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royalty

490d

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.

Top reply
    • royalty

      482d

      @EncyclopediaFae 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.

    • Doglover25006

      489d

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

    • Doglover25006

      489d

      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

        489d

        @Doglover25006 the village naturals therapy salts? Because they’re insanely amazing, readily available at Walmart and recommended by the NFA

        • Doglover25006

          489d

          @EncyclopediaFae yes! I also like the topricin fibro pain relieving cream

    • StarrKeats

      489d

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

    • CitrusGarden

      489d

      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.

      • royalty

        485d

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

        • EncyclopediaFae

          483d

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

      • EncyclopediaFae

        489d

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

    • enjoyskyblue

      489d

      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

        489d

        @enjoyskyblue 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

        • royalty

          482d

          @EncyclopediaFae 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.

        • enjoyskyblue

          489d

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

    • EncyclopediaFae

      490d

      If you have any more questions feel free to DM me

      • Mazes02

        490d

        @EncyclopediaFae 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

          489d

          @Mazes02 more info in my replies to others below 🤗

        • EncyclopediaFae

          490d

          @Mazes02 lol just having fibro for 6 years. Though I’m launching a YouTube channel under the same name soon

    • EncyclopediaFae

      490d

      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

      490d

      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

      490d

      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

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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