Fibromyalgia

[LightHearted]

Thanks muchly LightHearted

Good luck with the sleep study...let me know how it goes...if thats alright with you of course

*huggles*
Gin

I think the sleep study went well. It kind of irks me that they didn't let me get a full night sleep. You would think "these people are here for a possible sleeping disorder... Let them get as much sleep as possible," but no... I think I finally fell asleep at midnight, and they woke me up at 5 am. In addition to that, I've been in a lot of pain since I woke up. The pillows that I used weren't very good, and the bed was too hard. That in addition to having all those wires attached to me, and not being able to move the way I wanted to caused a whole bunch of pain.

Off I go to get dressed for work.

 

[2scoops]

I have posted this on another site before and I know I must post it here for you all. I have been studying emotions and chronic pain for about 6 months now. I do not have fibro but I do know people who have had fibro who have been cured along with other symptoms like IBS, TMJ, Chronic Back Pain, chronic pain. I do know that in fibro most patients are female, they also have chronic fatigue syndrome, most have gone through a major event in their life, divorice, death of a loved one, sexually abused, molested, verbally abused, very low self esteem, etc. But here is what I posted before nd I say read the books because obviuosly the doctors are really not helping.


I have requested prayer on here about my back. I had been having soreness and tightness since I was 16, and I am now 27. Well about 3 years ago he doctor did a Cat Scan, which showed a crack in my L-5 vertebrae and bulging discs. The pain started to get really bad about a year and a half ago, burning pain in low back, down into the legs and into the feet. Me left leg would get weak and throb. I was losing hope, they did an MRI and it showed my disc was shrinking. I tried p.t, chiro, supplements, medication, chiro, neuro, ortho, nothing was helping with the pain. I could not sit for more than 15 minutes, I had trouble bending, running. I became very depressed. I would go to the back chats and hope to find some answers, but there everyone remained in pain, even after surgery. That was my last hope, surgery, and after reading about those who had surgery there was no way I was going to have it. So one day a guy came back to the chat room and said he read a book, and it healed his pain. Well me being the skeptic I was did not believe him, because I became an expert of the cause of back pain. But I got desperate enough and got the book. Actually kind of helped me, so I got another book by the author and it helped. Today I have a little pain, but I have come so far and I soon will be free of pain. I thought I would post this and hope someone could read and identify with it. The books I have read and re-read are "Healing Back Pain" and "The Mindbody Prescription" written by John E. Sarno, I recommend anyone with chronic pain to read these books. I am back to living again. Sarno believes that back pain, tendonitis, bursitis, fibromyalgia, neck pain, acid reflux,etc, are caused by tension, anxiety, depression, stress, etc. He believes these emotions and different personality types cause muscles, ligaments, tendons to become oxygen deprived, therefore causing pain. To some this may sound crazy and to me at first it did also. Sarno calls it TMS(Tension Myositis Syndrome). There is a message board that I go to called tmshelp.com. God introduced a christian man to me there, who has been healed of low back pain for twenty years, and he has helped me out so much. I have felt led to post this thread because I know so many people are out there suffering and you may be one yourself or you may know smeone out there here is suffering from chronic pain. I would be glad to help anyone out.

 

[Lion'n'Lamb]

Hi I am new here,and was diagnosed w/ FMS in early '93, found out i had CFIDS/CEBV in '91, we ahve traced it back to a bout of Strepthroat and Mono when I was in my early teens,it never went away. I am medicated right now fr another situation and it is disorienting. i try t have a sens of humor about it all.

If I ever get to write a book one chapter will be I am not Alphabet vegtable soup [CFIDS/CEBV/FMS/IBS/TOS/IC etc.]

 

[Noor Saffiyah]

Hello.

I was diagnosed with CFIDS/CEBV in 1994 as a result of testing being done because of possible gall bladder problems. In 2001, I ended up with RSD/CRPS that started in the right foot and has progressed as far as the right knee, several toes and a small area of my left foot and my lower arms and hands. And in the last year I have been also diagnosed with overlapping Fibromyalgia.

One interesting thing I came across in the last six months in my reading is that there is evidence of atypical Gall bladder disease in Chronic Fatigue CFIDS sufferers. In my instance, I don't even fit the profile. I have always been underweight. There were no stones. My Gall bladder was literally disintegrating into a mushy mess according to what the doctors were telling me.

I also noticed that one of the other posters mentioned something about back problems within the L5 region. Does anyone know of anything 'atypical' about this particular region in conjunction with the above conditions? I also have problems in this area, however, no disc or other problems seem to show up in the testing. If anyone is familiar with RSD/CRPS, does this sound like it just be another area of spread, as I know that it does not necessarily only attack your limbs.

Thanks.

 

[night2day]

I'd like to hear from anyone else that suffers from FMS.

