Does anybody have a tremor with their Fibromyalgia?
 

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

Maybe this will help
 

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.

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.

Similarities!
 

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.

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! :eek:

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

Thanks
 

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.

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 :mad: 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

Quick Update
 

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

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.

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 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.:)

I just found your post, and I have just about every symptom you mention. I have been diagnosed with Fibro about 20 years ago. I have found that food, sugar, and chemicals have a profound effect on symptoms. A couple of years ago, my symptoms worsened and the tremors got so bad I could barely walk. I was then diagnosed with a neurological condition, a form of myoclonus. I take klonepin and keppra, which help me to function. Without the medication, I could barely walk. Cymbalta made my symptoms really bad. I think it is important to watch your chemical exposure and keep your stress levels low. Try to avoid MSG, artificial colors (which are almost everywhere and cause my symptoms to get really bad), preservatives, etc.

Fibromyalgia and Essential Tremor
 

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.

I too have every symptom you described except the eye problems. I have been diagnosed with essential tremors and fibromyalgia. My tremors are in my neck. My neck and shoulders feels like rocks. I tried physical therapy and it hurt so bad that I was stiff in my neck for days. I was diagnosed with fibro in Nov 2011 from my rheumatologits, and essential tremors 2006 from my neurologist. My tremors are exactly like you described. I wake every morning with my head shaking, and at night when I'm asleep they stop. I have taken so many meds. Nothing has worked for me. I have seen a neurogolist and am now seeing a rheumatologist. I do hope that there is a cure or at least some type of medication that could stop this shaking. Sometimes I think I'm going crazy. No one where I live (that I know of) has this except me. I am so exhausted at night when I go to bed, where I try to stop the shaking of my head.

Curious to know
 

Evonne,
I'm curious to know if you have received an accurate diagnosis in the last 3 years since that post. If you get this please let me know. I completely understand what you're saying about feeling like a mental case and having drs who are now tired of listening and are at a loss. I have been dealing with some time of Auto-immune disorder for almost 2 years now. From the research I have done I have narrowed my symptoms down to some type of CNC auto-immune disorder but all of my symptoms are the same symptoms for several different disorders. I have been MISDIAGNOSED with Fibromyalgia, Rheumatoid Arthritis, Lupus, Raynaud's Phenomenon, and now back to Fibromyalgia because they can't find anything through lab testing to back up the previous diagnosis. I'm now being sent for MRI's to check for MS. MS, describes my symptoms more than anything else. Although tonight, when reading PD page most of my symptoms are also listed there and that's something we hadn't even researched.

