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lizard00

Everyone With Fibromyalgia...

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Well, I think I am finally getting to the bottom of why I feel like garbage most of the time.

I almost always wake up with a headache because of pain in my neck, which usually goes away after I have stretched my neck out and cracked it a few times. I also wake up with back pain, all over, not just concentrated in my lower back; which when I try to lean over, pulls terribly at my neck and mid back and just hurts really bad. But again, after moving around and stretching out my muscles, I start to feel better. Never do I feel great, but I feel better.

This morning I slept in a little later than normal, and when I woke up I couldn't move for hours. My head was throbbing, my neck and back were screaming, etc... took me a good 3 or 4 hours until I felt better. I did an hour of stretching this afternoon, which helped a little, but my back still hurts. Not nearly as bad as before, but it's there. I don't think it's arthritis- it definitely feels like every muscle in my back hurts. I feel like I have been beat up. So now, I still feel kind of weird, like after you have had a lot of pain. Just worn out. Oh yeah, I took 2 ibuprofen too, so who knows if that helped.

I have a lot of fatigue, which has really gotten better since going gluten-free. I know there is a relation between gluten and fibro... I used to wake up tired, whereas now I can make it usually until around 2 or 3. But then I am pretty worn out. I am taking B12, magnesium and a multi vitamin, I see a chiropractor regularly and have been gluten-free since Nov 07. I'm not sure if this is what's going on with me, but the more I read about it, I actually think I have made a discovery. I am so tired of feeling like crap, I will pretty much do whatever would make me feel better.

So, does this sound like it could be fibro and do and of you have suggestions? Thanks! :)


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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Hi.

I've been diagnosed Fibromyalgia 9 years ago. All your symptoms and then some.

Today have a positive Lyme diagnosis via Igenex western blot. My doctor tells me I never had fibro, it was lyme all along. I'm GFCFSF.

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I have fibro (dx'ed early, and it's comparatively mild; I still work a regular schedule).

You're symptoms could be it, but it's also similar in expression to other CSS (central sensitization syndrome) conditions like chronic fatigue. Generally, though, there is more widespread pain than just in the back/neck. One of the hallmarks of fibro is having at least (according to 'official diagnosis guidelines') 11 of the 18 tender points. You didn't mention those, but you would probably have an idea if you have them, even if you haven't had a particular test for them. (These are different from trigger points. And the name 'tender' points is misleading, because the pain they cause when pressed with at least 4 pounds of force in the space the size of a thumb, should be *pain* not tenderness.)

Anyway, it's probably worthwhile to talk to your doctor and/or get a referral to a rheumatologist. They should absolutely rule out a number of things first, including rheumatoid disorders, nutritional deficiencies, and lyme. Those are done by blood test. Some of the other similar things can be ruled out by symptomology.

As for what I do? There are a few supplements I take. I make sure to eat healthy (not just gluten/dairy free, but plenty of fresh veggies/fruits, a balance of protein/fat/carbs, and no junk). I keep my stress levels down as much as possible, and then find a way to lower them more. And I get exercise. With fibro, the pain is generally *NOT* indicative of physical harm, so I don't let it stop me the vast majority of the time. It's always a balancing act to make sure I don't use up energy I'm going to need the next day, but not exercising will just make it worse too. And, even more importantly, sleep.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I was diagnosed with fibromyalgia about 8 years ago. I was put on prescription Naproxen and something for my sleep ( can't remember the name of it at the moment, but it wasn't a "sleeping pill"). People with fibromyalgia often do not reach the 4th level of sleep ( REM sleep)----someone correct me if I'm getting this wrong :wacko:. When I started going to the chiropractor, I was able to wean off my meds. When the pain is more than she can help, she uses keseo (sp?) tape. It improves lymphatic flow which greatly diminishes the pain. If your chiropractor doesn't have it, then she most likely doesn't have anyone trained to put it on.

As far as waking up in pain, it took me a while to figure out the best position to sleep in. As it turned out, I felt best when I slept on the sofa with a firm sofa pillow under my neck so my head is resting at approximately a 90 degree angle from my body and my shoulder(s) slightly elevated, my head against the arm of the sofa for additional support. :huh:. It's kind of complicated, I know, but the support of my neck and head and the angle of my head are very important. Now I can somewhat recreate that in a bed.(But I still like the sofe better :D ) I had tried different specialty pillows to no avail. Now I wake up feeling great. At least now I can start the day right --- it's the rest of the day that I have to worry about :P !

I do take a really high dose multi-vitamin and glucosamine condroitin, and drink plenty of water, and as you said, stretching is a must.

Always being conscious of my posture helps, as I continue to have the most problem with my neck and upper back. I can not sit without a back to lean on, and I can not walk around a classroom looking down at the students' papers on their desks. I know it sounds difficult, but actually I do pretty good---definitely much better than I used to. I rarely miss a day of work. If I do it's not b/c of my fibro. I even had 2 jobs for 5 yrs. I swing dance and scuba dive (although that is sometimes a problem when I have all that gear on and not in the water :ph34r: My husband bought a motorcycle and wants me to ride with him, but he has to get a backrest that will work for me. ( They are all too low for me)

I've only been gluten-free for a little over 2 months, so I'm interested to see if this will help my fibro. I do know that I am less groggy, as you mentioned. Eight years ago it was difficult to find a doctor who would diagnose fibromyalgia. Hopefully that has changed <_<

I don't know if I was any help, but let me know if you have any questions!

