# Involuntary Twitches



## Guest (Jul 21, 2000)

I was diagnosed with Fibro. Twenty years ago, when it was called Fibrositis (Don't know how to spell) Then it was called a man's disease, now I understand that more women have it. I'm taking 50mg of amitriptyline at night and have been on it for several years. I now have started having an involuntary movement of my right arm. It jerks when I least expect it to. Do you know if this is a side effect of the med. or a symptom of the Fibro. Does anyone else have these. I have also had two different flare ups when I couldn't walk. It felt like bad catches in my lower back and hips. This lasted for two or three weeks. Since these, I have really slowed down and don't over do it anymore. My body, if I listen, tells me when to rest. No more big cleaning or lifting projects with out several breaks. I think that the fibro has now moved into my feet. My heals hurt sometimes really bad. Sore to walk on and my feet get really stiff. Do any of you have these symptoms? On a lighter note, I feel better than when I was younger and my children were young. I don't get the bad headaches nearly as often. I know they had to be caused by tension. I would really like to stop taking the amitrip., but don't know how I would ever be able to sleep. I get some relief working on the trigger points with the tennis balls, buy this doesn't help the sleep. I also get a pressure in my left ear and it feels like a heater has flipped on in that ear. The ringing in that ear drives me crazy. Anyone have any of these wierd symptoms? My doctor, now probably thinks that I'm crazy and make this stuff up. Thanks, it feels good to know that there are others out there like me. Cathy


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## Guest (Jul 21, 2000)

Cathy, I completly understand what your going through. I have problems with my feet too. Also I have estremly painful knees. They took an MRI of the knees thinking I would have to have surgery on them. But the MRI came out alright and they said it's the fibo or myo fascia. My knees lock tight every night and I wake myself up screaming all the time. Then it's so painful to straighten the knees. Things keep popping up like this all the time and it always seems to be the fibro or myofascaia. I get to where I don't want to go to the doctor whenever I'm in pain because I always get the same answer. It's very frustrating as you well know. But we still have to have them checked out just in case it's something different. But yes, all of those things can be from the fibro. But I'd get them checked out just in case. Good luck to you and your right also about your body telling when to stop.I need a lot of rest and I think we all do. Pace yourself slowly and don't push yourself or you'll pay dearly. thanks for the post, it's nice to know I'm not the only one haveing these problem. Hope you see a doctor. I'd like to be off my medication too but I know I couldn't make it all. We do what we have to do to make our lives as easy as possible. Don't feel guilty, do what you have to. Bye and good luck. jfaith.


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## Guest (Jul 21, 2000)

Cathy, welcome to the group. I was diagnosed with fibro in Oct 98.I was on elavil 10mg for a few months and I just didn't want to go any higher so I stopped taking it when it quit working at that low level. I didn't have any problems with it such as side effects though.Those bad catches sound more like fibro to me. My hips hurt off and on and I have problems with my neck, shoulders and upper back. I hate those catches. You're afraid to turn any direction that you won't move again!!!My feet hurt also and yes, my heels have hurt off and on.Now about the ear thing. Are you clenching or grinding your teeth? I was not aware that I was clenching my teeth at night and I had the exact same thing as you. I would have a pain that was excrutiating rip through my left ear and then go away. This would happen off and on, the burning, etc. I now wear a night guard to protect my teeth when I clench. I do it so hard, though, sometimes my jaws really hurt during the day.You might want to have your teeth looked at next time you are at the dentist! Grinding he can see but clenching he really can't see.Hope this helps a little. Come back and talk to us. Lynne


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## Feisty (Aug 14, 2000)

