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Twitching - anyone else suffer?

Jul 01, 2015 11:26 AM

I'm very new to this community (joined today), so please bear with me if this has been asked before.
I recently started yet another new medication, for twitching.
The GP said it was probably another effect from the fibro but it's not something many seem to mention so would really like to know if anyone gets this.
Only recently started the Baclofen and GP said the Nortriptyline should also repress it but I've been on that for years before the twitching started. Currently on a tiny dose of half a tablet twice a day to increase to three times when I'm ready. This med makes me somewhat heavy headed and sleepy so taking my time over the increases despite the constant twitching inside and out.
If anyone has any other ideas for repressing the twitches I'd gladly try anything!

Jul 01, 2015 11:29 AM

Omg fibro is lyme misdiagnosed. Trust me. Find me on fb

Jul 01, 2015 1:12 PM

Yes I call them jerks, at first they were mild, when my pain level is high I noticed they would come more often, whole body jerk were the worse. I have Graves' disease which some can be attributed to, medications also have there part. I have taken to working my hands more, and I have a awesome family ( thank God) who when they see me in a bad way they take control. I also changed my diet which I must say worked. I stopped meat, when I want the taste, I have a bite, no red meats at all. I have Aracknoiditis which can have shakes too. I turned 60 and the walls fell down lol.

Jul 01, 2015 3:09 PM

If you have Fibro, you should probably be tested for Lyme. Fibro is a symptom, not its own disease.

Jul 01, 2015 3:10 PM

Also, I forgot to say, I have Lyme and I twitch sometimes. The only thing that helps it is anti inflammatory meds because usually the cause of my twitching is pressure on my nerves due to swelling around my spine.

Jul 01, 2015 3:49 PM

Welcome PJB. By twitching do you mean occasionally quick jerks? I've had fibro since 08'-09'. I just developed tremors, uncontrollable where my hand looks like a slinky held diagonally. Its mostly the right arm & hand but sometimes both hands and jello wobbly feelings in my legs. I'm being sent to Mayo in two weeks.

I've been on nortriptyline on & off since 1988, but most recently over a year. It does absolutely nothing for my fibro. It just helps the depression and sleep at night.

Check out everything suggested to you. This is a wonderful community filled with knowledge, suggestions, & compassion. I don't know if I'd be able to function without it. I'll add you to my prayers. 🙏🌼

Jul 01, 2015 4:07 PM

I get twitching but I usually call it clenching.
My muscles feel like they get stuck and I can't move them.
Sometimes potassium helps.

Jul 01, 2015 4:25 PM

I know how u feel ferretbandit I get spasms in my legs mostly thighs. I get a lot of twitching/jerks in arms or hands.

Jul 01, 2015 4:27 PM

Welcome PJB you have come to a wonderful community filled with caring and compassionate people.

Jul 01, 2015 7:10 PM

When I was taking gabapentin it caused me to jerk. Bas5I would be almost asleep and my whole body would jerk. Literally move the bed enough to wake up my fiance. Stopped the medication and the jerking stopped. Then the doctors gave me 50 mg amitriptyline which is supposed to help with pain as well as cause sedation and bam jerking again. Stopped that pretty quick. Since then no more problems with jerking or twitching. Hope this helps you. By the way welcome to our growing family!

Jul 01, 2015 8:10 PM

Neurotin and gabapentin are the same thing. They have a black blox warning for causing perm nerve damage and worsening rls and neuropathy. I took 600mg for yrs. My tingling and leg pain stopped when I stopped it. Look up pheni tropic. Look up low dose naltrexone. Also the standard test for lyme misses lyme 50-70% of the time. Infectious disease drs are terrible. Lyme is worse than the aids epidemic ever was. Please youtube dr Horowitz 8min video on lyme. And get teated through igenex.

