Fibromyalgia: Anyone out there with the same diagnosis?

Thank you

Hey 507,

First I want to say good morning and I hope you are feeling as well as you can.

I, too, am getting a runaround from docs when I keep going in because 1) I have Constant leg cramps and fasciculations. I say, Hey doc, every night I have cramps in: Shin, calf, arch of foot, hamstring...BOTH legs.... SIMULTANEOUSLY. My "spasms" are visible from afar. It looks like there is a sea serpent under my skin. I joke and mention the movie Aliens... Neurologist says, You have fabulous muscles. I say, What? I don't exercise. those are "shapely", they are in constant spasm. Rheumatologist says, Your blood work says you don't have autoimmune disease. I say, I KNOW. I'm the one who said I don't have any symptoms of autoimmune disorders. Why is my ANA titre 1:2560, though? Pain Mgmt Psych says, You have to will your pain away.

Meanwhile, now I have the leg cramping and spasms even during the day. And now also in my glutes. And, wait for it, In My Neck. My GP literally said these words, "Yeah, that's just your fibromyalgia." The rheumatologist told me to take Aleve and Tylenol. What? I already LIVE on Aleve and Tylenol. The neurologist gave me Gabapentin. It does nothing And gives me stomach pain.

Before my FiBrO (that's called sarcasm font) dx, I had the GI issues. Endoscopy, colonoscopy, etc. I tested positive for H Pylori. I tested positive for EBV. High ANA (at that time, in 2009, it was "only" 1:640. Now 1:2560.)

The amitriptyline they first gave me made me very dizzy and made me no longer remember dreams. (Sad, because I always had amazing vivid dreams.) Whatever the antidepressant they gave me made me want to kill myself. I've been on four different antidepressants since.

A few months later I developed a neurologic itch.* NOTHING alleviated it. I was literally scratching my skin off. They finally put me on valium all day so I could maybe relax. It lasted about 3 months. It put me in the ER twice, UC multiple times. GP, Allergist, Neurologist, Dermatologist, Psych... no one could figure it out. *I have only recently determined through my own research that it was neurologic. The Neuro doc at that time did nothing but hit my knee with the hammer, see that I had normal reflexes, and sent me on my way.

ANYHOO... all this to say, I truly understand your despair, though I still have some determination left in me.

My words to you: Please do not give up!

Look for any, however tiny, moment of relief or joy. (right now a mockingbird is going on at the top of his lungs. I used to dislike mockingbirds because they are so Loud, and Literally never shut up! haha. But now I find joy in it because they can go on for so dang long!) I wish I had magic words or a wand to make things better for you. Just know that you are Not alone in your pain, regardless of how inept doctors seems to be. Sometimes b*tching about it or crying about it or talking about it to others who know can at least "get it off your chest" for a moment.

Again, don't give up! <3

To all of the fibro people. I have been dealing for many many many years. Best thing I have found for all symptoms is p.t. Yes I said it ! I thought my doctor was nuts when he told me to exercise and go for a walk when I could barely walk from my bed to the bathroom. Amazingly I followed his orders and now I am up and walking my pup every day. Start out slow even if to end of yard and back. Each time take a few more steps. Don't push to hard to fast or it will set you back. Also I just recently started taking cbd oil gummies and oh what a relief in all my trigger points and stiffness. So far no side effects but increased energy and better mood. Our mental affects our physical and vice versa. Been fighting this for (well diagnosed with it) for 25 yrs. Been suicidal and not worth living thoughts many years. Today I'm enjoying life with my grandkids and believe me they are active. Don't get me wrong I still have to know my limits on how far to go. I do physical therapy every day. Am off all pain meds. They are good short term to bring you out of a flare but since I found and tried the cbd oil products it's been a wonderful change. To each their own as I was against it all to begin with but I got very desperate for anything to help. I use ones that have no "thc" in them. I've been on about all the drugs they offer and temporary relief then have to take another pill. Then went to upping the dosage amount. All TBE meds caused more issues and conditions. I don't recommend this at all -- but one day I decided enough was enough and stopped all meds cold turkey. I'd had it. Didn't care if I lived anymore. I got on a healthy diet and started p.t. and as said just recently started cbd oil products. I have never felt better in all these years.
Look we all would like a "magic pill" to take care of our problems and illnesses but sorry there is no such thing. It's time we as sufferers take responsibility for how we've treated our bodies and not eating proper and no exercise and switch it up. Our bodies were designed to move and be active so it's what we got to do. The food industry has made our food junk with all processing it takes all the good stuff out and buts in all these preservatives and such things we can't even pronounce and says it's good for us. Bull hockey !! It's up to us to take back control of what we do and how we eat to be healthy again. Not trying to be harsh but I've looked for that miracle pill myself for lots of years--its not out there. I decided to take control back and here I am finally enjoying life again !! Best of wishes to all. It's not an easy road but it's worth it!!! God bless you all !!

@lfisher66
Regarding your calves- we’re you tested for any muscle disease? Blood test or even biopsy?

I had a rheumatology blood workup. "No inflammation" she said. The only thing unusual in any of my blood workups has been the 1:2560 ANA, which apparently goes along with the poz EBV.

Neuro tested for (to be honest, I don't know, but he stuck wires in the muscles connected to ta thing like you check the current in your electronic devices. haha! ) and said I am fine.

ALL the docs say everything is fine. In fact, I'm pretty sure fibromyalgia is greek for¯\_(ツ)_/¯

Why, what were your thoughts?

aha. I looked it up. He did an Electromyography, which he said was normal. Oh, believe me, I've heard all the questions: Do you drink enough water, do you stretch, do you eat (insert wonderfood).

Because I also have started to have what feels like RLS in my Arm and hand, along with the neuropathic itch/pain, I've asked him to test for MS. Honestly, I don't think it's MS, but it certainly isn't "normal". (Then again, not much about me is. haha!)

@lfisher66 - It’s good to hear that you had an EMG. Did you also have a nerve conduction study?
My son went through this testing when he was diagnosed with Fibromyalgia at age 10.
There are blood tests too that help rule out illnesses such as some forms of muscular dystrophy.

Does fibromyalgia have the same symptoms as a bad case of inflammation in the hands?

@davej - I don’t think so. To my knowledge there are no so called trigger points in the hands.
What kind of inflammation do you have in your hands? Related to the joints?