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Understanding Fibromyalgia..personal accounts and stories

KharmaGirl

~Resident Puck Bunny~
Veteran
Not really...I wouldn't appreciate being called a guy if I went out of my way to choose a name that makes it obvious I'm not ;)
 

KharmaGirl

~Resident Puck Bunny~
Veteran
It's not about you. It's about being respectful enough to the person you are conversing with to acknowledge the obvious.
 
Fibromyalgia does not exist. You have a Mycoplasma. Don't believe me, just test this theory for yourself. Go get a prescription for Doxycycline. 2X a Day for 2 weeks. 1 X Day for 1 month. That should knock it out and you'll be cured for good. Once again, don't believe me, just do it and you'll see. This comes from a close friend who suffered with this for years. It's completely gone now. Good luck.

Edit: DoobieDuck This is from the Mycoplasmas Stealth Pathogens web site. Google those words and you'll find it.

Even as far back as 1983, doctors at Yale noted:

  • "Over the past 20 years the annual number of reports on extrapulmonary symptoms during Mycoplasma (M.) pneumoniae disease has increased. Clinical and epidemiological data indicate that symptoms from the skin and mucous membranes, from the central nervous system, from the heart, and perhaps from other organs as well are not quite uncommon manifestations of M. pneumoniae disease."(15)
This single stealth pathogen has been discovered in the urogenital tract of patients suffering from inflammatory pelvic disease, urethritis, and other urinary tract diseases (8) It has been discovered in the heart tissues and fluid of patients suffering from cardititis, pericarditis, tachycardia, hemolytic anemia, and other coronary heart diseases.(9, 10, 14) It has been found in the cerebrospinal fluid of patients with meningitis and encephalitis, seizures, ALS, Alzheimer's and other central nervous system infections, diseases and disorders.(11-13) It has even been found regularly in the bone marrow of children with leukemia.(16- 18) It is amazing that one single tiny bacteria can be the cause of so many seemingly unrelated diseases in humans. But as with all mycoplasma species, the disease is directly related to where the mycoplasma resides in the body and which cells in the body it attaches to or invades.
Today, over 100 documented species of mycoplasmas have been recorded to cause various diseases in humans, animals, and plants. Mycoplasma pneumonia as well as at least 7 other mycoplasma species have now been linked as a direct cause or significant co-factor to many chronic diseases including, rheumatoid arthritis, Alzheimer's, multiple sclerosis, fibromyalgia, chronic fatigue, diabetes, Crohn's Disease, ALS, nongonoccal urethritis, asthma, lupus, infertility, AIDS and certain cancers and leukemia, just to name a few.(1-6)
 
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headband 707

Plant whisperer
Veteran
Fibromyalgia does not exist. You have a Mycoplasma. Don't believe me, just test this theory for yourself. Go get a prescription for Doxycycline. 2X a Day for 2 weeks. 1 X Day for 1 month. That should knock it out and you'll be cured for good. Once again, don't believe me, just do it and you'll see. This comes from a close friend who suffered with this for years. It's completely gone now. Good luck.


Even as far back as 1983, doctors at Yale noted:

  • "Over the past 20 years the annual number of reports on extrapulmonary symptoms during Mycoplasma (M.) pneumoniae disease has increased. Clinical and epidemiological data indicate that symptoms from the skin and mucous membranes, from the central nervous system, from the heart, and perhaps from other organs as well are not quite uncommon manifestations of M. pneumoniae disease."(15)
This single stealth pathogen has been discovered in the urogenital tract of patients suffering from inflammatory pelvic disease, urethritis, and other urinary tract diseases (8) It has been discovered in the heart tissues and fluid of patients suffering from cardititis, pericarditis, tachycardia, hemolytic anemia, and other coronary heart diseases.(9, 10, 14) It has been found in the cerebrospinal fluid of patients with meningitis and encephalitis, seizures, ALS, Alzheimer's and other central nervous system infections, diseases and disorders.(11-13) It has even been found regularly in the bone marrow of children with leukemia.(16- 18) It is amazing that one single tiny bacteria can be the cause of so many seemingly unrelated diseases in humans. But as with all mycoplasma species, the disease is directly related to where the mycoplasma resides in the body and which cells in the body it attaches to or invades.
Today, over 100 documented species of mycoplasmas have been recorded to cause various diseases in humans, animals, and plants. Mycoplasma pneumonia as well as at least 7 other mycoplasma species have now been linked as a direct cause or significant co-factor to many chronic diseases including, rheumatoid arthritis, Alzheimer's, multiple sclerosis, fibromyalgia, chronic fatigue, diabetes, Crohn's Disease, ALS, nongonoccal urethritis, asthma, lupus, infertility, AIDS and certain cancers and leukemia, just to name a few.(1-6)