Jul 01, 2015 9:49 PM

LMB, It seemed ironic that I started gabapentin three days before my tremors started. Without telling the doc I came over, just to see. My tremors address worsening more each day/week. My doc knows about me coming off and he told me to stay over until Mayo sees me. I was checked for lymes when they tested for everything else. I have Sjogrens and they suspect possibly MS, but I don't have lymes. My symptoms don't point towards it either. But this Sjogrens is the points! 🙏🌼

Jul 02, 2015 9:19 AM

Thank you for your replies and well wishes.
My insides often feel like they're trembling even when I'm stationary. I get it day and night now. I didn't mind getting it occasionally at bed times but all the time is maddening and very disruptive. Makes everything harder to do and more painful.
I've heard of the Mayo clinic but it's in America isn't it? Sadly, I'm bound to the NHS in England, which is mostly ok but a move to a new GP has left me without a good supportive doctor.
I've heard of the connection between lymes disease and fibro but never been tested for it. They're reluctant to do more than what they consider necessary here.
I shall read through the info regarding it and see if I can't convince a GP to test.

Jul 02, 2015 10:59 AM

PJB, yes Mayo has multiple locations, all in the USA. I'm very blessed my husband's job provides good quality insurance. It breaks my heart when I see others unable to get the care they need for lack of either good or any insurance.

The all over quivers you described, I've also felt that way several times in the past two months. You're right... It's very disturbing to feel that way. If Mayo makes a connection/diagnosis (trying to stay positive) I will let you know. On the meantime do check into that lymes info. As of now the docs I see do not think I have it.

God bless! 🙏🌼

Jul 11, 2015 2:59 AM

Hi ladies, reading all your comments, I'm a bit behind, the inside tremors I get feels like my mobile phone is going off inside my skin. It's getting more and more bur I'm on so many drugs don't want anymore. Amytriptaline was a nightmare for me worst side effects ever. I thought Lyme disease was caused by tics or am I on the wrong track cos if so don't think UK is prone to them. Hope everyone is having a twitch free day x

Jul 11, 2015 9:19 AM

Mumof3boys, Lyme is caused by the bite of a deer tic. There does not have to be an infestation of them but where there is wildlife, there will be their little tag-along friends with them. It's odd that you described your insides feeling like that because I get that almost every morning when I wake up. It's almost like a mobile phone on vibrate rattling across a wooden table!! My heart rate does not elevate but my insides feel like they are quivering. I have a dr. Appointment Monday morning to have my annual physical. Pain management and my other docs want me to get tested for Lymes Disease, Lupus and MS. I also have been having issues which I've never had before with my blood pressure. I know that is MY doing because I've been on high tension worrying about every single little thing that hasn't even happened yet. I hope you get the answers you need and I'll let you know what my doctor says about the twitching. I hope you have a peaceful and twitch free day.

Jul 13, 2015 8:36 PM

Yes!! My eyelids and my right arm twitch when I get too fatigued.

Jul 13, 2015 9:18 PM

Yes, twitching of eyes, arm/shoulder muscles when tired. Sometimes all over body spasm that is random but that happens less now with Topamax. I get spastic bladder and intestines too but that has more to do with my interstitial cystitis and IBS. it feels awful though, really twitchy and painful. I have been tested for Lyme and it was negative, although my sister is positive and recommended I get checked after her diagnosis. I get hand tremors too which increase as I get fatigued. Took Gabapentin for a bit, but hated it. Same with Elavil. Topamax works pretty well for me at lower doses, but it does cause numbness in limbs.

Jul 15, 2015 9:02 PM

I get the twitching/clenching feelings in my arms that comes and goes. Usually lasts a few days and I haven't found much that helps. I do get the whole body Jeri at night as well. Any ideas for relief besides meds?

Jul 16, 2015 8:45 AM

Fibro is a diagnosis of exclusion. It means if they can't find anything else, they usually call it that. The only defining criteria that sets it apart is the trigger points. That is the part that makes me mad is by how doctors are giving away all theses fibro diagnosis without the trigger points. That use to be the defining sign. Now I feel it is just because they are to lazy or trying to save money on Medicare or contracts with insurance companies to pursue a real diagnosis. Call me paranoid. I guess I am a little bit. I don't mean to be. It just seems like what is going on, especially in my case. I was getting extreme aches with fever from time to time. Felt like I had the real influenza for a day every few days. It would go into remission for a while. My blood would show inflammation. They could find nothing solid. I didn't have any sore tender spots on me. Just aching all over, muscles and joints. They called fibromyalgia. I still don't believe. I have seen people who suffer with fibro. I suffered for a day to a day and a half at most evert several days. The fibro people I knew had longer bouts of pain. So I think they hand out that diagnosis like Halloween candy sometimes. I am sure most of you all have it. I find most of us on here really research what is going on with ourselves.