In 1990 I had Mononucleosis for about 8-9 months, during which symptoms (such as unusual exhaustion and IBS) of something else began appearing. That "something" turned out to be Chronic Fatigue Immune Dysfunction Syndrome (whoever gave the illness that type of name certainly didn't think twice about belittling those who suffer with it.) Then Fibromyalgia began developing and fully manifested in 1994. Was diagnosed in 1995. By that time, various other side-conditions were already popping up (such as chronic tendonitus and bursitus, GERDS, TMJ, worsening migraines, etc). And since then those have worsened and others have developed.

On around 14 medications (1/3 for allergies, 2 forms of muscle relaxants, 2 types of meds for daily migraines, something for GERDS, and can only take a small dose of Ultram for tightening and or achy muscles.)

Apart from this I have Scoliosis within my lower back (L5 area) which began showing Osteoarthritis 4 almost 5 years ago.

And, for some reason, which none of my docs agree on, my breathing muscles are week as proven out by three breathing tests. Pulmologist (Lung doctor) compared the results to someone who had just gotten off a respirator. He also stated it was the Fibro, yet my regular doc and Rheumatologist disagree. What's interesting is the computer came to the conclusion that the cause was due to a moderately severe neuro-muscular disease. Yet, no known one was detected during regular testing by another specialist. Still, I have noticed some of my migraine medication, one of which is a drug usually used for epileptics, has lowered my use of emergency inhalers usually used for Asthmatics.

Anyone with Fibro also been told they have weak respiratory/breathing muscles. Or does anyone who has weak respiratory/breathing muscles and been told it's caused by CFIDS...which is thought to be more involved with the immune & neurological system?

I go to more than a few specialists and wonder what's the bother if no one agrees with any of the other doctors and always seem to state "nothing I can do" for at least half the symptoms. Gets rather frustrating.

 

[night2day]

I do not have fibro but I do know people who have had fibro who have been cured along with other symptoms like IBS, TMJ, Chronic Back Pain, chronic pain. I do know that in fibro most patients are female, they also have chronic fatigue syndrome, most have gone through a major event in their life, divorice, death of a loved one, sexually abused, molested, verbally abused, very low self esteem, etc..

Not everyone who has FM or CFIDS could be placed near the above classifications save one. While many patients are female and outnumber the male that has more to do with the female endocrine system and how it works. Men's simply functions differently than females which probably makes them less susceptible.

While I agree that stress, whether internal or environmental, can make symptoms worse within FM, CFIDS, and other diseases and conditions, I would disagree that they and/ore depression could be considered the cause. Looking on the net at several sites researches have proven that while depression and stress can be side conditions, they are not the cause of the condition itself.

The stress and depression is more comparable to those who have other chronic conditions such as Rheumatoid Arthritis, Lupus, MS, as well as others (all of which were also declared to be merely caused by stress at one point in time before it was discovered otherwise). Not all would fit into the mold that something happened during childhood. And certainly not all would fit into the "white, upper middle-class, working woman" mold that was made when CFIDS was first classified as the "Raggedy Ann" syndrome within the 90s.

Over half the cases of CFIDS at least methinks can be traced back to a viral or bacterial illness. With FM it can be an illness or physical injury such as a car accident. Thus, I disagree with the concept this would be caused by: "tension, anxiety, depression, stress, etc". As commented above, the same was stated of RA, Lupus, Multiple Scorolsis by doctors and researches who just didn't know what they were dealing with. In my view, the medical world owes the patients much more than what amounts to blaming them for being ill.

There are research sites that have noted time and again that there are noted abnormalities within the makeup of patients from anywhere from sluggish blood-flow to cell death leading to an immune system unable to function.

During the hearings regarding veterans who had Gulf War Syndrome, which is within the same family as FM and CFIDS to my knowledge, one senator reminded the panel he was on just because doctors aren't aware of an illness or can't test it using the usual means, it would only be arrogance to come to the conclusion the illness isn't physiological but only psychologically based.

 

[Chrysalis]

Hi all,

I was diagnosed with Fibro back in May 2003. Yeah, I know ... I'm a guy, one of the lucky ones who has it I live with near constant pain in my neck and right shoulder. I also live with myofascial pain and tingling in the hands, arms, fingers and calves. I am unable to work because of it. I also have difficulties losing weight as I find even the simplest form of exercise draining. I have begun with WeightWatchers and the points system agrees with me and is straightforward to follow, plus the fellowship with other members helps and gives me a focus once a week. On top of this, I also live with Depression. Ah well, things could be a lot worse.

God Bless,

Chrysalis.

 

[RJ1]

Hi Chrysalis. Welcome to the forum.

I just got diagnosed with it last week. I think I've had it for a while though. Lots of tests, no answers until recently. Oh the fun. Not!
If you ever need to talk just post in here or PM me. I sure know where you're coming from.

