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Fibro is a non-diagnosis...?
10 Replies
chefbeth - October 16

Hello from Chefbeth. Last week I saw my GP - I have been seeing her for years - so I'm lucky that she was willing to listen to my sypmtoms - thorugh tears, of course. I had everything written down with questions ready. She immediately indicated that she believes that I have FM. Instant relief in being able to "name" what I have been feeling for such a long time. She is doing a "fasting" realm of bloodwork and is referring me to a 'good" Rhuem. who treats many FM sufferers and encourages a more holistic approach. I shared this with a friend who does nuerofeedback and I asked her about it for FM patients. She said that she has a physician daughter who told her that a diagnosis of FM is really a non-diagnosis, because it is a catchall of what is causing pain and discomfort. What do you think of this and i realize that I have alot to learn....she also indicated that another dr she knows believes that FM sufferers basically are having allergies to the food we eat (toxins, etc.). I believe that what we eat completely affects how we feel - does this mean I developed food allergies over the last 10 years - the pain is worse than it was 5 years ago...I have read to much about FM and it seems that we all suffer so many similar symptoms, but different ones too. I have several really bad days, but I think I more just as many good ones.


kvc33 - October 16

Some doctors are of the opinion that fibromyalgia is just a diagnosis that is made when a doctor can't find anything wrong with their patient. I do not agree with that. Many illnesses present differently from patient to patient, lupus and MS for example. If you spend enough time with fibro patients you will see a definite pattern and there is criteria such as having to have pain in all four quadrants of the body to qualify. Food allergies can be a part of a patient's problem so by all means try an elimination diet to see what works best for you. Common allergens are grains (especially wheat), dairy, soy, and fructose. Yes, many of us can't eat fruit! Your digestive system should tell you the most as to what is good for you. If you suffer from bloating, abdominal pain, constipation or diarrhea, you probably have food intolerances. Stay away from caffeine, artificial sweeteners and junk food. I believe that not everyone who thinks they have fibro has it, sometimes there is another reason for their pain that they have yet to discover. I don't think that fibro is just food allergies, I have seen people with severe food allergies who don't have the symptoms of fibro. It's easy to blame it on that and some people are really into 'the food we eat is killing us' and I don't fall into that camp either. I have seen too many people who eat junk food and have tons of energy to believe that. Having said that, buy the best food you can afford and eat well. There is no harm in that. Remember that we still don't know what causes fibro and all the theories are just that. I have seen two people recover somewhat and they are both on thyroid medication.


Fantod - October 17

Fibromyalgia (FMS) is a syndrome that is recognised by the Centers for Disease Control, The National Arthitis Foundation and The World Health Organization. It is not a figment of our collective imaginations.

There is, however, some truth to the assertion that at least some of our symptoms could be attributed to environmental triggers including food and preservatives. Many holistic physicians feel that FMS originates in the gut. I am senstive to gluten, allergic to black and green tea, common food preservatives and some food colouring. I am also highly sensitive to medication. I believe that I have had FMS since I was a kid. I had chronic "growing pains" and never felt rested.

The problem is that once our immune systems are triggered, there is no known way to effectively stop it. Certainly you can control what you eat etc but by then, the damage is already done. If the medical community could figure out an accurate way to predict the the possibility that an individual may be prone to develop FMS, none of us would be on this board today. And, as you know the severity and variety of symptoms are pretty different from one person to another.

No matter what any doctor may think, they have a duty to treat it or send the patient to someone who will. Dismissing FMS as a "catch all" diagnosis is disrespectful to someone who is really suffering and a clear violation of the Hippocratic Oath. Take care and enjoy the rest of the weekend.


Stacey373 - October 17

I don't believe Fibro is a "non-diagnosis" as it is a REAL illness and is recognized by the organizations Fantod listed. I do think that Fibro is a "last resort" diagnosis. Most doctors will test you and rule out everything else that you could have before they ever diagnose Fibro. But that is because Fibro mimics alot of other diseases so they need to be sure you don't have any of those.

