Hello. My physician husband recently attended a lecture on fibromyalgia. I have invited him to use my blog as a forum to express his impressions. The vast body of information provided could not fit into 1 blog, so consider this as Part 1 of a continuing series on fibromyalgia:
I have observed doctors arguing over the existence of fibromyalgia since I was a medical student 30 years ago. As mood problems were commonly associated with the condition, many felt it was simply depression causing the symptoms. The lack of any confirmatory lab test was used as evidence that FM did not exist. However, there are many conditions which do not have a blood test to confirm the diagnosis. An example would be schizophrenia. There are diagnostic criteria used to decide if a patient has schizophrenia just like there are for diagnosing FM. Like FM there is no blood test to confirm the presence of schizophrenia, however, few doubt its existence. Perhaps it's because observers can see and hear differences in the way schizophrenics talk and act from others whereas patients with FM look the same as everyone else. Why does FM get such a bad rap? Perhaps it’s bad marketing?
I am in the unique situation of being a physician whose wife has fibromyalgia. Since her diagnosis 4 years ago, I have been more alert to the arguments over fibromyalgia. I am seeing a steady increase in acceptance by physicians of the condition. However, as recently as last year I attended a conference on Pain and Addiction in which an arthritis specialist who worked at a pain clinic told the audience he did not think that FM was real. Part of the problem is that specialists only see the worst cases and they see the cases that are least likely to be improved by any therapy. One review showed that almost no patients were improved by treatment offered by specialists, whereas family doctors had a 25-30 % response to treatment. It is usually specialists that teach family doctors at lectures - if specialists have no success in treating the condition they may promote an ongoing negative view of the condition. Specialists may be the cause of the bad marketing alluded to in the previous paragraph. At lectures on fibromyalgia that I attend, it is often the older doctors who argue that FM is simply in the patient’s head and is due to depression. Younger physicians (like myself – age 55) seem much more willing to accept that FM is real.
At a recent review on fibromyalgia I attended, the lecturer argued that the existence of fibromyalgia should no longer be doubted. Research now shows marked differences between FM patients compared to 'normals.' Spinal fluid analysis shows much higher levels of substance P (a protein associated with pain) in those suffering FM. Endorphin levels are higher in FM patients but their narcotic receptors are blocked so they do not benefit from the endorphins. In the past, static brain scans showed no difference between FM sufferers and normals in response to a painful stimulus. However, on functional scans where brain activity was recorded over time, FM sufferers were shown to have 6-8 times more activity to a painful stimulus. The brain cortex appears to light up in FM sufferers in response to pain. There is still no simple blood test to diagnose FM. However, there is clear evidence that FM can now be differentiated from other conditions in the research lab.
Research shows that in FMS, pain signals going up the spinal cord are magnified at 2 levels in the spinal cord. As a result, the pain signals that reach the brain are much more intense. The brain also has pathways that send signals down to the spinal cord to dampen down pain signal activity. These descending pathways act as a brake to reduce pain information going to the brain. This was described years ago and was called the Gate Theory of Pain. If the gate was fully open, then all the pain impulses were transmitted up the spinal cord. If the gate was closed, then less pain information was sent up to the brain. In fibromyalgia, there is very little braking occurring so the gate stays wide open. A painful stimulus such as a needle poke to the finger can cause increased brain activity in both normals and FM sufferers for up to 36 hours. In normals, the braking mechanism causes the perception of pain to settle down in a few minutes by closing the gate on pain impulses up the spinal cord. In people with FMS, the gates do not get closed so the pain can continue to be felt for the entire 36 hours.
In fibromyalgia, the pain signal is amplified and additionally the signals do not get reduced due to a lack of a brake. It is no wonder that people with fibro suffer pain. Research shows that there are biological markers for FM so in time there should be fewer medical skeptics. Even more exciting is the hope that research will identify areas to focus treatments for FM. Already there are drugs that can reduce the amplification of the pain signal in the spinal cord. Other drugs can improve the brake to reduce the pain signal. Narcotic receptors are blocked in FM so research to focus on how to unblock the narcotic receptors may prove useful in treatment.
Thanks for reading.