My symptoms include: (but not limited to because there are other things that I haven't tied into it that could be related)
tremors almost nonstop, twitching in the muscles & nerves throughout my whole body including torso & face, Severe back neck & hip pain. Severe pain in my hands wrists legs & feet. My fingertips & toes turn ice cold & blue (most of the time under stress or for no reason at all) once I get cold I have a hard time warming up and vice versa when I get hot. I suffer from swelling throughout my body including my face & stomach but mostly in my hands legs and feet. When I bend my neck down I have shooting pains that go down my back like lightening. I suffer from orthostatic hypertension. (my blood pressure is typically high when untreated and higher when sitting up, when I stand my blood pressure drops suddenly & causes it to be difficult to treat my blood pressure. Because when my blood pressure is normal at sitting/rest position when I stand it's drops too low. When it's high at rest it drops to normal when standing. Catch 22) I suffer from memory problems, dizzy spells, vision problems (blurred & double vision that comes on randomly and leaves just as random), I have also been diagnosed as "BIPOLAR" due to the constant highs & lows in my mood swings day in and day out. The majority of that is from frustrations of my new found limitations! I have weakness in my muscles. I can't lift my babies very easily, at times can't lift my glass or fork very easily. It is very difficult to stand because my legs feel wobbly & shaky & very unstable. I feel as though they could give out from underneath me at any given time. I had reached an all time high last year in my weight at 348lbs, this is when my symptoms progressed to constant every single day and very severe. I thought losing weight would help these problems especially the wobbly legs... but if anything it has only gotten worse even after losing 70lbs so far. I have constant joint pain in my fingers because I spend a great deal of my time on the computer, as I'm in school & run an online swap shop. My wrists hurt almost always. Was told this was carpal tunnel syndrome many years ago recently told it wasn't carpal syndrome and a few months ago was told again that it is.. Did I mention that my memory SUCKS! oh and I have trouble computing and processing information. This part of what ever I suffer from came on after I had a fainting spell and ended up crashing head first into a wall when I leaned forward from the toilet to reach the toilet paper I had dropped when my hand gave out when grabbing it. This too is a symptom that seems to be getting worse, My grasping. I have a hard time grasping things lately. It's very difficult and I drop a lot of the things I am trying to pick up, either because my arms/hands get shaking too bad or I get a spasm which causes me to drop them. Last week I had an episode where I was typing and suddenly I couldn't lift the fingers on my right hand to reach to type the letters above the home row keys. Upon this happening I had a severe spasm in the top of my hand and when trying to see what was limiting my range of motion I discovered that I couldn't cross any of my fingers over another. It was absolutely impossible. This lasted for a couple hours, then subsided. It is very uncomfortable to sit still it is very difficult to move it. My ankles hurt constantly. I have tingling, numbness, & loss of sensations in all parts of my body. I have had random onset episodes where I couldn't tell the difference between rough, smooth, hot or cold. Often I feel like I'm wearing rubber gloves. I have severe pain when I stand especially after sitting, sitting, walking or riding in the vehicle for more than 20 minutes. Sometimes it feels like I'm dragging my legs behind me. When I wake up, I have to lay in bed for 15-20 minutes before I can even consider getting out of bed because if I don't I will hit the floor. It's almost as if I have no feet at all when I first wake up. They are numb cold & almost unusable. When I do stand up, I am very off balance, wobbly, my legs tremble & I have to stand for a minute or 2 before I am even able to move my feet to walk. It's almost like I have to consciously think and tell my feet to walk as if I had forgotten how. I run random low grade fevers for no reason. I have headaches sometimes severe & days at a time. I have twitching in my eyes & lips that are random and last just a few seconds at a time sometimes it happens on my cheeks also. On a really bad day I feel as if someone is hammering icepicks into my bones! My skin often feels like it's on fire from the inside. The lightening pains are some of the worst feelings. I get very dizzy in the shower. My hearing has also suffered. For some reason I don't hear as well as I used to. I often don't wake up with my 2 toddlers cry at night my husband has to get up with them. (thanking GOD that he's currently unemployed to some degree anyways!) This all started after I had my 2nd daughter, but was random. 2 months after my 2nd daughter was born I was pregnant again. I had several problems during my pregnancy that I attributed to the pregnancy but didn't subside once my 3rd daughter was born. About 2 weeks after she was born I started noticing some very strange things happening and suddenly I had no ability to stay awake. I would randomly drop off to sleep at any given point and I always seemed to be exhausted. (I attributed this at the time to being a new mother in post partum, again it didn't subside and she's now almost 2) I had problems with my epidurals during labor & delivery of both of the babies, in which I believe they messed up nerves in my back causing severe nerve damage that I am now experiencing. Which is sometimes the case found with MS, according to what I've read. I often get sick to my stomach, have difficulty swallowing, have chronic constipation, difficulty starting to pee and often feel like I didn't drain my bladder completely and more often than not all I do is trickle when I do pee. I am very forgetful all it takes is a split second distraction and I can't remember what I was doing only seconds before. Carrying on a conversation is difficult because I often lose my point in my sentence. I know there's things I'm leaving out but I can't remember them at this given time and this is plenty long enough as it is. Long story longer, my dr is tired of hearing me complain. He offers no answers or suggestions anymore, doesn't seem concerned when I find things alarming (such as when I couldn't lift my fingers suddenly) and I feel as though I'm now talking to a wall because all he seems to want to do is write me a prescription for pain medications, antidepressants, muscle relaxers, diuretics, B-12 injections & sleeping aids. I am not a pill popper & I refuse to take all these medications when he can't even tell me what is wrong with me. I am not going to mask the symptoms not even knowing why I have them in the first place. OH I forgot to mention my B12 is low and so is my Vitamin D. I forgot what my point in writing this extremely long message was but I guess I hope someone reads this and says OMG I KNOW WHAT SHE HAS! and not say OMG SHES CRAZY! She is such a hypochondriac. Which is what most of my family & my dr seems to think. OR at least that's the way everyone treats me. If anyone has anything to share please feel free to leave a message here and I'll check back or Please feel free to email me. Thanks to anyone who read this far and I am praying to find some suggestions or answers! I'm tired of living this life most days and if it wasn't for a wonderful patient husband & my 3 beautiful children. I'D SO CHECK OUT! :grouphug:

