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choctaw4ever
on 6/2/10 6:03 pm - Spokane Valley, WA
Topic: RE: Myoclonic Jerks w/ Fibro?
Oh Gina Oh Gina I have had Fibro since 1998 and yes I have the same thing and yes over years has gotten worse. I now get panic attacks when i never had them and restless les is awful I take mirapex for it and seems to help all that other stuff is meds and just fibro. Baclafin works best for me for my muscles I can taske one in am and 2 at night. sleep well it is not a automatic thing. shocks come from muscles in neck and now it is a mess and so is my spine. 2 bad discs. I take clonazapin a smaller dose of Klonopin. Works okay but nothing after a while makes you sleep except pain meds and I stay away A doc told me once that if I ever ran out I would suffer far more than I was then and addiction to them will cause a doc to stop them. So not thanks besides they too have side affects. what is the other term for Nortriptyline? I know I have been on it. Thats not Lyrica is it Stay away from that stuff it really makes you bad so does the new one Savella. I actually am thinking of getting a medical card for marijuanna even though I have never been a smoker. I am told I will sleep at night from the use so I am thinking strongly. At least it is natural and not chemical driven. Hope some of this helps
choctaw4ever
on 6/2/10 5:47 pm, edited 6/2/10 5:48 pm - Spokane Valley, WA
Topic: RE: Neurontin-anyone taken it?
I have had Fibro since 1998 and have been on it all neurontin did not work I could not get past 3 pills a day with out headaches. Lyrica is bad news yes you gain i took it for 3 or 4 years was ok all of a sudden I really got sick nerves made arms move with out my moving them dropping things and I gained 40lbs in one month. It has side affects they don't list. BEWARE!! a new one is out called savella, I would not reccomend it I got so many side affects from it I got off it right a way. I am trying to get off Cymbalta I am beginning to think all the pills make me worse. I take baclafin for muscles works great better than flexoril. They always start you off with that, why I have no clue cheap med I guess. I take Clonazapin for mood problems and it helps with depression and sleep. Mirapex works great if you get restless legs with it as well. Trazadone is an old med too. Sleep is one of those things one goes up and down with. Sometimes I do and sometimes i don't so I sleep when I am tired. My body hurts most times but I have learned to live with it exercise in the pool is wonderful if water is warm. I actually am thinking of getting off most meds take vitamins and getting a marijuanna card for pain. I am not a smoker of it but I have heard it helps better than all this pills stuff. Vicodin works some but I don't want addiction and it can make you itch after a while. Ultram does not work and well not alot does. I do know laying in bed makes you worse. try to get through pain by walking a little. standing is bad and falling seems to come with the territory so be careful. Muscle spasams are the worse. wear socks all the time for feet and don;' go for too cold or too hot. and on good days watch the road warrior syndrom. You pay three days or more for it. But we all do it" feel good go nuts" and then dive bomb into bed. Hope this helps and ask me what ever I have had it for a long time, and those dumb commercials make me mad, I have not worked since 1998 and never will again.
Gina F.
on 6/1/10 1:42 pm - Sacrametnto, CA
Topic: RE: Myoclonic Jerks w/ Fibro?
I did a bunch of research today on the internet.  I think what I have/had is called "serotonin syndrome".  There are varying degrees & it is from too much serotonin being in the blood stream.  I think doctors treat Fibro with antidepressant meds often as a first line of treatment.  I think for many people it does help.  The problem is that I was already on 2 antidepressants (I know they all do different things).  I think adding the 3rd med just screwed me up.  I had the same myoclonic jerks when I too Ultram for pain when I was on Wellbutrin & Cymbalta about a year ago.  I was told to discontinue the Ultram & the myoclonis stopped.

I am stopping the Nortriptyline tonight.  I am still really twitchy, but the big zappy muscle jerks seem to be decreasing.  I wonder how long it will take to get it all the way out of my system?  I wonder if my nerves are just really irratable now & it will take a while to calm them back to a normal state?

Ya, the "shocks" are not comfortable at all.  I would look at your meds with your Doc to see if it is a side effect or has something to do with the fibro directly.  Let me know what he says.
Gina Farrell Passion Parties Consultant
RNY 9-18-08
HW-260 Consult Wt-246 SW-218 GW-150 
CW-148  5'8" BMI 22
9-27-10 LBL & BL/BA- Dr. Sauceda, Monterrey, MX :-)
talie
on 6/1/10 12:46 pm - Dashwood, Canada
Topic: RE: Myoclonic Jerks w/ Fibro?
Is that what they're called... good to know.

I have been having muscle spasms since before I went on medication, they're not constant or anything, but usually when I'm laying in bed. I can get them all over.