Yup this actually sounds good to me and it certianly couldn't hurt either .. Anything is better then living like this. Here the only problem is getting your doc to agree and give you the presc. peace out Headband707:)
 
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DoobieDuck

Senior Member
ICMag Donor
Veteran
BE CAREFUL....

BE CAREFUL....

... You have a Mycoplasma. Go get a prescription for Doxycycline. 2X a Day for 2 weeks. 1 X Day for 1 month. That should knock it out and you'll be cured for good.

I caution anyone about giving out medical advice without the proper credentials and especially prescribing medicine on the internet. I also caution those of us that are suffering about relying on advice aquired from someone on the internet that has never personaslly diagnosed your condition. Never take or try drugs not prescribed by your treating physician.

MG this sounds like a miracle cure for many health issues and I am suffering so badly I will grasp at anything, but, I am going to print out the information and show it to my physician and ask his professional opinion, I suggest anyone thinking of trying it do the same. DD
 
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yortbogey

To Have More ... Desire Less
Veteran
one hell of a thread.............DD this has gott'en my attention, and will require sum.....in depth reading.........thanKU.....for all the info, and factz, I fear this may be part of my over-all longterm problem, only compounded by my Diabeties, and IBS.........
 

accessndx

♫All I want to do is zoom-a-zoom-zoom-zoom..
Veteran
DD, you know I have had discussions with you before about these types of neuromusculoskeletal entities. I'll just say FTR that it's rather important to distinguish TRUE fibromyalgia from other pathology such as disc injury, compression of the spinal cord or nerve roots, and plain old myalgia.

Fibromyalgia is absolutely a real disease process, but in reality there are very strict criteria that must be met to diagnose someone with it. Often people get ascribed this diagnosis because "the doctors threw their hands up in the air" in frustration, gave up and decided it was time to call something another thing. It exonerates the physician from looking for other and more complex layering of pain sources.

Here's the American College of Rheumatology Diagnostic Criteria that must be met for a diagnosis of fibromyalgia:

ACR Fibromyalgia Diagnostic Criteria


Fibromyalgia is a distinctive syndrome which can be diagnosed with clinical precision. It may occur in the absence (primary fibromyalgia) or presence of other conditions such as rheumatoid arthritis or systemic lupus erythematosus (concomitant fibromyalgia). It is rarely secondary to another disease, in the sense that alleviation of the associated disease also cures the fibromyalgia. It may be confidently diagnosed in patients with widespread musculo-skeletal pain and multiple tender points.

The American College of Rheumatology
1990 Criteria for the Classification of Fibromyalgia
History of widespread pain has been present for at least three months
Definition: Pain is considered widespread when all of the following are present:

•Pain
in both sides of the body

•Pain
above and below the waist In addition, axial skeletal pain (cervical spine, anterior chest, thoracic spine or low back pain) must be present. Low back pain is considered lower segment pain.

Pain in 11 of 18 tender point sites on digital palpation
Definition: Pain, on digital palpation, must be present in at least 11 of the following 18 tender point sites:

•Occiput
(2) - at the suboccipital muscle insertions.

•Low cervical
(2) - at the anterior aspects of the intertransverse spaces at C5-C7.

•Trapezius
(2) - at the midpoint of the upper border.

•Supraspinatus
(2) - at origins, above the scapula spine near the medial border.

•Second
rib (2) - upper lateral to the second costochondral junction.