Lisa


~~Lisa~~

"The greater the obstacle, the more glory in overcoming it."--Moliere

"I may not have gone where I intended to go, but I think I have ended up where I needed to be."--Douglas Adams

Friends may come and go but Sillies are Forever!!!!!!!--Amanda

_________________

gluten-free since 1/08

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I was diagnosed with fibro about eight years ago. In the meantime, it looks like my fibro was almost 100% caused by food intolerances. I was on codeine contin (12 hour release codeine) twice a day for five years, just to be able to sort of function, I was in such excruciating pain.

Now I know that lectins (especially gluten, rice and egg) will cause the back and neck pain, the joint pain and buckling of my ankles and knees, as well as headaches, fatigue and brain fog). Salicylates (contained especially in Aspirin, herbs, spices, honey, many vegetables, nearly all fruit and many other foods) caused the muscle pain and the skin pain, as well as hives and other skin problems. Nightshade foods (potatoes, tomatoes, peppers, eggplant) will cause stomach and bowel problems, migraines and skin problems.

As long as I stick to my limited diet, I usually don't need any painkillers any more, which is like a miracle. I still have the terrible fatigue, though, due to thyroid and adrenal problems. I do see a chiropractor once a week, which is enough to keep my back and neck feeling fine. Before finding out about the gluten intolerance and the other food intolerances, I'd see my chiro twice a week, and my back would still ache terribly much of the time.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I'm giving a warning to my post--this is just my opinion! (Take what you like and leave the rest :D )

I don't really think Fibro is a real disease/syndrome. There is no test for it. Having chronic pain indicates something else is going on. I think people need to look deeper at what might be going on and what is causing this pain.

I think Lyme disease needs to be ruled out (which actually isn't really possible...it's kinda like Celiac disease...always a possibility of poor test results.) If I were you, I'd read the Lyme disease thread, the first couple pages. It will give a list of symptoms. If you can identify with them, you can post on the thread and others with experience with Lyme will chime in. :)

I was diagnosed with Fibro, but it is actually Lyme symptoms that seem to fit with Fibro symptoms. For me, once we treat the Lyme, I shouldn't have any more pain issues.

Also, were you formally diagnosed with Celiac? Because if you weren't, lots of Lyme patients have gluten intolerances, which help their symptoms, but eventually their symptoms come back. (This happened to me).

Again, this is all my opinion. I don't want to offend anyone.


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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I had pretty severe fibro and RA pain for years that went away when I elimated dairy & gluten. I got a few shots of methotrexate at the same time I went gluten-free and that really helped whack some of the inflammation. I now notice that I get a little stiff when I am exposed to small amounts of dairy (as in CC). Ibuprofen seems to make it worse for some reason so I stick with tylenol. My back hurts when I skip my calcium supplement for a few days. Magnesium also helps.

I highly recommend doing a Rolfing series. It's not cheap - about $1,100 for the 10 session series - but it really relieved a lot of my chronic pain and you only have to do it once. I think what makes it work is that the therapist can move your joints more than you can strech them and get them back in to the proper position. Plus, part of the series is movement and posture education so you learn how to move, sit, sleep, etc. to prevent chronic stress.

Another thing that works for me is yoga and pilates but I think you really have to do both because pilates strengthens your muscles and yoga stretches them out. I do one of the two EVERY day and it's the first thing I do when I get out of bed and the more pain I'm in when I wake up the better I feel when I'm finished. Yoga and Pilates are things you really have to keep working at because you won't see results right away and you won't see results if you only do it occassionally.


---------------------------------

MP - celiac for 10 years

 

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I don't really think Fibro is a real disease/syndrome. There is no test for it. Having chronic pain indicates something else is going on. I think people need to look deeper at what might be going on and what is causing this pain.

...

Again, this is all my opinion. I don't want to offend anyone.

Oooo, I'll bite! :)

I promise I'm not offended. :D

I used to be ... borderline skeptical. One of those "I accept there are things out there I can't understand, and whooboy if this isn't one of them. I'll move on now," sorts of things. But I did a little more research into it, and found that the medical field *HAS* found diagnostic differences in people with fibromyalgia compared to the normal population (even compared to chronic fatigue syndrome).

One of the main theories at the moment is that significant, long term stress, followed by an acute period of even more intense stress (often a physically traumatic event, but can also be a mentally stressful event), essentially taxes the dopamine production system in the brain, so the parasympathetic nervous system has more or less 'burned out'. At the same time, the stress response continues to occur, so the sympathetic nervous system (fight or flight) continues to run. Without the gate of the parasympathetic nervous system, to ramp down the activity of the sympathetic nervous system, there continues to be excessive nerve signaling, and less of a filter in the brain than normal to 'quiet' what is heard. The affect on sleep, particularly the lack of certain stages of sleep, is also hallmark and plays an additional role on the ability of the two halves of the nervous system to balance each other out. It's one of the central sensitization syndromes, and there is evidence that there is a genetic basis for it. (There's lots of information on this in the literature - pubmed's a great resource.)

That is not to say that there isn't a psychological element involved; somatization is quite common, as is concurrence with depression (which is a chicken/egg issue itself. And it's not to say that it's not misdiagnosed over other things; we've seen that here with lyme, as you've noted yourself.

But there has


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I'm giving a warning to my post--this is just my opinion! (Take what you like and leave the rest :D )

I don't really think Fibro is a real disease/syndrome. There is no test for it. Having chronic pain indicates something else is going on. I think people need to look deeper at what might be going on and what is causing this pain.

