Author Topic: Managing My Fibromyalgia Symptoms  (Read 12921 times)

Offline carolc

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Managing My Fibromyalgia Symptoms
« on: March 21, 2012, 10:41:33 AM »
Living with a chronic disease, fibromyalgia, has changed everything about and in my life.  My husband has always searched the internet when a problem came up in our lives; it is/has become part of our self-reliance on ourselves.  When looking one day for information for his own sinus condition, he came upon an article about guaifenesin (which relieves sinus congestion) and how Dr. R. Paul St Amand was using it to not just help his fibromyalgia patients feel better, but literally was reversing their symptoms.  My husband immediately ordered his book for me and I started the protocol.

I acknowledge Dr St Amand and Claudia Craig Marek, the authors of the book What Your Doctor May Not Tell You About Fibromyalgia.  Parmaceutical companies, along with the media through their commercials, would like you to think that their drug is the best at eliminating your symptoms or making them less severe, i.e., Lyrica].  They only describe the drugs' side effects which can be grave, because they are required by law to do so.

I don't take any.  The one I take, guaifenesin, has no side effects and is easily available.  And I strongly believe this situation will only become worse when we, our society, experience a systems' disruption, whichever you may believe possible.

I hope my information will give hope and help to others who either suffer from fibromyalgia and its debilitating symptoms or know someone who does; and motivates them to take more control of their disease.

I manage my symptoms now.

Offline Roundabouts

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Re: Managing My Fibromyalgia Symptoms
« Reply #1 on: March 22, 2012, 12:59:30 AM »
I have found that working physically hard outside drinking water and changing my diet to Paleo has worked for me.  I haven't done Paleo 100% 100% of the time.  Have done enough that when I eat a bunch of crap food I start to go down hill again.    It's amazing how fast I can notice changes.  One of the benefits of fibro.

Had a friend who went the med route.  So many pills and side effects which required more and more pills.  Did they work for her? Well kinda she no longer has pain.  None at all she is dead.  Now I am sure that the medical people would say that the pills didn't kill her.  I would strongly disagree. I watched her slide down a bit by bit with each new drug. 

I can understand the desperation of wanting to get out of pain.  Oh to think clearly.  To be able to have a hug or a gentle touch.   To be able to take a shower and get dressed without having to nap afterwards.  To sleep.  Yes I can understand.  I was so bad at one point I could not walk ( that meant being carried to the bath room)  nor could I feed myself.  The pain.  The softest sheet felt like I was being scrubbed with sand paper and acid.  It would have been so easy say I give up give me drugs.  Easy that is until the side effects kicked in.   

I can't stress how important it is to take responsibility and never give up!  There is hope if I can go from my lowest of lows to digging post hole hauling 50 & 90 pound bags of cement gardening construction work and doing 35 hours of massage a week there is hope. 

For those that don't know what FMS / fibro / fibromyalgia is   I can only describe it as you know when you have the flu so bad your muscles aches & your skin and hair hurts?  Well that is what it feels like 24 / 7 for someone who has a mild case of  fibro.  Or it can feel like when you sleep on your neck wrong that type of pain but body wide.  The pain just never stops.   Just a simple hug or gentle touch can make you cry out in pain. 

 For me I never knew when it would be worse.  So I couldn't warn hubby or the kids.  At one point they just didn't want to hug me or touch me for fear they would cause me pain.  Clothes can feel like sandpaper dipped in acid against your skin.  I say it's like a perpetual wax job that is on going and never is done.  Hubby can breath on me in the middle of the night and that could cause enough pain to wake me.   Crazy weird. 

Sometimes it can be worse and sometimes better.  Then you can get a brain fog.  For me it was like I know I should know what that shoe is but for the life of me I couldn't tell you what you did with it.  It was like my brain just couldn't process.  Other times it's like when you go into a room and forget what you went in there for or like trying to remember a name or word it's on the tip of your tongue but you just can't think of it.  Like that but it does not go away. 

Sleep whats that?

That is what it was like for me and I had a fairly mild case. Notice I said HAD  ;)  much better now.  Ha in your face sucka to all who said I shouldn't be so stubborn and just take the drugs.


