Fibro Chronic fatigue syndrome and fibromyalgia

[mamachick]

I was diagnosed with CFID and fibro in 1989 when I was only 30 and following childbirth. Pos for epstein barr. Some question if it were not triggered by rubella vacine following birth. Definately related to ptsd. Also very real. When you think that stress indirectly can cause about any illness including cancer, it no wonder. I think of a nervous system overworked-no wonder one becomes exhausted an immune system haywire.

At 50, had hormone test and they said I have adrenal fatigue (diagnosed from saliva test). Sounds the same as CFIDS. First you produce too much adrenolin as a result of stress, and eventually little or none? (I think) At any rate, causes exhaustion. One book I recall is "the body bears the burden" by Levine I think.

I have heard that people with fibro do not go into REM sleep as normal, muscles do not shut down, wake with pain. I have the trigger points and go for massage to get them released but boy does it hurt.

CAT-one thing I discovered with CFS is that we might always want to guard a bit more than the norm. When I was better, I ate very healthy and regular. I went to bed between 10 and 11 every night and up at 7. I knew that I needed this to maintain. I stayed very healthy and walked 4 miles a day and everyday. As a single parent of two teen daughters, and having returned to work- I found myself falling off my wagon. There were times when my schedule did not permit me to walk or I was skipping meals. Then I had an accidnet /broken rib and could not sleep as it got worse. Then kids push those late nights or have friends over etc. Little by little, it returned and so did ptsd syptoms. During the healthier years, yes I could stay up late one night every month maybe-more than that was asking for trouble. I took an anti dperessant Serzone that helped with sleep but they took off market too.

 

[nie]

My fibro diagnosis also came right after the birth of my first child at the age of 30. I didn't have much, or any, pain issues before the pregnancy. Now I feel like my body is just falling apart.

 

[mamachick]

nie I am so sorry and I remember how hard that is with an infant/toddler. Mine did get better though. It taught me I had to put myself first sometimes, very hard for me. I wish I still knew how 21 years later.

 

[OKRADLAK]

OMG yes. PTSD is a very very very very expensive disorder and if they refuse to treat it, hell yes, you can get all sorts of freaky things. The stuff I have no is too bizarre, pain syndrome, blood issue, others,heart, neuro....totally all hit at once. Drs are like, SHHESH. I am like, 'Screw you. You let me lay in the bed with PTSD for 2 years and no help." Pre-existing condition. I had to wait TWO YEARS.

So now I am so messed up. I have no idea how to process 1/3 of it.

 

[mamachick]

There is a local neurologist that invented some specialized test of the head (not pet or spec but similiar), did the test on me and $2000 later, confirmed I had the headache that I told him I had. What to do about it-????But he said it was real. I thought a polygraph would have been cheaper.
I told my gp about sleep problem, cant get awake in the morning, cant hear alarm etc, sent to sleep specialist-spent night in sleep lab-diagnosed sleep disorder with daytime sleepiness, put me on Adderoll (stimulant). But the important thing is that now they believe me right.

 

[PTSD sufferer]

I was diagnosed with CFS and Fibro at age 12, with thoughts that the problem began when I was 8 years old. My PTSD reared its ugly head when I was 30. That's quite a long gap between the two.

I was treated for years for the CFS - hydrotherapy to gamma globulin injections. Nothing really helped, but my specialist at the time (one of the top in the country at the time) explained that there are unknown causes for CFS and Fibo. However, they thought it had to do with a) the immune system dysfunctioning (over active or under active) b) an undiagnosed virus damaging the immune system c) genetically inherited immune deficiency d) neurologically related. I was also told that CFS, Endometriosis and IBS are all inter related as is it is a problem with the brain sending messages to the various areas of the body to perform their functions. I've been told a great deal of theories.

There is no doubt that stress and emotional trauma have a sever effect on the body. But whether the two are related is debatable. The problem is that we know the cause of PTSD - emotional trauma, but we don't have a consistently and scientifically proven cause for CFS/ Fibro. Therefore, I think it is unwise to make a link between the two.

 

[mamachick]

Often some sort of accident precipitates firbromyalgia and cfids and even irritable bowel syndrome. I am not good at explaining anything biological so I don't try, but early on, I did a lot of reading and seeking opinions of various professionals for interpretation.

When under much stress, the body goes into fight or flight response. This changes the chemistry in the body in many ways-brain-breathing-heart-adrenolin, etc. I think its going to be debatable for a long time but worth considering the correlation in order to treat the body very holistic.

