The Perception of Pain: Understanding Fibromyalgia

lrifkin's picture

Lea Rifkin
Biology 202
Professor Grobstein
Spring 2007
Web Paper 3

The Perception of Pain:
Understanding Fibromyalgia

Similar to beauty, which has been said to be in the eye of the beholder, perhaps ironically pain is in the perception of the victim. Thus, throughout history, the victims, or patients, or clients, or invalids, or individuals experiencing pain have often also encountered difficulty communicating their pain to the medical community.

The case of Fibromyalgia, or Fibromyalgia syndrome (FMS), has been no exception. Although historians have noted that symptoms of Fibromyalgia have been documented as far back as biblical times, when Job complained of restless nights and tender joints, the medical community at that time had no name for his pain (1). The same holds true for Frida Kahlo, who is now thought to have suffered from posttraumatic Fibromyalgia (2). This diagnosis may explain Frida's poor response to the multiple treatments she received both in Mexico and in the United States of America (2).

Today, Fibromyalgia remains somewhat of a mystery. As recently as 1904, Sir William Gowers first coined the term fibrosis. The word, a compound of fiber and inflammation, was meant to describe the sore spots on patients with muscular rheumatism. However, later, when no evidence of inflammation could be found, the medical community reconsidered the validity of the terminology that had been used (3). Thus, while conducting studies on sleep, tender points, and widespread pain (4), medical community introduced the term Fibromyalgia in 1976. This new compound word combined fiber, muscle, and pain to more clearly define the condition at hand (3). However, it was not until 1990 that the American College of Rheumatology published the first criteria on Fibromyalgia (4).

Yet, despite advances in understanding and classifying Fibromyalgia, diagnosing and treating patients in pain remained and continues to remain a difficult task. Fibromyalgia is a chronic disorder that affects approximately three to six million Americans. A majority of individuals affected by Fibromyalgia are women of childbearing age, however, it does also appear in children, the elderly, and men. The cause of Fibromyalgia remains unknown (5). However, researchers have multiple theories as to how certain individuals end up with this type of pain. These hypotheses include genetics, injury or trauma, changes in muscle metabolism, and viral triggers (5). Widespread musculoskeletal pain, fatigue, soft tissue tenderness, sleep disturbances, and multiple tender points distinguish Fibromyalgia (5, 6). Tender points have been classified to refer to tenderness that occurs in precise, localized areas of the body. These areas include the neck, spine, shoulders, and hips, and are highlighted on the chart in the following link (7).

Diagnosing Fibromyalgia is also a difficult process, as there remains no laboratory test for determining whether or not a patient has the syndrome. Instead, doctors must listen to patient histories and self-reported symptoms. Doctors must also conduct a physical and manual tender point examination. The tender point examination is based on the criteria set forth by the American College of Rheumatology. In order to be diagnosed with Fibromyalgia patients must experience both “widespread pain in all four quadrants of the body for a minimum duration of three months” and “tenderness or pain in at least 11 of the 18 specified tender points when pressure is applied (6)” (see figure in the following link) (7).

Unfortunately, it is often extremely difficult for many patients to receive a proper diagnosis. This is because many doctors know little about Fibromyalgia, and because the medical community as a whole still has a lot to learn about the syndrome (6). This also is caused by the fact that many symptoms of Fibromyalgia overlap with symptoms of other conditions. Thus, while patients can have more than one aliment, Fibromyalgia often goes un or misdiagnosed (6).

In both my research for this paper and personal experience with a brother who was diagnosed with Psoriasis, Vitiligo, Psoriatic Arthritis, and Fibromyalgia early in his childhood I have found the connection between Fibromyalgia and other conditions to be extremely interesting. A diagnosis of Fibromyalgia does not exclude the possibility for other diagnoses, just as other conditions do not rule out the possibility of Fibromyalgia. Often, in fact, it has been found that there are many conditions that often overlap with Fibromyalgia. These conditions include various forms of arthritis, lupus, chronic fatigue syndrome, migraine headaches, and a variety of autoimmune disorders.

