Researchers Document Severity of Fibromyalgia
You look just fine and nothing is broken, so why do you say you have so much pain, and why don’t you have the energy to just get up and go? These are the frustrating questions that people with fibromyalgia face every day. A research study headed up by Fausto Salaffi, M.D., in Milan, Italy, documents the serious impact fibromyalgia has on a person’s health-related quality of life.*
“Patients with fibromyalgia report disabilities in daily living activities that are as severe as those reported by patients with rheumatoid arthritis, and more severe than those reported by patients with osteoarthritis or other painful conditions,” state Salaffi and co-workers. But how do fibromyalgia patients really compare to rheumatoid arthritis patients when using standardized questionnaires to evaluate both groups? This was the question that Salaffi’s study sought to answer.
Salaffi assessed a large group of subjects, which added strength to his study. He enrolled 380 fibromyalgia patients, 693 people with rheumatoid arthritis, and 1,579 healthy control subjects. All participants completed a validated instrument (Short Form 36-item Healthy Survey Questionnaire, SF-36) that measures the following eight components of health-related quality of life:
(1) physical functioning,
(2) role function – physical aspect,
(3) bodily pain,
(4) general health perception,
(5) mental health,
(6) role function – emotional aspect,
(7) social functioning, and
For the most part, the scores for each of the eight components of the SF-36 were the same for both the fibromyalgia and rheumatoid arthritis groups. However, fibromyalgia patients scores substantially worse on vitality. Feeling so devoid of any energy, it is no surprise that fibromyalgia patients also scored worse on the mental health component of the SF-36.
“Fibromyalgia patients consider widespread pain, fatigue, and unrefreshing sleep to be the factors that most significantly limit work performance, and our findings are consistent with those of previously published clinical studies,” writes Salaffi and co-workers. “Pain is one of the most frequently reported, bothersome and disabling symptoms,” he says, adding that the “pain may be more severe than in rheumatoid arthritis.”
So how do fibromyalgia patients measure up to the healthy controls? “Comparing adults without frequent pain, patients are 2.6 times more likely to report poor overall health if they experience pain several times a week, and 11.8 times more likely to do so if pain is experienced every day” — as it is in people with fibromyalgia, who have daily, widespread pain.
The fatigue factor, which is captured in the terrible vitality score, also plays a major role in how you feel. “Fibromyalgia patients seem to have higher overall fatigue levels and experience greater daily variability than those in other pain groups. The findings of sleep studies suggest that 70 – 90% of fibromyalgia patients complain of non-restorative sleep, which accentuates pain, musculoskeletal stiffness and fatigue.”
Comparing the eight component scores of the SF-36 for fibromyalgia patients to the standardized scores established for other illnesses, Salaffi writes that fibromyalgia “resembles the pattern of restrictions generally found in patients with musculoskeletal disorders or other chronic conditions such as congestive heart failure, chronic obstructive pulmonary disease, hypertension, recent acute myocardial infarction, type II diabetes, and malignancy.”
If you are functioning well with your fibromyalgia, all the power to you. More than half of patients with rheumatoid arthritis can still maintain function and certainly not everyone with a chronic illness is faced with having to quit their lifelong career. However, if you are struggling or find yourself unable to hang onto a job or continue with your normal chores, let your family know that your exterior lack of visible symptoms or blood tests are not a valid indicator of how you feel. Explain to them that the severity of your symptoms are equal to that of the many serious diseases listed above. Looks can be deceiving.
* Salaffi F, et al. Clin Exp Rheumatology 27(suppl 56):S67-S74, 2009.
Sometimes you wish something else was wrong that could be fixed or named. Then people would understand better. That is why people with this disease also suffer from depression. This illness seems unfair and most people feel it’s a lazy persons disease or you just complain a lot….because it hurts!
BE POSITIVE…..I hear. But it’s hard to be positive, I’ve noticed, when the same people are going through something hard. BE COMPASSIONATE…. would be a better word. I would never let my family know how bad or hurt I am, as I don’t want to hurt them. Yet, why can’t I just say what I need and why, and not be thought upon as “wanting attention”? I am appalled by some things my own family has said, and yet, not really understanding what has happened to our family in 15 seconds during an accident. It turns worlds upside down.
In a pain crisis, things seem hopeless, but it is necessary that we put on a postive, happy, image to keep people off of our back.
Double Standards! But being bitter doesn’t help, working through feelings and finding someone who really can relate is the best medicine.
I First had fibromyalgia in the early 80′s. I stay in 24 hour, constant pain at a high level, and have developed severe osteoarthritis as well. Both diseases together are almost unbearable.
Also I have run the course as far as medications are concerned. Although I am now 70 years old, other than fibromyalgia, and arthritis, I have maintained good health, and am considered young for my age. If I can be of any assistance at all, please do not hesitate to contact me. Perhaps the length of time I have suffered with this disease will be helpful to others.
I know this post is old but i just came across it..i am 27and and have beeb struggling for yrs with pain but ive only been diagnosed with fibromyalgia 2 months ago. Im on neurontin and cymbalta..my dr doesnt seem to believe me that im still in an extreme amount of pain. Its like my whole world has been turned upside down. Do you have any suggestions as to help ease my pain?
Shawnte, I know what your going through. I was diagnosed with fibromyalgia 3 yrs ago, and same thing happened to me, my dr. who once believed and diagnosed me with fibro told me because of all of my pain and complaints of things bothering me that it was all in my head and she’d be happy to refer me to a good psychiatrist. Needless to say I never went back to her again. My advice: Find a new Dr.
Please do yourself a favor and see a pain management doctor. My doctor has been a lifesaver for me. He also is not afraid to give prescriptions for narcotic pain medications. I am so sick of doctors telling people “Well I don’t believe in using narcotics.” My answer to that is: Well you can’t feel how bad I’m hurting but for one day I wish you could.
I have been diagnosed with fibro since 2008. I am now considering applying for disability. My husband really has no clue and I think just believes I am “faking” it. I have been calling a pain crisis an “escalation”, but being in bed for most of 4 days after overdoing it because I am trying to keep up with what other people do, is absolutely a crisis! My brain doesn’t work right anymore !
I was diagnosed with Fibromyalgia in 2007 and worked untill 02-10 and had to quit. I applyed for disability in 04-10 and it is now 05-12 and I haven’t been to court yet. Your husband is wrong about you “faking it”. I wouldn’t fake this much pain if I was going to fake something. This is no fun. Hope things go o.k. for you with SS.
I’m 21 years old, and I started developing fibro when I was about 15, still in high school. Jobs that are easy on fibro patients are difficult to get, and jobs that can be acquired with only a diploma rip our bodies apart…
My parents have said to “suck it up”, “get over it”, and “don’t talk to ME about pain”, but I simply can’t do the things they can do.
I’m 60 years old have fibro,Ostioarthrits ,degenerative joint disease,menentries disease,diebetes ,hypertension ,Ehlors Donlos,and now liver disease, and people including family still don’t understand and everyone wonders why we want to give up?
My husband is 46 and been unwell since 2007 /with full diag only in 2012 . It started with memory probs & then depression for 1st time ever! Then depression stopped and chronic pain started! He has now been diag with Fibro, widespread O-arthritis ,Degen.Disc.Disease -to neck/low spine, vit D def. He’s had 1 OP with more than 3 ops to go but we are just pleased for the diag & to know what it is…