What is causing tinggling and muscle spasms all over my body? Please HELP!

octorus

I have tingling in my back. Initially I thought it was a side effect of Lyrica but I have ceased taking Lyrica and still have the tingling. I also had an episode of muscular tinnitus recently that lasted about 2 weeks. It is gone now but I have noticed with Fibro the symptoms seem to come and go and the pain migrates. It's very odd.

Ishla

Hi, welcome to the Fibro board Ladies

Jade, every symptom that you mention is fairly common in fibro, and Mom's input is also true... moves around a LOT. lol. I just wanted you to know that being scared is common as well,and you will find a lot of support and info here that should alleviate a lot of that.
I want to point out that you are on the road to recovery already by seeing your doctor. It usually takes a while to get the diagnosis because they want to eliminate anything else first, like MS and lupus for example. Please do not worry so very much though, as everything is treatable or maintainable. Not exactly encouraging I know, but you will survive. Hang in there and visit here often. You will learn so very much more from these wonderful girls (and occasional guy) than even the doctors know, because we live it every day.
Chin up!

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Jade27

THank you so much for your words of support! I have had some joint pain start up in my knees recently and I know joint pain is another symptom of Fibro so I am almost sure this will be my diagnosis. I am seeing my Doc on Tuesday and am already expecting test for Ms, Lupus, Diabetes and vitamin deficiencies which can also have similar symptoms. I am hoping for the best and if it is Fibro then I hope like you said that it is maintainable. Thank you for your invitation.. I will be sure to visit as many times as I can..

sarah92202

Please ask your doctor to test you for Lyme Disease, this also needs to be ruled out. It isn't really an option it is a necessity. You live in New York which is a highly endemic state, your symptoms fit Lyme to a tee, and it is a very serious and debilitating disease. The Tribeca film Festival this year is going to be featuring a film called "Under Our Skin" it is about Lyme Disease and how it is so often misdiagnosed as Fibro, CFS, MS. this is a serious mistake that doctors make. Lyme left untreated can be deadly. It should alsways be ruled out by Western Blot by IGeneX labs when there are symptoms like yours that so closely resemble Lyme. If your doctor is unknowledgable about Lyme or refuses to test go on the Lyme board and ask for a referral. You luckily live in the state that has some of the best Lyme knowledgable doctors in the world. Good luck with your appt, and don't take no for an answer. Fibro usually is caused by an underlying condition, you need to find out what that is. sincerely Sarah

neffie663

if you were coughing a lot your muscles loosened up now they are tightning up now that they are not being used i go through this every day the itching tingling and spasms hugs charlene

Dizzywinkle

hiya

glad I saw your post as I'm going through the same thing, just newly diagnosed too!! I had lupus first was in remission for years but kept having weird episodes of flu like illness which I now know were fibro. Been having a flare since August last year when I had to go in for TMJ surgery.. , its really making me sad and I have had to moveback in with my parents which is sad as I'm not long married! How do you get rid of the tingling and weird sensations. For me it feels like my right side is going numb or my head is disconnected from my body! I work and it feels often as though I can't find my mouse or feel fingers typing. Really scares me! So tired of feeling tired and weak and dizzy. Has anyone found anything which really helps?
xx

Jade27

Yes, I am having the same sort of pain migration that you explain. Sometimes I feel pain in my knees, sometimes my back aches, my neck aches or my ribs ache.. Very weird stuff.. I'm going in to my doctor tomorrow so hopefully I will have my diagnosis soon..

