[Evonne]

This is going to be long, so I apologize in advance! I am a 34 year old woman. I have been healthy all of my life. In January of 2007, I had a partial hysterectomy. Within three months, I developed some strange symptoms that I will go into a little bit later. I was diagnosed with Fibromyalgia about a year and a half ago. At the time I was diagnosed, the Rheumatologist told me that I also had something called cogwheel rigidity and that it was most commonly associated with Parkinson's Disease. After seeing a Neurologist and a Movement Disorder Specialist, they both determined that I don't have PD. Let me tell you...that was a journey! At my last appointment with the MDS, I was told that I have a physiological tremor that is caused by the muscle weakness that is part of Fibromyalgia and that the tremor is increased by stress and anxiety.

I believe that Fibromyalgia exists, but in my gut, I don't believe that is what I am dealing with. I am going to describe some of my symptoms just to get and idea of whether or not others with Fibromyalgia experience what I experience. Here goes! When I wake up in the morning I am very stiff all over. My body aches. It stays that way throughout the whole day. The muscles in my neck and across the tops and back of my shoulders feel like rocks to the touch and the muscles on the left side of my back are also very tight. My muscles feel hard like I lift weights, but I don't. It causes me a lot of discomfort. When I move my head, I often hear a crackling sound. Sometimes I have the sensations of bubbles in my head...strange. Sometimes my head feels like a have a helmet of numbness on. It is odd. Whenever I move at all, there is a tremor. The tremor is increased with each repetitive motion. So, for example, it is really hard to climb stairs, do sit ups, leg lifts or arm lifts. Needless to say, my body fatigues very easily. I also have muscle twitches all over my body. When I lay in bed at the end of the night the twitches are really noticeable. It feels like my body is turning off. When my alarm goes off in the morning, I usually hit snooze once. During the time that I am laying there, my muscles begin to twitch again. It feels like my body is turning on. When I lay down in bed at night I have lights in my eyes that flash. It's almost as if there is lightning flashing in the room, but there isn't. Trust me, I have asked my husband if he can see lights flashing and he has laid there with his eyes open and not seen any lights flashing. I have also noticed lately that I am having some weird things going on with my right eye. It is like there is a spot towards the upper right of my eye that I can't see right out of. It is kind of grayish, I guess.

I am a type 1 diabetic(autoimmune) and my blood sugar levels are usually pretty good. My HBA1C is 7.2 which means that I am averaging around 170. Normal is 120. My control could be better, but it isn't terrible. I don't think my problems are related to my diabetes.

The tests that I have had are MRI and EMG. My MRI was good. The doctor said that there were some small spots, but he said that they were normal. He went on to tell me that the brain is similar to a face and some of us have freckles. My EMG was also fine. It detected my tremor, but the speed of the tremor isn't consistent with PD. It ruled out ALS and Stiff Person Syndrome. I have had all sorts of blood work and I was low in vitamin D and there was some test that showed positive for inflammation. No Lupus, no thyroid problems, no paraneoplastic syndrome. Basically, everything looks normal.

As a result of dealing with all of this health stuff, I have developed anxiety and depression. I recently started taking an antidepressant. At this point, I feel like a head case that the doctor's don't want to listen to anymore. The one that did listen had his office closed down because of hospital budget cuts. I had to find a new Neurologist and my first appointment with him is in November. Whatever is going on with me is real. If I could think my way into feeling good, I would! If I could wake up one day and just feel normal...I would be thrilled! But, things just keep getting worse and worse. I have told my husband more than once that my fear is that one day I might just collapse and die because nobody took me seriously!

Well, that's my story. Let me know what you think.

Evonne

[george208]

I have been combing the internet for all the information I could find about Fibromyalgia. My wife was diagnosed 3 years ago and her condition has gotten steadily worse. I came across a book called "The Textbook of Bioidentical Hormones" that I found very interesting. There have been studies that have shown hormaonal abnormalities in Fibromyalgia patients, but most doctors do not pursue this angle in their treatment protocols. Anyhow, the book was great and I found that the doctor who wrote it has his own website. *edit* His name is Dr. Edward Lichten from Birmingham, MI. His approach to the illness is nutritional as well as dealing with the hormonal problems. I had my wife do some of the blood tests that are recommended on his website and found that may of the abnormailites he spoke of in the book my wife had. Our next step is to go to see him to start his treatment. This is going to be a huge undertaking for my wife as sick as she is, but we fell this is her best chance to find relief. I hope you take the time to look over this information and decide for yourself. I hope you find the relief you are looking for.

