royalty

46d

Can you guys tell me everything you know about fibromyalgia? I don't even know where to start because my doctor didn't tell me anything about it. I know it's a neurological condition that affects the central nervous system but that's about it.

Acute Pain in Thoracic Spine

Gabapentin

Naltrexone

Pregabalin

Generalized pain

acute lethargy

Elevated white blood cell count

Fibromyalgia (FM)

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  • EncyclopediaFae

    46d

    Not really. It’s more like a connective tissue disorder that specifically targets your fascia. If you google a fascia map image you’ll see why that’s an issue. It’s what allows our muscles to easily glide over each other without sticking

  • EncyclopediaFae

    46d

    However with fibro the fascia like to be sticky and form adhesion and is prone to inflammation. The inflammation is what causes the funpark of nerve sensations and the adhesions are why we’re constantly pulling muscles for… nothing. Biggest things are to 1. Try a nerve suppressant such as gabapentin 2. Hydrate to keep your fascia as mobile as possible 3. Gentle stretching and light exercise to keep your fascia moving and lubricated 4. Eat an anti-inflammatory and/or Mediterranean diet 5. Find a Myaofascial Release Therapy (MRT) specialist

  • EncyclopediaFae

    46d

    An MRT specialist is trained in a specific type of message that targets your fascia to break up the adhesions that form and then realign your muscles as sticky fascia can pull them out of place. It’s not your typical relaxing message and can be a bit painful to the normal person but with your pain tolerances it can be relaxing in the sense that your get relief

  • EncyclopediaFae

    46d

    If you have any more questions feel free to DM me

    • Mazes02

      46d

      this was a more comprehensive breakdown of my illness than anything i’ve ever found through medical professionals or the internet. Please please, whatever you’re doing, keep it up!!

      • EncyclopediaFae

        46d

        lol just having fibro for 6 years. Though I’m launching a YouTube channel under the same name soon

      • EncyclopediaFae

        45d

        more info in my replies to others below 🤗

  • Teardrops

    45d

    Wow!!! That is unlike anything I have heard before. I have had fibromyalgia for 20 + years. I haven’t heard explanation. There is gabapentin, Lyrica or pregabalin, Stavella, and Cymbalta to take for fibromyalgia. I just know they don’t work for everyone. Although has hard as it sounds light exercising is good for the body no matter how much it hurts. The movement breaks the cycle of pain - and stiffness but it’s hard to get up and move when you hurt

    • EncyclopediaFae

      45d

      you can read more of my replies down below for a further breakdown. Learning that the nerve pain (your nerves are literally held together by fascia) was just a symptom of something else and not the cause let me refocus the lifestyle changes I was making (treatment is 90% not anything your doctor can really do) and radically changed my life. It’s only really in the last five years or so that this research has really taken off

  • enjoyskyblue

    45d

    Fascia pain only explains tender points and it's because the fascia is irritating the nerves. The reason this causes pain is BC in fibro our nerves basically send way too many pain signals

    • EncyclopediaFae

      45d

      see the Citrus Garden thread below for more info but our nerves are literally wrapped in fascia. It’s the stuff that holds our body together so when it’s aggravated it aggravates the nerves. When I develop a spot where nerve pain increases it’s generally because I’ve over indulged in inflammatory foods (alcohol is a big trigger for me) or more frequently I have an adhesion near by. This is why I advise fellow fibromites to seek out an MRT specialist because not only will they be able to remove those adhesions but they’ll also be able to better educate you on what fascia is and how it works and what types of manual manipulation can help you. Some of the things you’ll learn is that if you have a tender spot if you pull on the skin with your flat hand (slowly! Rough manipulation - particularly on cold muscles will lead to muscle tears and bruising because of how fibro affects your fascia) or use deep pressure on the spot and your pain lessens or goes away, it’s more than likely your fibro. If it gets worse or doesn’t go away it’s a more mundane form of injury. It’s extremely helpful when it comes to playing the game of “is it my fibro or am I hurt?”. I recently had my fascia pull a rib out of place (I also have hypermobility which complicates things) and knowing that simple trick has been a blessing during my physical therapy. It helps me and my PT to know which pain to target to heal and ignore because it’s my fibro. 11/10 recommend MRT