 

[night2day]

I'm on an FM mail-list which mentioned a pain specialist known as Dr. David Johnson tested for viruses within FM patients. Apparently 26 of those tested were positive for up to 9 viruses. 6 of those are responding well to anti-viral medication.

The Viruses:

*Epstein Barr virus EBV
*Cytomegalovirus CMV
*Herpes virus: 8 types
*Parvovirus B 19
Norwalk agent
*Rotavirus
*Enteric Coronavirus
*Enterovirus
Astrovirus
Calcivirus
*Varicella - Zoster virus VZV
Torovirus
*Adenovirus
Picovirus
Pogosta virus
Sindbis virus
*Coxsackie A and B virus

(*The most frequently involved virses. Most patients will have from three to nine of these viruses at abnormal levels.)

Also mentioned was the testing of these viruses would be beneficial for those with CFIDS as well.

Still, it would beg to question was the virus picked up from an already damaged immune system or were the viruses the cause of the condition.

Just thought it was interesting.

 

[Chrysalis]

Thank you RJ1, I might just do that.

All the best,

Jonathan.

 

[RJ1]

Thank you RJ1, I might just do that.

All the best,

Jonathan.

You're more than welcome.
Thank you too.

 

[Kristi1]

What is Fibromyalgia?

Fibromyalgia (FM) is an increasingly recognized chronic pain illness which is characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle and hands, but any body part can be involved. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time.


More Links Below;

Read on.......



”Fibromyalgia Network”


”MedlinePlus: Fibromyalgia”


”National Fibromyalgia Association”


”Fibromyalgia & Chronic Fatigue Syndrome”


”The American Fibromyalgia Syndrome Association”


”The Oregon Fibromyalgia Foundation (OFF)”


”Absolutely everything you need to know about Fibromyalgia”


”National Fibromyalgia Partnership”


”Fibromyalgia.com”


”The Fibromyalgia Community”


"Fibromyalgia and Chronic Myofascial Pain Syndrome site"





I have members at Kristi Ann's Haven male and female that have this, and I am so sorry everyone . I will Pray for you



Love Always, \o/

KristiAnn
MsGuidedAngel

 

[RJ1]

Wow! Thank you KristiAnn!

I'm new to all this and those links will be helpful. Thanks!

 

[Kristi1]

Wow! Thank you KristiAnn!

I'm new to all this and those links will be helpful. Thanks!

You're very Welcome Sis, I am so happy I could help you!!


Love Sis, \o/

KristiAnn
MsGuidedAngel

 

[night2day]

There's a site in the net called Invisable Disabilities Advocate which has a good many links which address various illnesses. Within the "about us" area:

The term "invisible disabilities" implies that the person's limitations such as extreme fatigue, dizziness, pain, weakness, cognitive impairments, etc. are not always obvious to the onlooker. These symptoms can occur due to chronic illness, chronic pain, injury, birth disorders, etc...

...Often the most difficult part of having a disabling illness or injury, is the lack of support the person encounters. We, as humans, are accustomed to thinking we have to see an outward sign like a bleeding limb or grey-toned face, before we can believe a person is hurting. Furthermore, we often disregard what our friend or family member is saying, when to us they "look just fine!"

...unless we are educated about what life-changes a chronic condition can cause, we often may inadvertently treat our loved one as if they just need to "snap out of it" or "stop complaining." Therefore, the only way to transform our well-meaning, but hurtful view is to understand that the illness can debilitate a person's body against their will...

I will state in advance some of the resources on the site aren't free.


Rx List is another good resource to use when checking on information regarding medication should it ever be needed.

 

[Muzza]

Hmm well what to say...

I'm another one of the 'lucky' guys who has to deal with FM. I was diagnosed about 4 and a half years ago, and am currently 23 years old. Unable to work or study.

Hard to pinpoint where it affects me the most, probably cause I try not to acknowledge it much of the time. But pretty much everywhere during at least one point each day lol. So that makes life fun.

 

[RJ1]

Thanks for the links, night2day. All help is appreciated.

Muzza, I'm so sorry to hear you have this too. You're so young to have to be dealing with FM. You're in my prayers and if you need to talk, we're all here for you.

 

[Muzza]

Thanks RJ, i'll make sure to pop in and check the latest goings on every now and then.

 

[feathergirl]

Muzza Praying for ya.

 

[Muzza]

Thanks, prayer is always needed.

Right now the major issue for me, completely aside from all the pain and tiredness etc. Is that none of my friends here really listen. They might hear what i'm saying but don't understand, or completely overlook the point.

I'm sure all of you have noticed how bad people are at listening properly. Many people these days just don't take the time to listen to another person. Either too busy thinking about their own problems, or too busy butting in on the person they should be listening to.

I've got some things i've written about listening and pain, i'll post them after this message. They're quite long though, so bare with me.