Aa
Aa
A
A
A
Close
1830047 tn?1321667793

How many with neurological symptoms?

Do you find that your symptoms are mostly muscle and/or tendon with pain in trigger points, or do you have a number of neurological symptoms as well?  Also, I'm having chronic problems with both hands.  Has anyone else had trouble with thumbs on both hands (left gets incred stiff and right gets stuck in downward position, especially after holding something.  Wrists feel like they're being ripped off arms and I often feel like I can't hold arms out in front of me (to push a shopping cart of hold a clothes hanger).

Has anyone else ever had a reverse echoing pain?  Sometimes I forget about sentive areas on upper legs and left upper arm and scratch a "bite" (aka muscle spasm) without thinking.  Afterward it feels like there are waves of pain that increase up to a point before going away... .  I haven't even tried to explain this to doctor.

Do you all still tell doctors what is going on?  I wonder what's the point but still catch myself calling when there is something new that lasts.
22 Responses
Sort by: Helpful Oldest Newest
1830047 tn?1321667793
Just call me grace.  Now I'm dodging corners that jump out at me.  I'll take a broken toe over what so many others seem to get no relief from.  Cheers to all those making it day by day.
Helpful - 0
Avatar universal
Hi. I have been checked for lyme and it was negative. My doctor thinks I have an undiagnosable nervous system disorder that is causing all of the other neurological disorders, but I don't know. i will continue to research. Buffy, I am sorry you broke your toe.
Helpful - 0
1830047 tn?1321667793
Thanks for the input sara  (Sorry, stopped getting notice of these posts).

Now, if the neuros will clue in... .
Helpful - 0
Avatar universal
Hi to Buffy and all,

YES, it is Neurological.  I heard a lecture by the top researcher of fibromyalgia in the country, Daniel Clauw, MD at the University of Michigan.  He emphatically stated that fibromyalgia is like the "volume control" in the central nervous system is set too high.  People with fibromyalgia typically have a host of other problems caused by the nervous system overreacting such as chronic fatigue syndrome, irritable bowel syndrome, chronic headaches, chest pain, reduced pulmonary function, esophageal dysmotility, etc. and etc. Also sufferers frequently have hypersensitivity to noise, odors, heat, etc.

Meds specifically FDA approved for fibromyalgia include Savella and Lyrica, but there are others as well.
Helpful - 0
553995 tn?1332018840
@ Buffy, I'm so sorry to hear about your toe!
@ Jeni, I think we all gain weight when we are not able to be as active. I say air puts on weight LOL. I find the only thing that worked for me was to take the guilt away and make sure I eat three meals - ONLY until I'm full and snack only if I'm hungry. I lost weight that way. I eat whatever the Heck I like, but only until I'm full. Yes, ice cream :- o

I get real sad sometimes because I cannot do the things I use to. I was on the  hyperactive wild side so maybe it's a blessing in disguise. My poor hubby many times is bored to death with me as his best friend.
The Lymes dr. did diagnose through blood test that my hubby has Lymes too. His immune system is doing a much better job of fighting it though.
Then again I got four diseases from my leetle friend the Tick!


Helpful - 0
1830047 tn?1321667793
Hi all.  Sorry to just get back to you nut I've fallen and broken my big toe.  No big deal I suppose but the spasms went all the way up my leg to my hip and this is the first I've been near to sitting upright.  

I agree with Phtartist about Lyme.  My facial pains and vibrations are all but gone.  For now I'm really only dealing with left sided weakness and the pain (and humiliation) of my fall.  Yes, we are here for each other and it helps.  The past couple days I've had a really hard time remembering my own advice... breathing didn't do as much good as I'd hoped and I found myself ishing for a pill to take the pain away.  It was knowing how much others live with every day, thinking of the people I've met/read here that helped get me through.
Helpful - 0
1851710 tn?1319427202
I have not experienced the problems your having with thumbs? I do get numbness feeling in my hands on occasion,I just know from my personal experience I find myself getting very angry at myself,frustration because I can't do some of the things I use to do,& have had weight gain,which I blame on meds for slowing down my metabolism,because I am not a heavy eater at all???
Good luck to you,sorry not much help on your ?? But were all here to help each other in some way...
Helpful - 0
553995 tn?1332018840
Please rule out Lymes disease and associated diseases.
Helpful - 0
Avatar universal
Thank you, same for you. It can be trying especially when all of the doctors tell you something completely different. I hope you find some relief. Have you checked into myofacial pain syndrome. That is associated with Fibromyalgia and it effects your face and cause sharp pains down your limbs. Take care.
Helpful - 0
1830047 tn?1321667793
I have the burning feeling but mine is mostly on my forearms.  I have a very bad time with muscle spasms, now have a perm charley horse in my left calf, and my right foot wakes me with cramps (most recent issue is  increasing facial spasms).  I have memory loss and jamais vu but this hasn't been as bad for past few months.  Spacey... yes!  I do not have stomach problems at all (other than the random muscle spasm) and my jerks for the time being are under control.  I have only had one brief episode where something I ate reversed before getting to my stomach - not a struggle just oops?  I do have periodic vagus (sp) issues and you may want to check that out for some of your breathing and swallowing issues.  I have a curious little flip in my chest and have almost passed out a few times and a banded feeling around my chest and left ribs, all attriuted to v-vagus nerve stimulating other nerves/muscles.  I have literally fallen asleep while doing things.  Meds either do not help me or make matters worse so far.  

The neuro I saw at the Mayo Clinic believes that FM will eventually be more recog as a neurological issue.  I believe her.  Have you had a sleep study?  Sleep apnea can literally cause weight issues and neurological problems, even seizures.

