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Adrienne Dellwo

Age & Onset of Fibromyalgia/Chronic Fatigue Syndrome

By September 17, 2010

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Fibromyalgia (FMS) is often considered an "old woman's" illness, even though the average age of diagnosis is now in the mid-30s. Some doctors refuse to diagnose chronic fatigue syndrome (ME/CFS) in young people because they're clinging to the long-outdated notion of "yuppy flu" and burnout.

In reality, these illness are in no way constrained by age. The risk might be lower during certain times of life, but that doesn't make them impossible -- especially if there's a family history.

How old were you when FMS or ME/CFS hit? Take the poll, and leave your comments below!

September 18, 2010 at 4:23 am
(1) Danelle says:

I was diagnosed in my 20s. I believe that is one of the reasons that lyrica (which I am on) commercials bug me so. All of the spots I have seen perpetuate the yuppie flu myth. Women in their late 50s taking art class, how was that decided upon as the scenario that would speak to the majority of fibro sufferers?

September 18, 2010 at 9:48 am
(2) M says:

I was diagnosed in my 50s but obviously had it by at least my 30s but didn’t know what was wrong with me.
I think the reason they say it’s an old person’s disease is because the doctors hadn’t figured it out until the last several years. When you hit menopause it tends to get much worse and many were finally diagnosed then. Young people these days will get help much earlier…a good thing.

September 18, 2010 at 3:37 pm
(3) Fibromite-Gen3 says:

Our family has FOUR generations of fibromites, Dx’d by the same rheumatologist. Symptoms for ALL of us began in childhood; diagnosis of of my FM was received in my mid-30′s, my mother in her late 40′s, my great-aunt was in her early 70′s, my daughter was in her EARLY teens. Since FM doesn’t have a *test*, all of us, EXCEPT for the youngest, were tested for MANY things by our primary care physicians and the specialists we were referred to, before we rec’d our diagnosis from a rheumatologist – ranging from 50 yrs. without a diagnosis for the eldest living generation (now in her late 80′s), 5 years for me (3rd generation) and “SAME DAY” diagnosis by “our” rheumatologist for the youngest family FM member. After a family reunion this summer, the women of our extended family started comparing notes about FM symptoms and diagnosis and we ” fibro patients” feel there are more UNDIAGNOSED family members, which prompted our referrals to our rheumatologist [who is EXCITED about studying our family] for those suffering from pain, fatigue and fog. Anecdotally, we fibromites, decided that our great-grandmother (who would have been 5th generation) went un-diagnosed her whole life; she died in the early 1970′s. Our family has had mostly girl babies; of the 3 boy cousins (in the 20-40 age range) there is probably ONE undiagnosed case.

September 18, 2010 at 4:14 pm
(4) cynicalsis says:

I diagnosed myself after menopause and a severe
case of shingles at age 52 but it took 5 more years
of ignorant doctors to finally find one (female)
who believed me and took my pain seriously…..

September 19, 2010 at 3:52 am
(5) Marcella says:

My experience was like cynicalsis. I diagnosed myself in my 50′s, and then after many expensive specialists over five years ruling out everything else I was finally diagnosed by the first doctor I saw, a neuroligist. I probably had FM/CFS at a much younger age, I had many of the symptoms, but it hit me full on and with very painful force in my 50′s. I remember having to stay home from school becuase my periods were so painful. They would give me demoral at the hospital when my mom took me there. I also seemed to have princess and the pea syndrome. My skin hurt with any kind of pressure, and when I got sick with a cold or any other illness it lasted way longer than it should have. People would think I was trying to get attention.

September 19, 2010 at 7:23 pm
(6) sarah says:

got it in 1965, and diagnosed in 1987.

September 21, 2010 at 5:12 pm
(7) Dana says:

I am so glad that you are doing this poll, because, I had often wondered when did this start? How do I know if it was growing pains? Maybe I have had this all my life, but just in and out of remission? It seems like the older I get the pain increases and remissions are fewer. I never had been “flexible”. Thats been my whole life. I remember I started having Back pain and my exams at e/r was typical back exam, Like how far I could lift my legs, Not far even for a 16 yr old. And I was always tired, but they just passed it off as depression. The older I get the more fatigued I get, the less restful sleep I got. Now here I am, 37, I can’t get out of the house as often as I used to. The last 10 years has really kicked my butt! But I have been under a tremendous amount of stresss for the last 5 yrs. I miss shopping and going around and visit with family and friends. Just doing stuff. When I was younger, I was always active, whether I was walking across town and back, Hiking, bicycling, roller blading. And I loved the challenges, I was like Scrappy do, Don’t tell me I can’t do this or that, especially when they’d say your a girl you can’t do this or that, cause let me tell you something, I told them to bring it on!!!

