Thanks for your empathy. I am sorry to hear that you are suffering as well. I have a lot of fasciculations myself, but my EMG didn't show anything rare like ALS. The fasciculations are a nuisance for sure. I hope that you get to feeling better soon.

As for me, I have been posting in the PD forum, because I think that most of my symptoms are most like PD. I saw two doctors within the last week and a half that both felt that my diagnosis of Fibro was incorrect. Mainly based on the tremor and cogwheel rigidity that I have. Those things are not consistent with Fibro. So, for the second time in the past year, I have gone back on PD meds. This time, the doctor gave me the best medicine there is for PD...the "Gold Standard". I have only been taking one pill a day and it is in the early morning. I have noticed that I have been less shaky and that my stiffness seems to improve when I am on the medication. It is as if a calm just sort of comes over me and the internal shakiness that I have described since the beginning of this seems to go away. By mid afternoon, my symptoms seem to get a little worse again. My thought is that gradually the doctor will increase the dose up to multiple times a day until we see more improvement. If the meds don't seem to help much, then it means that I probably don't have PD and the search for what is really going on inside of my body will continue. I am not going to give up until the right doctor finds out what is wrong with me. Hopefully, the answer will come sooner rather than later.

Thanks for your response...and hang in there!

Hi Evonne,
I'm a 28 yr old woman. I began having symptoms as young as 12 yrs old. I also have many of the same symmptoms as you, including tremors. Mostly in my hands but sometimes in my legs as well. I was only diagnosed about 2 yrs ago. Since then I've done a lot of internet research as well as started reading many books. One of the books that I felt explained and described fibromyalgia symptoms and possible causes was "Chronic Fatique Syndromme, Fibromyalgia, and other invisible illnesses" by Katrina Berne, PH.D. Doing some research goes along way. There is a lot more literature out there than people realize. Hope this helps and I hope everyday is better than the last! Stay strong!

I found your post while searching for any information stating or indicating any link between an "Essential Tremor" and "Fibromyalgia".

I was diagnosed with an Essential Tremor about 26 years ago. This tremor effects my head primarily with hands affected to a minor degree. I found the doctors diagnosis at the time as unaccepted and told him it was not essential to me. But on the more serious side, this is an issue that has caused me numerous problems throughout most of my life. This tremor I had when I was a child but it progressively worsened until I sought medical diagnosis of the issue.

Over the years I have damaged my back a number of times. I had to have a lumbar fusion several years ago. Prior to this operation, I had unexplained pains in most of the major muscle groups. I had been treating it with heating pads and topical creams. After the back surgery there occurred a noticeable increase in the frequency and intensity of these muscle pains. This led to increased use of heating pads, a change to maximum strength topical creams, and addition of massaging pads. This enabled me to continue working, as the pain level was reduced to a bearable level.

I later had to have a hernia operation. Following this operation, there was another increase in the pain level and frequency of the pains. At this time, the self medicated and home remedies no longer sufficed. I then saw a doctor who eventually (after about 5 months) diagnosed me with fibromyalgia.

I was given cymbalta initially, which caused cramping of the hands and the throat. This was, needless to say, unacceptable side affects. I was changed to Amitriptyline which caused me to develop a sever speech impediment. I was finally placed on Lyrica which helps to bring the pain to a tolerable level.

The symptoms I have are:
Pain and fatigue within all the major muscle groups.
Stiffness throughout the body in the AM
Swelling of the extremeties
I also get the creaking of the neck during movement of the head, but this is something that I have suffered for over 20 years.
I do get popping of the all the joints in the neck when I move my head, and this occurs up to 30 times a day.
I developed Restless leg syndrome, Irritable bowel syndrome, and several other possible issues which I have as yet to see my doctor about.
I have pain in all the joints of the body.
I have some balance issues (possibly it would have been worse if it were not for my background in martial arts)
I have a slight shuffling gait and tend to trip a lot
The knees and ankles "give out" on me at times leading to he need for a cane or other assistive device.
I have numerous migraine headaches and very frequent tension headaches.

This concludes those symptoms I can call to mind at the moment. Some of these symtoms are due to the degenerative disc disease of the entire spine, both shoulders having torn rotator cuffs, arthritis, and a general abuse of the human body through extreme physical labor and sports over the years.