I think Lyme disease needs to be ruled out (which actually isn't really possible...it's kinda like Celiac disease...always a possibility of poor test results.) If I were you, I'd read the Lyme disease thread, the first couple pages. It will give a list of symptoms. If you can identify with them, you can post on the thread and others with experience with Lyme will chime in. :)

I was diagnosed with Fibro, but it is actually Lyme symptoms that seem to fit with Fibro symptoms. For me, once we treat the Lyme, I shouldn't have any more pain issues.

Also, were you formally diagnosed with Celiac? Because if you weren't, lots of Lyme patients have gluten intolerances, which help their symptoms, but eventually their symptoms come back. (This happened to me).

Again, this is all my opinion. I don't want to offend anyone.

Thanks for the suggestion. I have to admit, I am borderline skeptical about it too, but something has to explain what's going on, and at this point, I am not willing to discount anything. There are many things beyond the realm of comprehension that work/don't work, happen or not. I've concluded that just because something can't be medically explained does not discount its worth.

That being said, I have been talking to a few people about the possibility of lyme. I did get bit by something almost 2 years ago... left a nasty scar on my chest but I have no idea what it was. I am going to print out some material to take to the doc with me. See if we can do some bargaining, especially to make sure that she uses the correct lab for analysis.

Thanks everyone for all your input. I really appreciate it!!


Be yourself, everyone else is taken.

Oscar Wilde

Gluten free November 2007

IgA Deficient, Neg Bloodwork, Double DQ2 Positive

Dietary and Genetic Diagnosis June 2, 2008

Soy free Jan 09

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After being diagnosed with fibromyalgia, then I found out that gluten did not agree with me---all within the last five years and I am now 62 with a granddaughter that is 9 who has had celiac since the age of one. The fibro symptoms were much better afte going gluten-free. They say (whoever they are) that people with migraines (that's me too), fibro and stuff like that, tend to be really low on magnesium---the one I take is magnesium with malic acid and I get it at the health food store. That has helped me a lot. Also if you are consitpated a lot, it will help that. I take Mobic, which is an anti-inflammitory which really keeps the fibro in check, but occasionally I have a flare-up when I hurt all over and have extreme exhaustion, it is so classic. People just don't understand we people who have fibro, they say we feel pain in a different way. We tend to be very sensitive. I also take Topomax to keep from getting migraines, which is a God-send, and the neurologist said that helps with fibromyalgia too. I am lucky to have these doctors that hit on the right medicaiton.

Best wishes to you all in finding the right combinations for yourselves, but do try the magnesium.

Barbara

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I'm giving a warning to my post--this is just my opinion! (Take what you like and leave the rest :D )

I don't really think Fibro is a real disease/syndrome. There is no test for it. Having chronic pain indicates something else is going on. I think people need to look deeper at what might be going on and what is causing this pain.

This is also my opinion.

I dont believe that Fibro. is a true condition in itself....but rather a label given to those who have unexplained symptoms and fall into the "criteria" that makes a fibro. diagnosis (11 tenderpoints, TMJ, etc.)

In my opinion it falls into the category of IBS or chronic fatigue syndrome...which I also dont believe are actual conditions without an underlying (and treatable) cause.

At one time I did meet the criteria for a Fibro. diagnosis....however I was never diagnosed. Having that diagnosis would not have changed anything in my mind nor would I have done anything different as far as searching for a true cause for my symptoms.

I no longer have the symptoms that I had a few years ago....most of them were resolved with dietary changes. In my case gluten-free was not enough to eliminate symptoms. I have also had to make changes as far as limiting my exposure to chemicals and other toxins.

I do believe that genetics play a role....most conditions do have a genetic basis. For example Autism is believed to be have a genetic basis....however, this condition is an epidemic and as far as I know there is no such thing as a "genetic epidemic".

Fibro. is no different in my mind...some of us may be more susceptible to the underlying causes due to a genetic weakness but without those underlying issues the symptoms would not occur.

Without the environmental triggers....Autism would be unheard of.

My advice would be to look deeper because these symptoms are not without cause. The triggers for these types of symptoms are very treatable when they are identified. I'll admit that the answers dont always come easy but there is always a root cause for syndromes such as Fibro or CFS.

In many cases these symptoms do manifest after a period of extended stress or trauma to the body. This is when the immune system is particularly vulnerable to infections, toxins, etc. A genetic weakness sets the stage for that.

Also, anytime the body is faced with a toxic burden which is greater than it can handle these types of symptoms begin to manifest. The toxic burden can come from many sources....including foods, chronic infections such as Lyme, candida...and definately heavy metals place a huge burden on the immune system.

As far as I know Fibro. is not treatable....the symptoms are manageable but they are never really resolved. With proper diagnosis and treatment of the underlying issues these symptoms can be resolved.

I have no problem with differing opinions and I do respect people's decisions regarding this topic.

I'm only posting my thoughts for those who might wish to dig deeper into looking for a cause for their ongoing pain.


Rachel

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I have known that I had celiac disease for about 13 years now. I have had several operations and recently my health has deteriorated . I have undergone several tests for my heart and all have been within known range. ! saw my PCP yesterday and again the subject of fibromyalgia came up. He feels I might have it in addition to my celiac disease. About 5years ago I research the subject and decided that while I had some symptoms of the disease, I didn't feel I had it. Someone touching me often sends pain throughout the area. I used Tylenol for pain. My doctor is referring me to a gastrologists and chronic pain clinic and order a bunch of tests. I had the tests this morning and will wait to hear how they come out. As I was searching for information on fibromyalgia I notice the thread on endometriosis and I had bad case of it. I learned this after my hysterectomy. I do sleep with my head up; because of a hiatal hernia, take vitamins. Tow things I have found that helps is aloe Vera with my morning meal (2 25 mg pills) and red rice yeast, 600 mg. The latter I took for cholesterol; but it helps keeps me regular. At this time I could uyse some support from others with similar problems.