Fibromyalgia is unique because it affects the central nervous system. Individuals with Fibromyalgia experience an abnormal amplification of pain due to atypical sensory processing in the central nervous system. Imbalances of chemicals and hormones in the brain confuse sensory messages thus causing pain information to be intensified. Essentially, the neurons of Fibromyalgia patients experience difficulty regulating pain and thus magnify it in error (6). Fibromyalgia suffers describe the pressure of a watch or necklace feeling like a “blowtorch” (8). However, the pain they experience may have nothing to do with the periphery. In other words, the watch or necklace does not actually have the pressure of a blowtorch, but rather that pain is misjudged internally. FMS patients would feel pain with or without input from an outside source, such as a necklace.

If individuals suffering from both Fibromyalgia and other related ailments experience pain both from the central nervous system and from the periphery, pain must be treated in multiple ways. It is often difficult for those who suffer from Fibromyalgia and other associated conditions to discern one type of pain from another (9). Thus, in my experience, holistic measures often best treat all of the symptoms of Fibromyalgia. After visiting the best specialists in the juvenile form of each of my brother's conditions, faithfully following their programs, attending group information sessions, and researching tirelessly, my brother's pain decreased only slightly, on a “good” day. Thus, my parents turned to a more holistic approach. My brother began receiving weekly massages, using hot wax tubs to soak his joints, working out with a specialist, sleeping on a specifically designed mattress, seeing a nutritionist, and following a holistic doctors plan. Although it took time to see results, slowly my brother began to find nights where he could sleep again, and to find days where he was not in excruciating pain.

Fibromyalgia pain is real. From the personal experience of looking into my brother's teary eyes while he promised that he was fine as my parents asked how he was feeling for the fifteenth time on any given “bad” morning, I can vouch for the fact that what he felt existed. Until recently however, it has been difficult to quantify that pain. In 2003, Dr. Daniel Clauw, a rheumatologist and professor of medicine at the University of Michigan utilized functional MRI scans in order to concretely prove that the pain of Fibromyalgia is genuine. In his study, Dr. Clauw worked with 16 suffers and 16 non-suffers. He placed slight pressure on each of their left thumbs and scanned their brains. Whereas the non-suffers showed little to no response, blood rushed to the pain perception area of the Fibromyalgia patient's brains. In general the medical community has come to accept Fibromyalgia (8). While this signifies a far leap from the days of Frida Kahlo, and even signifies progress from as recently as 1977, when researchers were warned that studying Fibromyalgia was a waste of time as the women complaining of the ailment were “crazy” (8), much more work needs to be done. In the future more research must be conducted in order to understand how individuals with Fibromyalgia perceive pain, and how to best treat pain that is amplified from within.

Sources

1. http://chronicfatigue.about.com/od/fibromyalgia/p/historyfm.htm
2. http://www3.interscience.wiley.com/cgi-bin/fulltext/78503239/PDFSTART
3. http://www.lclark.edu/~sherrons/history.htm
4. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=15361321&dopt=Abstract
5. http://www.immunesupport.com/fibromyalgia-understanding.htm
6. http://www.fmaware.org/fminfo/brochure.htm#whatIsFibromyalgia
7. http://www.immunesupport.com/fibromyalgia-tenderpoints.htm
8. http://www.fmaware.org/fminfo/newsweekarticle.htm
9. Interview with Ryan Rifkin. May 6, 2007.