•Lateral
epicondyle (2) - 2 cm distal to the epicondyles.

•Gluteal
(2) - in upper outer quadrants of buttocks in anterior fold of muscle.

•Greater
trochanter (2) - posterior to the trochanteric prominence.

•Knee
(2) - at the medial fat pad proximal to the joint line.

Digital palpation should be performed with an approximate force of 4 kg. A tender point has to be painful at palpation, not just "tender."

woman.gif

Now, these criteria were established back in 1990, since then there have been numerous peer reviewed articles and studies honing the diagnosis criteria even further and making it more specific. These however are the oldest and are used still today.

When patients have other issues such as the examples I cited above, it may be causing some of their symptoms in other areas. If that's the case, it alters the potential for such a diagnosis to be given. A great example would be the occiptial and lower cervical 'tender points'. How could anyone differentiate that from a person experiencing pain that originates in the discs and with the nerves. Clearly that's going to have some impact on the local musculature. That's going to result in pain, hence even when a patient describes the sensation of discomfort there......it effectively clouds the diagnostic parameters.

So: this is NOT to discourage anyone from exploring a diagnosis of Fibromyalgia....clearly it does exist.....but there are many physicians that are just as confused about it as patients are.
 

headband 707

Plant whisperer
Veteran
Great post Accessndx and absolutely correct ....I have seen more Dr's and so-called specialists about this and they are all stumped at what to do. DD is right about taking advise from the net but I have found better advise on the net then I have ever found in my doctors office. The info is out there for ppl and what will work on one will not work on the other. I'm personally tired of going to doctors that not only know nothing but are about as helpful as my dealer in my wallet.. I have GP's here ask me what my specialist is doing because they have no idea what the next step should be I have to tell them. Now that sucks......IMVHO the only thing that doctors know is how to fill out a presc as they are all about big pharma ...It's ppl that bring them info they don't seek it out themselves,, Their excuse is they are just too buzy to read..lol.. okay then.. Now that's just the doctors I have met personally.. peace out Headband707

Here when you go to a doc and say I have FMS they start to fill out the" Lyrica" presc. LOL .. this is how much they know about FMS lol...
 

accessndx

♫All I want to do is zoom-a-zoom-zoom-zoom..
Veteran
The only problem I have with a diagnosis of fibromyalgia.....is that it seems EVERYONE and their aunt has been given this diganosis.

Let's say you've been in like 2 accidents that have caused whiplash and damage to the discs in your neck. You could easily have residual pain in the neck, arms, upper back....and believe it or not you could have pain in the legs bilaterally. The reasons are complex and many......

Now, this same individual goes to a doctor years later. They've got a battery of degenerative things going on with their spine and muscles surrounding it.........and they're handed a diagnosis like fibromyalgia just because of the widespread nature of the symptoms.

Often people get handed this diagnosis because they've tried "lots" of things like epidural injections, prescriptive and OTC medications, surgery....etc......and nothing has worked.

That's simply not a proper justification for the diagnosis. But for whatever reason that particular diagnosis is a "buzz-word" and it appeals to people at some level....because psychologically.....it makes sense and fits the complexity of the condition(s) and the lack of response to treatment.

Once again, this is NOT to say that NOBODY has been properly evaluated and given this diagnosis as a result. It is to say that this diagnosis gets handed out alot and in a frequency and amount that is NOT commensurate with the actual population of affected individuals.

To add injury to insult, when a person has this diagnosis......they get shuffled into the automated prescriptive path and they get a something like "Lyrica". PCPs and specialists all disagree about what to do if they know what the options are. It's a very difficult scenario with no clear results on either end, and less efficacy than one would want.

I still maintain that there are underlying pathologies that can hasten and precipitate symptoms that are very much like fibromyalgia. Those underlying problems need to be addressed....and need to be addressed properly before someone gets the scarlet "F" branded on them. Those disorders also get treated inappropriately based upon a practitioner's level of knowledge, familiarity, access to specialists, access to specialty equipment, insurance coverage and ability to pay. Any one of those factors may result in inappropriate or incomplete treatment. Sometimes a doctor will not recommend some treatment merely based upon your insurance coverage. They may look at you, know that you cannot afford the "newest" cutting edge procedure......and offer you something they feel is possible....rather than put everything on the table.

