Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS).


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Old 08-24-2013, 02:57 PM #31
Blossom25 Blossom25 is offline
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Originally Posted by Evonne View Post
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
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
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Old 08-25-2013, 08:12 PM #32
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How do u find Fibro families?
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Old 09-27-2013, 06:34 PM #33
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Default 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.

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Old 12-22-2013, 03:33 PM #34
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Default 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.
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Old 01-16-2014, 11:02 AM #35
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Default 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
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Old 01-21-2014, 06:12 PM #36
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Quote:
Originally Posted by Evonne View Post
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
Have you thought of maybe MS?
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Old 02-22-2014, 03:13 PM #37
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Default fibro, tremors and mercury toxicity

Quote:
Originally Posted by Evonne View Post
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
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
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Old 08-09-2014, 03:15 PM #38
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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.
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Old 12-15-2014, 02:52 AM #39
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Quote:
Originally Posted by Evonne View Post
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, 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.
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Old 12-15-2014, 09:59 AM #40
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Welcome Jellybaby.
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