Betty L.

Meridian, ID

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Well, I think I am finally getting to the bottom of why I feel like garbage most of the time.

I almost always wake up with a headache because of pain in my neck, which usually goes away after I have stretched my neck out and cracked it a few times. I also wake up with back pain, all over, not just concentrated in my lower back; which when I try to lean over, pulls terribly at my neck and mid back and just hurts really bad. But again, after moving around and stretching out my muscles, I start to feel better. Never do I feel great, but I feel better.

This morning I slept in a little later than normal, and when I woke up I couldn't move for hours. My head was throbbing, my neck and back were screaming, etc... took me a good 3 or 4 hours until I felt better. I did an hour of stretching this afternoon, which helped a little, but my back still hurts. Not nearly as bad as before, but it's there. I don't think it's arthritis- it definitely feels like every muscle in my back hurts. I feel like I have been beat up. So now, I still feel kind of weird, like after you have had a lot of pain. Just worn out. Oh yeah, I took 2 ibuprofen too, so who knows if that helped.

I have a lot of fatigue, which has really gotten better since going gluten-free. I know there is a relation between gluten and fibro... I used to wake up tired, whereas now I can make it usually until around 2 or 3. But then I am pretty worn out. I am taking B12, magnesium and a multi vitamin, I see a chiropractor regularly and have been gluten-free since Nov 07. I'm not sure if this is what's going on with me, but the more I read about it, I actually think I have made a discovery. I am so tired of feeling like crap, I will pretty much do whatever would make me feel better.

So, does this sound like it could be fibro and do and of you have suggestions? Thanks! :)

For the last couple years I've been trying different things and have gotten to the point where I feel almost completely normal. I don't have alot of time right now, but if you want to e-mail me at paulette@thehealthexpress.com that will remind me to reply back to you. It's been a long process getting to this point, but it's worth it. One thing I found for me was that different foods seem to trigger it and that has been a large part of the whole process of getting better. I used to do o.k. with potatoes, but alot of gluten-free things would call for potato starch so I became sensitive and had to change that. Now I can have them occasionally, but if I had them every day I would go into a flare.

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I don't really think Fibro is a real disease/syndrome. There is no test for it. Having chronic pain indicates something else is going on. I think people need to look deeper at what might be going on and what is causing this pain.

no offense taken but I think you should know some things

I was just diagnosed with fibromyalgia and my DR. gave me some info on it

I have a thing from the "3rd annual fibromyalgia research conference" in seattle washington it is from 1994 but the info is good

FIBROMYALGIA GENERAL FINDINGS:

"Researchers have now PROVEN that FM is NOT a psychiatric illness, rather it is a physical DISEASE which can manifest itself in various ways."

"Fibromyalgia is HEREDITARY - when one person in a family has the disease, look for another in the same family. There appears to be a GENETIC MARKER for this DISEASE"

"When you diagnose FM look further. Ther eis a 60-70% chance there is an underlying disease (hypothyroidism) Physicians need to be checking often for the onset of new disorders."

"ALL patients with FM have chronic fatigue syndrome (CFS) but not all CFS patients have FM"

"It is now believed that at least 15,000,000 people in the US have FM and that it is a Chronic, Progressive DISEASE"

"Almost without question this is a connective tissue DISEASE. Pathologists see very suspicious tissue where connective tissue attaches to bone. ALL organs and systems are apparently involved. Fibrous bands appear to be forming over all muscle groups."

"Most patients with FM have difficulty holding down a full time job as there can be severe disability caused by pain and fatigue, often times MORE SEVERE THAN HIV, LUPUS OR RHEUMATOID ARTHRITIS. A Boston University Study, published in 1991, studied several hundred FM and Rhematoid arthritis patients to compare functional disability. Looking at activities of daily living, the study found that FM PATIENTS ARE MORE DISABLED than Rheumatoid arthritis patients. This study has major implications. A recent court trial in California, concerning disability, brought in experts including the National Institute of Health and the Communicable Disease center. Though researchers don't know what causes FM they now concur that IT IS A DISEASE, NOT A SYNDROME. Physicians must support FM patients in terms of the legal system because of the truly sever disability due to pain and fatigue."

"An interesting finding in the Boston Study was that only 6% of FM patients believe others believe their pain. 40% of Rheumatoid Arthritis patients believe others believe their pain. Both physicians and families invalidate FM patients pain and fatigue because they "CAN'T SEE ANYTHING WRONG""

"25% of all FM DISEASE begins in childhood. In adulthood the onset is often insidious. Patients with sudden onset seem to have a more severe course. (seen in approximately 50%)"

"FM patients seem to have over-reactions to adrenaline surges which lead to extreme fatigue"

"Patients with FM have greatly increase incidence of fibrocystic breast disease, interstitial cystitits, cervical degenerative disease, allergies, morton's neuroma, carpel tunnel syndrome, and TMJ"

MISCONCEPTIONS ABOUT CHRONIC NON-MALIGNANT PAIN:

1) Patient becomes less sensitive to pain and better able to tolerate it.