Cathy, Lynne is right. Have that pain in your ear checked out. I went thru that and ended up with TMJ. I had a lot of pain in my ear and the whole right side of my face. It got so bad that my face on the right side would be red and feverish. Come to find out, the Temporomandibular Joint pad was tearing. Once it ripped through, the pain subsided, but I needed surgery to remove the old pad. The Oral Surgeon did not want to operate at first, but I said what have I got to loose? I can't live this way. When they got in there, the jaw joint had completely slipped the disc and I was up and over. They inserted a little silicone pad to serve temporarily for a cushion between the jaw joint while it healed. The Surgeon apologized to me afterwards and admitted that I had been in a lot more pain than he thought I was. After six months, the silicone pad was removed, because scar tissue builds again and that is what is serving as my pad now. That was 12 years ago. The left side hasn't been done as yet. The pain isn't as bad. In fact it hardly bothers me any more, but my right side still gives me trouble. I am also a clencher. I catch myself doing that all the time. I don't grind at night, though. I just seem to hold my jaws in a clenched position to tolerate the pain I have everyday. I use to go for biofeedback and that helped me realize when I was doing it. And I had to learn how to let that jaw relax again. It's not easy to do. Sometimes I am very good about it and other times, well.... My feet bother me lately, too. They use to ache sometimes and the toes and ankles always needed flexing because they would feel stiff, but lately my heels and arches and balls of the feet have been hurting also. Your arm twitching could very well be just muscles trying to move and relax, or whatever, but I would have that checked out to rule out other things. I know what you mean by the doctors thinking we're making up these things, but it's high time they get to know us better and realize we are hurting!!! And badly!!!! Take care and keep in touch. Karen


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## Guest (Jul 22, 2000)

Cathy,This ringing in the ears is indicative of a condition called tinnitus. Here is a website to click on and learn more about it. http://www.entnet.org/tinnitus.html Also, to learn more, up in your browser address line type in: http://www.altavista.com That is a search engine and you can put in any word or group of words and the engine will search the web. There is a lot more about tinnitus out there. My ex son-in-law has it.I'm glad this came up about the teeth clenching. So this is part of this syndrome, eh? I've been meaning to ask about it. I've been doing it for so long, I don't even remember when it started. My "sure cure" is simply to take my dentures out.







Of course, that's NOT an option for everyone. LOL Now that I'm ungainfully unemployed I go for much of the day without dentures. But if I'm wearing them, I have to make an effort moment by moment to stop clenching. That, in itself, is tiring. Is there no end to this madness???calida


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## moldie (Sep 25, 1999)

Welcome to the board AnglM794. I really don't have much to add as everyone did well with answering your post. I might suggest you take calcium and magnesium supplement before bed, as well as vitamin B complex. This may decrease the twitching at night. Of course doing stretching exercises throughout the day is helpful in preventing injuries and those "catches." I take benadryl or its generic equivalent an hour before bedtime with the above and it seems to be helpful for me for sleep. You probably will have to ween off the Amitriptyline before trying this if you choose to. Ask your doctor first. There are precautions.It seems you have had to deal with this a long time, and you actually feel better now than when the kids were younger. That is good news. This fibro thing does have some irritating problems, and it is hard to know which ones to ignore as just being fibro and which could really be do to something else. I wish you relief from them ASAP if it all possible. Good luck to you!


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## squrts (Aug 14, 2000)

hi my limbs twitch all the time,once ,lying on my side my entire body came off the bed,that was a trip!ive also ground my teeth down to about half origonal size,that mouth guard sounds good.i cant spell eather,takes forever to post.good luck.prayers,and see ya.


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## Guest (Jul 23, 2000)

Thanks everyone. jfaith, hope those knees get better, that would be hard to live with.Lsynatsck, I know that I clinch my teeth, I just don't realize it until my jaws start to ache, isn't that crazy. Feisty, don't want any of that TMJ, that sounds terrible. Calida, thank you for the links, I think the article pretty much sounds like me.Moldie, I will try the magn. and calcium. I understand that is what is in the evian  water. Squrts, we will work on the spelling. Don't think they will care anyway. I appreciate you all and I hope everyone had a good day and a better one tomarrow. Cathy


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## Guest (Jul 23, 2000)

