off balance, gait disorder, eye and neck spasms

 I don't want to scare you but did they test you for MS? Balance and eye issues is a big part of MS. I always feel achey mostly in the muscles some in my joints but no balance issues. I have also been through the gauntlet of tests. It's been over a year since I first went to the doctor and I am still going to specialists and getting tests. Good luck

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  Yes, I have had 2 head mri's with no lesions.  They say everything is fine.  They tell me it is not MS.  Very happy to hear that.  Could my anxiety cause symptoms like this?   I do worry a lot about my symptoms- who wouldn't?  I don't understand , because if it is my anxiety - I'm on medications for anxiety.  I take 1.5 mg of Klonopin and 20 mg of Paroxetine.  Wouldn't these meds control the symtoms?  I don't know that's the way I see it.  Do you experience any anxiety issues?  Is anxiety a common symptom of fibro?  I am just really frustrated with the doctors, because they are just as confused with my symptoms as I am.  Oh,  and I have also been on Cymbalta and Lyrica  with no relief.  I guess I will give Savella a try.  I will keep you posted on the results of med.

Hi teacher,

I never experienced anxiety until the Fibro. I experienced normal responses to stressful situations and ever since the Fibro it's been a battle. I was on Effexor for 3 years. It was the only treatment I have ever used for the Fibro because it helped with the pain and anxiety. I stopped taking it due to the weight gain and felt like once I stopped it I was able to handle the anxiety better. It takes some effort sometimes, but I also try deep breathing and relaxation.

I too have dizziness and balance problems. Sometimes the dizzy feeling I think is related to anxiety but for the most part is the Fibro. I also have worse balance issues in the middle of the night if I wake up to use the bathroom. I just have to walk with my arms out to make sure I don't run into anything. I have always had neck spasms. Before I even knew I was having them it was caught on an EMG. My neck tends to twich once or twice and my head will turn but then usually stops. I have never experienced it when relaxed though. Mostly when I'm standing up or sitting up straight. My eyes sometimes bounce around but not often. I don't think I have ever experienced the spasm and eyes at the same time though. I was checked for MS 4 years ago to rule that out before the Fibro diagnosis and just this past June was sent for another brain MRI to make sure there were no lesions or growths.

I once heard someone else tell me that every few years they were sent for brain MRIs because their Fibro had flared terribly or they came down with new symptoms, but it didn't register until I was sent back for another brain scan after only 4 years. There is so much they don't know about Fibromyalgia and so they try to rule out based on the things they do know a lot about.

Sorry I can't be of help in the med department. After coming off the Effexor I don't take anything. Perhaps you want to ask about a muscle relaxer though because that should help with the spasms and muscle tightness. Also, try a heating pad at night when you're relaxed and see if that will keep the spasms away. Hang in there!

teacher, I have not had an EEG. My internist ordered my last brain MRI and I haven't seen a neurologist for 4 years. When I did last see a neurologist he was very quick to dismiss me, even before I had the Fibro diagnosis. He knew I had a clear brain scan and my internist had sent me to him for a 3rd opinion. After a thorough neuro exam he was convinced whatever was going on wasn't originating in the brain.

Do you know why your neuro wants you to have an EEG? Knowing their thinking behind it might help you determine if you need to have the test done or can/should hold off for now.

Teacher,

Make sure you get copies of your MRIs (disc) as well as a copy of the written report.  If you call the local MS society in your area; google National MS Society and their site will guide you to the location of a local chapter, they can give you list of MS specialist near you.  It never hurts to have another opinion.

MS and Fibro share a lot of the same symptoms.  I have head time and time again people being diagnosed with Fibro first then it's later changed to MS or MS is diagnosed in addition to Fibro. 

You also must do something about that herniated disc.  It sounds like that is causing a lot of problems.  I have a herniated disc in the same exact area.  I benefitted from PT quite a lot.

Best of luck.  I hope you are feeling better real soon.

Teacher, I do experience the balance problems, especially when I wake up from a sound sleep. It is the same with stiffness . I sometimes feel in the daytime that my legs do not want to work right, although I have had a mild form of nystagmus in the past, particularly when fatigued. I did have a very severe bout of TMJ about 20 years ago, during which I could not open my mouth over about 1/2-1" for several months. I have had several bouts of this since that time, although not as severe. Pain in the neck, upper back, and shoulders usually accompany this, although I do not have the bad spasms in the neck like what you describe. I think that the only eeg's that I have had were a part of 2 sleep studies (both revealed sleep apnea and lack of REM sleep). I have not had a mri of my head. I had a number of blood tests which were negative except for Anemia and low D3. Nearly all of the spots in the tender points test were postitive. I think that my diagnosis was based on that, and the fact that other illnesses were ruled out.

As for medications, I was initially put on Trazodone. This helped a great deal at the beginning with fatigue, as it helped me to get a better quality of sleep. For Several months pror to my getting diagnosed, I was going to sleep at night with no problem, but then waking up after a few hours drenched in sweat. I would then be unable to go back to sleep. This took care of these symptoms, and, since I felt better rested, I could deal with pain more effectively. I did recently go off this med recently, as I felt that it might be causing me to be groggy during the daytime. I was sleeping through phones ringing, alarms, people knocking, etc. I also recently had a hysterectomy, however, and I have heard that the fatigue from this type of surgery can last for up to 6 months. I plan to discuss this further with my doctor at my next appointment. I am not opposed to going back on the Trazodone, if necessary. I just hate feeling tired/not rested for whatever reason. I also take Lyrica, and this seems to help somewhat.

I have found that the medications only play a part in managing the pain. I think that inactivity can be our worst enemy. Exercise is very important in managing Fibro. I find that if I sit for more than 15 or 20 minutes, I am in pain. It is important to get up and move, even if it is only a few simple stretching exercises in the beginning. The Neurologist at the pain clinic recommended water exercises. When I complained to him that I did not have the time, he told me very sternly, "You go! Even if you don't have the time, You go!" I found myself feeling very annoyed with him at the beginning, but decided to follow through. It has turned out to be the best advice that I have ever gotten. I have been inconvenienced by having to rearrange my schedule and cut back on the amount of work that I do. But it is worth it. I go several times per week, and the warmth of the water coupled with the stretching does me a world of good. I have less pain and stiffness, and my range of motion has improved a lot over the past year. I have also started walking my dogs when the weather is nicer for about 11/2 hours per day. In addition, I use an elliptical trainier for 30-45 minutes per day 4-5 times per week, and do Wii Fit as much as possible. I do not seem to lose weight, which I badly need to do, but my muscles are much stronger, and I am healthier as a result. Just about any form of exercise will help with stress and anxiety, also. I also use moist heat when I am having pain, and keep several bed buddies rice packs on hand for when the pain is all-over.