Here's a classic example: A patient who has "sacroiliitis"....basically inflammation and derangement of their sacroiliac joints that causes sciatica. The patient is a Medicare beneficiary.......needs an injection into the sacroiliac joint of an anti-inflammatory drug.
She hasn't received one because A) her doctors feel that it's her lower back that is causing the symptoms. B) None of the physicians she has consulted with know about the option to inject the sacroiliac joint. C) Her specialists disagree about the source of the pain. D) Medicare doesn't pay for "experimental" and "investigational" treatments. A sacroiliac injection being one of those things.

She's had a multitude of procedures already done, like epidural injections into the spine practically at every level. She's had orthopedic surgical intervention to remove disc fragments and to implant orthopedic supports within the confines of the spine. Every single thing that COULD be addressed relating to her spine HAD been addressed....

WITH NO DISCERNABLE EFFECT.

Why do they keep treating it circularly like a broken record.....see A) through D) above.

If this woman had the money to spring, she could go see a pain management physician outside the Medicare network....have an injection and voila.....the pain would more than likely be impacted in some positive way. No $, no tickie.....no shirt.

I think people believe all doctors think the same, and are trained the same. In a perfect world it would be like that......unfortunately (maybe fortunately sometimes) they don't. They don't agree often, they clearly don't have the same background and training, absolutely don't have the same access to healthcare resources and cannot offer people what they truly require under all circumstances.

It's best to be informed, ask questions.......and look for alternatives if you aren't getting satisfaction from your current physicians.

Most of all: don't lose hope and don't stop pursuing all avenues to make the changes you want.
 

headband 707

Plant whisperer
Veteran
Again I totally agree with Access's last post ... It actually works two fold here if you do get the FMS diagnosis then they blame everything on the FMS which is also a bad road to be on with these really uneducated /uninterested doc's... Doctors are great for flu's and cold's anything else and your getting into the the thought provoking areana and that is just too hard for most doc's.. Here the GP's are not the guys to go to for any kind of help.Your best bet is to get to a "chronic pain specialist " as these are the guys that get to the bottom of your problem and even those guys make lots of mistakes.. Definately make them break it down for you as this is your life and they don't really give two shits. It's better if you do your homework.peace out Headbands707
 
1

1quixotix

Fibromyalgia is a diagnosis for global body pain. The diagnosis was created because Dr's were unable to pinpoint what it was or the cause of it. It covers many complaints that have been packaged into one diagnosis so that an attempt to treat and insure the individual could happen. My girlfriend has Fibromyalgia type symptoms, as well as auto-immune complications. The best thing she ever did was to dramatically change her diet. She went vegan and felt better. She removed gluten as well as artificial sweeteners and fluoridated water and has been great. She went raw food and the diagnosis of fibromyalgia no longer seems to be accurate. I firmly believe it is a condition of excess and that individuals in countries who suffer diseases of deficiency have very little examples of fibromyalgia or other conditions like say alzheimer's...
I know I put this link out a lot but go to earthclinic.com and take a look around at the sections that pertain to your own situations. Taking control of your health will ultimately be our only recourse. There will never be a pharmaceutical solution to this or any disease of excess.
I implore you to take a few minutes and look at the links I've provided.
Please take care.
http://www.earthclinic.com/CURES/fibromyalgia.html
http://www.earthclinic.com/CURES/fibromyalgia_remedies.html
 
H

HenriettaHippo

This is a great example of why they still refer to it as "practicing medicine".
 

Madrus Rose

post 69
Veteran
I found a couple members discussing Fibromyalgia in another thread and I’d like to start a new thread dedicated to this often mis-diagnosed terrible disease. I was diagnosed with Fybro in 1996 and have had to deal with the pain and various other symptoms all day and night since. All the prescriptions I have tried have done nothing for me. I tried a CPaP for sleep apnea, what they thought was causing my Fybro. This treatment had no, or very little effect on me.
My physicians, small town Doctors, have thrown up their arms, given up on me. Yet I’m still grasping for anything that will help me.

