New alarming symptoms

Posted by meryw @meryw, Apr 16, 2025

I have been diagnosed with Fibromyalgia for over 20 years now. My main symptoms were fatigue and minor pain in muscles.
Three years ago I began experiencing severe dizziness and syncope (fainting). No one can figure out why or ever connected it to my Fibromyalgia. In the last year, I have lost over 20% of my body weight (mostly muscle mass in my legs and arms) and for the last three months I’ve been experiencing extreme pain in all my muscles They have tested me for everything related to inflammatory and autoimmune diseases and even did a MRI of my brain. All of it came back negative.
Could this all be the Fibromyalgia? Has anyone else experienced these symptoms?
I would appreciate any and all advice, experience and opinions.
Thanks

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Profile picture for loriesco @loriesco

@jeannesf1 i’m so glad I could help! I am an artist, but I took nutritional chemistry in college. I’ve always been extremely interested in food as medicine and health. One more thing since you mentioned an intestinal infection: I take Xifaxin/xifaximan. It is a targeted antibiotic for what is called SIBO small intestinal bacterial overgrowth. You don’t need to take a whole round of antibiotics. After I took the full round at the start I keep extra pills on hand if my stomach gets grumpy on me. SIBO can cause a lot of problems and rec havoc with your small intestines as the bad actors in your intestines tend to flourish on things like gluten and simple carbohydrates. If you don’t get rid of the dairy in the gluten, and you are on the targeted antibiotic when you finish the round of antibiotic you will get diarrhea if you haven’t changed your eating habits. Also, there is no other antibiotic on the market that deals with SIBO it must be that one. It is really expensive, but the insurance company covered it. First, they didn’t cover it, but I asked the doctor to write what they call a prior authorization. The insurance company doesn’t even know what the medication is for! So I got it approved. I always keep it in the house so between the SIBO and the dairy intolerance, which I take Lactaid pills for I’m covered. There’s a lot to know in all of us and the doctors just aren’t equipped to run down the rabbit holes. They really are only good at diagnosing cancer and blockages and things that they can see in the x-ray and the MRI. You’re going on a journey so if you look at it that way you can start taking small steps and alter your direction with your successes. Reach out at any time. A lot of of us make the mistake of doing FODMAP and it works really well and then we start getting lazy about our diet and we regress. I did that for like three years in a row and then I was more healed at that point and more accepting of my dietary changes for life so it’s all working out pretty well. I am on your seven of this journey, so don’t give up, yourself, you’re just starting out on your road to recovery!

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@loriesco you are so right about food as medicine and I’m finding out also the culprit. I know it’s not going to be easy. I’ve also had a bad diet. But knowing that you feel like you’re 30 is so encouraging. I’m 66, and feel like I’m 100. One thing goes away then another thing starts right behind it. I don’t get a break. This must be the key (food as medicine). I’m so grateful for your advice and support. Thank you very much.

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Profile picture for jeannesf1 @jeannesf1

@loriesco you are so right about food as medicine and I’m finding out also the culprit. I know it’s not going to be easy. I’ve also had a bad diet. But knowing that you feel like you’re 30 is so encouraging. I’m 66, and feel like I’m 100. One thing goes away then another thing starts right behind it. I don’t get a break. This must be the key (food as medicine). I’m so grateful for your advice and support. Thank you very much.

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@jeannesf1 sorry, meant “I’ve ALWAYS had a bad diet”.

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Yes definitely fibromyalgia, I've had it over 30 years . Those are normal symptoms. I have to keep moving (walking) or the pain is too unbearable. Actually excersise is one fibromyalgia treatment. Sitting makes it worse and often the meds they throw at us only make symptoms worse and cause more illnesses (doctor won't tell you that your other new illnesses are caused by the meds such as gabapentin, antidepressants

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Profile picture for jlbh @jlbh

I'm 53 yrs. Old, a recovering addict and have such severe (tears rolling down my face) pain, with anxiety, depression, it's gotten to the point where I'm not sleeping but maybe 0-3 hrs. Of interrupted sleep. I don't have a diagnosis yet. I've been researching and it all points to fibro. The e.r.s are a joke where I live and can't get an appt. With a PCP(primary care physician) for 3-4 months. It has become the most unbearable pain I've ever experienced on a night to night basis. Does anyone have any recommendations or ideas to get me help. I'm to the point of relapsing, I have worked to damn hard to go backwards. Desperate in wa. State

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@jlbh those are only a few of fibromyalgia symptoms actually. everything sounds like fibromyalgia but usually isn't . Fibromyalgia is complex with hundreds of symptoms (not just pain ) your symptoms sound like they're related to drug addiction. Most everything mimics fibromyalgia. sorry you can't get appointment. Oregon was the same way, health care is pretty much gone there, I had to leave the state in order to get any healthcare

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I experience some dizziness when there is a big weather change (atmospheric pressure change) or too much sugar. One of the things I do about the "sugar or artificial ingredients" is lots of water with lemon slices. The lemon helps "flush" out the system. Hope this helps some with the dizziness.

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Profile picture for gtbrady @gtbrady

I experience some dizziness when there is a big weather change (atmospheric pressure change) or too much sugar. One of the things I do about the "sugar or artificial ingredients" is lots of water with lemon slices. The lemon helps "flush" out the system. Hope this helps some with the dizziness.

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@gtbrady Thank U I wil tri it.

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