Offline AussieNana

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Re: Managing My Fibromyalgia Symptoms
« Reply #2 on: March 22, 2012, 01:15:23 AM »
Paleo for me too. Plus adrenal support plus I find that thyroid helps a lot too. 80% of the pain, gone when on the natural thyroid. I take Ecothyroid finding it suits me better than Armour - and the synthetic pharma drug didn't improve things at all. I am hoping that as I continue to improve that I won't need the thyroid supplement, but one step at a time.

Paleo also makes my sinus problem go away but it comes back within a week or so of going off the paleo - but is much, much worse with grains than just sugar. Neither good, but bread is worst.

Offline FrugalFannie

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Re: Managing My Fibromyalgia Symptoms
« Reply #3 on: March 22, 2012, 05:25:36 AM »
I have had clients with fibromyalgia. I own a personal training company. And every one of them have told me how much better they feel when they stay consistent with exercise. I take a progressive approach where I listen a lot to what they say they are feeling on any given day. I set the expectation that we will not get rid of every pain in a week. I also get them to listen to their body and separate their fibromyalgia pain from soreness after working out. I would say within 3 months they are all feeling at least 50% better depending on where they started and usually much better than that after another month or two.

Offline Roundabouts

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Re: Managing My Fibromyalgia Symptoms
« Reply #4 on: March 22, 2012, 06:51:43 AM »
I also get them to listen to their body and separate their fibromyalgia pain from soreness after working out.

It is so very important to know your body and the difference between fibro and something else.  Once the diagnosis goes into your medical record it seems then it is not ever possible for pain to be any thing else other than FMS.  Having back pain with heartburn soreness in your arm?   Don't worry you can't be having a heart attack because it's just fibro.  Having pain in your side or abdomen don't worry it's nothing more than cramps or fibro.  Couldn't possibly be a kidney stone or tubal pregnancy.   

 Ya know us people with fibro are dam lucky because we can never have any thing go wrong with us.  Never a broken bone or even a strain sprain or ruptured disc.  I can't tell you the times I have had Drs act like that to me personally or to someone I know.  Seems like the only thing you can hope for is they don't review your chart?   Such a crock!

The worst example of this is I had a client come see me out of desperation.  This woman was in such pain.  After working on her for 10 min (prior had really LISTENED to her story for 35 -40 min) I told her something is not right with her back.  I could only  help minimize the pain temporarily.  I stopped treatment and told her to go to the ER.  I was sure she had at least 2 fractures in her spine.  Did she no… She had 5!  FIVE compression fractures in her back.  She could have ended up in a bad way had I continued treatment or she had gone to a Chiropractor that did not do or read good X-rays.  (*sigh* so many sad stories) 

This is why if I had had a choice I would have never wanted to be officially diagnosed and have it put in my charts.  To be fair not 100% of the Drs treat you like that I have been able to find one in 14 years that will listen and understand.  His wife has it pretty bad so he has some direct understanding. 

This is also why it is so very important that you know your body.  Understand your situation.  I know sometime all you want to do is push it away the best you can.  Don't.   Embrace it pay attention to it learn it feel it know it.  Then be will ing to stand up for your self or have somebody that will on your side.  That could very well save your life. 

Offline carolc

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Re: Managing My Fibromyalgia Symptoms
« Reply #5 on: March 26, 2012, 06:36:15 PM »
My husband and I heard about the Paleo diet from one of Jack's podcasts; and they discussed it briefly when we saw him and his wife at The Self-Reliance Expo in Salt Lake City.  We are currently busy doing gardening spring cleanup, planning and seed-planting.  It does make me feel better in all my senses to work outside; the fresh air (we just had a spring shower with a rainbow pass by); I noticed today that tree buds are different colors; the reward after the effort; the miracle of a tiny seed (thinking of amaranth) growing a stalk 7-8 ft tall in a season; the yellow tomato exploding in my mouth; storing/drying food for the future.

To:  Roundabouts:  I am so sorry for your loss; we are sure that my brother died from the result of a prescription drug, though we were unable to legally prove it.