i just realized i have the symptoms listed by most of every one on here.i have the soreness in the morning, my neck sounds like snap crackle and pop,i have spots on my shoulders and back if touched i could come out of my skin as well as the inside of my knees,i have had restless legs since i was a child, and i have been dx with small fiber neuropathy but the one thing that bothers me most is when i go into a room that is not as light as the one i left when my vision adjust i have a gray spot in my vision after a few min is goes away. I just feel like there is more going on than just sfn and rls so i have set up an appointment with rheumatologits to put my mind at ease.My neuro did blood work and i also am very low on vit D which i am taking daily 2000iu.I am open to any feedback and just know i feel like i am on the right track
Brenda

Fibro & ME & now tremor... HELP
 

:confused:

I haven't been dx with Fibro but I have all the symptoms. My massage therapist is questioning why I'm not healing from my whiplash. It's been 4 months and no change. ANA was negative.

I'll be seeing neuro next month and I'm trying to figure out what t say. Should I just go over symptoms and make him guess or just come out and say Fibro. I'm afraid of being treated like a nut case like my GP is.

tremor
 

I have had fibromyalgia for over 10 years, but until about a year ago I went untreated. Time brought more misery by the day. Finally, I accepted meds to help me sleep/lesson the pain. Low dose Elival. (I am reluctant to take new meds).

Anyway, about seven days into the treatment which worked miracles, my hand tremor started. Only the right hand, and only if I was preforming some task against gravity. Like spooning sugar to my cup, or applying eye make up. It got worse, it affects my left hand also. Now I notice that my insides are quivering-no it doesn't hurt. But, I am worried.

I know that a common side effect to any medication that crosses the brain can be a Parkinson like tremor. The treatment is to stop the med, or add another med to block the effects of the first med.

Have any one of you fellow fibro guys had this experience, and if so what did you do about it?

Can't Believe
 

[QUOTE=HarveysAngelsx3;901262]Evonne,
I'm curious to know if you have received an accurate diagnosis in the last 3 years since that post. If you get this please let me know. I completely understand what you're saying about feeling like a mental case and having drs who are now tired of listening and are at a loss. I have been dealing with some time of Auto-immune disorder for almost 2 years now. From the research I have done I have narrowed my symptoms down to some type of CNC auto-immune disorder but all of my symptoms are the same symptoms for several different disorders. I have been MISDIAGNOSED with Fibromyalgia, Rheumatoid Arthritis, Lupus, Raynaud's Phenomenon, and now back to Fibromyalgia because they can't find anything through lab testing to back up the previous diagnosis. I'm now being sent for MRI's to check for MS. MS, describes my symptoms more than anything else. Although tonight, when reading PD page most of my symptoms are also listed there and that's something we hadn't even researched.

