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Fibromyalgia as tight muscles

Discussion in 'Fibromyalgia' started by Eiren, Mar 14, 2018.

  1. Eiren

    Eiren

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    So I saw my fibromyalgia consultant yesterday. And there were three main points:

    1. Fibromyalgia is something which largely affects Type A personalities who stress out over things too much - I hate these personality characterizations for diseases so much, and I call total BS on this too. I'm pretty laid back, really.

    2. Fibromyalgia is caused by the brain receiving too much unfiltered information from the nerves through the spine, so it perceives pain where there is none - I realize this is the dominant theory for FM, but I am really doubtful if this is happening in my case. Moreover, I don't think I get the "brain fog" and other mental symptoms usually described for FM. I get mentally fatigued faster than I used too, and I feel a bit more confused, but that's it, and I think those things can easily be chalked up to the brain constantly having to deal with all the bad stuff that is chronic pain.

    3. Fibromyalgia is caused by tight muscles - Apparently the rheumy noticed this when he examined me, that all my muscles were tight and clenched. I remember the neurologist last summer saying something of the same, that I had issues relaxing my muscles all the way when he was doing the reflex tests. And apparently, according to the rheumy, this explains my tendinitis in my hands and feet - all my muscles are clenched, so that pulls on the tendons and causes them to be stiff and thus be prone to inflaming with use. The rheumy thinks I have always had a tendency to tight muscles, but getting EBV and Lyme within a year put my problem on hyperdrive, and thus the fibromyalgia.

    So, point 3 seems to not be total BS in my case. I noticed the tendinitis long before the myalgia started up, but okay. And I found this explanation. And as I mentioned in another thread, I've been having issues with my blood pressure and tachy, and according to this blog post they all go together - muscles are needed to move blood around your body, and when they don't work right the peripheral areas don't get enough blood flow or nutrients.

    But this type (subtype?) of FM seems kinda, idk, not common. I think. Google tells me that other pwFM have random ongoing tendinitis issues, so this "tight muscles" thing seems to happen to others. But most if the medical discussion seems centered on pt. 2 and brain signals.

    Myhill seems to go with pt. 3 and ties FM to mitochondrial dysfunction in the muscles. So I guess that's why I'm here at PR.

    Wondering of anyone else has this FM-muscle-tightness type, and how others approach it.

    I already eat low sugar (LCHF), I get heat (sauna 2x week), do gentle exercise (tai chi), and started with iodine. The rest of Myhill's suggestions I'm still working on. It feels like a lot of stuff, I'm struggling to understand all of it, and I'm not seeing a specific protocol for my case (FM and maybe lingering Lyme and/or EBV). So I'm trying to figure it out.
     
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  2. pattismith

    pattismith Senior Member

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    Do you take Selenium as well?

    I have muscle + tendons + joints problems and pain (recurrent tendinitis from exercising and muscle inflammation), and I recently discovered I have a Low T3 syndrome, even though my thyroid panel has always been in the normal ranges.
     
  3. Eiren

    Eiren

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    I've started taking Nutri-West Thyroid 2, which has selenium and a bit of thymus gland. Though I realized this morning it has folic acid (not folate). Oh well. My other supp also have some selenium.

    Looked up Low T3 syndrome. I've never had my t3 measured. Are you talking about Euthyroid sick syndrome (ESS)?

    My joints also hurt, but there's no noticeable swelling (arthalgia). I don't know if it's because of tight muscles pulling on them, or tight tendons, or what. With no swelling or inflammation, doctors don't think it's serious. Hmmhmm.
     
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  4. pattismith

    pattismith Senior Member

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    yes, Low T3 syndrome = Non thyroidal Ilness = Euthyroid Sick Syndrome.

    How were your TSH and fT4?
     
  5. Dmitri

    Dmitri Senior Member

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    NYC
    Has it ever occurred to them that fibromyalgia, a disorder that affects the nervous system and causes organ systems to tense up, could cause "Type A personality"? In the world of psychobabble, the laws of causation and physics are upside down.

    Global muscle stiffness is a major symptom of mine, especially in my neck and psoas, which are in constant pain. Physical therapists also noted how incredibly tight the muscles are in my neck, back and legs, it makes me walk like a robot.

    There is overlap with this, which I wanted to rule out: https://en.wikipedia.org/wiki/Stiff_person_syndrome
     
    WoolPippi and Sidny like this.
  6. Pink

    Pink Senior Member

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    Interesting,my rheumatologist never discussed these ideas about my fibromyalgia. He just said it's a wastebasket diagnosis when they don't know what else is wrong with you.

    He offered cymbalta as treatment for the pain, but it didn't help and made me much worse.
    Been having a lot of fibro pain lately.
     
  7. Eiren

    Eiren

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    I've only had TSH measured. But it's moving, I think.
    March, 2018: TSH 1.8 (ref. 0.27-4.2)
    July, 2017: TSH 1.6
    May, 2017: TSH 3.45
    November, 2016: TSH 2.39

    I'm not sure why there was the drop in 3 months from 3.45 to 1.6. I was taking ALA in those months, I think. And maybe EPO as well. Don't know what effect those would have. But I stopped taking both last summer (just ran out and never ordered more) and the TSH has stayed low, soo...

    But that's if TSH actually means anything, yeah, I'm not so sure.
     
    Last edited: Mar 15, 2018
    pattismith likes this.
  8. Eiren

    Eiren

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    Yeah, I kinda shuffle-walk. During my last (and never again) PT, I was made to walk "properly" for 8 minutes, and it gave me heel spurs and nearly tore my achilles. I told her everything was tight, but I guess she thought she could know my body better than I did just by looking at me????

