Looking for fibro answers

[Guest]

My symptoms started December '08, when I awoke to having my arm going completely numb, blurred vision, and a drunk-like feeling while speaking. It went away in a matter of minutes. I went to the hospital to make sure that I didn't have a stroke.

Then over the course of the next 5 months, my symptoms included: facial and neck tingling, foot pain, hand pain & tingling, shooting pain in rib cage, twitching in my calves and arms, geographic tongue, and extreme fatigue. All of these were checked by my primary care doctor, a neurologist, and an ENT. An MRI and an EMG on my arms came back negative.
With the exception of the geographic tongue, and occasional neck tingling, all symptoms suddenly stopped and did not reappear until twenty months later, with the foot pain returning.

During the time that I was feeling pretty good but still had geo tongue, my PCM diagnosed me having an IgA deficiency and migraines. Then in August '10, I started suffering from constant nausea and irregular BMs which led to a endoscopy and a h. pylori diagnosis.

Right around the time of the h. pylori, my other symptoms returned - extreme fatigue, twitching, foot & hand pain, and hand tremors. After finishing my h. pylori meds, I was diagnosed with cdiff and was on medication for another three months for that.

In December, I started feeling twitches in my face and sometimes it felt like I was talking weird; however, my wife said everything looked fine and that I was talking normally. I had good days and bad days with my facial twitching. Sometimes it felt like I could not pucker my lips and whistle, but I could. Sometimes it felt like I was drooling out of one side of my mouth, but I wasn't.

Now all of my problems with my face seem to have subsided, with the occasional twitching coming from my left lower jaw underneath my ear. My hands and wrists hurt most of the time (more when being used), and I have joint popping in my left ankle and both hands (when I make a fist, I can hear the joints popping); I also have occasional pain in the bottom of my foot. The good news is that my energy level is now consistently high.

I have been seen by my doctor, a rheumatologist, an allergist, three neurologists since last August. An MRI in November came back normal. All of the doctors think that I have fibromyalgia and have put me on Lyrica.

They have assured me that I do not have ALS or MS; however, I wonder why I'm still left with the twitching and pain.

I am a 38-y.o. male who is generally active (basketball, motorcycle riding). Is the Fibro diagnosis correct, or should I request an EMG (even though my most recent neuro didn't think it was necessary)?

 

[Guest]

hello ibis.
i see no one has answered your post so here goes.
firstly it sounds nothing like als,i can asure you that with your symptoms your twitching is benign otherwise your neuro would have done an emg already.
how many mri's did you have? were they of the brain and spinal cord? with contrast?was your neuro exam ok?........reflexes,no clinical weakness found.
if all this was checked and everything was negative then your ok.
here is some info on fibromyalgia which you may already know,you seem to have quite alot of the symptoms.
maybe you need more time on your medication to see a difference or the dosage needs putting up,please talk to your doctor about it.
i know someone with this and i know its no picnic .
take care.



The word fibromyalgia means pain ('algia') coming from the muscles ('my') and fibrous tissues ('fibro') such as tendons and ligaments. Most people with fibromyalgia also have other symptoms in addition to the pains - see below. Therefore, fibromyalgia is sometimes called fibromyalgia syndrome, or FMS. It is a chronic (persistent) condition. Fibromyalgia does not affect the joints, and so is not an arthritis..
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What causes fibromyalgia?

The cause of fibromyalgia is not known. However, research has shown that people with fibromyalgia have certain subtle changes in some chemicals in the brain and nervous system. For example, there seems to be a minor change in the level of certain brain chemicals called neurotransmitters. These are the chemicals responsible for transmitting messages between nerves and between brain cells. Research studies have also shown that people with fibromyalgia tend to have an increased amount of a chemical called substance P in the fluid that bathes the brain and spinal cord (the cerebrospinal fluid - CSF). This substance may be involved in the way pain messages are transmitted.

A current main theory is that people with fibromyalgia have an oversensitivity to pain signals in the brain. This is called 'central sensitisation'. This may be due to various minor changes in brain chemicals. What triggers or causes these changes is not known.