My symptoms include: (but not limited to because there are other things that I haven't tied into it that could be related)
tremors almost nonstop, twitching in the muscles & nerves throughout my whole body including torso & face, Severe back neck & hip pain. Severe pain in my hands wrists legs & feet. My fingertips & toes turn ice cold & blue (most of the time under stress or for no reason at all) once I get cold I have a hard time warming up and vice versa when I get hot. I suffer from swelling throughout my body including my face & stomach but mostly in my hands legs and feet. When I bend my neck down I have shooting pains that go down my back like lightening. I suffer from orthostatic hypertension. (my blood pressure is typically high when untreated and higher when sitting up, when I stand my blood pressure drops suddenly & causes it to be difficult to treat my blood pressure. Because when my blood pressure is normal at sitting/rest position when I stand it's drops too low. When it's high at rest it drops to normal when standing. Catch 22) I suffer from memory problems, dizzy spells, vision problems (blurred & double vision that comes on randomly and leaves just as random), I have also been diagnosed as "BIPOLAR" due to the constant highs & lows in my mood swings day in and day out. The majority of that is from frustrations of my new found limitations! I have weakness in my muscles. I can't lift my babies very easily, at times can't lift my glass or fork very easily. It is very difficult to stand because my legs feel wobbly & shaky & very unstable. I feel as though they could give out from underneath me at any given time. I had reached an all time high last year in my weight at 348lbs, this is when my symptoms progressed to constant every single day and very severe. I thought losing weight would help these problems especially the wobbly legs... but if anything it has only gotten worse even after losing 70lbs so far. I have constant joint pain in my fingers because I spend a great deal of my time on the computer, as I'm in school & run an online swap shop. My wrists hurt almost always. Was told this was carpal tunnel syndrome many years ago recently told it wasn't carpal syndrome and a few months ago was told again that it is.. Did I mention that my memory SUCKS! oh and I have trouble computing and processing information. This part of what ever I suffer from came on after I had a fainting spell and ended up crashing head first into a wall when I leaned forward from the toilet to reach the toilet paper I had dropped when my hand gave out when grabbing it. This too is a symptom that seems to be getting worse, My grasping. I have a hard time grasping things lately. It's very difficult and I drop a lot of the things I am trying to pick up, either because my arms/hands get shaking too bad or I get a spasm which causes me to drop them. Last week I had an episode where I was typing and suddenly I couldn't lift the fingers on my right hand to reach to type the letters above the home row keys. Upon this happening I had a severe spasm in the top of my hand and when trying to see what was limiting my range of motion I discovered that I couldn't cross any of my fingers over another. It was absolutely impossible. This lasted for a couple hours, then subsided. It is very uncomfortable to sit still it is very difficult to move it. My ankles hurt constantly. I have tingling, numbness, & loss of sensations in all parts of my body. I have had random onset episodes where I couldn't tell the difference between rough, smooth, hot or cold. Often I feel like I'm wearing rubber gloves. I have severe pain when I stand especially after sitting, sitting, walking or riding in the vehicle for more than 20 minutes. Sometimes it feels like I'm dragging my legs behind me. When I wake up, I have to lay in bed for 15-20 minutes before I can even consider getting out of bed because if I don't I will hit the floor. It's almost as if I have no feet at all when I first wake up. They are numb cold & almost unusable. When I do stand up, I am very off balance, wobbly, my legs tremble & I have to stand for a minute or 2 before I am even able to move my feet to walk. It's almost like I have to consciously think and tell my feet to walk as if I had forgotten how. I run random low grade fevers for no reason. I have headaches sometimes severe & days at a time. I have twitching in my eyes & lips that are random and last just a few seconds at a time sometimes it happens on my cheeks also. On a really bad day I feel as if someone is hammering icepicks into my bones! My skin often feels like it's on fire from the inside. The lightening pains are some of the worst feelings. I get very dizzy in the shower. My hearing has also suffered. For some reason I don't hear as well as I used to. I often don't wake up with my 2 toddlers cry at night my husband has to get up with them. (thanking GOD that he's currently unemployed to some degree anyways!) This all started after I had my 2nd daughter, but was random. 2 months after my 2nd daughter was born I was pregnant again. I had several problems during my pregnancy that I attributed to the pregnancy but didn't subside once my 3rd daughter was born. About 2 weeks after she was born I started noticing some very strange things happening and suddenly I had no ability to stay awake. I would randomly drop off to sleep at any given point and I always seemed to be exhausted. (I attributed this at the time to being a new mother in post partum, again it didn't subside and she's now almost 2) I had problems with my epidurals during labor & delivery of both of the babies, in which I believe they messed up nerves in my back causing severe nerve damage that I am now experiencing. Which is sometimes the case found with MS, according to what I've read. I often get sick to my stomach, have difficulty swallowing, have chronic constipation, difficulty starting to pee and often feel like I didn't drain my bladder completely and more often than not all I do is trickle when I do pee. I am very forgetful all it takes is a split second distraction and I can't remember what I was doing only seconds before. Carrying on a conversation is difficult because I often lose my point in my sentence. I know there's things I'm leaving out but I can't remember them at this given time and this is plenty long enough as it is. Long story longer, my dr is tired of hearing me complain. He offers no answers or suggestions anymore, doesn't seem concerned when I find things alarming (such as when I couldn't lift my fingers suddenly) and I feel as though I'm now talking to a wall because all he seems to want to do is write me a prescription for pain medications, antidepressants, muscle relaxers, diuretics, B-12 injections & sleeping aids. I am not a pill popper & I refuse to take all these medications when he can't even tell me what is wrong with me. I am not going to mask the symptoms not even knowing why I have them in the first place. OH I forgot to mention my B12 is low and so is my Vitamin D. I forgot what my point in writing this extremely long message was but I guess I hope someone reads this and says OMG I KNOW WHAT SHE HAS! and not say OMG SHES CRAZY! She is such a hypochondriac. Which is what most of my family & my dr seems to think. OR at least that's the way everyone treats me. If anyone has anything to share please feel free to leave a message here and I'll check back or Please feel free to email me. Thanks to anyone who read this far and I am praying to find some suggestions or answers! I'm tired of living this life most days and if it wasn't for a wonderful patient husband & my 3 beautiful children. I'D SO CHECK OUT! :grouphug:[/QUOTE
I was ever so glad to see your post, because I was wondering what in the world is wrong with me, and am I the only one with all of this stuff going on.
I was diagnosed with Fibro about 6 years ago, and have been just surviving ever since. And it seems that every time I turn around something new gets added to the mix of symptoms. I have been diagnosed with the begining stages of Parkinson's, and was given the so called best med for it, I can't recall the name right now...lots of forgetting... It cause severe muscle spasms body-wide, so I had to come off of it, and was given flexerill for that. I have a rare skin disease that came on after that, called PLEVA or Mucha Haberman disease. I also have other conditions going on, but I was glad to read your post because I have exactly the same symptoms as you, and am at a loss for what is going on here. I also live in a small town in Arkansas, it would be interesting to see which town you are from.

