Fibromyalgia? Really? I'm sure it's something else.

[Kingjarl]

Let me begin by saying I HATE the term 'fibromyagia'... I was diagnosed 11 years ago as an 18 year old. Here are a list of my symptoms (which is by no means complete), or at least the ones that are present every day:
1. Burning, swollen feeling in my hands and feet.
2. Burning and severe tightness in my lower back.
3. Vivid, horrible nightmares.
4. Sleep apnea (not horribly bad, but present).
5. Night terrors (awake, sensing horrible presence nearby, unable to move or talk).
6. Inability to stand upright without debilitating pain, for more than 5-20 mins.
7. Fibro 'Fog' - I can't think straight.
8. Wake up more tired than when I went to bed (3700+ days and counting).
9. Cannot wake up.
10. Constantly yawning.
11. Achy, achy joints.
12. Chest (heart?ribcage) pains. They last from 2 seconds to 2 minutes and feel like the hand of God is poking me in the chest.
13. I'm friggin' WRECKED, people! I'm so tired all the time, every day, day in and day out... and the pain is driving me insane.



Is there anything I'm missing? What can I do? I really, really need some help...

Thanks,

Matthew

[Truthfinder]

Treaty, you sound like another Lyme or Tick Borne Disease candidate.

Lyme and TBDs are not the cause of everything.  I do not mean to imply that.  But the problem is that they can cause MAJOR problems, and doctors are simply not taking them into consideration enough when making a diagnosis.

And I am posting on this board because there are SO many people with the Fibro or the CFS/ME diagnosis who eventually find out they have Lyme or a TBD.  

The sooner you find out that you have a TBD, the better your chances of recovery.

I will post the link to the Medical Questions forum over at LymeNet.  Near the top of the list is Newbie Learning Help Links which is a good place to get started:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum;f=1

Tracy

[treaty]

I have been diag. with Fibro for 9 years and my symptoms are extreme muscle pain with no swelling, (except for my ankles and fingers) sleeplessness because of the deep aching pain, extreme stiffness, hip pain, numbness, and I seem to have acquired digestive problems..
Now my symptom have compounded.  I now get seizures of some sort at night and I bite my tongue and cheeks and twitch.  I also have them during the day and my legs will freeze up on me and I fall.  My stomach bloats, my neck cracks and I have a hard time concentrating/remembering.  My face on one side goes numb (usually my left side)and two fingers on my left hand are tingly. Being cold is also worse on me, I have a hard time warming up.  I get the chills a lot and stomach aches.  I don't know about most peaple but I feel these things and I also don't like my diagnosis.

[Truthfinder]

(Gee, so sorry for the goffy symbols in my posts.  I'm working on it.)

I know.  Most docs seem to think that if you don't experience a tick bite or have the classic EM rash, you can't have Lyme.  That just isn't true.  Only about 50% of people with Lyme even remember a bite or a rash.

There is going to be a special coming on TV in March or April - all about the connection between Lyme Disease and MS.  Well, there's at least one case that will be in there on Lyme and ALS, too.

I plan to post about the program when I have a definate date and time of when it will be aired.  I think it will be of interest to a lot of people.  (like you)

All the best,

Tracy

[Kingjarl]

I went to see an internal medicine specialist today, and he said based on the case history, there's no way it's lyme disease. I dunno, we'll see where it goes.

Check this out: many of the symptoms I have are also correlated to multiple sclerosis. Another interesting find.

Yep, things have been rough - symptoms are getting worse, and I'm going nuts. I think I'm going to lose my job. I'll have to check into disability pay first.

Anyways, I'll check into lymenet. Thanks for the tip!

[Truthfinder]

Thanks, Patsy.  Don

[Kingjarl]

That's a good observation on the dreams. It's definetly a reflection of what's going on inside, I'd say.
Since my last post, I've had two complete mental breakdowns - really felt like I was going insane. The Dr. switched my medications to help me with sleep, which helps a little, but now I can't wake up during the days. Anyways, I've got an appointment with a specialist tomorrow - should be interesting. Nothing is going right for me right now.

[patsy10]

I like your posts.  I completely agree with your last paragraph.

[Truthfinder]

Mathew,

I have awful digestive issues

[darlinsummer]

I have exactly the same issues you have. And for years I have hated the term fibromyalgia and chronic fatigue. I knew there was something else wrong. They tested for MS and lupus and even though test would come back inconclusive. So after 7 years I finally found what i belive is to be it. Myalgic encephalomyelities. ME for short. Most docters say it all the same, but it is NOT. In fact docters in Canada and Britian are doing alot of research into this diease and know more than most american docs. The web sits that might help you most is www.nightingale.ca . a docter Byron Hyde is very knowlegable in this diease. Also another helpful site is //uk.geocities.com/me_not_cfs. I have had every symptom in the book. And docters where always saying it was in my head. But why would i want to be bedbound at 26years old. I love life and ecspecially the life i had before i was sick. So I knew i wasn't crazy and hopefully these sites will help you too.
Hope you can find some answers
darlinsummer

[darlinsummer]

I have exactly the same issues you have. And for years I have hated the term fibromyalgia and chronic fatigue. I knew there was something else wrong. They tested for MS and lupus and even though test would come back inconclusive. So after 7 years I finally found what i belive is to be it. Myalgic encephalomyelities. ME for short. Most docters say it all the same, but it is NOT. In fact docters in Canada and Britian are doing alot of research into this diease and know more than most american docs. The web sits that might help you most is www.nightingale.ca . a docter Byron Hyde is very knowlegable in this diease. Also another helpful site is //uk.geocities.com/me_not_cfs. I have had every symptom in the book. And docters where always saying it was in my head. But why would i want to be bedbound at 26years old. I love life and ecspecially the life i had before i was sick. So I knew i wasn't crazy and hopefully these sites will help you too.
Hope you can find some answers
darlinsummer

[Kingjarl]

Wow. I live in a small community in northern Canada... feels like I'm the only one sometimes, especially being 29 and in really good shape (on the outside).

Do any of you guys/gals have digestive problems? For instance, fibrous vegetables seem to get me bloated and have RIDICULOUS amounts of gas. Sometimes I'm constapated, sometimes I'm not, but barely ever is it a 'normal' bowel movement.

I'm surprised to find that others have these dreams/nightmares too. Do any of you die in your dreams? I do all the time. Also, I can 'feel' in my dreams. When I'm hit in the head, it hurts. When I'm shot in the head, I can feel the pressure.

Thanks again,

Matthew

[Truthfinder]

I found this out from a holistic doctor back in the 90s.

And what I experienced with the EBV was these awful, morbid, macabre images when I was trying to fall asleep - stuff right out of the horror movie gallery (that I don't even watch).  A friend experienced very similar images with EBV.

Since this usually happened before I went to sleep, perhaps it does not qualify as a "nightmare".  But nightmares can be a sign of Lyme Disease, so either way, there could be a nasty little microbe at work in the body.

Tracy

[patsy10]

Wow!  I didn't know about the EB and nightmare connection.  I have horrible, scary nightmares every night......

[hm2007]

My doctors think that fibromyalgia is in fact depression and anxiety multiplied by 100.  

[patsy10]

I have some serious pain as well...I'm also an RN.  Do you think it's a coincidence that health care workers seem to get fibro/cfs so often?

[PlateletGal]

All I know is everyone I've met who has been diagnosed with fibromyalgia, including three R.N.'s, are all in some serious pain. They also get dizzy sometimes and have a lot of symptoms that CFS patients' have.

[patsy10]

I'm sure it's something else too!!!! I have the same diagnosis.  I have many of your symptoms and many, many more.  I hate the diagnosis as well.  It's a diagnosis they make when they can't or don't want to look anymore.  All I can say is keep searching.  Hopefully you will eventually get a legitimate answer.  Have you been checked for lyme?  Also, fibro is very rare in men.