To Frugal Fannie:  Thank you so much for listening to your client.  A lot of professionals may not have.  I rely mostly on our chiropractor, who we see monthly as a maintenance program; he's also given me specific exercises.  My medical doctor agreed to my choice of following the guaifenesin protocol, but I only see him about my hypothyroidism.  Based on another specialist, I spoke with him about it; and he writes the prescriptions, based on blood tests, for my compounded T-3/T-4 thyroid capsules.

Offline rhiannon.douglas

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Re: Managing My Fibromyalgia Symptoms
« Reply #6 on: April 09, 2012, 04:17:38 AM »
I use a combination of treatments, with pain meds to support me on my worst days. I'm a 'severe' case, not able to move much most days.

But there are things you can do to keep the exercise up even then. I have yoga exercises that I can do in my chair, or in bed. They aren't the more strenuous ones but it's still something, and that makes all the difference. I do on average 6 hours of yoga a day, stretched out over the day and switching between different levels of intensity. Two of those are the two hours following waking up, so I can function.


A fellow fibro lady just let me know that after mentioning quite a few times that she had s bit more pain in her shoulders than she was used to, an X-ray revealed that she in fact had a broken collarbone, that was already healing poorly. She doesnt know when it happened, was shocked to find out that it had happened.

Offline joeinwv

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Re: Managing My Fibromyalgia Symptoms
« Reply #7 on: April 09, 2012, 06:26:12 AM »
....The one I take, guaifenesin, has no side effects and is easily available.....

This was prescription medication. Side effects may include naseau, vomiting, dry mouth and kidney stones. The study you cite had very small numbers of participants - which limits its statistical significance. I am glad this is helping your fibro.

Any Dr or drug rep in America will tell you the 2 first things you should do for fibro are #1 diet and #2 exercise. This is true for virtually any disease state. The worst thing you can do is take opiod medication - this does nothing for managing the condition, leads to dependence and should only be used in limited, acute situations.

Most Rheumatologists and Neurologists treat fibro by working on neurotransmitters in the ascending and descending neural pathways. There are 3 indicated drugs: Lyrica, which works on the ascending - Cymbalta and Savella - which work on the descending. In some cases, Savella and Lyrica or Savella and Neurontin will be used in combination.

Some Drs use tramadol as an option in place of opiods.

Offline Orionblade

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Re: Managing My Fibromyalgia Symptoms
« Reply #8 on: April 20, 2012, 06:33:49 AM »
We've represented a few dozen "fibromyalgia" patients for disability claims. In all but one case (unfortunately a case of Somatoform disorder, refractory to treatment other than antidepressants) there was at least one underlying undiagnosed condition. Rough estimate was about half were some variety of autoimmune disorder (Rheumatoid arthritis, lupus, HLA-B27, etc) and the remainder are a mix of mixtures that get shuffled inappropriately into the diagnosis of exclusion, Fibromyalgia.

I'm rather peeved (understatement) that in my geographic area, we have so many physicians that run through the list of what they're able or willing to treat, and then just slap a "he/she's crazy, must be fibromyalgia" label on and leave it. Then it sticks when you hit the next clinician - "oh, one of those 'fibromyalgia' people..."

If you're not just nuts to begin with, you're sure as hell flustered by the time half a dozen half wits have poked and prodded and come up empty handed.

Hell, my aunt was diagnosed with it a few years back, and went for two whole years with severe depression and anxiety, and all the usual fibromyalgia-attributed fatigue, even enough of the "trigger points" to meet the Disability standards... turns out she had two herniated cervical discs and nerve root impingement, and at least two broken facets (the little horns that stick out to the side of the vertebrae).

If you step back for a moment and realize that "Fibromyalgia" itself isn't really a disease, but a label for I-dunno-what-you-have-itis, then "unconventional" treatment and/or management regimes make WAY more sense. Hell, why not come up with a better, more descriptive name for you symptoms? *picks one...*  How about Ideopathic Disseminated Myogenic Pain Syndrome? (at least it's kind of a neat acronym... IDMP... "I DO mean PAIN!"  :P)

Anyhow, on that note, I think I'm going to crash for a few, but it's great that y'all are reaching outside the usual box of doctor-recommended BS pharmaceuticals that zombify, and actually getting some positive results.