2)When there is no known physical cause, it is a symptom of psychological disturbance (psychogenic pain)

3)when the patient is er expressive or exaggerates his pain or has a greater decrease in function than can be explained by physical cause, he is trying to manipulate others to obtain secondary gains.

4)If the patient is depressed, depression is causing the pain.

5)Patients with chronic non-malignant pain who have been on narcotics or opioids for months or years are addicted to opioids

6)daily use of opioids for pain relief is always inappropriate for patients with chronic non-malignant pain.

CORRECTIONS TO THE ABOVE MISCONCEPTIONS:

1)as time goes by endorphins may decrease and the patient becomes more frightened by inadequate pain relief and feels more helpless

2)Psychogenic pain is often inaccurately diagnosed simply because a physical cause cannot be found

3)patients with symptomatology incongruent with the physical cause for pain are likely to have poor or ineffective coping styles that predate onset of pain

4)it is normal to be depressed where pain is chronic. depression probably hinders coping mechanisms

5)addiction is not an accurate label for a person who takes opioids for pain. prolonged use of opioids may result in physiological changes of tolerance or physical dependence (withdrawal), but these are not the same as psychological dependency (addiction)

6)Recent studies show that chronic opioids maintenance for non malignant pain may be a humane alternative to options of surgery or non-treatment if there is no history of drug abuse. some pain specialists recommend opioids if other reasonable attempts at pain relief have failed.

anyway, I just think you should know that it IS a DISEASE and its not just some thing that people make up!

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I don't think confusedks ever said that fibro wasn't real or was made up. I think the point was that there is something going on in your body that is causing the disease, and doctors should be looking for the root cause instead of writing it off and saying there's nothing they can do about it. Doctors sometimes get obsessed with labeling conditions rather than treating them, so they'll say (for instance) "You can't have celiac disease because your biospy was negative." Conditions like CFIDS and IBS are catchalls for "You say you're sick, but we can't find anything wrong on you bloodtests, so go away now." That gives the doctors and excuse to stop looking for the root cause of the condition.

I spent 10 years having doctors give me all sorts of labels (incl. fibro) for why I was feeling sick, and then tell me there's nothing they can do for me, so I need to go home and quit complaining. If I had listened to them, I never would have found out I have celiac disease.

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anyway, I just think you should know that it IS a DISEASE and its not just some thing that people make up!

I think you misunderstood the post.

She was not saying that people are making up their illness. That was not the point she was making.

She was stating that the symptoms of Fibro are CAUSED by something which has not been diagnosed....that people should dig deeper and look for that underlying cause.

I agree.

You actually posted something very similar to what she was saying (from your Dr.).

"When you diagnose FM look further. Ther eis a 60-70% chance there is an underlying disease (hypothyroidism) Physicians need to be checking often for the onset of new disorders."

Personally, I believe that in ALL cases of fibro. there is an underlying disease condition.....something that is actually identifiable and treatable.

"Researchers dont know what causes Fibromyalgia...."

They dont know what causes IBS either...yet they give out the diagnosis and they hand out the prescriptions to "treat" the symptoms of it. I think we can all agree that IBS isnt a "real" diagnosis....its a label given to a cluster of symptoms for which there is no known cause. If one chooses to dig deeper they can identify the cause of those symptoms....whether its Celiac, another food intolerance, yeast overgrowth, bacteria infection, parasite.. etc.

The point is...*something* is always behind those symptoms. The body doesnt just go into a state of chronic pain for no reason. Genetics can make us more susceptible to certain things which can lead to the development of disease....however, I do not believe that symptoms can just "appear" without cause.

I cant even begin to count the number of people that I know of who were originally diagnosed with Fibro and then later correctly diagnosed with the true cause of their physical pain. Something that they can actually treat and recover from.

Even though I could have met the "criteria" for a diagnosis of Fibromyalgia (Dr.'s had no clue what was wrong with me, I had pain all over and all tests were normal)...I was never given that diagnosis. I never would have accepted it because deep down I knew that there was an identifiable cause for my symptoms.


Rachel

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I don't think confusedks ever said that fibro wasn't real or was made up. I think the point was that there is something going on in your body that is causing the disease, and doctors should be looking for the root cause instead of writing it off and saying there's nothing they can do about it. Doctors sometimes get obsessed with labeling conditions rather than treating them, so they'll say (for instance) "You can't have celiac disease because your biospy was negative." Conditions like CFIDS and IBS are catchalls for "You say you're sick, but we can't find anything wrong on you bloodtests, so go away now." That gives the doctors and excuse to stop looking for the root cause of the condition.

This is exactly the point. In my opinion to accept a diagnosis such as Fibro. is to accept that you have to live with chronic pain. We dont have to live with these symptoms. What you CAN do is find a Dr. who will not label you with a condition that is not treatable.... and who will search for the root cause.


Rachel

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They dont know what causes IBS either...yet they give out the diagnosis and they hand out the prescriptions to "treat" the symptoms of it. I think we can all agree that IBS isnt a "real" diagnosis....its a label given to a cluster of symptoms for which there is no known cause. If one chooses to dig deeper they can identify the cause of those symptoms....whether its Celiac, another food intolerance, yeast overgrowth, bacteria infection, parasite.. etc.

The point is...*something* is always behind those symptoms. The body doesnt just go into a state of chronic pain for no reason. Genetics can make us more susceptible to certain things which can lead to the development of disease....however, I do not believe that symptoms can just "appear" without cause.

Even though I could have met the "criteria" for a diagnosis of Fibromyalgia (Dr.'s had no clue what was wrong with me, I had pain all over and all tests were normal)...I was never given that diagnosis.