If I remember right...years ago the doctors also didn't believe MS was a "real" illness. it wasn't until they eventually found that MS people have lesions on their brain that they actually started recognizing it was an actual disease. Couldn't the same thing happen with Fibro? Maybe someday they will find something similar that will prove to the "non-believers" that this is a real illness?

Even though Fibro sufferers have different symptoms that vary from mild to severe...we do all have the SAME MAJOR symptoms. If you ask everyone of us what are your biggest complaints/symptoms? We would all say the same things. There's absolutely NO WAY that is some sort of a coincidence.

As for the food allergies causing this? I can't believe that this is ALL caused by food allergies. I'm sure that what we eat has something to do with it....but it's not like we can quit eating the "bad stuff" and suddenly feel better. I used to basically be a vegetarian...didn't eat much meat at all (maybe some chicken once a month) and rarely ate junkfood. I STILL got Fibro and had the symptoms of it long before I started eating meat and less healthy stuff.

Although I have to admit over the last few years I haven't been eating right and my fibro has progressively gotten worse. I've actually been thinking about changing my diet to see if it does make a difference with my pain and what-not. Not to mention, I've been slowly gaining weight, which might be caused by my thyroid, but obviously eating healthier would also help.

hmmm....some things to think about.

Chefbeth, Please don't start second-guessing what you are feeling just because one doctor or one person doesn't believe fibro is real. You KNOW something is wrong with your body and it's not all in your head. Take Care, Stacey :o)


chefbeth - October 18

To all who commented on this thread - thanks so much for your wisdom and knowledge. I have been in tears a few times the last couple of days out of frustration for the stiffness I feel - particulary when I have been sitting for more than 15 minutes - both hips, knees are REALLY stiff and I'm embarrassed when I get up to walk and I'm either slumping or shuffling, until things loosen up. I had xrays done of the hips and the ortho said that my hips look like typical 40 year old hips - but no arthritis. I've always been active, fit and able to challenge myself at the gym and long hikes. My husband and I love to go to colorado and hike. By the way, I summitted a 14,000 peak last summer! Going up was long, but I did it - slowly. I met a woman who had hips and knees replaced and I thought - "God I wonder if I will be her someday". Well - she was in great spirits and doing her thing - I was impressed. The climb down was excrutiating - and we rested for two days after. But I was sooo proud that I achieved such a challenge. I'm just buying into my fear that I will become more and more debilitated - and I can't handle that. I plan to summit again next summer. I've been reading about colon cleansing (naturally) and doing a brief juice fast to clean out my system. Not sure yet and have not started the Lyrica that my doc gave me. BTW, my uncle had MS..he passed away last year.


bbass - October 18

My rheumy dr that I have seen said that there are two things that are constant with fibro. One, that it is a sleeping disorder, that they have actually tested people dx with fibro in sleep studies, and there is a difference. Fibro patients do not have stage 4 sleep. So the muscles do not repair themselves very well during sleep. Also, that there is a general misreading of pain. She didn't really have a solution besides getting better sleep, learning to pace yourself, trying to tame stress, and trying anti depressants or lyrica. I opted out of Lyrica because I don't want the rapid weight gain that comes with it. Don't know if that helps, but just thought you might like to know that there are definite proven things.


Fantod - October 18

Beth - The longer a chronic pain cycle continues, the harder it is to manage or stop. By not taking your medication you are setting yourself up for further problems. FMS creates a great deal of stress on the body as a whole. I hope you will reconsider and start the Lyrica until you see the rheumotologist. Take care.


Canada17 - October 20

Any doctor worth their weight in salt would never diagnose you with Fibro simply because they don't have an answer. Fibromyalgia is certainly a real diagnosis. There is not cure and barely a suitable treatment, it is a life-long dis-ease.

I will agree that food plays a major role in my pain. For example, I cut potatoes out of my diet at the recommendation of my specialist. I didn't eat a single potato for two weeks and then tried one serving, the next morning I felt like I had been hit by a truck.