Note: the term fibromyalgia has been used for a long time. However, because the cause is now thought to be due to the processes described above in the brain and spinal cord, the term 'fibromyalgia' does not accurately describe the condition. That is, there is little evidence that the disease is due to a problem with peripheral tissues such as muscles, tendons and ligaments (although the pain is often felt in these tissues

The main symptoms are pains felt in many areas of the body, and tiredness. Some people also develop other symptoms. The severity of symptoms varies from person to person..
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Pain

Pain can occur in any area of the body. Typically, many areas of the body are affected, and some people feel the pain 'all over'. The neck and back are the sites that are often the most painful. The severity of the pain can vary from day to day. The pains may be made worse by stress, cold or activity. After a night's sleep, you may also feel quite 'stiff' for a few hours. Many areas of the body may also be quite tender..
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Tiredness

Tiredness (fatigue) is common, and is sometimes severe. In some cases it is more distressing than the pain. It is also common to have a poor sleep pattern. You may wake feeling exhausted. Many people feel worst first thing in the morning, but improve by the afternoon. Even a small amount of activity may make you tired. The tiredness may cause you to have poor concentration.

Various other symptoms have been reported by people with fibromyalgia. Also, there are a number of other conditions that often occur at the same time as fibromyalgia. As a consequence, quite a number of other symptoms may occur in people with fibromyalgia. The following are perhaps the most common, but it is not an exhaustive list of every possible symptom that may occur:.
•Headaches are common.
•Irritable bladder is common - you may need to go to the toilet more frequently than usual.[
•Irritable bowel syndrome occurs commonly in people with fibromyalgia - with abdominal pains, sometimes with diarrhoea, constipation or bloating.
•About 1 in 5 people with fibromyalgia also have restless legs syndrome (see separate leaflet called 'Restless Legs Syndrome' for more detail).
•Painful periods occur in some women with fibromyalgia.
•Pins and needles in fingers and/or toes.
•Some people describe a feeling as if their hands or feet are swollen (although they are not actually swollen).
•Depression or anxiety develop in some people. It is not clear whether these are part of 'fibromyalgia syndrome', or develop as a result of having this condition.
•Some people with fibromyalgia also have CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis).

How is fibromyalgia diagnosed?

Fibromyalgia is usually diagnosed by the typical symptoms and a doctor's examination.

To make a firm diagnosis, symptoms should include widespread pain involving both sides of the body, above and below the waist, as well as the neck, back and pelvis, and have been present for at least three months.

A doctor's examination will find tenderness in various parts of the body. During the examination a doctor may press firmly with a thumb on various parts of your body. The amount of pressure used does not cause pain in people without fibromyalgia. However, the pressure typically causes people with fibromyalgia to wince with pain. The increased sensitivity to pressure (being tender to mild pressure) can be in many places in the body, and may be all over. However, a doctor may press on certain specific sites (as shown in the diagram). These sites are generally fairly sensitive areas and the easiest to check for tenderness which is typical in people with fibromyalgia.

Apart from finding areas of tenderness, the examination by a doctor will usually find no other abnormality. There is no laboratory test that confirms the condition. However, tests are advised in some cases to rule out other diseases that can cause similar symptoms. For example, your doctor may do some blood tests to rule out an underactive thyroid, early arthritis, etc..
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[Guest]

HI

I have been diagnosed with fibromyalgia for decades. I have never noticed any issues with my tongue. I'm pretty sure geographic tongue isn't a sign of ALS, either.

With fibro, as she posted above, there are a whole host of symptoms--the biggest being pain that seems to be everywhere. Lyrica and similar drugs can take up to 6 weeks to show any benefit--if they help at all.

Good sleep, moderate exercise and warm therapy (whirlpools and heated pools) are generally helpful with fibro pain. Sleep is a huge issue in fibro--we don't get enough Stage IV sleep.

Very often--an accident or illness seems to bring on the symptoms--but at least with me--the signs and symptoms don't ever seem to "go". They are there all the time.

There is a lot of info on fibro out there, though