Wikipedia describes this as:
“ Fibromyalgia (new Latin, fibro-, fibrous tissues, Gk. myo-, muscle, Gk. algos-, pain, meaning muscle and connective tissue pain; also referred to as FM or FMS) is a medical disorder characterized by chronic widespread pain and allodynia, a heightened and painful response to pressure.[1] Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients[2] may also report difficulty with swallowing,[3] bowel and bladder abnormalities,[4] numbness and tingling,[5] and cognitive dysfunction.[6] Fibromyalgia is frequently comorbid with psychiatric conditions such as depression and anxiety and stress-related disorders such as posttraumatic stress disorder.[7][8] Not all people with fibromyalgia experience all associated symptoms.[9] Fibromyalgia is estimated to affect 2–4% of the population,[7] with a female to male incidence ratio of approximately 9:1.[10]
Evidence from research conducted in the last three decades has revealed abnormalities within the central nervous system affecting brain regions that may be linked both to clinical symptoms and research phenomena.[8] These studies show a correlation, but not causation.[11] Some research suggests that alterations in the central nervous system might be the result of childhood stress, or prolonged or severe stress.[8]

Historically, fibromyalgia has been considered either a musculoskeletal disease or neuropsychiatric condition. Although there is as yet no cure for fibromyalgia, some treatments have been demonstrated by controlled clinical trials to be effective in reducing symptoms, including medications, behavioral interventions, patient education, and exercise.[12][13][14][15][16][17] The most recent approach of a diagnosis of fibromyalgia involves pain index and a measure of key symptoms and severity.[18]

Fibromyalgia is considered a controversial diagnosis, due to lacking scientific consensus to its cause.[19] Not all members of the medical community consider fibromyalgia a disease because of a lack of abnormalities on physical examination and the absence of objective diagnostic tests. “
[1-19]*Please refer to the link I provided for the sources of thier information.

I’d like to quote B Friendly and Headband 707 as they had some of the best comments describing this and its effects on them.



B I have to agree with almost everything you said and you certainly put it to words better than I could have or have ever seen. Fybro controls every minute of my life now. Hot tub for me is my only relief. Because of my neck and back surgeries exercise is very difficult for me.



707 many thanks for your post..I have learned to live with Hydrocodone for mine. Was on Oxy for a time but managed to quit it. There are some new drugs on the market, one being Savella but I haven’t tried it. A up of cannabis tea helps me cope with this psychologically but pot does very little to help me with my pain.
I welcome any other personal accounts or stories with this disease. Sufferers comments more than welcome, remedies and prescription reviews gladly accepted. Thank you again Headband 707 and Bfriendly..best wishes and good luck to you both..DD

This is an interesting thing DD glad u posted this info ...was just up looking at some property in Mendo with Chemdog's friend Joe & drove up with his private physician an older hip chinese MD that treats his pain conditions who's property it was . Like most men it took me 2yrs to accept the fact that my eyesight was lessening & almost 4yrs to getting sround to doing anything about it ...like getting some reading glasses maybe ??
doh!
Men , we're like this sometimes , women see this in us all the time .

Anyways ended up talking to this friends Doc about alot of these conditions & setting up appt's now to see about treatments , esp for the lower lumbar chronic back pain that have been dealing with for years but like losing my ability to read & farsightedness have done nothing about & just lived with it . Eventually u reach a point (like rock bottom for alcoholics) that u have to deal with it , cause of all the real disruption these conditions cause to ones life . And consult with professionals ...which lucky in my case just happened to be traveling with Joe's physician & got the skinny .

Now the appt is set up with orthopedic specialist & getting the MRI done first & then on with some kind of treatment , the first i hope will be an epidural cortisone shot right to the lower lumbar ! After yrs of unloading 5pallets of soil at a time , doing myriads of transplants, its about time to treat the base off so much chronic pain present in my life . Time to stop , ask & listen to the pros & learn to take their directions .


;)

* Though Fibromyalgia may be a controversial condition , it sure bears looking into & will get more information after i check in with this well reccomended Orthopedist north of SF ....we're getting older , but hopefully wiser too . !
 

