What do your doctors tell you the cause of FMS and CFS is??

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KeepHope
Regular Member


Date Joined Oct 2008
Total Posts : 222
   Posted 1/9/2009 4:42 PM (GMT -7)   
What your doctors tell you the cause of your symptoms are??

Post Edited (KeepHope) : 3/8/2009 1:10:56 AM (GMT-7)


patsie
Regular Member


Date Joined Dec 2008
Total Posts : 478
   Posted 1/9/2009 4:50 PM (GMT -7)   
My Boston neurologist claims the cause is an autoimmune disorder affecting the nervous and muscular system.

A doctor in NYC says it is tension myositis syndrome which is caused by the brain, fascinating theory.

My rheumatologist in fla says it is totally a muscular disorder caused by oxygen deprivaation to the muscles.

Think anyone can get on the same page!!!!!

Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 1/9/2009 5:33 PM (GMT -7)   
One Doctor told me he had no idea. Here's your Neurontin prescription.

The next one I just told him I had severe muscle spasms and a Fibro DX that was keeping me from working which was the truth. I was going to have to quit and only a old script of Vicodin was even getting me through the day and I didn't want to take Vicodin and Baclofen seemed to help, so he put me on that for over a year now. So a second no opinion.

Then there was the two years of going to a Shrink. So I had a two inch thick file of Mood Disorder written on every page. They finaly realized their treatment wasn't working and decided I had a lousy Doctor and the mood disorder was do to physical illness.

I find that blood flow theory there interesting. Shows how much he knew, since its muscular tension that restricts blood flow. A 20 percent increase of muscle tension equates to a 80 percent reduction of blood flow through the muscle, so and if blood flow was the cause, all you would have to do is Yoga everyday and the blood flow would be great.

The tension myositis syndrome sounds far more realistic. It would cause chronic tight muscles, which would restrict blood flow, which would cause nasty stuff to build up in the muscles causing pain, and it would also compress the nerves passing through the tight muscles causing nerve pain and brain feedback to the areas those nerves are feeding causing more tension and pain.

So, on me that is two I don't know and one chronic depression.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.

Post Edited (Grailhunter) : 1/9/2009 5:40:44 PM (GMT-7)


Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 1/9/2009 5:47 PM (GMT -7)   
Gee, I hope that Ribose thing is correct. I started taking 12,000 milligrams a day. I actualy am noticing a difference.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.


Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 1/9/2009 7:17 PM (GMT -7)   
The D-Ribose you can get out of a health food store, but its expensive at the doses you need to take. The best way is order off the Internet in the biggest bottle you can find at the best price. Thats what i am doing on the next bottle.

Well, it certainly isn't my idea. Allot of different Doctors have been pointing at the mitocondria for different reason for a long time. I also noticed when I would try to go back to work a couple of times in a physicaly demanding job that the only thing that seemed to really help my energy levels was very high doses of COQ10, which is pointing at the Mitocondria. And then I noticed that when I spent a year on Amitriptylene at 100 mgs a day and 20 to 40 milligrams of Paxil, that when I came off of it, so the drug side effects were gone, I didn't have depression or anxiety anymore and my energy level was higher then when I went on it, and I could still sleep normaly, but my energy level was still hugely fluctuateing. I was going back and forth between high energy level and dragging. So it was like the anti-depressents had partialy fixed something, but there was still something missing.

Essentialy, after coming off those high doses of anti-depressents that would do a certain amount of repair to the Hypothalmus, if I would have had a consistent energy level, I would have felt totaly normal for about 3 months before it started to mentaly degrade again and took the increased energy level with it.

I am currently trying to treat this with high doses of D-Ribose and COQ10 and high dose Ascorbic Acid for the Mitocondria, and high dose Acetyl L Carnitine for the Hypothalmus, since the Klonopin I take down regulates the Hypothalmus and Acytyl L-Carnitine is known for countering the negative brain effects of Benzodiazepines. Also, the D-Ribose and CoQ10 should help with brain circulation and cellular energy in the brain, so I am hoping that helps to repair the Hypothalmus without having to use anti-depressents again. Depending on the effect, I may increase it even more.

I don't really know anything except what I read, try to make sense of the pieces, and then play guinea pig. I'll get back to you if and when I am back to walking malls and going out to movies and visiting relatives on weekends instead of just going from my job to home because there is no reserve.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.

Post Edited (Grailhunter) : 1/9/2009 7:32:26 PM (GMT-7)


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 1/9/2009 8:07 PM (GMT -7)   
In short he said it was my central nervous system.          sue2z

Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


JCgurl
Regular Member


Date Joined Dec 2008
Total Posts : 176
   Posted 1/9/2009 10:29 PM (GMT -7)   
KeepHope, I have heard that it is developed from a traumatic experience, which seems like it MAY be correct. I was in a very bad car accident when I was very young, my Rhuemy thinks that may be why I have Fibro today, or I have been told it could even have been from being Bipolar, which has been "mentally traumatic" to me.
 
Some say it is psychological.
 
Who the heck knows! confused  It is a crazy condition.
 
____________________________________________________
21 years old
 
Fibromyalgia, Bipolar Disorder, OCD, Irrational fears

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 1/10/2009 11:07 AM (GMT -7)   
I have not gotten much from my docs except "no one really knows".
 
My GP did tell me the hot and cold flashes I get come from the hypothalamus being messed up. I have high BP and I have noticed when I remember to take the CoQ10 at 50 mg twice a day my BP drops and I've had to even go off some meds at times because of it dropping. I finally got back on it after the holidays and the BP has really been down. So I really think there is something to the hypothalamus theory.
 