      • enjoyskyblue

        45d

        iirc there's a certain white blood cell abnormality that's associated with fibromyalgia too

      • royalty

        38d

        That honestly sounds more like myofascial pain syndrome than fibromyalgia. Idk from the small amount I know fibro is much more complex than pressure points causing pain. I could be wrong though because like I said I don't know much.

  • CitrusGarden

    45d

    According to a recent study, it is most likely autoimmune! That doesn’t rule out what others are saying, but it’s much more likely an autoimmune condition than it is connective tissue or neurological. https://spondylitis.org/research-new/fibromyalgia-might-be-an-autoimmune-disorder-a-new-study-says/ here is an article that goes over the study results. I suggest reading the actual study though, it’s very interesting.

    • EncyclopediaFae

      45d

      there are few that suggest it may be immunodeficiency as well. Sadly it won’t trigger any of the standard autoimmune tests

      • Teardrops

        45d

        😥. But maybe if they start a study using the blood work of hundreds of thousands of people who get this fibromyalgia diagnosis and see if there is any evidence showing similarity in every they test. I don’t know what they would test for since currently nothing is positive for fibromyalgia

    • royalty

      41d

      I thought they said it was more likely neurological than autoimmune. Man now even doctors are changing their minds on me🤣

      • EncyclopediaFae

        39d

        it’s linked to a protein issue involved with your immune system and healing. It’s not a true autoimmune but shares some similarities

  • StarrKeats

    45d

    all I was told when I was diagnosed is that it's a disease of the cns

  • Doglover25006

    45d

    For me lifestyle changes have made the biggest difference, but I also take low dose naltrexone and lyrica plus a bunch of supplements. Chiropractic, acupuncture, regular massages and physical therapy have helped me. I also get routine iv hydration technically for my hypermobile ehlers danlos, but I feel it helps my fibro as well. Cutting inflammatory foods out of my diet was a game changer. I cut out gluten, dairy, corn, most processed foods, limit sugar, and only eat animals that are not farm raised because the antibiotics and hormones they feed farm raised animals irritate my system. Making sure I move my body a little bit every day, getting enough sleep, managing my stress levels also help a lot. I have a device that I love that helps my pain. It’s called an oska pulse and it used pulsed electromagnetic frequency to change how things like water, nutrients and toxins move in and out of your cells. This link explains how it works. https://www.oskawellness.com/pages/how-it-works I also love compression socks, my heating pad, tens machine, weighted blanket, and shiatsu massager. Making sure you’re wearing good supportive shoes helps. Making sure you have good comfortable chairs to sit in and pillows and mattress in bed that support your body. I also love Epsom salt body wash and bath salts. There’s one that’s meant for chronic pain and fatigue that I use often. I find I feel worse when I’m cold as well so I make sure to always have enough layers that I’m not shivering and tending my muscles. A lot of people with fibro also have comorbidities. Sjogrens and sleep apnea are really common. So is digestive issues. I take turmeric supplements (it absorbs better if it also has ginger or black pepper), magnesium, methyl folate (because of my MTHFR gene mutation), vitamin b12, vitamin c, and vitamin d. Fibro has its own symptoms, but it also amplifies other conditions. So managing any other health conditions you have will help your fibro.

    • EncyclopediaFae

      45d

      the village naturals therapy salts? Because they’re insanely amazing, readily available at Walmart and recommended by the NFA

      • Doglover25006

        45d

        yes! I also like the topricin fibro pain relieving cream

  • Doglover25006

    45d

    I also really enjoy the fibromyalgia podcast by tami stacklehouse she is a fibromyalgia coach who has fibro herself

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