[watsonsh]

Yes a couple of things I would add.

I get an internal tremor. Mine is related to adrenal fatigue type sysmptoms. You might want to check that out. I also get it along my nerves from a chronic viral infection I have. You might want to ask you doc to check you for viral infections they are often a cuase behind many inlnneses including fibro. Viruses like HHV6, Epstein Barr, Cytomegalovirus etc.

[Megan]

Also been diagnosed with Fibromyalgia despite misgivings of diagnosis on my part!

I've had/have about twenty five symptoms commencing by and large within a six month cluster from the outset of this condition two years ago - some symptoms are still evolving others settling then re-emerging!

Yes to - When I wake up in the morning I am very stiff all over - (lessened since Lyrica except for fingers).

Yes to - My body aches - (ie. until I started Lyrica).

Yes to - The muscles in my neck and across the tops and back of my shoulders feel like rocks to the touch - my osteopath says that I have Arnold Swcharz.... sized knots in my shoulders!

Sort of to - When I move my head, I often hear a crackling sound - mine is more a feeling of everything being loose and moving around in my shoulders and upper back.

No to - Sometimes I have the sensations of bubbles in my head...strange.

Yes to - Sometimes my head feels like a have a helmet of numbness on. - which is like neuropathic sensations.

No to - a tremor on movement.

Yes to - I also have muscle twitches all over my body - these are called Fasciculations and I started having these within a couple of months of other symptoms starting - about 20 - 30,000 per day!

No to - lights in my eyes that flash

Obviously these are cross-over symptoms which I have similar to you. I also have other symptoms, as possibly you have also.

[seara]

Hey Evonne,

The title of your thread really caught my eye. I have been suffering for a number of years with different symptoms and finally was dx'ed in January 2009 with Fibromyalgia.

I would say over the past year and a half I noticed tremors in my hands progressively getting worse. Fine motor skills have gone to heck in a hand basket. I can barely if at all, thread a needle, decorate a cake, anything that takes a steady hand...forget it.

I have noticed at times it is worse than other times. Mornings are my absolute worst times with the tremors. And I have also noticed that I have a hard time standing without leaning and loosing my balance. At times of stress the tremors and balance increase in intensity.

I've been tested for MS and was basically told "if" I have it, it's a very mild case....I tend to think I don't. But I do have 24+ lesions on my brain, none of them indicative of MS, probably more likely from Type II diabetes and migraines.

Never a day goes by that my body doesn't ache. I have the most problems with aching in the lower extremities and knees (oh how the knees hurt!!). But that's not to say that my arms and upper body don't hurt too. I was given Cymbalta and it seems to take the edge off and help with the depression, although as of late, it's not been as effective. Right now I'm attributing that to the change of seasons (which are killing me right now!).

I do get the fibro fog, but I'm not sure that is the same as you are describing "Sometimes my head feels like a have a helmet of numbness on". It feels, oh how do I describe it....hmmmm.....like thick mud inside my brain....slow and hard to think and I seem to get stuck at times. Thank goodness I don't get that too often as I'm a home provider for an individual with developmental disabilities and it would not be good to be so thick too often!

I do hear a cracking sound now and again when I move my head....its at the base of my head and top of my neck. Sometimes it hurts enough when it cracks and it feels hot.

I also have a yes to the flashing lights in my eyes and the twitching all over my body. Some days are worse than others. I also get pins and needles feeling all over as well.

At this point I don't know what to think of all this stuff. I've been sloughed off by the medical community with my symptoms...no one seems to give a rats patooey about looking further into the symptoms I have. They pat me on my head and send me on my way with well wishes and a kick in the butt out the door *sigh*.

I hope you figure out soon what is going on with you. Please keep us updated.....I find this very interesting.

Be well and take good care!
seara

[Evonne]

George- Thanks for the information. I will look into it and see what I can find out. If you want to send me a private message with the info about the website, I would really appreciate it.

