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

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It took me 2 yrs to get my diagnosis 22 years ago. I was hospitalized 2x's due to the excruciating pain I was feeling in my legs, arms, back, shoulders, everywhere!! The skin on my arms, shoulders and calves were the deepest red and "throwing heat." I felt like someone was taking a blow torch to my skin and it should be melting off my body! I would hyperventilate due to the intense pain and have to blow into a brown paper bag . My symptoms increased and continued to get worse until the 3rd specialist I saw diagnosed me with Fybro and prescribed me medication and supplements. Unfortunately he turned out to be an ass so my primary kept refilling the meds. I have tried everything and anything to try to get some relief. It eventually plateaud at a 5 which I lived with for years along with all my many other health issues.
Sadly my legs got weaker. I'm not sure if it's from the fybro or all my chronic spinal issues which has caused sciatica in both my legs since I was 17 along with Osteoarthritis. It has surpassed chronic and I have permanent nerve damage in my left leg(feels like a stump) and is currently damaging my right leg. I have partial knee replacements in both knees and both Achilles tendons have been reconstructed and reattached.
My legs have gotten especially weak over the last 8 yrs. I haven't been able to walk distance (I have to use a whealchair) due to pain in my lower back, hips and SI joints.
Plus the weakness in my legs, they give out and buckle. I don't like using a walker. I push myself to walk as far and as much as I can with my cane.
I will also tell you that every muscle in my body hurts 24/7 and become so tender by the end of the day. Mornings I'm completely stiff and feel like someone beat me from head to toe with a bat. Mornings are extremely hard for me. It takes at least 2 hours before I'm moving somewhat freely and can get around. I HATE IT.
I've been living at a 7 for the last 4 years. I don't remember what it feels like NOT to be in pain. If it weren't for the Lyraca I take I don't know if I could deal with the intense nerve pain. The Lyraca make it somewhat tolerable. I take a muscle relaxer at bedtime to help me relax my overstimulated muscles. I'm up and down all night. Some nights more than others. Especially if I over exert myself.
I also take a lot of supplements and prescribed meds for all my other health issues.
I will say this, I do not let this disease or any of my health problems keep me from living the best life I can!! It's all about attitude and being positive as much as we can!
I hope my experiences helped in some way.❤️

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Me again! Lol
Have you ever had your ears examined/tested for your dizziness??
I get dizzy and then my whole world turns upside down and I fall. It feels like there is no gravity.
It's called vertigo and I have Menieres Disease in both my ears. I struggle with balance and get bouts of vertigo. My bouts can last minutes, hours and even days. I have to keep my stress level in check otherwise it flares up.
Something to look into!
Good luck!

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Profile picture for dbond4 @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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Wow! It's odd that I have some of the same health issues!
I have Hypothyroidism, I had a full hysterectomy, I have Tinnitis in both ears and have severe hearing loss. I just got hearing aids for both ears. I also experience blurred vision even with my new glasses and I have multiple spinal issues. I've had a triple fusion in my neck and will be having lower back surgery. My SI joints are shot too! I was diagnosed with Osteoarthritis in my late 20's and every joint in my body is affected, even my jaw!
I pray you find answers soon regarding your lungs.🦅

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Profile picture for loriesco @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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I get dizzy if I move too fast and sometimes as I'm walking.
I have Tinnitus in both ears now and I get bouts of vertigo. My bouts can last minutes, hours, even days. It feels as if there is no gravity and everything goes tops curvy. I use to be able to tell when one was coming but not anymore. They hit me out of no where. I have fallen due to my vertigo. Too many times to count.
I was diagnosed with Menieres 27 years ago which is what causes the bouts. It all has to do with crystals in my inner ear as you stated.
I've tried those exercises. I got vertigo as I was doing them and became very nauseous. It lasted until the next day. I won't be doing them again. Lol

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Profile picture for loriesco @loriesco

