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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As soon as l t this ALL be fibromyalagia "
I took notice .
I had severe Crohns disease in my early 20's . Perforated colon , colostomy, loads of surgery etc . Got the t shirt.
Enough trauma and illness for one lifetime , or so l thought . I rallied , studied hard , and worked as a Nurse for the next 30yrs . My health was never brilliant , so l worked 3 nights a week on the nurse bank . So that if l was feeling awful , l wasn't letting anyone down . I continued to study , and got extremely qualified, for someone stuck on nights . I had to accept that that was as far as my career was even going to go .
@ 10 years l woke up sick , and never got better . To cut a very long story short , l was eventually diagnosed with Fibromyalagia. Text book symptoms . Prescribed all the correct medication. For a while it seemed like that diagnosis was all wrapped up . Then there were more and more symptoms . I remember saying to my doctor "is this it , or is there still more to come" over and over . As the years went by there didn't seem an inch of me that wasn't broken or dysfunctional in some way .
Doctors were gaslighting me ., and my quality of life was so poor , l wanted to give up . This can not all be fibromyalagia ! ! !
I happen to read something on the net , which lead to something else , and something else . I tried to correlate all my symptoms , determined to find a connection between all of them . I was so ill that l was bed bound , and had loads of time to read . I researched for weeks . Then l read something about FND . Weeks have gone by and lm still researching . That's where lm up to .
Is THERE anyone out there that has considered FND and fibromyalagia together . They do apparently co exist , and it would answer all of my combined sympoms .
I'm only at the start of this new journey, but if anyone has a opinion on this , l would be eternally grateful

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Profile picture for alisonuk @alisonuk

As soon as l t this ALL be fibromyalagia "
I took notice .
I had severe Crohns disease in my early 20's . Perforated colon , colostomy, loads of surgery etc . Got the t shirt.
Enough trauma and illness for one lifetime , or so l thought . I rallied , studied hard , and worked as a Nurse for the next 30yrs . My health was never brilliant , so l worked 3 nights a week on the nurse bank . So that if l was feeling awful , l wasn't letting anyone down . I continued to study , and got extremely qualified, for someone stuck on nights . I had to accept that that was as far as my career was even going to go .
@ 10 years l woke up sick , and never got better . To cut a very long story short , l was eventually diagnosed with Fibromyalagia. Text book symptoms . Prescribed all the correct medication. For a while it seemed like that diagnosis was all wrapped up . Then there were more and more symptoms . I remember saying to my doctor "is this it , or is there still more to come" over and over . As the years went by there didn't seem an inch of me that wasn't broken or dysfunctional in some way .
Doctors were gaslighting me ., and my quality of life was so poor , l wanted to give up . This can not all be fibromyalagia ! ! !
I happen to read something on the net , which lead to something else , and something else . I tried to correlate all my symptoms , determined to find a connection between all of them . I was so ill that l was bed bound , and had loads of time to read . I researched for weeks . Then l read something about FND . Weeks have gone by and lm still researching . That's where lm up to .
Is THERE anyone out there that has considered FND and fibromyalagia together . They do apparently co exist , and it would answer all of my combined sympoms .
I'm only at the start of this new journey, but if anyone has a opinion on this , l would be eternally grateful

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@alisonuk
I can totally relate to the myriad of symptoms ,the eventual gaslighting and searching endlessly for answers. I have not found it yet, as i continue to decline functionally .
Both of your diagnoses are actually labels given for symptoms that don't really fit the traditional medical model, as are mine.
So I have turned to another way which although has not helped yet at least has people who "get it" who research chronic pain and symptoms and are welcoming community. It is mind body or neuroplastic treatment methods based originally on the work of John Sarno who from NYU who posited that much of the chronic symptoms are not due to structural causes, many of which are found in most people as they age but the brain misfiring signsls, so while not psychogenic it is psychosomatic so that brain perceives danger dysregulates the nervous system. These types of symptoms are known to be considered by those in the field as much more intensrcthsn purely structural .there's a growing body of neuroscience research indicating the various pathways these symptoms occur . I recommend looking at the website of the Association for the treatment of Neuroplastic Symtoms, Neuroplastic.org I believe. Lots if resources and lots to find on YouTube
Look for Dr Howard Schubiner's videos on pain
He also has a great book called Unlearn Your Pain.
Although I'm way from doing well actually almost home bound , nothing else makes sense now. You have nothing to lose by trying it
Also check out Curable app.
Hope this helps even the tiniest bit!

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Profile picture for alisonuk @alisonuk

As soon as l t this ALL be fibromyalagia "
I took notice .
I had severe Crohns disease in my early 20's . Perforated colon , colostomy, loads of surgery etc . Got the t shirt.
Enough trauma and illness for one lifetime , or so l thought . I rallied , studied hard , and worked as a Nurse for the next 30yrs . My health was never brilliant , so l worked 3 nights a week on the nurse bank . So that if l was feeling awful , l wasn't letting anyone down . I continued to study , and got extremely qualified, for someone stuck on nights . I had to accept that that was as far as my career was even going to go .
@ 10 years l woke up sick , and never got better . To cut a very long story short , l was eventually diagnosed with Fibromyalagia. Text book symptoms . Prescribed all the correct medication. For a while it seemed like that diagnosis was all wrapped up . Then there were more and more symptoms . I remember saying to my doctor "is this it , or is there still more to come" over and over . As the years went by there didn't seem an inch of me that wasn't broken or dysfunctional in some way .
Doctors were gaslighting me ., and my quality of life was so poor , l wanted to give up . This can not all be fibromyalagia ! ! !
I happen to read something on the net , which lead to something else , and something else . I tried to correlate all my symptoms , determined to find a connection between all of them . I was so ill that l was bed bound , and had loads of time to read . I researched for weeks . Then l read something about FND . Weeks have gone by and lm still researching . That's where lm up to .
Is THERE anyone out there that has considered FND and fibromyalagia together . They do apparently co exist , and it would answer all of my combined sympoms .
I'm only at the start of this new journey, but if anyone has a opinion on this , l would be eternally grateful

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@alisonuk Wow I wonder if I hav this also? I wil hav 2 ask mi nu Dr. i hope U kan understan wat im typin. I lost mi spelin en mi actsodent.

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