Shelley- Sorry to hear that you also have the tremors. It is so frustrating to deal with and probably one of the symptoms that I find most bothersome. I just had a talk with my Endocrinologist about possible adrenal fatigue. He told me that it doesn't exist. He said that adrenal insufficiency does, though. He checked my adrenal function and the tests all came back...NORMAL! He also checked all of my female hormones and they are all normal, too. I will suggest the tests that you mentioned at my next appointment. Thanks for taking the time to respond.

Megan and Seara- It sounds like we have more in common than we don't! I am not sure what to think about that. At least we know that we are not alone, though. Seara...I was just wondering if you have had a spinal tap to check for MS. Considering your symptoms and the fact that you have all of those lesions, how can they be sure that they aren't MS lesions? Just curious as to how they can be certain that it isn't MS.

[seara]

Megan and Seara- It sounds like we have more in common than we don't! I am not sure what to think about that. At least we know that we are not alone, though. Seara...I was just wondering if you have had a spinal tap to check for MS. Considering your symptoms and the fact that you have all of those lesions, how can they be sure that they aren't MS lesions? Just curious as to how they can be certain that it isn't MS.

True enough, we are not alone. Although I sure wish we could not be alone without these tremors and other symptoms.

I did have a spinal tap a number of years ago and it came back normal. At that time, I had 5 lesions, 1 was in the corpus collasum, the others were in the frontal lobe and other areas but the neuro considered them unimportant. With my latest MRI, there were no lesions in the corpus collasum nor (according to this neuro) did they look to be MS lesions. Neuro felt they were caused by migraines and type II diabetes. I can understand the migraines scenario, but the diabetes I question as I have been on meds and diet control so the sugar levels have been good.

I just wish I could get back some of my fine motor control with my hands. It's so frustrating to be shaking and tremoring all the time And I can't pursue anything with docs and/or meds as I have no health insurance. Blah!

Hang in there ((((( Evonne ))))) and I hope you can find some relief soon.

Best to you!
seara

[Evonne]

I have had a horrible stiff neck for the last week. My upper body from my bra strap up is completely hard like a rok . It is sore sore and it aches and burns. I went to Urgent Care and saw a different doctor. He explained that my muscles were in a state of constant spasm. He prescribed 10 mg. Valium 3 times a day. I asked if he had some time to go over some of my symptoms, mainly the tremor that I have. After examination, he stated that my tremor is not related to Fibro. He said he suspects essential tremor, intention tremor, or PD because of the stiffness and cogwheel rigidity. Cogwheel rigidity is pretty specific to PD, although some people with MS have it as well. He told me that if it is essential tremor or intention tremor the Valium will reduce the tremor. The Valium will do nothing for PD.
He said that he isn't a specialist and he couldn't put a label on it for me. He asked me when I would be seeing the new Neuro. I told him that my appointment is November 13th. I had been treated by the first Neuro that I saw for PD. He felt there was a 50% chance that I had it, but if I was helped by the medication, he would be more like 90% certain. I was on the meds for six months. My Neuro didn't feel that he was seeing enough of a benefit from me being on the medication and felt that there was more to what was going on. He suggested that I go to the University of WA and see Dr. Samii. I opted to see a MDS that was closer to my home. He is the one that determined that the tremor was caused by the muscle weakness that is associated with Fibro and he said that it was exacerbated by stress and anxiety. This is all so confusing and frustrating! I can surely tell you that a lot of this stiffness improved while I was on the PD meds. The tremor reduced, but never completely went away. I am not sure what to think about all of this. Any thoughts???

Evonne

[dbw52]

Wow when I read your post I could feel your frustration and with a lot of empathy. I have been suffering with some of the same symptoms and have had just about as many test as you and have had a neuo diag me with benign fasciculation syndrome. It is very difficult to live with. I also have developed anxiety over the whole thing. I also have floaters in my eyes and blurry spots to boot. Arms go numb, cant sleep well and could go on. I just wanted you to know you are not alone and I hope with as much hope a human can have we find a solution.

[Evonne]

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!

Originally Posted by dbw52

Wow when I read your post I could feel your frustration and with a lot of empathy. I have been suffering with some of the same symptoms and have had just about as many test as you and have had a neuo diag me with benign fasciculation syndrome. It is very difficult to live with. I also have developed anxiety over the whole thing. I also have floaters in my eyes and blurry spots to boot. Arms go numb, cant sleep well and could go on. I just wanted you to know you are not alone and I hope with as much hope a human can have we find a solution.