It took 30 years for me to figure out that I didn’t have OA nor RA I had gout! And a simple supplement took care of it. But then I asked the doctor to put me on allopurinol, which is what my dad took for gout. That help all of my inflammatory reactions of 30 years that were entirely ignored. Why? Because the best doctors in the world kept looking at the x-rays which presented with an extreme amount of osteoarthritis and tested me for rheumatoid arthritis with negative results. God only knows why they didn’t look for gout. I don’t have an answer, but I suffered terribly. There’s a great supplement. I ordered it on Amazon called ZAZZEE tart cherry capsules. It’s like 20 bucks and overnight. Inflammatory reactions stopped. 22 years ago I was diagnosed with fibromyalgia, but I find it comes and goes if I can get into good acupuncture and then start light exercising and breathe deep like the kind of breathing you do with Yoga the fibromyalgia goes away. If you don’t keep your muscles strong then it seems to be worse so starting an exercise program that I could live with was the most important thing. Good luck.

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I just ordered these and I’m praying they give me relief. Thanks

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yes I have that with my fibromyalgia as well.

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There still is so much we - and doctors - don't know about fibromyalgia. When I tried to explain it to doctors in the 80s - 90s, they thought I was imagining it. Then I got a doctor who actually read research magazines. It was a game changer! Just knowing what was “wrong” with me helped immensely.
I don’t have those symptoms from my fibro but I do from have dizzy spells and even fainting from my blood pressure and blood sugar (both low). The weight loss is a concern.
Keep on them. Don’t accept that they “don’t know”. And do the own research. My correct physician - and she is good - couldn’t figure out why I was having a problem with my blood vessels being enlarged. I asked her to look up if it could be a side effect if my carbamazepine. Sure enough, it’s one more side effect I have to deal with (along with the high cholesterol and not being able to take any meds, including herbal, for menopause).
She was going to do a blood test ($200-300). Instead I take B complex and lysine a couple times a week.

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Profile picture for hraka13 @hraka13

There still is so much we - and doctors - don't know about fibromyalgia. When I tried to explain it to doctors in the 80s - 90s, they thought I was imagining it. Then I got a doctor who actually read research magazines. It was a game changer! Just knowing what was “wrong” with me helped immensely.
I don’t have those symptoms from my fibro but I do from have dizzy spells and even fainting from my blood pressure and blood sugar (both low). The weight loss is a concern.
Keep on them. Don’t accept that they “don’t know”. And do the own research. My correct physician - and she is good - couldn’t figure out why I was having a problem with my blood vessels being enlarged. I asked her to look up if it could be a side effect if my carbamazepine. Sure enough, it’s one more side effect I have to deal with (along with the high cholesterol and not being able to take any meds, including herbal, for menopause).
She was going to do a blood test ($200-300). Instead I take B complex and lysine a couple times a week.

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Current physician, not correct (autocorrect)

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I am now 60 (F). I had COVID about 3.5 years ago and have been diagnosed with fibro about 2 years ago. In doing research, I also discovered that some of the issues I have been having could come from menopause/hormone imbalance.

I started working with a great medical professional who is helping me get my hormones balanced with all 3 in bioidentical formulations. I feel like my sleep is better with the progesterone...not great but better. The testosterone will also help me keep and build back muscle as well as other things as we women have testosterone receptors all over. The estrogen will help with many things. The "trick" is finding the right level of each and staying on them consistently to give them time to work and shift stuff in the good direction after years of pain and suffering.

I have pushed myself to walk 2 miles a day when I can. I stretch almost every day for at least 15-30 minutes. Hot epsom salt baths calm my nerves somewhat. I also listen to yoga nidra sleep meditations at night to help me focus and sleep...many on youtube. I like yogi Bryan as he has some with no music in the background.

I take magnesium and iron to keep my levels where we want them.

I have bad flares still as I am just at the beginning of my complete HRT journey...but thought I would share.

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