Hi Angl,I had never heard of any FM patient not being able to walk (hurting yes, limping yes). Is It that you are numb or its too painful to walk?Your symptoms sound a bit like MS, rather than FM. My daughter has MS, as well as 2 of my aunts, maybe you should do a little research on it the next time you are surfing the net. Loss of muscle control, sudden and severe twitching, pain etc are all signs of MS. Maybe you need a better doctor.My sister suffered from terrible headaches, she would just hold her head and scream for hours. All the doctors here said it was in her head, she wanted attention or drugs. After several years of this, her husband became furious when he had enough and demanded she be sent to a specialist in the city, so they sent her, saying it was a waste of time and money. She was with the specialist 20 minutes and they knew what was wrong. When my sister was 10 she was hit by a truck, the old town doctor came to the site of the accident, picked her up and put her in the car and drove her home. He said she had some bruises and scrapes but would be fine. And eventually she seemed OK and went on with life. Well she had a broken bone in her neck, it healed badly, putting pressure on the nerves, causing the headaches. So they rebroke the bone, severed any unnecessary nerves in the back of her head (its numb now)she spent 3 months in a hospital bed, but she was so much better afterward. My point is, doctors can think we are crazy, but that only proves they are stupid. People do not scream in pain for entertainment.Lori Ann


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## Guest (Jul 28, 2000)

AnglM794Hi, this board is so supportive I guess you have found out! I have a lot of spastic movement in my legs. My lower hips and back are so tight that when I bend it feels like I tore my muscles in half. It is like this all the time. I am on a new med called Celexa - I hate it. It makes me very aggressive and does nothing during the day. At night I am on Desryl I take 50 - 100 mg depending on the severity. I wake up a lot at night with my right rib cage just on fire. I have never had a problem with walking. Pretty stiff and slow. I grind my teeth and just had a mouth piece made. The dentist told me that I am damaging the cartlidge in my left jaw. It makes a difference on the pain on the left side of my head and ear. I usually cannot touch my ear in the morning. I do alot of ice and heat packs. Sometimes the heat makes it worse so I try the cold. It is a hit and miss disease what works one day, may not work another. Well welcome to the board and have a wonderful weekend.lexa


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## Guest (Jul 28, 2000)

AnglM794, Boy do I know where you all come from. I suffer from all of it, the sore feet, hips, sides, grinding of teeth the whole bit. But what I'd like to address is the jerking. I had that also. I started out with a leg and eventually turned into all limbs. It was sever and hurt when I jerked something terrible. I'd even have to go into the emergency room but all I got was the same as you. "your just here looking for drugs, it's all in my head and need to see a physciatrist." I suffered for years and begain to wonder if I wasn't going nuts. Then I saw a real good neuroligist (sp) and she told me I had restless leg syndrom which also affects the arms just as bad as the leg. What a God send. She put me on a medication called Sinemet CR 50/200. I can take 4 a day but 3 does it for me. The jerking completely stopped and I'm fine with the jerking as long as I take the medicine. Your doctor sounds like a complete jerk and I agree with others, find a new one. I hope your seeing a specielist (sp). If not your not getting the care and treatment you deserve. I can't think what kind of doctor I see for my FM but will ask him on the third and let you know. He's so understanding and sympatetic. He does his best to keep me out of pain but there's only so much they can do It seems other than being put completly out, we're living in severe pain, and terrible anxiety and depresion. Try to get to a neurologist and ask about "restless leg sydrom". Don't let these doctors get you down, go from doctor to doctor until you find the right one. It took me a long time. It still amazes me how many doctors are out there that seem to know nothing about FM or CF which I also battle something terrible. Good luck to you and let me know how it turns out, please. You can e-mail me at jshelley###dwave.net your all in my prayers. I can't sy enough about what this group does for me. Your all great. jfaith------------------


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## Guest (Aug 3, 2000)

I was just wondering if everyone who has experienced these symptoms has had an MRI.Lori Ann


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