I explained my experience with my doctor and she smiled and said she expected that. She explained that for some reason, people with Fibro actually process things differently, from pain signals to food. While I cannot remember the technical terms she used, in layman's terms our cells use carbs for energy. When the carb receptors get full, the cells stop allowing carbs in and they are stored a different way. But, they have found that for people with Fibro, the receptors get full and the cells don't stop allowing the carbs in. This means our cells are overfilled with carbs and cannot process everything which results in pain signals. So, while I am not allergic to potatoes, I cannot process them properly. The same can be said for refined white sugar, just a teaspoon gives me a massive headache (I've switched to organic cane sugar and not had a problem).

While you can develop allergies to anything at any point in your life, an allergy test might not show anything. I know every test I have had done has come back as normal (save for low iron and B-12), and yet I have all this pain. I have been very fortunate to have found a GP who is willing to dig deeper to find out what is going on.

In my opinion, my food sensitivities are the effect of my Fibro, not the cause. Not knowing the need to eliminate and control what I consume (even healthy food choices) only compounded the problems.

I noticed a HUGE difference in the pain levels I feel once I eliminated problem foods and substances (perfumes, medications, etc.) from my body. However, the reason I believe the problems I was having were the effect and not the cause is due to the extremely simple realisation that I still have Fibro. I do what my doctors tell me to do to manage my symptoms, but I still have pain every day. I have been able to reduce my symptoms to a more manageable level but I still have really bad days every now and then.

The only (almost total) relief I have felt is during pregnancy. My Fibro is all but in remission. But, all good things must come to an end and I am preparing myself for an uphill battle as my body readjusts to not being pregnant once Zoee is born.

Don't waste your time on people who think Fibro isn't real, or that it's something you're diagnosed with when there is nothing wrong with you. Love yourself and be kind to your body. Get plenty of rest and try not to let stress get the best of you, it's our worst enemy.


chefbeth - October 21

Dear Canada - thanks so much for taking the time to share your knowledge, experience and hope about FMS. Congrats, by the way on your baby! I'm sure she will be beautiful! I'm still adjusting to the idea that what I have may be a disease that won't go away. My GP (she's great...) will be running blood tests and prescribes appt with Rheum. to rule out anything else. I think the biggest "pain" in the rear (no pun intended) is my stiffness. I can't believe that it has been going on (on and off) for so long. Not until it became an everyday thing with sleepless nights and more time on heating pads did I realize that something wasn't right. I have seen a physical therapist who did some re-aligning of my hips and I'm doing exercises to strengthen, but I believe that the pain is here to stay. Anyway, I am on day 2 of a 5 day cleanse. Basically all veggies (raw and steamed), fresh fruits and brown rice. NO sugar, alcohol, animal products, wheat, fat, easy on salt, and gluten. I'm taking herb supplements and drinking alot of water. My stiffness has eased some, but at the end of the five days, I'm hoping to feel better - or at least to ease my constipation! Well, again, thanks so much.


Canada17 - October 21

I'm glad to hear you are try to cleanse your body. I think you might be interested in looking at the Diet forum. I posted an elimination diet there a while back that my specialist gave me. It worked wonders.

I see you said you drink a lot of water. One thing my doctor told me was to stay away from tap water. It has a lot of additives in it and I find my stomach is more calm when I don't drink it. She also suggested I find myself a salt water pool for water aerobics because chlorine can wreak havoc on people with Fibro.

Good luck to you.


bburnie - October 23

I think the problem isn't that FM doesn't exist...its the defining traits of a 'syndrome' vs 'disease.' With a disease, the medical community is able to test or measure it with verifiable proof (other then patient testimony) or determine a verifiable cause. Because neither of these have yet been established with FM it is still a 'syndrome' and therefor some people and doctors may feel it is a non-dx. Syndromes are a group of symptoms that seem to point to a established disease but since there is no known cause or test, it is often seen as a catch all diagnosis for chronic, unknown pain. Yep, it stinks...BUT...what we call it really doesn't matter. Its HOW we deal with it once we know its here.

We all KNOW something is off in our bodies. How often do I look at other people- even very overweight friends and think to myself 'wow, do their bodies hurt like mine?' or 'does everyone feel this crappy all the time?'

Don;t worry about the label so much- focus on what you can do to make your life enjoyably and livable...b/c that is really all you have control over.




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