Now 37 knocking on 38′s door. Even though I am home bound most of the time. I’m learning not to push myself too much and accept the fact that I just can’t do a lot of things I used to do and I learned to appreciate the small victories of say vaccuming, or standing to cook an actual healthy meal instead of eating a lot of “convieniant foods”. I have a wonderful supportive husband who has fibromyalgia and CFS and other chronic pain conditions. I do believe my mother was misdiagnosed as having MS. I just don’t know too many years ago or perhaps had Fibromyalgia, and or CFS. I just really believe this is a genetic disease. I don’t know how to find out. I hope this helps everyone!

October 7, 2011 at 5:07 am
(8) elizabeth says:

This was a year ago and I wonder how you are doing now. I have spent years “fighting” to do things. Your story could be my own. There was nothing I couldn’t do and now I at 45 I’m lucky to leave the house. With the help of my kids I have a regimen like plants to water which simply keeps me moving. And gets me outside. I ALWAYS pay for it but I refuse to let this defeat me. I also have to say I’ve been blessed to have doctors that listen and believe what I say. If they would have been there in the beginning maybe I would have gotten more life to my years. Being told by so many that nothing was wrong with me hurt me worse than the Fibro itself. I just wanted to let you know I heard you and keep the fight. You will find its the only thing that will get you thru.

July 11, 2011 at 6:17 pm
(9) MC says:

I have been dealing with chronic pain my whole life. I was treated for several conditions as a child. Some of those conditions waned, and others arose. In my early 20′s, I began having these horrible back/neck flair ups of severe pain. I am 31 and have recently been diagnosed with Fibromyalgia. It continues to be a burden, but I am learning how to cope with it. In the passed 10 years I have noticed more areas of my body are being affected, but luckily I am taking medication and learning how to prevent the pain from becoming full fledged and debilitating. Good luck to all of you. Hopefully more will be learned about this syndrome and relief is in the near future!

March 10, 2012 at 7:55 am
(10) Donny says:

I have had chronic pain in my joints for as long as I can remember bringing me to tears in the middle of the night this was dismissed as growing pains but now I’m in my 20s and its getting worse I have had 3 surgeries on shoulders but it’s my whole body mostly when the weather changes and the mornin but no doctors believe I’m in that much pain how do I get them to listen to me instead of thinking I’m just fishing for painmeds I just want relief

July 28, 2012 at 1:00 am
(11) Lisa says:

I am 34, married with a 2 year old. I finally addressed my ongoing pain today with my family doctor. I didn’t earlier because I thoight I would be labeled as a complainer or hypochondriac. My arms and back ache and burn, my neck is tighter than a pulled rope and my hands feel like I’ve given a whole day of massages. This afternoon and evening, I broke down in tears because I’ve seen my mother’s ongoing battle with fibromyalgia. I’ve seen her carrying around a number of pill bottles and her careful choosing of pillows, mattresses and safe exercises. Right now, I’m viewing it as a ball and chain syndrome when I should be thankful that there will be less pain with medication. I am also glad to be diagnosed during an era when doctors actually know what it is…

March 23, 2013 at 11:39 pm
(12) lovemydaughters says:

My teenage daughter has been battling with sleep issues, stomach pain and what seems to be an endless stream of achy muscles and joints. I have taken her to the doctor and nurse practitioner, who have told us to cut off her computer and electronic devices after 7:30 pm (yeah right!). They have given us a list of things she doesn’t have, but not a diagnosis we can grab ahold of.
My daughter has been active in sports since the age of six (much of it year-round), but it’s really been the last couple of years that have found some of her pain to be unbearable at times. She is very good about icing after games, and we have tried just about every OTC anti-inflammatory and pain relievers there are.
She has had x-rays, ultra-sounds, and is scheduled for a cysto-urethrogram, and has an appt. with a gastroenterologist.
I feel at my wits end, trying to find something that will make her feel better. We have a very good relationship, and it kills me to see what all this pain and frustration is doing to her physically and emotionally.
She has so many of the symptoms of fibromyalagia, and I am making it my new mission, to learn more about it – and to make sure my daughter gets the help and support she needs and deserves.

October 14, 2013 at 12:35 am
(13) Crystal says:

I am 22 and I sincerely believe I have the symptoms associted with FMS. My nana has had it for as long as I can remember and I have been afraid to mention my constant pain for fear of seeming like I only want attention. I have been diagnosed with depression and everything else I tell my doctor about is always blamed on something else. Some days, like today for example, I wake up hurting from new to toe. I haven’t been sleeping well for quite a few years and my stomach has a mind of its own. I have also been diagnosed with migraines. It just seems like it all fits like a glove. I am planning to talk to my doctor again tomorrow but seeing that I am not alone makes me feel better. I just want to “want to” do stuff again. I want to feel like getting out of the house, going back to work and to class, hanging out with friends and so on. Prayers would be greatly accepted!

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