I never would have accepted it because deep down I knew that there was an identifiable cause for my symptoms.

I could not agree with you more. When I received a diagnosis for IBS and a "prescription", I told him I don't take medication for symptoms and walked out. I returned to demand (that's right - demand - medical treatment from an HMO ... can you imagine) a milk allergy test, which also showed other symptoms that he didn't bother to think about. Ironically, it was an IgE test that didn't show any sensitivity to wheat, when I now know that wheat is a major culprit, along with other emerging suspects. Anyway, the saga continues, and I could easily get another diagnosis of fibromyalgia, another "syndrome" that helps sell pharmaceuticals on the managed health care assembly line.

*added: I just went back in the thread and read some of the other posts (tarnalberry and Aleshia) on relatively new (to me anyway) medical research on fibro. It is worth considering, especially the points about dopamine and reactions to surges of stress. However, it is very significant that they do say to look for underlying conditions, which is how I see it as well. Both hypothyroidism and Fibro run in my bloodline, but on two different sides. Interesting.


-First overt but unrecognized symptoms after reintroducing dairy and wheat to my diet after a 2-month absence, 2002.

-First appearance of chronic aphthous stomatiti, 2002.

-Giardia infection and treatment with albenzole, 2005.

-Persistent symptoms and treated for Giardia again with Flagyl twice (without testing), 2006.

-Dx milk allergy from a blood test, April 2007.

-Also presented for anemia, high white blood cell count, and candida in the same test. Dx IBS, April 2007.

-Response to diet and self-diagnosis through overwhelming symptoms and possible genetic link (hypothyroidism, fibromyalgia runs in the family), April 2008

-Currently learning to go gluten-free (April 2008), and coping with new sensitivities.

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In some cases, I don't think you're going to find a bacteria, virus, fungus, food, or other physical factor that is causing fibro, however. (Not all, some. Please read on before responding to this sentence.) From what I've synthesized in my reading, it seems that it's most likely an issue of an overspent system.

Think of a big tank of water, with a hose connected to a home faucet running into it, and a small hole at the bottom. The tank is our body's chemical system, all the chemicals we need to run the body's systems on a day to day basis. The hose running into it is our metabolism, creating more of these chemicals. A varying amount of water can be fed into the tank from the hose, depending on how open the faucet is, but only a maximum amount of water can be put through the hose at any one time. The hole at the body is catabolism - the use of chemicals to do things in the body - and the use of those chemicals to deal with stressors (physical, chemical, mental, emotional, etc.) on the body.

If you make the hole too big (any single one, or any combination, of those stressors is too big), the water will empty out of the tank faster than it can be put in by the hose. Eventually, when the tank's more or less empty, the water source that was supplying the hose may start running dry, as it's been tapped out and been turned wide open the whole time. (This faucet isn't connected to an unlimited source. Perhaps it's a small well. :) ) Then the tank can't even be refilled.

My point here is that it doesn't have to be an underlying physiological thing. You may say "well, you must be hypothyroid if you're not producing enough thyroid hormones", but neither will all fibro patients test that way, but it may be the original stressors, which have long since gone, but the effect on the body has not, is the issue. The effect of a stressor may last long past its presence, and then treating the stressor itself isn't useful, but the remaining effects do need to be treated.

Of course the symptoms are very similar to many other conditions, and certainly the system drain could be brought on by other issues - sleep issues in particular, in my opinion, as well as stress management issues (ooo, me, me!) - but that's not to say "eliminate this bacteria/virus/fungus/food and you'll be cured".


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I'm another one who thinks FMS is a description of symptoms and a good starting point for finding the root cause. I was also diagnosed with FMS, but when I went gluten-free, 99% of my symptoms went away. When I start to feel like I'm getting a fibro flare, I know it's time to do some digging into what I'm eating and make sure I'm not accidentally eating gluten somehow. It's a tough disease because there are so many different things that can cause it from celiac to lyme to environmental stress. It's hard and very time consuming to find the root cause of this one.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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It's a tough disease because there are so many different things that can cause it from celiac to lyme to environmental stress. It's hard and very time consuming to find the root cause of this one.

I agree...the answers dont come easy with this....it is VERY time consuming trying to get to the root cause...but of course its well worth the effort (at least for me it has been).

What makes it THAT much harder is that conventional medicine is so quick to give the "label" (and then hand out the prescriptions) but they really do not test for any of the underlying conditions that are most commonly involved in causing these symptoms.

These kinds of syndromes are BIG money for the pharmaceutical companies.

Why is it SOOO difficult to get an official diagnosis of Celiac and yet NOONE has any difficulty getting the Fibro. diagnosis?? It all comes down to BIG money.

Most Celiac's will be diagnosed with either Fibro or IBS before they ever get a real diagnosis....and usually this will only come when the patient has done their research and requested the tests on their own.

This is why I say that the BEST thing to do is investigate all of the possibilities.....don't expect the Dr. to do that for you (especially in an HMO) its just not going to happen.


Rachel

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Most Celiac's will be diagnosed with either Fibro or IBS before they ever get a real diagnosis....and usually this will only come when the patient has done their research and requested the tests on their own.

This is why I say that the BEST thing to do is investigate all of the possibilities.....don't expect the Dr. to do that for you (especially in an HMO) its just not going to happen.