I have heard that it is believed that Fibromyalgia is a neurological disorder. I am curious to know if it can be caused by another neurological disorder such as a Benign Essential Tremor.

Thanks to those who take the the time to read my long, rambling, and probably off topic entry.

Hi there!!

I have PD and was curious what medication you're on that your doctor is calling "the gold standard"....if it is Carbidopa/Levadopa (Sinemet) and you're having a good response to it (which it sounds as if you are), then you have PD. Sinemet will have no effect on any other disorder. It is exclusive o PD treatment and has no "off label" uses.

Good luck, and keep in touch!

Kim

I am sorry you have it so hard. I have had internal tremors for almost 20 years, getting worse. Lying in bed the skin is twitching and jumping. My head is always fuzzy, heavy , pain in neck and shoulders. I only have the Chronic Fatigue Syndrome diagnosis, not even looking for another. I understand if someone is really suffering they have to search, etc.. see specialists. I personally feel that most people will come back to the CFS diagnosis with its incredibly weird symptoms! I also have POTS, very weak standing. If you check ** , she is very knowledgeable and has lots of info. She has sever flashing in her eyes, especially at night.

Hello,

I was struck by the phrase, you know about fibro, but don't think it applies to you.
I am in a similar boat. I have been in undiagnosed land for many years. So many docs all in a rush, no one taking the time to listen and act long term.

For me, this website strengthens my resolve to care for myself...I see others, and the mistreatment they pay money for. The insults docs use...the garbage bag of diagnosis...meaning if they can't easily figure it out, they say, you are overweight, or depressed, or your meds are causing your problems.

I can see what I would suggest for others, and it helps me have faith in what i need to do for myself. My husband is not a medical advocate...he is lots of wonderful things but not that.

SO as tired as I am, as uncertain as i am about what is wrong with me,

I can see that Today is our source of joy.

I have decided to do what i can to unravel the mystery about my problems.
i am getting my Vit B12 checked today,
I am forcing myself to go to the Y to take a "keep Moving" water class.
I have started removing wheat from my diet.

I want to get better.

I appreciate all the posts. I see how one persons journey helps others.

LS

Hi, as I read your initial post, it felt as if it were my history, only difference is that I know I have been having trouble since age 4 when my mom found me in the doorway crying because I could not walk. I was Diagnosed at 35 after many years of suffering. Everything always comes back normal. I have noticed that my tremors are getting worse. I have the inner tremor as if my muscles are trembling around my bones and also a shaking that takes hold of me when I am very happy or angry, I also sometimes have difficulty speaking, Bradykeneasia sometimes and I walk slowly and sometimes my voice is very soft. Though the Neurologist still said Fibro. I hate stairs because my legs shake so much. People do not get is atall. 3 other drs confirmed the Fybro, my initial physio said my muscles resembled those of someone with parkinsons. I am now taking a dopamine supplement and am feeling better than a week ago.

Welcome Jellybaby.

I was diagnosed with Fibro 5 years ago. I have had an essential tremor since I can remember. It is getting worse. I finally found a medication that takes away the Fibro pain, which is Fexmid (not the generic) It is expensive but worth it. My insurance won't pay for it because they say a generic is available flexerall, which doesn't touch the pain. I also take Zoloft and and first xanax then adavan but have quit both of them because the "fog" get's really bad on those. My concern is the stupid tremor. A neurologist prescribed a beta blocker, which was okay for a couple years, but now is getting worse. I read that the essential tremor is linked to the thalamas and it is a nerve disorder. If I'm not mistaken Fibro is a nerve disorder also. Can these be linked? Or is it possible I don't have Fibro, but have another problem that stems from the thalamus (no pun intended)? I wonder how many people with Fibro also have an essential tremor? I have also noticed in the past couple months a burning sensation in my legs if I stand still for more than 2 minutes.

I can really relate to you story. I just found your post while trying to find answers to my own problems. I also just recently was diagnosed with tremors after being tested for seizures, PD, and MS over a peroid of a year. I have had fibro for almost 11 years and I am almost 33 years old. The tremors come more with muslce weakness and fatigue. However, if I get cold and begin to have chills that also can trigger the tremors and can take several minutes for them to stop again, it is a muscular activity. sometimes the tremors can lead to weakenss and some pain after they stop. Do you have that problem? I have tried the beta blockers but they lower my blood pressure too low and make me very tied and weak.

Thanks for sharing your story.