Comments

Harriet's picture

Recently diagnosed

Hi I began to get sick about 10 years ago and went to doctor after doctor after doctor. They would all look at me with that weary, irritated look as I begged them to tell me how to feel better. Prozac or SSRI was a common drug they tried to push on me. The symptoms came and went 'randomly' ... Or so I thought. Then 1 year ago I got so ill ... I woke up every morning at 3 am feeling like my whole body was on fire and couldn't get back to sleep. I would struggle to work and spend my days wishing I was dead and often contemplating how to end my life in the best way so no one knew it was a suicide. I would walk out of my office in do my pain and so exhausted all I could do was hail a cab. I would fall into bed and order a take away on my mobile ... My work was highly stressful so I would often work evenings and weekends from bed. It got so bad I eventually collapsed and went to hospital. I was diagnosed with fibromyalgia 6 months ago and now some people are able to help me manage. My boss is lovely and I am registered disabled and I get better work environment without florescent lights and can work from home on my really bad days. I found I can manage better but there are still days I can't stand to be alive. Most people don't understand and think I'm putting it on ... Like my family and flat mates. That's the worst thing about it ... They say 'its all in your mind'. It isn't. It is a crippling, torturous disease. More awareness needs to be made on this illness.

Serendip Visitor's picture

Fibro and Altitude

Hello fellow sufferers. I was diagnosed 2 years ago w/ FMS, but I believe I've been living with it since I was struck by lightning 20 years ago. I just attributed the aches and pains to getting older, until the winter 2 years ago when the pain and insomnia became unbearable.

I live in central Illinois (610 ft elevation), known for its tornado alley, blasted cold winters and hot, humid summers. Extremes of weather that I just can't handle.

This past winter, with 4 or 5 Polar Vortexes roaring through here like a freight train from Hades, nearly killed me. I decided if I survived, I'd go somewhere nice for a vacation.

I just spent two pain-free weeks in beautiful Taos, NM (elevation: 6,969 feet). I was so worried when I booked my rental that the high elevation might be bad for me. Was I ever in for a wonderful surprise! The climate in April was chilly mornings, quickly warming to around 65 or 70 degrees F in the afternoon. Often there were rain showers that blew through, snowfall that melted quickly, plenty windy, often misty from low-hanging clouds. But I never felt better in 20 years!

I was just fine until I got back home, a week ago. I've been in a fibro flare ever since. I can just feel the heaviness all around me. I CANNOT go through another winter here, but what am I supposed to do? Divorce my good husband of 30 years and become a homeless person in Taos? We sure can't afford to move there to finish out our lives.

One tip I want to suggest to my fellow FMS folks is: GET PLENTY OF REST, wherever you live! Restorative (REM) sleep is vital to everyone, but especially those with FMS! People don't realize this! I went 5 weeks sleep-deprived this winter and was considering... well, you know....until we found the right sleep-med combo for me: Xanax in the early evening to settle me down, followed by a strict bedtime (lights out at 9 p.m.) with a dose each of Temazepam and Melatonin. (I've found, for me anyway, that those three fibro drugs out there are a waste of money, with the exact same side affects as the symptoms of the disorder!)

Good sleep has made a world of difference for me, but I still battle those constant wild weather fronts that plague this part of the country.

Hope this helps. I've been researching this **** ever since I was diagnosed 2 years ago. I'm afraid I'm going to lose the will to live, cos this ain't living!

Serendip Visitor's picture

fibromyalgia & climate

I have fibromyalgia and Sjogren's syndrome. I live in NW Pa, where winters are cold and damp and summers are warm and humid. I just returned yesterday from a week in Idaho Falls, Id., where the weather was sunny with low humidity. I never felt better, except for the time I spent in Las Vegas a few years ago.

Today, I woke up in so much pain I could barely get out of bed. Today is humid with thunderstorms predicted. I truly believe climate affects my symptoms. The way I feel today is how I normally feel living here. Mild, sunny days with low humidity are the only days I feel decent.

You have presented a concise, informative paper and I commend you for it! Thanks!