This is exactly what happened to me. I got my fibro diagnosis and immediately went to the library to check out every book they had on FMS. I tried 10-20 of the suggestions I found in those books. One of the suggestions happened to be eliminating gluten... and here I am today. The thing that is most frustrating is many people diagnosed with FMS are too tired and hurting and brain fogged to do a lot of this for themselves. These are people who really need help from a doctor to guide them in the many different things they can try to find the root cause.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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My point here is that it doesn't have to be an underlying physiological thing. You may say "well, you must be hypothyroid if you're not producing enough thyroid hormones", but neither will all fibro patients test that way, but it may be the original stressors, which have long since gone, but the effect on the body has not, is the issue. The effect of a stressor may last long past its presence, and then treating the stressor itself isn't useful, but the remaining effects do need to be treated.

Of course the symptoms are very similar to many other conditions, and certainly the system drain could be brought on by other issues - sleep issues in particular, in my opinion, as well as stress management issues (ooo, me, me!) - but that's not to say "eliminate this bacteria/virus/fungus/food and you'll be cured".

You're right....the "cure" isnt always going to be as simple as elimininating a pathogen. It doesnt usually work that way. This is because *one* stressor typically doesnt put THAT much stress on the body (to the point that chronic disease symptoms develop)....the immune system can deal with certain things. The problem is that when one thing puts alot of stress on the body the immune system has a harder time dealing with additional stressors.

Its only when things start to pile up and the immune system is overwhelmed that symptoms begin to develop.

For example I dont know of ANYONE who *just* has chronic Lyme Disease. It NEVER happens that way. The bacteria may be present in the body for years and during that time the immune system may be handling it fine...until times of extreme stress...or until there is significant exposure to some other toxin....or until another infection comes into play....or until food intolerances put more stress on the immune system...etc.etc.

All of these things are not seperate issues....it is ONE body and each stressor adds to the burden which is already there. Once the threshold is reached symptoms appear...a heavily burdened immune system leads to all of the symptoms that are "Fibromyalgia".

Genetics are certainly a factor but without the underlying cause the symptoms would not develop.

Its the same with Autism....definately a genetic link....but without the "triggers" the condition would not exist. These triggers are all very much still present in the body...and nothing changes until they are ALL addressed.

Autism is multifactorial, Lyme Disease is multifactorial and I'm very certain that Fibro and CFS are also multifactorail. In fact those who have studied these conditions find that they are all very similar....the same underlying issues are involved in the vast majority of cases.

I see it a little differently then the way you described it. I would say that there is a bucket which takes in all of the stressors that we are exposed to... and a properly working system never allows that bucket to become full....therefore, the bucket never spills over.

However, certain stressors have the ability to affect the body's biochemistry (especially if a person has a genetic vulnerability) and this can slowly affect the way the body would normally keep the bucket from overflowing. Things start getting in the way, slowing everything down and over time with each added stressor the bucket becomes more full. Eventually the bucket reaches its capacity and the stressors spill over. The immune system can no longer deal with everything and it becomes overwhelmed.

At this point there is not just *one* stressor involved in the onset of symptoms. Multifactorial means that there are many issues....as is the case with Autism. Fibro. is similar that way.....and I totally agree with you that getting rid of the underlying cause will not always resolve the problems. The body also needs to be balanced....this means that changes that were done to the biochemistry need to be identified and corrected. Alot can go wrong and it doesnt always resolve on its own.

IMO...its still MOST important to eliminate the root cause(s) because without doing that you cannot recover. The bucket will continue to spill over.

Once the BIG stressors start to weaken the immune system *every* stressor is a factor and they all contribute to the total load. This includes sleep issues as well as countless other things which might not seem significant to a healthy person.

I also have problems with neurotransmitters and hormones....surges of stress are not tolerated and they do trigger symptoms. None of these problems occured without cause....not for me anyway. The hardest part was finding Dr.'s who knew what to look for. I did have a pretty good idea of what was going on long before I found Dr.'s who could actually help me. A Fibro. diagnosis would not have been helpful for me as it would have done nothing to bring my health back.


Rachel

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I've had all kinds of symptoms since I was about three years old. I used to have 'growing pains' so bad that I couldn't even tolerate a blanket on my legs at night because of the unbearable pain.

It all started when I got tonsillitis at the age of three. In those days they still believed that tonsils were not needed, and they took them out routinely if you had tonsillitis. I remember my tonsils and adenoids being removed sitting in a chair, with only local anesthetic, and I was sent home right after.

It was a very traumatic experience, seeing blood everywhere etc. Right afterwards I started having chronic, life threatening asthma. I spent a lot of time in the hospital because of it as a young child. In those days they still believed that it was detrimental to allow family to visit young children in the hospital, so I'd be in the hospital for weeks at times (once over Christmas when five years old) without being allowed to see my parents and siblings.

All of that is enough trauma to trigger celiac disease if you have the genes. So, on top of the constant asthma, I now got diarrhea, was chronically fatigued and lost weight to being so skinny I look awful in pictures. Not to mention pale and listless looking!

So, here I was, a young child with chronic fatigue, chronic pain (especially my back, but also headaches and joint and muscle pains that at times were severe), not growing very well (I caught up as a teenager to be a normal height), pale (probably anemic, was never tested for), gastro-intestinal problems.

And guess what: Because children can't possibly have all those problems (so goes the common belief) she must just be lazy and trying to get out of helping her mother and going to school.

Therefore, other than the asthma, it is best to ignore the complaints because it will encourage her in being lazy. Oh, and she is depressed? Another way of trying to get attention, lets ignore that, too.

Fast forward to a few years ago. All our marriage up to then my husband was telling me I just didn't love him enough to do things for him. My depression, pain and fatigue are all psychosomatic to allow myself to be lazy.