The guafenesin seems like it'd be a dead-ringer for a wonky immune-mediated response... *ponders*.

As far as Lyrica and Cymbalta, I'm unaware of significant activity outside the brain? Neurontin is wicked for peripheral neuropathy in virtually all its forms. Most of the folks we've seen on the first two medications (when specifically diagnosed with fibromyalgia) have little or no gain, but then again most of these turn out to actually have one of the other disorders/diseases I mentioned.

OH! there was one really unique case... he had what boiled down to a really peculiar type of Hemachromatosis. THAT was a weird diagnosis - only came up because he stayed inside all the time, but looked like he sunbathed constantly. Not melanin - Iron deposits.

Have a wonderful weekend,
Orion

Offline Cedar

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Re: Managing My Fibromyalgia Symptoms
« Reply #9 on: April 20, 2012, 01:18:20 PM »
We've represented a few dozen "fibromyalgia" patients for disability claims. In all but one case there was at least one underlying undiagnosed condition.

Two of my close friends was exactly this.

My friend "C" was diagnosed "finally" after years of going to a doctor complaining that something wrong with her. The diagnosis was "Fibromyalgia". FIFTEEN YEARS later, she was finally diagnosed with the correct reason she had been so weirdly ill. Multiple  sclerosis. Finally someone did a Lumbar puncture (spinal tap) for cerebrospinal fluid tests, including CSF oligoclonal banding and a MRI scan of the brain and MRI scan of the spine to diagnose her. When she had the "Fibromyalgia" diagnosis all they did was a CBC bloodtest and a urine test.

My friend "T" that I used to work with at the vet clinic.. after years of finally getting the diagnosis of "fibromyalgia", ended up in reality she had Lupus.

And my other friend "B" just got diagnosed with 2 months ago with "fibromyalgia" after having severe body aches for the last 2 years. Bet you it isn't.

Cedar

Offline Doc K

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Re: Managing My Fibromyalgia Symptoms
« Reply #10 on: April 26, 2012, 06:28:41 AM »
Fibromyalgia is real.

It is a real disease with real diagnostic criteria... but these were only fairly recently (in medical history) described.

Yes, there is a very strong psych component to fibromyalgia... meaning that many people with fibromyalgia have some form of depression, anxiety, etc. And many of these people had the psych diagnosis before the fibromyalgia symptoms started.  However, many develop them AFTER the pain started... pretty understandable to me. There is also a very strong family history of psych issues in people with fibromyalgia. 

The fact that it is a "new" disease entity and that there is a strong psych component, makes many (uninformed) physicians treat like a made-up disease.

I have quite a few patients with fibromyalgia, and many of them (not most of them) have NO psych issues at all. So one does NOT equal the other.

There is overwhelming evidence from very good medical research studies (and my own clinical experience) that regular exercise significantly helps with symptoms.
I also encourage my patients to eat Paleo as much as possible. My fibromyalgia patients who give it a real try end up with less symptoms, more energy (which leads to more exercise and less pain and more energy... and on and on), as well as less use of pain medication.

I manage my symptoms now.
I couldn't agree more.

Doc K

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Re: Managing My Fibromyalgia Symptoms
« Reply #11 on: April 26, 2012, 11:17:43 PM »
Agree 100% Doc K.  I have not suggested diet changes for fibro patients.  Other than your experience, do you know of any supportive research on this?  I am very interested if you do.

I will also say that while it is REAL, it should typically be a diagnosis of exclusion after a full diagnostic workup has been performed.  Just as Ceder reported, while I worked with a pain specialty group, I recall a number of patients who where labeled with "fibro" either of their own doing or due to improper workup/frustration from a previous provider.

I no longer work in the pain specialty, but it was certainly educational on many levels.  For someone with severe flares of symptoms who have difficulty with exercise, I usually sent them to mild pool therapy to begin with, followed by steadily increasing physical activity.  For those who had the drive to do it, it was often very beneficial for their daily functional ability.  Avoiding, or working to reduce the need for opioids is just as important also.