Hey feel free to private message me and I don't mind telling you where I live :) It's crazy my husband has been telling me all along he thinks it's parkison's. Nothing makes sense to me anymore. I'm so tired of going to dr after dr. I have told my sister in law yesterday that I'm going to type a biography of my symptoms and start distributing them to doctors. Like a resume. If they decide they want to take me on as a patient and find out whats going on thats great! If not then I'll keep on moving. I'm tired of not knowing whats wrong and I know permanent damage is being done the longer I wait. Hope I get this fixed soon! Looking forward to hearing from you. You can email me at lvcnqursal@aol.com

Have you been to an environmental medicine clinic? There's a few in Canada. From my experience, these doctors tend to take all this more seriously than just the family doctor.

Yes - When I wake up in the morning I am very stiff all over - major stretching before I get out of bed helps, yoga for flexibility helps.

Yes - My body aches all the time, all over, feels like sparkler's on the 4th of July, but inside my legs and arms and they hurt more because they are constant.

Yes - The muscles in my neck and across the tops and back of my shoulders feel like rocks to the touch, with marbles of pain in them. Trigger point massage therapy hurts like heck, but really helps.

No - When I move my head, I often hear a crackling sound - I'm in my 50's, most bones crackle when I move them ;) so my neck does, but don't think it's more than anyone else's.

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

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

Yes - a tremor on movement.

Yes - I also have muscle twitches all over my body - these are called Fasciculations and I have them all the time all over.

No - lights in my eyes that flash

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

Oh dear :(
 

I can relate to EVERY single word you've written... especially the "CHECK OUT" part.... I know exactly how you feel an if you are crazy then so am I (a small attempt at humor)

I also get flashes in my eyes....

keep on keeping on folks... unfortunately we have no bloody choice

kerry
:(

Hi there
 

Hey I was reading through all these posts and I can relate to a lot of these symptoms. I have had burning, tingling, numbness in feet and legs and sometimes arms and face. It's getting worse and I'm at the point now where I avoid walking and standing at all costs. I have been told I have nueropathy and that there is nothing I can do for it. Okay so I went back to neuro last week and he is running tests again for MS. But I have these vibrations and light sensitivity etc. He said if these test come back normal then I think you have Fibro. I just want an answer to all this. I starting to get depressed because this is all progressing so rapidly and I feel like I'm losing my mind and I will be unable to function before too long. Sorry to ramble. What is PD?