Just in the last little while, I've been getting what I refer to as electric shocks. Usually when I've been spooked, but sometimes just out of the blue. I liken it to the "shock" test they did when checking for carpal tunnel. Feels like I've touched a low voltage wire.

I'm seeing my doctor... in July (he's booked for three weeks and then on vacation for four).
        
hartmac
on 5/31/10 1:15 pm - AR
Topic: RE: Northwest Ohio Fibro doc? Botox shots?
Sorry I don't know anyone in your area, but I wanted to say that I hope you find a good doctor soon and that you get the pain under control.  Although I've never done the Botox, I've read that it can be a good way to help the pain (although it's expensive and very hard to get insurance to cover). 

I'm reading Fibromyalgia For Dummies and there are several telephone numbers and websites in there regarding looking for a good doctor.  If you have that or can get a copy at the library you might look it up.

Margie
hartmac
on 5/31/10 1:12 pm - AR
Topic: RE: questions
I don't think I'd have any words of wisdom but I did want wish you well on your new journey that includes the LapBand.  I had open RNY in February 2006.  I've lost 140 lbs. and have about 30 still hanging around.  I believe that the fibro would have been worse if I still had all that extra weight.  It's bad enough with the weight I do have. 

Sorry to hear you're fibro is flaring up again too.  I hope you can get it under control and that losing the weight will help keep it more manageable!
Margie
hartmac
on 5/31/10 1:09 pm - AR
Topic: RE: New To This Board - Just Dx With Fibromyalgia
Thank you for all the information that you've given me.  I really do appreciate reading about the journeys each person is taking.  It makes me know that I am not alone.  It also gives me information on things that I might want to try or discuss with my doctor.

Good luck on the RNY surgery too!! 
Margie
Gina F.
on 5/31/10 6:19 am - Sacrametnto, CA
Topic: RE: Plastic Surgery with Fibromyalgia????

Thanks for the encouragment!  I am going to tell the surgeon that I pick about the Fibro.  I think that just because we have it does not mean we should have to walk around with saggy skin. ;-)

Gina Farrell Passion Parties Consultant
RNY 9-18-08
HW-260 Consult Wt-246 SW-218 GW-150 
CW-148  5'8" BMI 22
9-27-10 LBL & BL/BA- Dr. Sauceda, Monterrey, MX :-)
myoung8295
on 5/30/10 6:39 pm - Ogdensburg, NY
RNY on 06/03/10 with
Topic: RE: New To This Board - Just Dx With Fibromyalgia
Fibromyalgia is definately a journey.  I have been dealing with it for over 3 years.  I am currently on Lyrica 75mg 3x a day and cymbalta.  I also take Nortryptilin to help me get to stage 4 sleep.  I feel these all help keep me at a pain level that i can manage.  Definately never pain free...but functional.  I did find that in addition to my meds, aquatic physical therapy was wonderful.  The pool is 92 degrees F.  I found that i had fewer flares during that time. 

I am having RNY on 6/3/10, so im hoping that the decrease in weight will help also.

I hope you find what works for you.

Take care,

Lissa
        
Gina F.
on 5/30/10 1:24 pm - Sacrametnto, CA
Topic: Myoclonic Jerks w/ Fibro?
I have been having muscle jerks with increasing frequency over the past couple months. I went to see a neurologist.  He told me these were most likely caused by a drug interaction.  I take Wellbutrin, Zoloft, & Nortriptyline.  The muscle jerks frequency & intensity seem to correlate with the increase of Nortriptyline my PCP had me taking.  So the neurologist told me to stop taking the Nortriptyline.  But, the muscle jerks have not gone away yet.  I am down from 60mg per night to only 10mg over the past couple of weeks.

These muscle jerks feel electrical & make my limb or limbs move.  It can start in my leg, then travel up to my arm & even one side of my face with contract.  It is very annoying & kind of scary at times.  I have these at least 10 times per day.  But, I have 100's of muscle twitches or zaps that I can feel even though they do not make me physically move an entire limb.  My nerves feel very irritated & on edge.  This is often accompanied by a pins & needles feeling in my legs & feet.  It is very uncomfortable, but not really painful.

The neurologist said they can treat them with Klonopin.  But, I take that for sleep at night & it is not something I could function while taking during the day. Plus he made it seem like it was caused by anxiety.  I do not have anxiety.  I have had it in the past & I would know it if I had it.

My questions to you all is; are Myoclonic jerks part of your Fibromyalgia?  Any input would be appreciated.


Gina Farrell Passion Parties Consultant
RNY 9-18-08
HW-260 Consult Wt-246 SW-218 GW-150 
CW-148  5'8" BMI 22
9-27-10 LBL & BL/BA- Dr. Sauceda, Monterrey, MX :-)
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