Fibromyalgia and the attempt to force it into a ‘disease’ category

” Things are going to get a lot worse before they get worse” , Lily Tomlin

I am weary. Try as much as I can, I cannot find many fibromyalgia researchers who are willing to stop this endless search for a medical cause of fibromyalgia! So many seem keen on trying to force the Cinderella slipper on the wrong foot! WHY IS THIS? It can’t be for research grants to enhance careers, but can it be that there is a naive hope of finding a ‘cure’. But, wait, I don’t mean to imply that all the researchers are cold hearted and don’t want to find a ‘cure’! Of course they do, who wouldn’t? But how about the ’cause’ question? Back and forth we go between cause and cure.

The pharmaceutical companies, for example, could not possibly want a social cause to be found or they might not be able to access the market profitably. But as a vaccine for a disease entity, that cure might make profits rise. Doctors would love findings that suggest there is a vaccine, or a  medication to cure that would help them treat their patients more effectively. Nothing would make we sufferers happier than finding a medical cause that could be treated with a drug! So, why isn’t it happening?

Even more disturbing are the ‘alternative’ or ‘complementary’ causes (too much of this or that in our systems) and we need to either flush out our systems of toxicity or we need to buy their cures ( add some concoction to our daily diets). We search endlessly for those who suggest there is a cure and spend many dollars following their advice. As Shermer has written” …I have noticed about extraordinary claims and New Age beliefs that they tend to attract people on the fringes of academia-people without formal scientific training, credentialed (if at all) by nonaccredited schools, lacking research data to support their claims, and excessively boastful about what their particular elixir can accomplish” (p.15.Why People Believe Weird Things).

Back to my ‘same old/same old’ argument. In my view fibromyalgia is caused by a hyperaroused nervous system in highly sensitive people (primarily women) who, because of the roles they are assigned in society are the caregivers, the highly empathetic, overly concerned for others, highly intuitive people who are always ‘on duty’ and cannot ever ‘let go’ of this hypervigilance. Who loses if we adopt this approach to fibromyalgia? Certainly the researchers who want to find a medical cause, because if we begin looking to the ways in which society is constructed and disadvantages women (and men and children who are overly sensitive), then the cause is too overwhelming. BUT, there arethose who could focus on helping us. The psychoneurologists! But, then the disease  would have to come out of the hands of the rheumatologists (who might, by the way, be happy about this). We cannot change society very rapidly but we can begin to understand it more fully and the damage that has been done to our nervous systems over many years.

Yes, we suffer at loud noises, overly bright lights, strong wind, heavy smells, crowded noisy places and so on and so on. WE ARE HIGHLY SENSITIVE PEOPLE! We start out being sensitive to other people’s emotions, vibes in a room of people, then we become sensitive to touch, to other stimuli in the environment, to  sounds, hearing ( See Sue Cartledge as one of my links and her June 8th blog), heat and cold, weather conditions to air quality, toxic substances and so on and so on.

It is the role of psychoneurologists to discern the potential or real trauma that could or has occurred in the early childhood development of the nervous system, particularly in the right hemisphere of the brain which affects arousal.  The right hemisphere is responsible for empathy, intense emotions, deep attachments in relationships, to name a few of its functions. When we begin to be over-aroused in childhood (Or we are born that way? Again the nature/nuture question) and we are subjected to a trauma either physical or emotional it appears to set off the fibromyalgia. In my view, the psychoneurologists who deal with the nervous system are the people we want on our search for cause AND cure! (more of this is to be found in my book!). There are other pain experts who also have tremendous understanding of the nervous system and are highly qualified to work with us and the relationships between our over stimulated nervous systems and pain (See for example, the information available on three of my site links…One to One Wellness Centre , explain pain and Diane Jacobs PT)

Sigh! Sometimes I think maybe, just maybethere is a medical cause for fibromyalgia and I am just a lone voice crying in the wilderness.  Nothing is more exasperating than someone who has blinkers on and can’t see another’s perspective. But, in my 40+ years of living with fibromyalgia I know intuitively that just isn’t so! In the meantime nothing very much has happened… wheels seem to be spinning endlessly.

I am so weary.