Lately (within the past 2-3 weeks) I've been feeling like I'm vibrating. Not all the time but occasionally. I notice it most when I am moving around and then stop sort of quickly. Like if I'm walking around my house quickly and then stop and sit down. Its almost like I stopped moving but my body didn't realize it right away and thought it was still in motion.

Fibro and tremors
 

Hello Evonne,
Your post was very interesting to me. I also have the "shakes" with my fibro, but not as often as you. I take Flexoral for it. It helps me, but of course, you would have to talk to your Dr. about taking it for yourself. There are times I can not walk without losing my balance. I also have the jerks and kicks at night when I am sleeping. My husband has his own bedroom because of all the girations I go through when I'm sleeping. I've found that magnesium really helps my restless leg syndrome more than anything. There again, you would have to ask your Dr. about this and how much you can take a day. I've had fibromyalgia since 1994. I got a bad case of e-coli and was extremely ill. I never felt back to 100% afterwords. The Dr. said I was perfectly ok and the e-coli was out of my system, but I knew there was something wrong. I checked myself into Mayo Clinic in Scottsdale, AZ. and they diagnosed me and I had never heard of such a thing as Fibromyalgia. My first Dr. that I had for fibromyalgia after my diagnosis, told me to roll with it because if I fight it, IT will win. I never forgot those words and started gradually changing my attitude about it. Hard thing to do. Bless your heart Evonne. You are doing the right thing, to find a Dr. that will listen to you and then take action. I don't go to anyone that doesn't understand this disease. Good luck to you.
Blossom 25:Good-Luck:

Evonne you have discribed me to a "T". I also have fibro and I have had tremors for several years now. My Dr. knew right away it was from muscle weakness due to the fibro. It's not in your head. Flexeril helps me some at night. I don't jump like I used to. I fell backwords about a year ago and hit the back of my head and I instantly started the tremors all over my body. The emt's were upset with me because I couldn't stop long enough for them to get an I V in me. Many in the medical field look at you like you are a hypocondriac. But, I've been through that before I was diagnosed. I understand your concern and I would be ruling out a bunch of things also. You never know. Fibro can disguise a few diseases that have the same symptoms. So good luck to you. There is another group called Fibromyalgia Families if you'd care to look it over. I just started it and so far we have 3 members. Would love to have you join us. Best of luck to you!!! Blossom25

How do u find Fibro families?

Wierd Symptoms
 

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.

Fibromyalgia and Tremors
 

I to have fibromyalgia and tremors, but mine are probably familial. My grandmother had them and I noticed mine about ten years ago but was told it was from the problems with my neck. Then a few months ago I changed blood pressure meds from a beta blocker to Norvasc. Going off of the beta blocker brought the tremors to full capacity and back to the doctor I went. I am now close to being diagnosed but am still having problems with meds but will see my Doc on Dec 31st and the Neuro Doc on Jan 20th. I am already being processed through SSI and hopefully will be approved soon.

I see your quagmire, and commiserate
 

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

Have you thought of maybe MS?

fibro, tremors and mercury toxicity
 

Have you ever had a blood test for mercury level in your body? do you have silver (amalgam) fillings, eat fish, use fabric softeners, cosmetics, plastics...? mercury is a neuro toxin and is one of the elements we are exposed to most. I had some of the symptoms that you described and had my silver fillings removed...symptoms went away after a couple of months. This procedure needs to be done by a dentist trained for this as more damage can be done by the exposure during removal. I wish you well. Beth

Thank You so much for telling your story! I am bi-polar and have Fibromyalgia, tremors, degenerative disc, spinal stenosis, and other physical problems. The things that struck me were you said you are stiff in the morning and feel like bubbles in your head or a helmet on your head. I have this type of thing going on but feels like electrical shocks in my head. I just read another post about CRPS type I and II. (Type I used to be called RSDS) Almost every symptom on there matched mine. I am being referred to The University of Washington and that will be on my list of questions. Just Google it to read about it in Wikipedia. I hope you find some answers soon. The waiting is what kills me! I have a pretty low patience level anymore. Pain does horrible things to us physically, mentally, and emotionally.

I have doubts as well
 

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.:p

Welcome Jellybaby. :Wave-Hello: