New alarming symptoms

Posted by meryw @meryw, Apr 16 4:28pm

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

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

Don't pick up, no matter what! I, too, am a recovering addict (22 yrs clean this year!). I hear your pain!

Get on that waiting list for a primary doctor.

What I'd suggest first, since Fibro gets triggered by stress, anxiety, and depression, see if a doc can help you with the depression and/or anxiety. That was my first breakthrough. We know that a lot of addiction comes from attempts to self-medicate. Make sure you stay connected with your recovery program(s). (I go to NA, but I know there are others now.)

Make sure you keep moving. I can tell you where laying in bed or on the couch full time gets you. Stiff and atrophied. It will help you get to feeling better even if you have to scream while doing it.

Finally, and I CANNOT recommend this for other addicts, but my experience - After about 10 yrs clean, my doctor finally prescribed some low dose pain meds, only occasionally, very short term, when absolutely, absolutely unbearable, monitoring me VERY closely. AND I was to have a trusted friend or family member keep those meds for me, going to them for any/every dose to keep me accountable. No more than 1/2 dose, no more than twice a day, no more than 3 days in a row. Just enough for me to get up and function. I've only had to do that a few times over the years.

But you know the danger. That could have triggered cravings and taken me right out. I might have another run in me, but I don't know if I have another recovery left in me.

Pamper yourself, do things to distract yourself from the pain, make sure to get out of the house so you don't get stuck in your head with that pain.

It will ease up. Maybe not totally. It'll come and go. But, I feel for you, dear. Deeply. And I hope this episode will ease up fast!

Praying for you,
Vicki

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@loriesco

A simple uric acid level blood test will tell you if maybe you have gout arthritis causing inflammation pain. Also asked to be referred to an endocrinologist so they can test your adrenals. I had the same thing happened to me and it was a function of cortisol and adrenal gland output. I have to stay away from Cortizone injections which I get for my degenerative disc disease. It’s really hard to know what to tell you because you have only given a brief outline of your whole history. The best thing I can offer is to get some books read about the type of things you’re going through get educated And take those resources to the doctor to get referred to specialist and have them test. Many years ago I found out I have an L carnitine deficiency – intercellular. It doesn’t show up on the cheap old blood plasma test that the doctors insist on using. Periodically I would stop taking the carnitine because I felt normal and then all my symptoms came back. Finally, I wanted my doctors to diagnose the carnitine insufficiency. But they are absolutely lame. They won’t do the deep dive and spend the money and try to build insurance anymore and not get paid. So I just take the all carnitine every morning and I have no fatigue and dizziness. If I don’t take it, I get very tired. But my adrenals don’t produce enough whatever they’re supposed to produce. My endocrinologist said that was OK. I’m at the low end of normal. But I know after 30 years is that’s not normal that’s low so that lower adrenal output is what’s compromising my energy. He’s a jerk and I just work around him because I have other stuff going on.. I shouldn’t say he’s a jerk. He’s very confident, but the doctors just don’t care enough because they have such an overload of patience so if you show up within the wide range, they’ve determined is normal even if it’s one point below being outer range, they will tell you you are normal. When I get them to fix the problem and I can be very demanding my numbers go right to the center of normal! What I’m saying is you’re going to have to advocate for yourself. I just went through three weeks of vertigo dizziness. I don’t know why my doctor just wrote down in the notes. But I increased my exercise and did a bunch of other stuff and the vertigo finally went away through the help of the doctors. Don’t rely on them too much when they aren’t doing their job.

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I have positional vertigo, an inner ear problem. Something with the gyro crystals in there. It'll come on for a few weeks, then just go away for sometimes years, but it comes and goes.

The treatment to get it to go away faster is, get this, physical therapy, moving your body/head positions around in certain routines, (Epley Manuever). Seems to me it traps the little loose crystals in a stable place until they get reabsorbed?

Anyway, sorry to hear you're having so much trouble, and I hope your feeling better soon.

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@vcarter20902

I have positional vertigo, an inner ear problem. Something with the gyro crystals in there. It'll come on for a few weeks, then just go away for sometimes years, but it comes and goes.

The treatment to get it to go away faster is, get this, physical therapy, moving your body/head positions around in certain routines, (Epley Manuever). Seems to me it traps the little loose crystals in a stable place until they get reabsorbed?

Anyway, sorry to hear you're having so much trouble, and I hope your feeling better soon.

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Gout crystals and the ear canal crystals are two different things. Yes Wiley works great but the crystals don’t get transformed.

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@loriesco

Gout crystals and the ear canal crystals are two different things. Yes Wiley works great but the crystals don’t get transformed.

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Did I reply to the wrong person? I think so, sorry!

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@vcarter20902

Did I reply to the wrong person? I think so, sorry!

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Ha! It’s okay, dictation auto corrected changing Epley to Wiley! I did not notice!

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Im 70, 32 yrs sober and never feel like picking up a drink —but I do have plenty of rx’s which allow me to function. Im not sure if you have FMS. Please don’t go out. Keep calling help lines and try to see a pain mgmt doctor or rheumatologist. Good luck.

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@dbond4

I’m actually currently experiencing them now. I’m 43. Diagnoses 11 years ago fibromyalgia,total hysterectomy hypothyroidism and now irregular heart rate so chest pain. Dizziness when heart rate goes low now I will tell you I have always had the worst muscle pain. But it is currently getting worst pretty sure I had a heart attack. D-Dimer test came back a normal ct came back no blood clots but 4 nodules in the upper right lung 3 ground glass Been dealing with nauseous bladder hasn’t been working roght for a while. Droopy left eyelid,blurry vision and hearing loss with throat swelling and pain
The last neck Miri was cervicle spine arthritis. But I’ve been suffering with that too
And I have to wait 3 months to get more information on what’s in my lungs depending on if there is growth

Sorry the response is so long. I just wanted you to know I understand

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It sounds like fibromyalgia is the least of your problems. Sounds like you have had a heart attack! And those irregular heartbeats can send tiny clots into your brain to produce strokes or TIAs. That droopy eyelid and blurry vision sound suspiciously like a stroke to me also. Don't trust all the medical tests; it's probably worse than they tell you but will take years to find anything useful out so don't hold your breath. I've had a hysterectomy, a total pelvic rebuild 10 years later and have a slightly underactive thyroid; but those alone shouldn't be cause for worry.
Are you on blood pressure meds? Those can cause a slow heartbeat if you don't really need them or take more than you need. You are much too young to be going through all this! My heart irregularities and stomach issues were caused by a severe head injury that broke my jaw and knocked my Vagus nerve out of whack for several years resulting in bad headaches, heart arrythmias and miserable stomach issues not to mention several expensive dental treatments to fix my teeth for a dropping jaw.
Doctor's won't test for Vagus nerve problems unless you make an issue out of it; even then it's a crap shoot. That alone can really wreck havoc with your health! And, of course, insurance companies rule the doctors so their hands are tied in many cases.
I managed to diagnose my own issues watching U-Tube videos (10 years after the head injury) and drawing my own conclusions, putting it all together. Too little too late though. My stroke last year should have killed me but God had other plans for me. It was a total occlusion of the Basilar artery (only 1% of ALL strokes in the world are basilar). Today I do much less but am still able to cook, drive and keep house (somewhat). Life gets better as I continue to heal from the stroke. I hope you keep searching and learning how to help yourself because you know you better than anyone else!

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Have you seen a neuromuscular neurologist?
Have you had EMG/ nerve conduction test
Small fiber punch biopsies?
It sounds like neuropathy
I was diagnosed with fibromyalgia in 2002 then I was diagnosed with severe axonal sensorimotor peripheral polyneuropathy
Small fiber neuropathy
Neuropathy causes dizziness and balance problems plus what you are describing.

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@vcarter20902

Don't pick up, no matter what! I, too, am a recovering addict (22 yrs clean this year!). I hear your pain!

Get on that waiting list for a primary doctor.

What I'd suggest first, since Fibro gets triggered by stress, anxiety, and depression, see if a doc can help you with the depression and/or anxiety. That was my first breakthrough. We know that a lot of addiction comes from attempts to self-medicate. Make sure you stay connected with your recovery program(s). (I go to NA, but I know there are others now.)

Make sure you keep moving. I can tell you where laying in bed or on the couch full time gets you. Stiff and atrophied. It will help you get to feeling better even if you have to scream while doing it.

Finally, and I CANNOT recommend this for other addicts, but my experience - After about 10 yrs clean, my doctor finally prescribed some low dose pain meds, only occasionally, very short term, when absolutely, absolutely unbearable, monitoring me VERY closely. AND I was to have a trusted friend or family member keep those meds for me, going to them for any/every dose to keep me accountable. No more than 1/2 dose, no more than twice a day, no more than 3 days in a row. Just enough for me to get up and function. I've only had to do that a few times over the years.

But you know the danger. That could have triggered cravings and taken me right out. I might have another run in me, but I don't know if I have another recovery left in me.

Pamper yourself, do things to distract yourself from the pain, make sure to get out of the house so you don't get stuck in your head with that pain.

It will ease up. Maybe not totally. It'll come and go. But, I feel for you, dear. Deeply. And I hope this episode will ease up fast!

Praying for you,
Vicki

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I am confused in the posting they mentioned nothing about drugs or addiction. Why are you telling them not to pick up? Pick up what?
There are several things that can cause this person’s problems and people reply about addiction. Very Confusing this persons asking for suggestions to medical problems.

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Hi! Maybe you had the post I was replying to mixed up. I was replying to @jlbh , 4 days ago, who starts out her post:
"I'm 53 yrs. Old, a recovering addict and have such severe...", and ends with "I'm to the point of relapsing, I have worked to damn hard to go backwards..."
She was struggling to find timely medical help and was desperate, starting to think about illicit drugs.
"Don't pick up" is a phrase used in drug recovery programs, meaning if you don't pick a drug up and put it in your hand, you won't use it.
People unfamiliar with addiction and recovery. may not have understood some of what I was saying. She will.
Addiction is a physical, medical disease, and the extreme pain of fibro can be a powerful trigger to go out and find your own "medications."
I hope this helps.

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