But I also think there is something that goes wrong in the central nervous system. So many theories and so few answers.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 1/10/2009 5:46 PM (GMT -7)   
I know mine came from massive stress for months which became some fatigue and sickness which then became increasing anxiety, which then became insomnia for days and then 20 or so panic attacks a day untreated for about 6 months before I managed to stop them with Cognitive feedback excercises and refocusing that I taught to myself, and then when I finally got the panic attacks under control I was left with a could barely move fatigue for about 2 years and lots of pain. I eventualy regained about 75 percent capacity, cycleing back and forth between periods of feeling semi well and total exhaustion, but that left me vulnerable for crash and burn number 2 when the stock market collapsed, took my retirement, house, car, most of my savings. Basicaly the fear of the pain and trauma from the first episode and being weak, and only having a partialy rebuilt sense of self didn't hold up.

The story is to long to tell, but suffice it to say that the first couple of years of this, especialy the first 6 months with unrelenting panic syndrome, high anxiety inbetween, a totaly depressed and dysfuntional brain, unexplainable body aches everywhere, total exhaustion, TMJ that had my face in constant pain and my ears plugged all day long was extremely traumatic. I even told one of my shrinks one time I may as well have been in a prisoner of war camp with a steel can over my head and someone torturing me every day for 6 months. It was bad enough it caused complete Ego destruction. I completely lost my sense of being the person I had been my whole life and was left with shattered pieces that were nothing like the person I had viewed for 38 years as being me.

So, I guess in a way, on me you could call it psychological. It would be PTSD for me on the psychological side. But no shrink is going to believe that a combination of depression, anxiety, panic disorder and a whole host of torturous physical problems, no matter how intense on a daily basis or lasting however long, is going to cause PTSD. What else could it be though, since your psyche can become so damaged that every time it looks like your heading back into the worst times that were very traumatic to you, it makes it worse and you have to get a fast grip on yourself, or it can even cause another crash and burn.

There is one moderator here. I am sorry I can't think of your name at the moment, but you have stated that you have essentialy had this problem since you were 3 years old and I notice you have allot of stuff that has been stacked on top of that. Your frequent responses to Fibro basicaly amount to "push on." Its good advice, but it is also the advice that having to live with chronic debilitating problems from a very young age, and having to learn to push forward to have a life at all would produce. I know this because I had Polio as a child, and I had to do the same thing.

So I tend to agree with the Hypothalmus damage and down regulation theory, but I also think there is a psychological component that varies from person to person on how bad the psyche got hit by whatever the trauma was, and the long term psychological damage, and what their basic mental makeup is to begin with. I also agree with the mitocondria aspect of it, because the mitocondria not having sufficient energy would keep the Hypothalmus from repairing itself along with the issues of gross fatigue, weakness and pain. But, even if those were the two main issues, and I don't know if they are or not, the damage to the Psyche would still have to be repaired also before the person could really feel well. If they got physicaly better, and if their brain started working better, they would still have to go out and make use of it to rebuild their sense of self as being okay, and not damaged.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Thorasic Degeneration, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Dyspnea. Disequilibrium.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Niacinamide, Glucosomine, Condrotin, MSM, L-Carnitine, D-Ribose.


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40590
   Posted 1/10/2009 6:08 PM (GMT -7)   
My doctor said it was a glitch in the central nervous system also. But I think stress and traumatic events can set it off. Even a virus. Like you said, so many theories, so few answers. And the answers that we get are still a type of mystery. Anything seems to go with fibromyalgia.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


colabear2890
Regular Member


Date Joined Nov 2008
Total Posts : 103
   Posted 1/10/2009 7:09 PM (GMT -7)   
my doctor said i got it from mono. i had mono, and got fibro like a month or so later. i don't remember exactly. it was a while ago.

-Aliza
"never regret something that made you smile"


Katted
New Member


Date Joined Mar 2005
Total Posts : 12
   Posted 1/10/2009 8:59 PM (GMT -7)   
I was told that people have a predisposition to Fibromyalgia, and an injury (like a concussion) or a serious illness (like mono) can cause it to surface. So, once it surfaces, a lack of serotonin and overproduction of the pain chemical (chemical P, I think), causes super sensitivity to pain. Since you feel too much pain, it puts stress on your body, the physical and mental stress of this causes sleep difficulties. Poor sleep causes fatigue and increased pain and perpetuates the cycle.

Another idea is that, A. you do have a predisposition to Fibro and it can be brought about by illness/injury INCLUDING a sleep disorder, which would obviously make it seem worse.

Since Fibromyalgia describes a specific set of symptoms but not an actual disease, I think it doesn't have one specific cause (unlike how nausea can be caused by a stomach virus). I think there is some part of the brain, a protein or what not, that when damaged by whatever the TRUE illness is (sleep disorder, arthritis etc) it causes Fibromyalgia.

julieleaps
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 1/10/2009 10:01 PM (GMT -7)   
From something I read: about 50% of fibro cases are cervical trauma-related.

Makes sense for me, since my fibro emerged after my anterior cervical discectomy with fusion at levels C5-7. One year post surgery, I took a nasty slip on the ice. This time last year, actually. In April 2008 I was Dx'd with fibro, as my pain from the fall just wasn't going away (NS referred me to my current rheumy).

Some study I read stated that for some people the position that they put you in for my surgery can bring on fibro...

Of course, I ended up needing surgery about 10 years after I got pushed down some concrete steps and hit my head. It takes that long for the ostephytes to grow and cause the severe cord compression I experienced. At the time of this event, I began what I called my 7 years in the desert: a hugely stressful time in my life.

Who knows? Emotional or Physical Trauma? Maybe some of both.
Still learning how to manage my Fibromylagia, and all the lovely gifts it brings.   
I had severe spinal stenosis, had fusion done on C5-7, and my life has changed. 
 
 

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