MD they deal with muscle, & nerve issues. Also have gentle manipulations, she gently moves arms and legs, DO's trained in this. Like a massage but insurance pays. Done in 15 mins.helps immensely for back issues, usually first 3 weeks, then back moves back. But you can move amazing how well it works.

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@anniemaggie you are so right Dr,s blame everything on fibromyalgia all my back pain ,wrong I had fracture,bulging disc and vertebrae ,s they fused themselves .neck pain haven't found out about this yet going to an ENT soon for dizziness,vision problems ,opthamalogist also . Have a good day.

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@frustrated47 Ive had fibromyalgia for over 30 years they then didn't know what caused it and still don't .A bulging disc is not from fibromyalgia My rheumatologist is great I was diagnosed by him all my back problems came from a fracture and arthritis Most of your symptoms Ive had ,but I found what helps me Ice,Heat,Tens unit Menthol creams on pain areas ,the Tens unit relaxes the muscles by omitting a small amount of electricity. I would find another Dr sounds like this guy has his head in the sand.Good luck

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I am so sorry that you are suffering so much. I am 55 now and was diagnosed with Fibromyalgia in 1994 at Mayo Clinic after getting so frustrated with going from doctor to doctor and no one knowing what was going on or just thought I was just pretending to be hurting and being so extremely fatigued.
I was doing pretty good by seeing a psychologist who helped me in different ways deal with the pain and depression. In 2006 I had a ACDF and I have not been the same since.Something went very wrong when I had surgery,my neck has hurt so bad since,unfortunately I am on very strong pain medications since and my other pain has been out of control since.
I wish that there was something positive I knew that was helpful to ease your pain. Please take care and I will be back in touch.
My Pain Management Doctor was telling me that when the Doctors have their
meeting that they were talking about Fibromyalgia and thought that it would not be a long time until they
(Scientists ) would hopefully figure out the common n denominator with everyone in our oithat has fibromyalgia or it might be 2 or 3 things. Hopefully it will be in our lifetime. I really hope you feel better.

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