Madrus Rose

post 69
Veteran
Fibromyalgia does not exist. You have a Mycoplasma. Don't believe me, just test this theory for yourself. Go get a prescription for Doxycycline. 2X a Day for 2 weeks. 1 X Day for 1 month. That should knock it out and you'll be cured for good. Once again, don't believe me, just do it and you'll see. This comes from a close friend who suffered with this for years. It's completely gone now. Good luck.


Since hardly have ever used antibiotics in so long a time , a little doxycyline sounds good to me... one can only imagine after years of use just what critters & baddies have taken root in the body . Will ask the doc to prescribe some when i go in next week ...sounds like the stuff that knocks just about everything out . Myself have rarely if at all been on any meds or antibiotics , most of my entire life without visits to any doc or hospital..
(can't hurt)
 

Herborizer

Active member
Veteran
My wife has fibromyalgia. Ever since She had got Lyme desease and took Docxcyline for 2 years to kill it, she has lived with fibro now for almost 10 years. It's very real let me tell you.

Exercise for her is a must. When she stops she says she gets to a point of where she may never get out of bed again. For her exercise is very important to have a normal life and function.

For years she took muscle relaxers and sleeping pills at night, as sleep is also critical to calming fiber flareups. Though the side effects of those pills made her feel like she was having a heart attack every morning. Lyrica does work pretty ok for her, but it makes her sad because she knows it makes her mental capacity(memory shot) as a side effect.

The number 1 solution for her has been cannabis edibles. For her vaping and smoking are not even close (though she likes to partake in vaping and smoking too). I make her huge batches of hard candy and she takes these just like medicine everyday. It has given her her life back.

More recently I have made Rick Simpson oil and put these into capsules for her. She tried these for a few of weeks and has seen marked improvement. they last long and give her the best rest she can remember. Interesting enough it takes about a week of taking them for the full effects.

Thank you for this thread
 

Tweetybird

Member
I've been diagnosed with fibromyalgia, chronic pain and arthritis. The arthritis probably doesn't actually cause much trouble. I'm a MMAR license holder in Canada so I have no difficulty with obtaining MJ. Lately, not sure if its the season change or what, but I'm having difficulty with a flare up that just won't quit. I can't get going in the morning without a good half hour of trying to get out of bed and then Tramacet right away. I can't use mj in the day because it puts me to sleep. Which is great for night, but daytime relief is what I need.

I've found yoga helps a lot. I haven't been doing this at a class for a while, but am doing some at home in the evenings again. Also, one side effect of mj is that it makes me eat...sugar. Anything with sugar. I can't help or stop myself. I have a feeling that this is possibly one of the reasons I'm feeling so rotten. Anyone have some ideas?
 

headband 707

Plant whisperer
Veteran
My wife has fibromyalgia. Ever since She had got Lyme desease and took Docxcyline for 2 years to kill it, she has lived with fibro now for almost 10 years. It's very real let me tell you.

Exercise for her is a must. When she stops she says she gets to a point of where she may never get out of bed again. For her exercise is very important to have a normal life and function.

For years she took muscle relaxers and sleeping pills at night, as sleep is also critical to calming fiber flareups. Though the side effects of those pills made her feel like she was having a heart attack every morning. Lyrica does work pretty ok for her, but it makes her sad because she knows it makes her mental capacity(memory shot) as a side effect.




The number 1 solution for her has been cannabis edibles. For her vaping and smoking are not even close (though she likes to partake in vaping and smoking too). I make her huge batches of hard candy and she takes these just like medicine everyday. It has given her her life back.

More recently I have made Rick Simpson oil and put these into capsules for her. She tried these for a few of weeks and has seen marked improvement. they last long and give her the best rest she can remember. Interesting enough it takes about a week of taking them for the full effects.

Thank you for this thread

Did you know that Lyme disease is made by a German in Plum Island. They injected ticks with diseases and didn't realize that dear were swimming from Island to Island spreading their disease. I wonder how much damage they did before they were stopped! headband 707:rasta:
 

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