I knew that fibromyalgia is a catch-all for a lot of things. But I got diagnosed with it anyway, all the while looking for the causes. I thought that if a doctor says I am ill, that my husband and kids would finally believe me that I was not making it up, and that it was real.

It didn't work. So, now I had a name for it. But my husband still said that fibro is all psychosomatic, too! I couldn't win. Because I looked well. That is a big problem with fibro, often you look so healthy, while feeling so dreadful!

Three years ago I got very ill with chronic diarrhea (and I mean watery, everything went straight through me within minutes) for six months. After which I diagnosed myself with celiac disease (my doctor was incapable of getting it, still).

After finally figuring out my other intolerances, I am off the codeine contin (12 hour release) I had been on for five years for the unbearable pain.

I still have all the tender points (and I mean all 18) and the terrible fatigue. I still feel dreadful. I am still working on trying to find out the underlying causes.

But it is a matter of finances. Really, we could afford to do the Igenix testing for Lyme (yes, there is Lyme disease in Germany, and plenty of ticks - it just goes by a different name), and have my amalgam fillings removed by a holistic dentist who knows what he is doing in that regard, to see if it would help.

But my husband thinks I have cost him enough money already, and only if I can guarantee him that it would make a difference will he pay for it. How can I guarantee anything, since I am still searching?

I don't know if I have Lyme disease, that is why I would like to be tested for it, to see if it is a problem. But unfortunately, doctors in Canada don't believe that Lyme disease exists in Canada. And no insurance would cover the treatment even if I test positive.

Our insurance still believes (as does my dentist) that amalgam fillings are perfectly safe, and won't cover the removal, unless the filling is broken. I've had some replaced by white fillings, but my dentist takes no precautions.

Yes, I still qualify for having fibro. And because I have had it for 52 years, I don't know if I can still get 100% healed even if all the causes are uncovered. But I still think that I could improve a lot if doctors and insurance companies would be more reasonable, and better informed and trained properly to recognize causes and know how to test for underlying issues instead of just prescribing meds.

I used to have trouble falling asleep and staying asleep. I would have nightmares, and every little noise would wake me (right, I missed the deep sleep phase apparently). But since I stopped eating the foods I am intolerant to, it slowly got better. My brain got the nourishment it needed to function right again and to heal I believe. Usually I sleep well now, not much will wake me, and I don't usually remember my dreams now. And I certainly don't have those awful nightmares any more.

I don't believe that in my case the gluten intolerance is caused by other issues, as I can see it everywhere in my family. But I do believe that my other issues have another underlying cause somewhere, and it is frustrating me to no end that I can't do anything about it due to not having any money of my own.

So, I am quite handicapped, too fatigued to really do much of anything. My husband and children still think I am lazy. Because I am capable of pushing myself to do 'normal' things at times. What they don't see is, that even though I CAN do those things, in doing them I use up the energy for the following days, and end up in bed (of course, I am just lazy lying around in bed, too).

I do believe that eventually there will be enough damage that you can't get rid of all the fibro symptoms any more, no matter what you do. And while you search for answers, it is a good idea to treat the pain and other symptoms, because trying to ignore pain (which I did for many years, unwilling to take painkillers) takes a TON of energy and makes things much worse.

I have been completely unable to exercise for years, as it drains the little energy I have and I pay dearly for it by being sick for days afterwards. I know exercise works for many people with fibro, but it has never worked for me.

Also, research has shown that when you are in chronic pain and you take opioids you don't get addicted, for some reason. I am a good example. I took pure codein for more than five years, 24 hours a day (I was still in pain, but it was enough to manage). When I realized that the pain was gone after eliminating the foods I am intolerant to, I stopped taking the codeine one day. I NEVER had any withdrawal symptoms or craving the codeine at all. I only take it now when I have been glutened or have eaten too many foods with salicylates (I have a threshold, and sometimes I overdo it... you can't always know exactly how much is too much). Which isn't very often.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Also, research has shown that when you are in chronic pain and you take opioids you don't get addicted, for some reason. I am a good example. I took pure codein for more than five years, 24 hours a day (I was still in pain, but it was enough to manage). When I realized that the pain was gone after eliminating the foods I am intolerant to, I stopped taking the codeine one day. I NEVER had any withdrawal symptoms or craving the codeine at all.

Interesting! I never knew this but I always wondered why my little body could handle so much Hydrocodone and yet I NEVER got addicted...it also didnt seem to have much of an impact on me.

I took it every single day for over a year. My Dr. told me that I *had* to be addicted....and yet I never felt addicted. :unsure:

I felt like I could stop taking it...if only the pain would go away. He kept telling me that I would not be able to stop taking this drug cold turkey. I recall that I was very upset that he was telling me the drug was highly addictive AFTER he'd already been prescribing it for more than a year! :angry:

Anyways, I DID stop taking it cold turkey. It was the day I drastically changed my diet...gluten free, casein free, sugar free, preservative free, additive free, etc. etc......and I NEVER took another Hydrocodone pill again. :)

I did not experience any symptoms of withdrawl.

Since the pills never seemed "strong" to me....I ended up giving one to a friend who had a bad headache one night. The hydrocodone affected her in a big way...she felt really "drugged up". I was shocked because I would take several of these a day and not feel anything! :huh:

I guess thats why they say NOT to share prescription meds. :ph34r:

Ursa, I was sad to read your post. I hope that you can find a way to get whatever tests you need and that your husband will support you on this. Your health is important!


Rachel

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