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.

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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@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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@leilanis thanks I will look into it that's the class of meds most are for FM anti-seizure

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@leilanis

I have fibromylagia and have moderate to severe spinal pain from my neck to my low back, pain in multiple joints throughout my body that comes and goes depending on activity level. My treatment for FM is: massage from a therapist that is familiar with FM, aquatic exercise from an aquatic physical therapist familiar with FM and pain management, meds to help me sleep, low dose naltrexone, baclofen, lidocaine injections (monthly), cymbalta, pain meds/and or CBDs. My list of meds is long but it lets me play tennis, work at a physical job 15 hours per week (that is my choice and brings me joy), and take care of 12 year old at home. Meditation is a good way to relax naturally and gentle exercise, particularly slowly progressed aquatic therapeutic exercise are great ways to help relieve pain and release endorphins in our body that help us feel better.

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Pain meds are bad. I was diagnosed in 1984. I refuse to take pain meds and I have severe pain throughout body, 4 rare diseases, ms, seizures, loud not active,etc & sjogrens is my primary disease and 5 auto immune etc, serious illnesses. Falls galore, rods in legs at least 75 falls & broken bones just last 18 yrs, falling since 1980's What works for me is ibuprofen. My rheum. Said I can take 14 a day, most I have taken is 5. I did water aerobics for 17+ yrs. But because of injuries, and surgeon saying break ankle 3rd time, never walk again. So I have found all my life what works for me is bed rest. Because of severe pain in back I have to rest, and propping my head up I can go online to work. Rest is key. It controls the pain, eating healthy keeps inflammation away, and I take ibuprofen for everything. Sitting kills me because of back issues. Massage is too expensive. I used to get one once a week back when I had money. But there is another option. I have been going to a DO doctor, Dr of osteopathic medicine. Dr does gentle manipulations.Barely moves my arms and legs and all of a sudden I can move without pain Osteopathics believe in musculoskeletal system, your body's interconnected system of nerves, muscles and bones. I really believe that this is the route for us, they work more closely than MD's with patients. Read up and you will see how they work with mind, body and spirit.

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@anniemaggie

Pain meds are bad. I was diagnosed in 1984. I refuse to take pain meds and I have severe pain throughout body, 4 rare diseases, ms, seizures, loud not active,etc & sjogrens is my primary disease and 5 auto immune etc, serious illnesses. Falls galore, rods in legs at least 75 falls & broken bones just last 18 yrs, falling since 1980's What works for me is ibuprofen. My rheum. Said I can take 14 a day, most I have taken is 5. I did water aerobics for 17+ yrs. But because of injuries, and surgeon saying break ankle 3rd time, never walk again. So I have found all my life what works for me is bed rest. Because of severe pain in back I have to rest, and propping my head up I can go online to work. Rest is key. It controls the pain, eating healthy keeps inflammation away, and I take ibuprofen for everything. Sitting kills me because of back issues. Massage is too expensive. I used to get one once a week back when I had money. But there is another option. I have been going to a DO doctor, Dr of osteopathic medicine. Dr does gentle manipulations.Barely moves my arms and legs and all of a sudden I can move without pain Osteopathics believe in musculoskeletal system, your body's interconnected system of nerves, muscles and bones. I really believe that this is the route for us, they work more closely than MD's with patients. Read up and you will see how they work with mind, body and spirit.

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TY for sharing. Peace!

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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.

REPLY
@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

REPLY
@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.

Jump to this post

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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