As you stated, the psych issues involved are complex, as are they with anyone who suffers a catastrophic debilitating injury/illness.  There are those who just seem to already have the coping skills/drive/support necessary to overcome/manage, and then there are those who define (and limit) themselves by their chronic injury/illness and pain.  It is a touchy issue.

Just my own thoughts,
« Last Edit: May 01, 2013, 12:43:48 AM by Archer »

Offline Roundabouts

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Re: Managing My Fibromyalgia Symptoms
« Reply #12 on: April 27, 2012, 09:16:37 AM »
Very good comments.  Love it.  When I was told I had fibro it was after several tests to rule out other things including lymes.  That test was explained to me that if you had so many "body parts" in your blood you had it.  Then I was told even though I had some "body parts" I did not have enough to say that is what I had.   What ever…

I do have bouts of depression which the drs want me to go on meds for.  They also say I have bipolar.  Wow really because some days I am happy because I don't have pain and have managed to get a full 8 hours of sleep in 2 days so I can get stuff done.  Other days I want to do what I can't or I can go 3 days with only 2 hours of sleep.  Saying I am bipolar over that is crazy.  No thanks keep your drugs I will take care of myself.   

 So if I really watch what I eat and almost more importantly hydrate with clean pure water that can work wonders.  Water is almost magic.  I often wonder how many illnesses diseases are manifesting themselves because of chronic low grade long term dehydration. 

When I watch my plants the ones that don't get enough water may look perfectly healthy and fine but don't thrive as good as the ones that do get pleanty of water.  Even those that may not get any where near the amount of needed water they are still alive but so obviously not healthy.  They show signs of sever drought or dehydration. 

Just another thought.  Not to minimize or over simplify the issue.  When you have pain of any level it wear on you.  It can be exhausting to cope. Which can keep you on a downward spiral.   It also can make it almost impossible to think clearly.  Yes sometimes I will step in with a drug or something hard core like a Rain Drop Therapy to stop or slow down that freight train.  Slowing it just enough to get my bearings so to speak.   Usually a full nights sleep.

Personally I have to choose if I want to lay on the couch and rot with pain or go outside and work with pain.   Somedays it really does not matter what I do I will hurt no matter what.  I feel I owe it to myself and to those that truly can not get up and do,  (I have been there too) to do & focus on what I can do . 

Back when things were really bad I still was not going to fall victim to whatever was going on.  It was very hard on the family.  I looked at it this way.  If I can move by my own power I will do it even if that means I have to crawl on my hands and knees.  They would feel so bad for me.  I know they care.  But I still had to say save the pity at least I can still crawl.  There are those that can not even do that.  Even though it may be hard to watch how I have to move DO NOT feel bad at least I am moving.  Have gratitude for that.   Now give me a wet rag I might as wash the floor why I am down here on the way to the bathroom.   ;)    I did have to reassure them I would call for help if I really needed it.    I am so glad it is no where near that bad any more.

Sometimes well meaning loving people need to learn how to step in and help.  And ok sometimes for me I have to learn how to let them.  Sometimes in someways it is even harder now that I am not so bad.  They have no outward signs to see the pain so can sometimes get irritated by what is going on. 

If I can't make a function or do something or go somewhere they want me to.  One time my son yelled at me saying I was using this as an excuse for not walking on the beach where they wanted to go.  Just because I didn't want to go that way.   No it's not that I didn't want to go that way it was more that the way they wanted to go did not have an easy exit for me to get back to the car if I needed to.    Later that day he saw hubby helping me to my feet again and handing me an ER cane we carry in the car.   Oh he felt so guilty for getting mad at me.   It's hard on them too. 

They have to understand that it is perfectly normal to get mad or irritated.  So don't feel guilty about it talk to me about it.  For me their guilt is the hardest to deal with.  I hate that they have to go through that.  Some times I think it would be better if I was just down then it would be easier for them to know what to do and how to help.  Even then over time the resentment would come back how can it not.  They would still feel bad.  So nope I just have to keep on keeping on.

 I have not had really really bad issues for a long long time.  So what ever I am doing must be working.  You just can't ever give up the day you do is the day your life is over.