Victoria Turner's picture

Fibro and Nevada

I have had Fibo and CFIDS for over 30 years. It was after a trip to Nassau. It's not bettter in the Bahamas. Well nowI live in Chicago and we are have a family office in Incline Village, NV 8000 ft up. It always takes me a few weeks to get used to the air and stairs for this house is much larger than our home. This trip is for 3 months and I have been so sick with migraines, terrible muscle pains, dizziness.,back pain and every fiber on my scalp and face hurts. You get the picture. So my Husband suggested I go to his chiropracter and he couldn't believe how stressed my body was and he did an adjustment on me. They could hear me scream however. he said it was a lack of oxygen to the muscles that makes the Fibro worse.He said his own Mother who is not sick won't come to visit him she can't walk a street here. His suggestions walk more and I'm thinking I can't breathe he also suggested that water resistance like swimming is good. Well...I asked him what do you do if your spouse wants to move to NV forever? He answered this is hard living for healthy people. So yes altitude has affected me and I am trying to go with this advice but bottom line is it is a high price to pay for someone who has FIBRO. You are told to try oxygen therapy or go into a hyperbaric chamber. How about going back to Chicago? Thanks for your time. (sorry for typos the eyes are affected as well)

Serendip Visitor's picture

Fibromyalgia and Altitude

I live in AZ and was diagnosed with Fibromyalgia back in Oct 2009. I recently came back from both a trip to San Diego, CA and Atlanta, GA. After arriving in both of these places, I found I no longer needed my medication. I also felt amazing! Correlation, I think not. There must be something to living at a lower altitude that affects the muscles, joints! Granted, I still felt some pain, but overall, I'll take that rather than the consistent achy feeling!

Anonymous's picture

Have you experienced Extreme High Altitude Sickness/ FMS

I recently went to Mexico where the altitude was 6000 ft. I live where the altitude is only 250 ft.
I have FMS but never dreamed for a moment that altitudes would affect me, as I have been in them many times before I developed FMS ( from a physical trauma )
I was so ill that I was put in the hospital and told to go home asap. I was too sick to get out of bed for 14 days to fly home.
The doctors were concerned that I might end up with Kidney failure from severe dehydration
Once I was able to fly back home..I stabilized after a month.
My doctors here think that the FMS and the Extreme High Altitude Sickness MAY be linked...But they have do not personally know of another case.
Has anyone here suffered the same frightening thing?

jlew's picture

Altitude Sickness

I think you are definitely on to something. I got married in July 2000, we honeymooned in Hawaii, and on the way home I became extremely ill on the plane. The flight attendants assumed I was hungover at first & didn't pay much attention to me, but within a few minutes I was sweating, shaking, and pale as a ghost. They asked me if it was my first time flying; well my mom worked for an airline when I was growing up so I had literally grown up flying. I told them I'd flown hundreds of times and then I started having a hard time breathing & became disoriented. I think they finally believed me when they started asking my husband if they should ask the pilot to request permission for an emergency landing. Anyway, when we finally got home I stayed in bed for the next 2 weeks. Everyone said I was just really jet-lagged but I knew that a 25 year old who just got married shouldn't be jet-lagged for 2 weeks! Well, after a year of feeling like I had the flu, I finally found a doctor (a D.O.) who was able to give me a name for what was wrong with me. He told me I had CFS. It took over 9 months of alternative treatment and several thousands of dollars but I finally started feeling better.

I was mostly symptom free for almost 6 years then like a ton of bricks I got sick again. Now for the past 2 years I've have been devastated by fibromyalgia & the last 3 months I've been in the worst pain of my life. I have almost every symptom of FMS including migraines, nausea, intense burning in my muscles, stiffness, brain fog, dry scaly skin, and even changes in my vision. My miracle doctor got run out of town (as anyone selling a "miracle cure" might) and I am not married anymore & cannot afford anything more than just a once a month trip to my family doctor for him to refill my Vicodin, Ambien, and Adderall. I am on the patient assistance programs for Lyrica, Celebrex, and Savella and have been taking them for over 6 months. I haven't noticed much improvement with any of them. I have always felt certain that my experience on the airplane had something to do with my illness but have not seen any other mention of it anywhere else. Please let your doctor know that there is at least one other person out there with this experience & keep me posted if you learn of others. Good luck to you & blessed be.