Jade27

I will keep that in mind but I really don't think I have Lyme because I never had a rash that is associated with Lyme..

kgirl04

Just wanted to throw my 2 cents in...I never had the "normal" bullseye rash either...and was misdiagnosed by the first doc I saw...turns out I did have Lyme's...not everyone gets the typical bullseye rash, or any rash at all...so, about 6 years after that, I was very sick again...turns out I tested positive for Epstein Barre Virus...got over that...then got sick again a year or so later, I was diagnosed with Fibro...then started having all the burning, tingling sensations that you are experiencing, lightheaded, and the fatigue!!! oh my god, I could barely function...I was working at the time, but let me tell you, BARELY working, and then sleeping when I wasn't at work, so I told my Rhuemy all this stuff, that I was having all these new symptoms, and he would nod his head...idiot...so I started searching for answers, went to a neuro, my pcp thought maybe I had MS...turns out I was having a re-activation of the Epstein Barre....so, now I am chronic, and probably will never be able to hold another job, because some days I can barely function, and you just never know when that day is...it is so hard to plan anything...so, basically, I would have them test you for EBV...but make sure you get the "Neurological number" because that is how they tell if you are actually sick....a lot of docs do not know that...I asked my rheumy to test me for that, not knowing about the "neuro number" and he just told me that is is positive-old infection, which was completely false! he just didn't know enough what to look for. I am now under care of a neurologist who has experience in this disease, and he was able to help me , thank god...
Sorry for rambling, but I just cannot express this enough, about this "neuro number" it's funny how we need to educate some doctors. Turns out I have infected my husband, he went for bloodwork, but they didn't test for the magical number, so he went again for bloodwork, and I called the doc's office and told them to need to test for that specific thing..we are waiting for the results, so see if he is in activation...they probably think I am a b*#@h--but I don't care....I totally feel Fibro is caused by soemthing else that hasn't been dx'd correctly or yet!..good luck to you

Jade27

Hello all just wanted to update my status. I went into the doctor on tuesday and told her about my symptoms. She told me that she will do blood work on me and that we will take it from there. I'm feeling less anxious about the whole thing but I can't wait to have the blood work done so I can know what is causing these weird symptoms. I am becoming more and more convinced that it is Fibro.. I have developed more symptoms that match Fibro( cramps, fatigue and gas/acid reflux, jaw, side of the ribs and neck pain).. Thank you all for your replies and your ideas about what this could be and for assuring me that I will be fine

TEdds83

Jade27 please let us know how you come out with your tests. I have been dealing with body symptoms too. I am ready to head to the neurologist. I already have hypothyrodism (which is a pain in the toosh to deal with at times) and I have low calcium and low vitamin D. I have been put on strong doses of vitamins to get that up. I too have weird tingly sensations throughout my body., lots of muscle twitches or spasms (everyone tells me oh, it's nothing) I know my body and this is NOT normal! and sometimes I feel dizzy and like I am not really in my body. You kind of know what I am talking about. It freaks me out and then my panic and anxiety sets in. Tonight, I am just miserable with worry and panic. I can not live like this. I want to get to the bottom of this. Please tell me how you come out. Good luck!

mary63

Hi there- sorry about how you are feeling- my God i know what you mean about wondering what is happening. I feel like some cruel neverending joke is being played on me- the symptoms just keep on coming!!! i feel really weak in the legs some days, tonight my feet are tingling and my hands a bit too- great a new symptom!!!!grrrrrrrrr- keeping distracted helps but it would be so nice to relax in my body and not feel something horrid- or several things at once!!

TEdds83

Me too Mary63. Yesterday was a pretty good day and then today I felt cruddy again. It just goes up and down. Like today I felt I as ok for awhile then I got home from work and had muscle twitches starting again and a weird burning up my neck. I got diarria from something I ate at work. I have a sensative stomach. I think it is IBS so that just adds to my frustration. I never know what each day holds. Then after dinner the only thing I look forward to is sitting with my heating pad in my chair and chatting online. This just stinks. I know there are worse things in life...but this is no quality of life with ailments everyday.

mary63

Hi there-i guess we can't say our bodies are boring- yes i get the IBS thing too and a million other symptoms- all of which i put up with as being part of my nervous persona- but boy is tingling and twitching a different and frightening addition to the mix!! i sometimes thing my body thinks- "hey she is too relaxed here- lets get her freaking out again..."
Actually the weak legs are really really scary too- funny how much we take for granted about being strong etc until you aren't. But it is still a blessing to be walking around and getting things done and having ok days-
do you feel worse on weekends?