Offline Dainty

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Re: Managing My Fibromyalgia Symptoms
« Reply #13 on: April 27, 2012, 01:12:19 PM »
I don't think anyone here is claiming that people suffering from Fibromyalgia symptoms are usually faking it, rather, it appears to me that the supposition made was that most "Fibro" cases are actually either different undiagnosed disorders or undiscovered injuries that doctors neglected to thoroughly investigate and instead ruled out either by assumption, ignorance, or laziness.

Everyone agrees (I think?) that Fibromyalgia is a diagnosis of exclusion and specific collection of symptoms. But when do you know you've excluded everything else? I was diagnosed with Fibro without examination, during the first visit to a doctor recommended to be knowledgeable on chronic conditions. The diagnosis was made solely on my report of symptoms and nothing else. I had already spent several years going to multiple doctors and having a myriad of tests done, and I suppose the doctor simply assumed everything else had been ruled out by then.

I later went on to see a rheumatologist highly recognized for his work in Fibro, in fact, he only sees Fibro patients, conducts major research on the subject and is a speaker at various events detailing the latest discoveries and theories with Fibro. He is very well known in his field.

This doctor did an extensive blood workup on me, but no other testing and to my knowledge never explored an alternative explanation for my pain. He did perform a cursory examination, which left me astounded at the degree of agony a well placed touch on my arm (for example) can put me in. The other day I was in need of comfort and since I hadn't encountered much touch for some time I thought it could be okay if my caregiver rested her hand on my upper back as I was emotional. Within 2 minutes the pain caused by the touch was too much, and even with her hand removed I continued to feel pain in that area for the next half hour. I know others who fit the diagnostic criteria for Fibro can relate to this, just mentioning it so that the uninitiated have an idea of the sort of thing we're talking about here.

Is there an alternative explanation to my pain other than Fibromyalgia? I don't know. It would certainly be preferable, but that's the least of my problems at the moment. What I do know is that there will always be another test to do, another avenue to explore, another doctor to say that such and such a test should be done over, or that there's more to do, but how far do you go before accepting a diagnosis of exclusion? How many doctors, how many battles with the insurance companies, how much money and energy and time to pour into it chasing an alternative diagnosis that could instead be put towards therapeutic management of the condition so that you can get on with your life as best you can?

Like others here, I've found a lot of lifestyle management strategies and alternative therapies that can help a bit, and with the bits all added up it can result in a fairly decent quality of life. The amount of difference it makes varies from person to person, of course. I'd find it tragic if so many patients and so many doctors are merely focusing on management of a condition that might actually be treatable if there is an undiagnosed underlying cause. But I also find it sad when patients get so caught up in hunting down an alternative diagnosis that in the process they sacrifice their chance to make the best of what life they do have. Coping well and being proactive about discovering and applying anything beneficial is commendable, and I appreciate everyone here posting about it. :)

Offline Orionblade

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Re: Managing My Fibromyalgia Symptoms
« Reply #14 on: April 27, 2012, 06:32:40 PM »
That's pretty much my point, Dainty - you have to be really careful with a diagnosis of Fibromyalgia, since if you've got something that IS diagnosable, but has been overlooked, fudged by an errant lab result, an out-of-calibration scan (Three local hospitals - two of them routinely produce fuzzy CT scans...*facepalm*) or any other errant diagnostic technique, then you'll wind up with a diagnosis of Fibromyalgia, and nobody will try and figure out what the underlying cause of your symptoms is.

Fibromyalgia is the only modern disease that I know of, certainly the only one I come into regular contact with (As a Patient Advocate and a Representative before the Social Security Administration, I run into a LOT of patients with ridiculously convoluted medical histories) that doesn't have a clear cause.

It's not a virus, it's not a bacterium, it's not any one single causative agent. It is, however, a collection of symptoms that remain remarkably similar across a ridiculously widespread population in terms of virtually any demographic you choose. This tells me, as a scientist, that the phenomenon of Fibromyalgia's diagnostic are a result of how the human body breaks when subjected to similar stressors, and not a result of a single causative disease. I really wish that Fibromyalgia had been called something else, like "Idontknowhwathtehellyouhavebutyouaresickosis". So then everyone would know that yes, I (or whomever is doing the treating/talking/opinionating) actually acknowledges that you, the patient, actually have something wrong with you, but we're not going to give it a specific name, because it's a dead-end diagnosis.