11 thoughts on “Fibromyalgia and the attempt to force it into a ‘disease’ category

  1. Rowena Hurst

    Having done a lot of research for my own Fibromyalgia I have come to this conclusion about the cause. I am exactly what you describe.

  2. Lynn Woodson

    I had multiple, tho somewhat minor physical and emotional traumas before age 13. I started having vaso-vagal syncope at this time, not knowing that each time I lost conciousness my heart rate was dropping dangerously low, sometimes in the teens. I also started suffering from chronic fatigue, muscle aches and gastric trouble. But at age 29 I almost died because my pain center failed to kick in when I was having an ectopic pregnancy. While I continued to develop strange, non-provable ailments, I had a kidney stone that after 2 weeks took me to the ER. The ER physician said I couldn’t possibly be having a Kidney stone because I wasn’t writhing in pain enough. I had to force him to do a scan that revealed I had a kidney stone. I got fired from my job for sleeping while on duty despite being on 3 medications designed to keep me alert. As an RN, imagine my shame and subsequent despair. I have COPD and the only Doc that will say I am disabled is my lung doctor. However, there is a test that can be done for that disease and I was denied benifits because the test show moderate disease. Why is it my pain center varies in how it depicts pain? And why can’t I find a doctor that understands that when you hurt every day, you are exhausted when you wake up, you may or may not remember conversations held yesterday, and you will fall asleep when you read, write, or do data entry you will fall asleep, then you are not employable or insurable? And depression results form loss of function, not the other way around. I say, I would be nuts if I weren’t depressed especially now that I am faced with losing my home due to lack of income.

  3. Barbara Keddy Post author

    Dear Lynn: Yours is a very sad story indeed. Have you been ‘officially’ diagnosed with Chronic Fatigue and/or Fibromyalgia? It certainly would not be a shock if you had CFS/FMS after all your horrific health problems. The pain, fatigue, brain fog and depression are enough to deal with, let alone COPD. It is unlikely that Fibromyalgia caused any of your actual physical diseases but rather probable it is the other way around, that is, CFS and FMS are the result of the other issues. It is so often difficult finding a physician who can put all of this kind of history together to help with treatment plans but I hope you will be able to do so soon as I can see you are in great need of support. I wish you very best wishes, Barbara

  4. Paulette Parkes

    I agree with all above comments. So, what are we to do? I feel so frustratedbecause in my case I think I’ve found the cause altho there are so many of them. Being an animal lover and I am (SO SENSITIVE) if I see any cruelty towards them that I cannot even allow myself to watch any TV program which depicts any of that.

    For. ex. tomorrow night there is a program about gorillas being murdered in a park in Kenya. I cannot watch
    it because just thinking about it sets off a series of my symptoms. These will include crying, pains, sadness that may last for long period of time. Maybe forever. Is this a way to live?

    Yes we know plenty of the causes but where is the cure? Best to all of you, who also suffer. Paulette

  5. barbara keddy

    I wish I had answers Paulette. I can only suggest any kind of relaxation exercises along with gentle physical movement and support systems of caring people. It isn’t easy. We can all relate to your pain.
    Kind regards,

  6. dana cannetti

    dear paulette,
    after reading your comments about your extreme sensitivity to the pain and suffering of animals, i cried for an hour. i , too , feel this way. my husband thinks i’ve lost my mind and yet i can NOT see nor hear anything about animal suffering / cruelty for fear of endless sleepless nights and mental anguish. thanks for relating. i have been diagnosed w/ CFS and fibro for about 3 yrs. now. have had 3 back surgeries in the past 1 1/2 years. still recovering from all of that. just wanted to say it helps alot to read comments from other sufferers. thanks. dana

  7. paulette parkes

    dear dana, I had no idea there were answers and comments to mine. Once more I am so delighted to know there are others like me who cannot bear to see suffering animals. I guess we have to live with it. all the best from Paulette

  8. Barbara Keddy Post author

    Paulette, we are all so sensitive to emotional angst and suffering of others with our heightened empathy that any living creature who is in pain feels like our own. It is almost impossible to not feel the suffering of others since we are highly sensitive persons. But there are strategies and we must align ourselves with others who also are HSPs! Good to hear from you again! Barbara

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