Jul 16, 2015 7:42 PM

Profiler, I agree w/you about the diagnosis. I do have the trigger points, but I still feel it's a cop out answer. I hear of people that can't work or hardly move w/fibro, yet I can move (wwith immense pain at times). I feel like I have an in between diagnosis that just gives my pain a name, whether it covers all of my pain or not.

Jul 16, 2015 9:43 PM

Faerygrl, I understand what you are trying to say. It seems like doctors "give up" because they cannot figure out the root cause of the pain. I was diagnosed with fibro many years ago and I DO have the painful trigger points (each and every one) and I have also been diagnosed with several other autoimmune issues that cause horrible pain and fatigue. I don't think that any one specific doctor has a full understanding of pain, it's causes or its cures. (Some have no cures and I don't think there is a "cure" for pain other than finding the true root of the problem and hoping that there is a cure for that). I'm sorry you suffer, it's so hard. Hang with us, you'll find many who have similar problems but definitely ALL with pain from one thing or another. I hope that you can find comfort in knowing that there are people here for you at all times who "get it" and that you can vent, rage, cry, tell stories, laugh, etc and you will never be judged and you will always get folks to answer you and try to support you. I'll keep you in my thoughts and prayers. I wish you all the best. 💕🙏🏻🌻

Jul 17, 2015 9:27 AM

Alwayzinpain , thanks so much for those encouraging words! The hardest part is getting people to understand. Because I can still move and stuff, they don't understand that I'm still in pain. I'm usually good about not letting it affect how I am, so when it flares I tend to be quiet. That's when they think I'm being moody and I have to go through the whole thing again! It's frustrating, but for the most part, I do have support which helps. So far, this community seems awesome and I'm so glad I found it! 👍

Jul 17, 2015 9:53 AM

Faerygrl, while at Mayo we stayed at a beach hotel. It was very difficult for me to struggle walking in the loose sand and keep my balance. I have out of breath easily and stopped several times. But I was determined to walk on the beach one last time. As my hubby was helping me climb the elevated dunes back to the hotel, a young mother and her daughter were walking out briskly to the water. Many paces behind was her mother/grandmother (about 50-60). She was struggling to walk through the loose sand with an oxygen tank! Her daughter shouted something about hurrying up, and the lady yelled back "I'm doing the best I can." I spoke up and said to her, "they just don't get it how difficult it is for those like us when it's so easy for their healthy bodies." She stopped and looked at me with a smile and said thank-you for my understanding & support, adding "No they certainly do not!". It's a sad fact of life that " out of sight is out of mind " to them is "if I can't feel it then it's doesn't exist.". 🙏🌼

Jul 17, 2015 1:46 PM

Flappyslady it's true. Both the fact people don't understand it and how difficult it is to walk on sand!
I live in Cornwall, UK, so we're surrounded by beaches on three sides. Today I went to a local beach and the sand ranged from soft and loose through to wet and sinky. And rocky. I actually found the rocks easier because I could place my crutches in to crevices and let them do the work. 😀
Hurt like blazes this evening though.
Don't know about anyone else, but my extremities get cold when I'm this tired and hurty. Bed calls.
I am astonished at the thoughtless disregard for that poor woman you met. How can family be so blind to the suffering of a loved one?! It is truly saddening to think of so many trying to live their lives without the support they clearly need.

Jul 17, 2015 2:59 PM

I agree PJB. I'm in the USA and the SE Atlantic beaches I've been to so far, you walk out of the hotel and downhill to reach the beach. There's always a good 100' of more of soft sand dune to cross to get to the packed sand. Now the Gulf beaches are flat and straight, and much easier to walk. I've been to one California beach, Laguna I think. It was rocky to, and the rocks were even in the water... Total opposite to SE coast. Our kids didn't like it but they were very young.

I felt so bad for the lady. We later saw her sitting under an umbrella from our balcony. I'm sure getting uphill was much harder and the daughter wasn't there to help. What's more sad is what she was teaching her daughter. 🙏🌼

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