I'm going to further clarify - I'm not saying Fibromyalgia is a psychosomatic disorder. I am, however, going to reiterate that a TON (in my area) of patients are "diagnosed" with "Fibromyalgia" because they have a conversion disorder or other psychosomatic illness, and they're SO insistent that they've "actually got something wrong", that they need a physical diagnosis.

On the flip side, the medical community sees a diagnosis of Fibromyalgia and tends to say "oh jeez, another one of THEM... give her an antidepressant and send her on her way".

This seems to work (at least with the one counselor that's adept at picking out somatoform disorder, and treating it with ridiculously effective ACTUAL therapy sessions, biofeedback - he has a total Radio voice that his female patients seem to fawn over ever so slightly) but ONLY for the somatoform and conversion disorder patients. We still have a few Fibromyalgia patients who are not HLA-B27, Rheumatoid Arthritis, Lyme's Disease, Lupus, etc. etc. etc., and who are clearly not purely psychiatric. I refuse to accept that these patients should simply be lumped together under a broad-brush diagnosis if Fibromyalgia, and left to their own devices, or treated like they're simply nuts or faking it, and by the same token, there are too many diseases with virtually identical symptomatic presentation (just think of the thousands of strains of influenza that ALL cause fever, body ache, etc.) to lump everyone into even the same nonpsychiatric diagnosis.

That said, I have never met anyone with a chronic illness that did not have some level of depression. If I can tell you a joke and make you happy, or give you steroids and make you irritable, then I can break your body and put a hell of a dent in your mind, just as effectively as drugging you. The body's an interconnected system, and there has to be a holistic approach.

In essence I agree, you've got something wrong with you, but I think where we have our misunderstanding is this: It is my strong belief that for the medical establishment to call it Fibromyalgia is a disservice to your humanity. That is not to say you don't have what you've been told is Fibromyalgia, but the means by which the diagnostic criteria were developed are completely backwards. It's not that you're not sick, nor is it that you are simply off your rocker or faking it, it's that someone, somewhere, decided someone's case was too hard to crack, and cooked up a diagnostic term under which to lump all the symptoms, and when someone else presented, they were lumped under the same umbrella as well. That's simply not how scientific medicine should be practiced, and nobody with any illness should be made to feel that there's something wrong about them when there's clearly something wrong with their bodies.

Doc K seems to have his head on straight, and if the Paleo diet and exercise gives you positive results, then rock on, but I think SOMEONE needs to dump some of the money that winds up turning years of cardiovascular research into an erectile dysfunction drug into actually finding out what the hell y'all are actually infected with, or affected by. With the first 128 qbit supercomputer going to a Defense contractor, government-funded profiteering is the only reason we can't be running epigenomics programs left and right to mine the MOUNTAINS of data that are available to find at least a causative agent to virtually every human illness, if not a cure. Computational medicine can't arrive in full force fast enough, and I'll be the loudest voice at the FDA hearings pushing for trials with autoimmune diseases and whatever is actually behind this vile beast we are, for the moment, calling Fibromyalgia.

Until then, enjoy your dinners, and I hope you all feel like kicking some names and taking some asses this weekend. I have a chicken coop to polish off, and a lawn to mow, then till for a garden. Then I get to spend Monday preparing for a half dozen Social Security hearings... *pulls hair out*

Orion

 

Offline Orionblade

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Re: Managing My Fibromyalgia Symptoms
« Reply #15 on: April 27, 2012, 06:40:19 PM »
I will also say that while it is REAL, it should typically be a diagnosis of exclusion after a full diagnostic workup has been performed.  Just as Ceder reported, while I worked with a pain specialty group, I recall a number of patients who where labeled with "fibro" either of their own doing or due to improper workup/frustration from a previous provider.

OMG! Our HLA-B27 patient was diagnosed with fibromyalgia due to a google search. *facepalm*.