Early on in my diagnosis, I did not want to believe that anything mental or emotional was responsible for my physical symptoms. My interpretation was that if it was caused by mental or emotional-I should be able to control it, I was causing it, or that it would mean that my symptoms are not real or are in my head. It took me a long time to change that attitude and be more open to this idea. If there is correlation of trauma and cfid/fib-it is still not in the persons head and it is not made up, and they do not cause it.

PTSD sufferer-I would like to know why you think it unwise to make a link between the two?
Like you, I have been told a great many theories and you are right, nothing concrete.
Even though we know the cause of ptsd, it is not consistantly and scientifically proven either is it? I may be mistake-but I think that it is not because someone may have severe trauma and not develop ptsd and another with less trauma may develop it (subjective experience). Symptoms vary as well. Emotions and physical illness are definately linked. For example, angry people are at much greater risk of heart disease. (other things also factor in of course).

Some symptoms of cfids are the same as ptsd (concentration, memory, etc) These symptoms can also be attributed to mild traumatic brain injury. I just know that the fatigue is debilitating and I have described it as feeling like my nervous system is shot at times.

Endometriosis is actually one disease that can be identified with certainty. IBS, cfid, fibro are all diagnosed only when everything else is ruled out. That in and of itself leaves potential for inaccuracy.

Over 20 yrs ago after being diagnosed with cfids, I went to a therapist because I was struggling with managing. He did a Co dependency group and I attended with about 20 others. (Very helpful for me as I was very co-d) One woman in there suffered headaches and her gp had sent her to therapy. The therapists kept working with her in group to admit she had anger toward her sister and others. (headaches caused by anger) She continued to deny and was clearly frustrated. After a few weeks, a repeat test showed a brain tumor that had been missed.

 

[Lionheart]

In addition to CFS and fibro I was diagnosed with sensory sensitivity, (which I think is attributed to the CFS but could be because of PTSD); I am sensitive to chemicals, temperatures, sunlight, sounds, etc. I also have all of the symptoms of ADD, but that stems from the combination of CFS, Fibro, and PTSD according to My therapist and psychiatrist.

I know that scientists did tests on mice, stressing them out to the max consistently for long periods of time and the mice developed bleeding of the adrenal glands and died. So it is not news that stress can actually kill us or at the very least make us sick physically and that is why I was looking for a correlation between PTSD and CFS/Fibro.

Perhaps CFS is independent of PTSD, but it seems to me that the constant high levels of stress compromises the immune system and indirectly leads to CFS. Either way, I stay exhausted and in a mild state of chronic physical pain and I am trying to get help for it, but the doctors are less than helpful. Thus this thread. I appreciate all of the replies and guess we will eventually find out the truth about these disorders.

 

[aditi]

I had CFS quite seriously for 5 years and although I function now I don't believe it's gone completely. The latest trauma brought some of the symptoms back but I am very careful to rest and try to head it off at the pass, so to speak. I believe the first attack was my body reacting to buried trauma.

"Perhaps CFS is independent of PTSD, but it seems to me that the constant high levels of stress compromises the immune system and indirectly leads to CFS."

I agree with that Lionheart. The abuser who brought me here uncannily 'caused' another woman to develop fibromyalgia, after making her suicidal. There's a link, I'm sure.

 

[mamachick]

I think you're right Lionheart-I don't know what the sensory stuff is related to but I am also very sensative to perfumes, during last exacerbation and again now-photophobia, temps, sound, and fabrics on my skin as well (wore all cotton loose fitting clothing because of discomfort). Dont know what it is related to either. High stress definately compromises the immune system and mine feels shot. Im not confident we are going to have conclusion in this lifetime but I do think stress management is where to begin. There are some good books on Adrenal Fatigue.

 

[PTSD sufferer]

PTSD sufferer-I would like to know why you think it unwise to make a link between the two?
Like you, I have been told a great many theories and you are right, nothing concrete.
.

I refer to linking the two unwise as it is not scientifically proven. There are millions of articles and professionals who specialize in both PTSD and CFS. Yes, PTSD is scientifically proven to be trauma related and hence psychologically related and treated. CFS is unproven to be related to anything in particular, it has theorized causes but no proven cause. Until a link is scientifically proven, I personally would not link the two.

 

[mamachick]

PTSD sufferer-You're right. I see your point and appreciate it.

I tried many things for CFS years ago as you did but were not proven to help because of unknown cause-but I still tried. Bottom line for me-stress reaks havoc on the immune system (adrenal fatigue is another illness) and CFS is an immune disease. May or may not be related to virus, trauma, multitude or other things. My own experience has been that when the stress has been managed cfs was better. There are other stressors beside emotional ones as well-and I am speaking about all stressors.

thanks for clarifying