Hang in there and remember that you may have co-existing illnesses.  This is a great web site for info and support but don't assume everything you read is 100% accurate.  As I was told, sometimes you never find out what the problem is (but that doesn't make it less real).

Good luck.  
Helpful - 0
Avatar universal
hi. I just read through your comments and I have very symptom known to man also. I have about a half dozen different diagnosis' and not one of the doctors agree with the other one. My muscles cramp up in my fingers, toes, and calfs. It is very painful. I also have the sunburn feeling on my upper back front thigh. I have mild memory loss that seems to come and go. Some days I just feel spacey, which is difficult because I generally have a very good memory and am intellegent. I deal with severe fatique. I have a tremendous amount of trouble with digesting foods. I am now choking on fluids, and I stop breathing from time to time with no explanation. My legs are spastic and they jerk along with my head and arms. Do you have these problems also? None of the diagnosis the MDs have given me does not explain most of them. It started October 2008 and has progressively gotten worse, but medication is controling my symptoms.
Helpful - 0
553995 tn?1332018840
I have Netflix and added the wedding gift, thanks.
Acker, the link was not accessible for copy.
Thanks anyway
Helpful - 0
1830047 tn?1321667793
Thanks Phtartist.  I need to try that soon.  btw... do you guys have NetFlix?  I'm totally hooked on Detective George Gently.  What do you all like?

Oh, something that may make you understand that you/your symptoms are not why doctors don't "believe" in FM would be the movie "The Wedding Gift" (think that's it).  Shows how no matter how tremendous a person's symptoms they are declared hysterical/psychological if a doctor isn't willing to admit they may not know what's happening AND it's still a legitimate illness.

One of the best things that could have happened to me was the neuro at the Mayo clinic apologizing for other doctors.  She explained it well, saying that doctors act like they do sometimes because they don't like to see people sick... especially when they don't understand what is happening.  (This may be overly kind to some doctors, but it makes sense.)
Helpful - 0
773755 tn?1328119777
http://www .unsw.edu.au/news/pad/articles/2006/mar/Hit_and_runMNE. html

(copy and paste and delete the spaces)

yes - i was only thinking the same thing last week. i am now barking up this tree. there are a couple of articles similar to this theme, if you google fibromyalgia cfs brain..
Helpful - 0
553995 tn?1332018840
Ice did not work. Only purchase 100% pure aloe Vera gel, at the health food store, pharmacy or online.
Helpful - 0
1830047 tn?1321667793
I'll try the ice next time but cold can give me the same burn.  I feel like cigaretts are too close in sun sometimes.

Where do you get your aloe?
Helpful - 0
553995 tn?1332018840
I've had the burning so bad that I found going in sunlight is impossible. Sudden sharp pain, itching and when I scratch it feels like I scratched sunburn.
I did find one topical solution when ice didn't work, straight aloe.
Helpful - 0
1830047 tn?1321667793
I was without relief (couldn't afford Lyrica and now no insurance).  Same thing for me, burning, etc.  Crawling tends to be my scalp.  Have you ever noticed any scalp-skin issues when things are particularly bad?  It seems like when my scalp gets so bad water hurts it I end up with an almost rash in hair.  Not sure though bc eyes are bad right now.  Could just be dandruff ;)  I've also been unable to vacuate bladder for over a year (if I try it just stops).  

I know we are intelligent people.  And everyone knows the brain controls the body, but I never thought of neurological problems when all this started.  Who thinks "brain" when they go to the bathroom?

You have mentioned massage in another post.  Did it ever cause increased spasms?  I used to get relief from massage but then it started to make spasms worse.  I wonder if I gave it up too soon?
Helpful - 0
483733 tn?1326798446
I definitely get neurological issues.  They went away when I was on a higher dose of Lyrica.  I've lowered it and they are manageable at this level but if I lower my dose any more they are unbearable.  I get a burning, itching, crawling, tingling feeling on my body and scalp have to drug myself to be able to sleep.  Are you on any fibro meds?
Helpful - 0
1830047 tn?1321667793
Lyme.  I think I've been tested.  I know I've asked, but I'm not sure what I was told.  I know at first they didn't want to bc I'm not in a region known for lyme.  I'll check.

As for the burning skin, yes.  I have had almost every symptom known to man-kind.  I was on the verge a couple of times of wondering if my then-doctor was right and it was just stress.  But each time I'd come close to giving up I'd actually be referred for a test that had measurable results or a blood test would create just enough question regarding cpk, ana, etc.  I'd seen three local neurologists but it wasn't until I went to the Mayo Clinic that anyone gave me a full in-office exam... no one even bothered to stroke the bottom of my feet, which was positive for cns involvement along with a couple others tests that surprised me.  

I'm back with first neuro (Mr. Migraine) bc I was diagnosed with FM within ten minutes of seeing rheumy.  However, he did warn that a lot of what I exp is cns.  Neuro at Mayo believes FM will likely fall more into cns as it becomes more understood.

Meanwhile, local neuro still says stress... and the fun goes on.
Helpful - 0
681148 tn?1437661591
The trick is getting a doctor who will even test for these illnesses.  I find that even though there are plenty of people with Lyme's and that many with Fibro and CFS actually have Lyme's, most doctors are unwilling to even test for Lyme's.  Most don't understand or know enough about Lyme's.
Helpful - 0
553995 tn?1332018840
Have you been tested by a Lyme doctor for tick born diseases?  Do you have headache, burning skin, other symptoms?
Helpful - 0
Have an Answer?

You are reading content posted in the Fibromyalgia Community

Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.