She walked into a primary care physician's office with a printout from the web, essentially said "I think I have this" and *poof*… it was her diagnosis for three years.

Walks into our office, we're reviewing her records, and here's this wonky lab result... sent her to a major medical institute nearby for follow up, and within a week or so had her diagnosis. Won her benefits, got her on some treatment, and now she's actually having a moderately normal quality of life.

Sometimes I HATE the internet... but when you're feeling isolated and alone, you gotta reach out somewhere, it'd just be nice if all primary care physicians knew the consequences of their actions - one word in one office note derailed her whole diagnostic path until she walked through our doors.

I think we can all understand a lot more about our own health if we were only provided with the info at a younger age. I've personally taught 6th graders basic calculus - there's no reason not to learn basic anatomy and physiology, or even a cursory pathophysiology course in high school. My high school "health" class? A joke. Knowledge saves lives, but misinformation can end them just the same.

Ok, NOW i'm going to dinner. *Waves*. Be well, all.
« Last Edit: May 01, 2013, 12:57:39 AM by Archer »

Offline Dainty

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Re: Managing My Fibromyalgia Symptoms
« Reply #16 on: April 28, 2012, 09:57:31 PM »
+1 Orion.

...nobody with any illness should be made to feel that there's something wrong about them when there's clearly something wrong with their bodies.

Well said.

Offline carolc

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Re: Managing My Fibromyalgia Symptoms
« Reply #17 on: May 04, 2012, 10:04:30 PM »
"Taking them is helping me, but that's why I wrote the title as I did. It's still preliminary; and I haven't taken them a month yet. I am hopeful they will make me feel better."
I recently have started two new herbal supplements, one specifically for my fibromyalgia, and one to help more restful sleep.  Earlier this evening, I wrote a new post about them for my blog, Fibrosurvivor.com.  I welcome any readers of my information there.

Offline tedrashwin

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Re: Managing My Fibromyalgia Symptoms
« Reply #18 on: August 08, 2012, 02:02:26 AM »
Two of my close friends was exactly this.

My friend "C" was diagnosed "finally" after years of going to a doctor complaining that something wrong with her. The diagnosis was "Fibromyalgia". FIFTEEN YEARS later, she was finally diagnosed with the correct reason she had been so weirdly ill. Multiple  sclerosis. Finally someone did a Lumbar puncture (spinal tap) for cerebrospinal fluid tests, including CSF oligoclonal banding and a MRI scan of the brain and MRI scan of the spine to diagnose her. When she had the "Fibromyalgia" diagnosis all they did was a CBC bloodtest and a urine test.

My friend "T" that I used to work with at the vet clinic.. after years of finally getting the diagnosis of "fibromyalgia", ended up in reality she had Lupus.

And my other friend "B" just got diagnosed with 2 months ago with "fibromyalgia" after having severe body aches for the last 2 years. Bet you it isn't.

Cedar
Have you heard of stem cell for MS treatment?

Offline DocRokRx

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Re: Managing My Fibromyalgia Symptoms
« Reply #19 on: August 08, 2012, 03:08:17 AM »
oops, double post

Offline DocRokRx

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Re: Managing My Fibromyalgia Symptoms
« Reply #20 on: August 08, 2012, 03:09:11 AM »
I'd like to reiterate about the Paleo and exercise and other non drug self treatment... If its working for you keep it up!
But heres some information on guaifenisen for those that are interested-

--How it works (for congestion)- irritate mucous membranes--> increase secretion of water into the mucous
--Side effects- Rash, nausea/vomiting, dizziness, headaches
--Possible Severe Adverse Effects- KIDNEY STONES documented in patients taking excessive doses(drink extra water to mitigate risk)
--Teratogenicity- US rank--> C, Australian rank --> A (you can look these up
--Breastfeeding - completely unknown effects
--NO known interactions with other medicines or food
--Toxicity- pretty much harmless (tested on animals, no toxicity up to 5grams/kg body weight)

Well, there ya go- hope that helps you arm up your knowlege armory!

Also- acupuncture is used in many pain clinics, especially for fibro and neuropathic pain syndromes