Cat's picture

I too have had this very same

I too have had this very same experince I was so happy to see I'm not the only one. I have been diagnosed with fibro and everything ses to get me even a heavy storm I can't breathe and it's like being on the plane again and I think pressure has alot to do with it. Thankyou so much for your post.

Cat

admin's picture

more papers on fibromyalgia

There are more student papers on fibromyalgia on Serendip: Serendip papers Good luck to you.
Dawn's picture

THANK YOU

With your wonderfully researched article, I can finally share something with friends and family to hopefully help them understand about fibromyalgia.

I have only been diagnosed with FMS within the last year. It wasn't until I was debilitated that the diagosis was found for just such reasons as you listed... multiple conditions. From looking through my medical history, the doctors figure I have been suffering with FMS since the late 90's but due to the alphabet soup that surrounds my conditions it was overlooked. Sometimes I have felt so alone with this condition. Reading your article and some of the posts, it gives me hope that more research will be successful and one day no one will need to suffer with FMS. Thank you again.

Alisa's picture

RE: Fibro & Climate

Hope this isn't too late of a reply. I am from rainy, humid, overcast Seattle and moved to the desert (Palm Springs, CA area & now Las Vegas) about a year after I got slammed with Fibromyalgia at 27. I've been in the desert for 7 years now and don't dare venture out. I've also noticed high altitudes bother me-I think it's due to the pressure.
In all honesty, I lost my career and can't work anymore (was part-time for a few years) and had to quit grad school when I got sick, but I can do little things like errands most days. I don't want to make the S.W. sound like paradise or anything. However, I have very severe Fibro so I'm not "the norm" and am just waiting for science to catch up to me at this point. It might make a big difference for someone with mild fibromyalgia, who knows?
Anyway, when a storm does make it over the mountains here, I feel it before I get out of bed and can't get out of the house until it passes. So, humidity is BAD and low pressure is the WORST. Dry, warm climates are the BEST for those with Fibromyalgia and I've heard this from every specialist I've seen. Just be prepared for hot summers and the monsoon, which is no fun. The monsoon comes up from the south in late summer and is not for those with Fibro.
As for areas in the U.S., I would think of the California desert, S. Nevada, or S. Arizona. Vegas has the coldest (still dry) winters, the southern desert cities have the longest, hottest summers (Phoenix is the worst), and Arizona in general gets the worst of the monsoon (it gets worse as you move east). I've toured all of these places personally, I promise! Hope that helps. I guess I wrote my own disertation here-see above about inability to finish grad school. Best of luck on getting your pain down.
Ms. Rifkin: Very well written, informative paper on Fibromyalgia. Thank you! I was only looking for the Frida Kahlo connection for a friend. Amazing you stumbled on it in your research.

Kiwi's picture

Thank you!

I am a student and have been researching Fibromyalgia for a couple of weeks now. I can honesty say your "web paper" is the most concise, yet informative source I have found on the internet.

DER's picture

Comments on your work

Your work here is excellent. The research and documentation is superb and presented in a clear and informative fashion. I would like to read more.

Anonymous's picture

Does climate affect Fibromyalgia?

I have Fibromyalgia and don't find much on climate as it affects Fibromyalgia. Have you discovered any information on what parts of the US (in relation to climate) is best for someone suffering from Fibromyalgia? I can no longer work and only 45 years old. My family would move to a different region if we knew a certain climate might help. Thanks.

Dale Wilson's picture

Fibro and climate

Sorry, I am looking for the same info you are.

I have found studies that do link fibro and climate. Argentina and Norway.

Changes in weather, cold, and humidity, seem bad.

But that doesn't say much about anything being too hot.

Let me know if anyone tells you anything.

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