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Could this be?
7 Replies
justme - June 19

Hi there, the neurologist has been treating me for occipital nerve damage, because I always have a pain in the side of my head. I was recently diagnosed with severe osteoporosis, likely caused by the prednisone I was on. Wonder though if I could have Fibromyalgia. Here is a list of my symptoms:
Memory sucks
whole body aches
get a shaky feeling inside, feels like blood sugar dropping rapidly
always hungry
bottom of my feet burn
I know the words to things but can't get them out
difficulty swallowing, almost like my throat has forgotten how to swallow.
Tired all the time
after walking a couple of blocks, my legs feel like cement stones,
have to pee all the time
dizziness,vertigo, loss of balance
tingling, numbness in arms, legs
itching on head and face for no apparent reason
so does this sound like fibro?
Thanks for your help

 

fibroprof - May 17

Of course it could be fibromyalgia. And your symptoms sound very much like mine. But the problem with Fibro is that many things sound like it. See a rheumatologist that understands Fibromyalgia well and who also has an open mind for management scenerios. Don't drop the neurologist, in my opinion. I am no doctor, but the danger here seems that your doctor could be entirely right about the nerve damage, but you could also have fibromyalgia, and fibro isn't treated as a disorder or disease, it is instead dealt with symptomatically--a management regime. So if you think the neurologist is wrong and you stop his/her treatment and start treating the fibro symptoms, you could do damage.

Again, your symptoms do sound very very similar to mine. I also have night sweats, I just gained 10 pounds in 2 months (maybe my meds, maybe my sudden inactivity--probably my chocolate addiction), and I have a neurologist treating me for Restless Leg Syndrome--a somewhat benign but truly exhausting condition where your legs shake all night. Do you remember the episode on Seinfeld about "Jimmy Legs?" Hmmmmmm.

 

justme - May 17

Hi, thanks for your answer. The restless legs is that where they jump at night and wake you up?? and where no matter how you put them they can't get comfy???
Hugs
Jo

 

fibroprof - May 20

Yup, RLS is the no comfy legs thing, Jo. I just had a terrible night with it. I lost my meds on a trip and the insurance won't refill for ten more days. I had to get up five times, had two sleeping pills trying to override the leg twitches, but instead I just got groggy and still couldn't sleep. What is occipital nerve damage by the way? Sleepily yours, fibroprof

 

justme - May 20

Hi,
I fell and hit the back of my head on the ice, and damaged the nerve that runs up the neck and back of the head, so I always have a pain in the right side of my head nowhere else. Botox has been tried, blocking and freezing has been tried. Lots and lots of different meds. Turns out now I have osteoporosis caused by one of the drugs they gave me. My bones hurt and are so fragile that any little bump can break them. I am a klutz so not sure how many bones I would end up breaking lol.
My legs twitch so that I am jolted right awake, and some nights no matter what I do, I can't get comfy, they hurt no matter what.
Hugs
Jo

 

Nancy - May 21

RE: RLS .... It can be so debilitating. I find that Mirapex has helped me, but I stil have problems with it. I so sympathize with the loss of your drugs for it, "fibroprof". I went on a trip to Canada and forgot my meds for it. It was one of the worst experiences! I didn't sleep and had to walk all day long or my legs would feel terrible. What a vacation. I'll never do that again. I keep plenty on hand now. If it happens to anyone, try asking your dr. for samples. This has worked for me.

 

Susia - June 1

Hey, Justme, have I got a solution for you. Talk to an experienced pain center about having Radiofrequency ablation where the occipital nerve comes out between C2-C3. It did wonders for me, but you need someone very experienced to work this high in the spine.

 

LORRI - June 19

HI I FELL ON THE ICE IN 2000NOW I HAVE OCCIPITAL NERVE DAMAGE WE HAVE TRIED MANY THINGS TO HELP GET RID OF THE PAIN I AM ON SOMETHING AT NIGHT TO HELP ME SLEEP BUT I NEED TO FIND OUT IF THIS IS SOMETHING I HAVE TO LIVE WITH.I CANNOT WORK DUE TO THE PAIN IN THE BACK OF MY HEAD.PLEASE HELP

 

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