    Stiff Person Syndrome - yeah, but my core is the least tight, so that doesn't fit so much. But I'd be interested knowing what "alternative" therapies or supplements people who have that have found helpful. It may be useful to us.

    I haven't tried cymbalta, but I've tried LOTS of other drugs, all with bad side effects. I'm currently trialing Lyrica. I've also had luck with amipiltriptyline, but only 25mg. When I tried 50mg I got side effects and no added benefit.

    I think part of the issue is that doctors keep giving me high doses of the drugs. I'm a small person, and I might have blood volume issues, taking the standard dose of tramadol 3x a day is my sure recipe for seratonin sickness. I like the method of starting slow and titrating up, my most doctors seem to think that idea is bananas. And the pills I get are usually capsules, so I can't cut them.

    Maybe ask for something else, and ask for low dose per capsule so you can start small and see what level works best for you?
     
  9. pattismith

    pattismith Senior Member

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    What are ALA and EPO? Did you take any drug that could affect your thyroid?

    I would be feel concerned if I had such varaitions in TSH...

    TSH is supposed to regulate thyroid secretion, so it goes up when TH are going down and it goes down when TH are going up.
     
  10. Eiren

    Eiren

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    ALA = Alpha Lipoic Acid
    EPO = Evening Primrose Oil

    I can't think of anything else in particular that changed.
     
  11. Stretched

    Stretched Senior Member

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    I don’t know if I have fibromyalgia or not but I have pain that runs around my rib cage and up my spine area into my shoulders.
    In addition, my legs will ache as do my feet which can burn like crazy when I’m amped up or sleep deprived. I’m somewhat
    on the type A scale, at least internally.

    It’s been this way since onset of CFS. I’ve told docs about it but never got any solid feedback. One neuro said the feet were peripheral neuropathy, which is BS, I.e. ‘I don’t know what it is.’ I presumed the other ‘listeners’ thought it was part of the ‘syndrome.’ I haven’t found anything that helps with any of this otherwise systemic pain, really. Tramadol dulls the pain somewhat but that has its own problems

    I’d be interested if others experience this as part of their CFS syndrome or if it sounds like FM to those PWFMs, and what anyone has found that may ease this pain. It’s pretty much a constant and can be to-sofa limiting with any exertion.
     
  12. Eiren

    Eiren

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    Systemic pain (particularly muscle pain) without inflammation, is the basic definition of FM.

    If your doctor did actually think you have peripheral neuropathy he should have sent you to a neurologist for a full nerve conduction test. PN is serious.

    I started taking the amipiltriptyline when my GP and I thought that I had PN. It's the go-to drug for nerve pain, and also overall pain. Even now that I've had all the nerve tests done and been diagnosed with totally healthy nerves, since I have done so well on it, my GP keeps renewing my rx. It has also eased my headaches and evens out my sleep.

    I'm not sure how much pain goes with CFS and how it differentiates with FM. But lots of people have both FM and CFS, so perhaps that's you too. If it really is constant, and not tied to exertion, I think that points to FM.
     
  13. perchance dreamer

    perchance dreamer Senior Member

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    My fibro started 30 years ago after I fell and hit my head. I've read that head injuries can cause fibro in other people, too, but only for a subset of fibro patients.

    I recently started taking Integrative Therapuetics Krebs Magnesium/Potassium Complex, 2 tablets 2X daily, which is more than the recommended dose of 2 a day. It seems to be improving my fibro pain somewhat.

    https://www.amazon.com/Integrative-Therapeutics-Magnesium-Potassium-Complex-Function/dp/B0031X1110

    These are large tablets that some people might have a hard time with. I don't because I put water in my mouth before the pill, so even large ones just glide down.

    I don't have time to check, but I think this supplement has the same ingredients with smaller tablets. I haven't tried it.

    https://www.amazon.com/Enzymatic-Therapy-Magnesium-Potassium-Tablets/dp/B000VE0R8U

    I had been taking plenty of other types of MG that are supposed to be absorbable, such as MG lactate and glycinate, but the forms in this supplement seem to work better for me. It is also helping my sleep.

    Although I was already taking supplemental potassium, my PA always tells me I need more when she discusses bloodwork with me. I think since I have MTHFR mutations, as so many of us do, all the B12 I take can deplete potassium. (Really, if they didn't want us to call MTHFR motherfucker, they should have used another abbreviation.)
     
  14. Eiren

    Eiren

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    I've read that magnesium malate is supposed to be good for fibro. I'm having some issues finding it here in NL, but I suppose I can take Malic Acid with my MagCit?

    The malic acid and magnesium are supposed to be good for the muscles. Calcium and potassium are also good for muscles.

    I'm supplementing mag and cal, but the potassium is a little more tricky. I'm thinking to pick up some Lo-Salt from the store, but just haven't managed to do that yet.

    I was reading Wahls book, and she has a small section about RLS and in it she mentions some GABA stimulators that work like Baclofen, the rx for spasticity. Those are taurine, NAC, and lipoic acid (ALA). I wonder if these GABA stimulators (that influence dopamine) would have an effect for spasticity in fibro.

    I actually took ALA and some NAC last summer, and I wasn't as bad then. Fatigued (especially with exertion) and some pain, but now I wonder if I was doing something good and should have stuck with it for longer.

    I'm wondering if it would be good to create a "protocol" for our muscles. Such as:
    Magnesium (malate) - mg?
    Calcium - mg?
    Potassium - mg?
    Malate/Malic acid - mg?
    NAC - mg?
    ALA - mg?
    Taurine - mg?

    I'm already taking Mag and Cal, so maybe I can add Potassium next, and then the rest and see what helps.
     
  15. Eiren

    Eiren

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    This site about RLS also mentions some other dopamine stimulators (like Mucuna Pruriens) that might be helpful to try, maybe?
     

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