Great info - who is the doctor?
ReplyDeleteYou will definately be added to Fibro Bloggers Directory
Great!! The doctor is my husband and we're located in British Columbia, Canada. There will be more of his insider (!) information blogs to follow at a later date. In the meantime, you'll have to be content with my blog! lol
ReplyDeleteThanks for your feedback.
Hi Cathy, Thank you for writing about all the current research and findings in regards to fibromyalgia. It does such a service to those who have not had access to the information and also is positive to hear. No, it is not all in our heads. How wonderful for you to have such a wonderful, caring, and supporting partner in your life. =)
ReplyDeleteBest Wishes to you as always,
Deb
Thanks Deborah. I know I am truly blessed to have my husband in my life. I am so pleased that now we can both reach out (in blog form) to help many more people.
ReplyDeleteCathy
Thankyou to you both!!! If there is any hope of future research then thinking along these lines is the place to start... Now if we can only get a grant of some kind...
ReplyDeleteLet's put the FUN in FUND RAISER for Fibromyalgia Awareness. Thanks for your comments, Melissa.
ReplyDeleteI saw a link for your blog on FB, Fibromyalgia Support Group by Aimee, which I'm a member of. My name is Kiera, and I thank you Cathy, for posting this, & please thank your husband. For years, I was told I was insane, crazy, lazy, useless, *insert any derogatory adjective here*. I was finally diagnosed with fibromyalgia 4 years ago; I remember the relief I felt, just to have a name for whatever this was that was robbing me of living my best life.
ReplyDeleteThere are many doctors that don't believe it's real; I wish we could inject them with it for 24 hours to let them see what it's like; I'm sure they'd change their tune!
From one Fibromite, to another, I send to you soft hugs, & understanding!
Thank you, Kiera, for such a lovely comment. I posted a (radio)link on my profile regarding the very little respect that fibromyalgia and its sufferers receive from the medical community, and sadly, our own family members and friends. We've a long way to go until it is accepted as a legitimate illness, although the tide is slowly turning.
ReplyDeleteSoft hugs to you too and thanks for posting.
I have had Fibromyalgia, for 17 years and you are telling me MD's have better results helping people with FM...I am sorry doctor I do not agree with that assumption. I went from MD to MD to any kind of doctor you could name...all they said was it is all in your head...bull!!! Now 18 months ago I found two doctors, One a Fibromyalgia researcher the other the doctor treats the patients....The fist day I went to see DR Wood, I was set free...He actually listened to me..and believed me..how novel...I am one of those that had the neck issue that can cause terrible pain...6 weeks ago I had spinal surgery, it is a difficult one but I did it...and you know what...my pain is GONE!!. Now I realize thie surgery is only for SOME people. There are certain peramiters..I had them...I am still healing...Well look at that it is fairly new research...but every woman wit my kind of injured neck that has had the surgery..improved greatly..I am sorry when I hear someone tell me how wonderful MD"s are helping patients with FM..I just don't believe that it is true..I am living proof...Go see a Fibro Spec..he will actually listen to you...how novel...Now remember I said SOME people...what they do is give you an MRI..and look at your neck..you would have to find a doctor that would know about it and do it..One in Renton WA.. Dr Patrick Wood..he is across from Valley General Hospital..just go see him once or twice and see if I say isn't true..I am not getting any money for this..I just understand what you are all suffering and want you to get better..I bless you with courage and peace..Rita Cornish
ReplyDeleteHi. can you post the links for the articles you mention? thanks
ReplyDelete"There are diagnostic criteria used to decide if a patient has schizophrenia just like there are for diagnosing FM. Like FM there is no blood test to confirm the presence of schizophrenia, however, few doubt its existence.."
ReplyDeleteThis makes it sound like FMS is a mental disease because schizophrenia, like all other mental illnesses, have no physical manifestations, so does this mean FMS is also a mental illness?
Personally, if it was called a mental illness and I could get better by going to a mental hospital, so what? If that's what it would take to get better, so be it. Many of us (me included) have had long and painful recurrent depression. What if it IS related? If it means that we can get relief...call it anything!
This statement can do more harm than good.