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Adrienne Dellwo

Young vs. Old: Different Type of Chronic Fatigue Syndrome?

By February 27, 2013

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Research Brief

New research suggests that cases of chronic fatigue syndrome beginning after age 50 are different from those that start earlier in life.

The study involved a post-50 group and a group of 16-29 year olds, all with chronic fatigue syndrome. In evaluating a range of symptoms, researchers found that those with onset later than 50 had:

  • Greater fatigue,
  • More depression,
  • Greater autonomic dysfunction, with reduced parasympathetic and increased sympathetic function,
  • Substantially reduced baroreflex sensitivity (which helps maintain blood pressure,)
  • Slower pumping of the left ventrical (prolonged ejection time.)

Researchers concluded that people who were older at onset demonstrated a very different disease characteristics and are more severely affected.

How old were you when chronic fatigue syndrome hit? Do you think age can make that kind of difference? Have you seen the age difference demonstrated in people you know? Leave your comments below!

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Comments
February 27, 2013 at 8:30 am
(1) Tom says:

My onset age of CFS was 45. I have always felt that my symptoms were much more severe than those whose onset was much younger. I often read of younger patients still maintaining a part time or even sometime full time work, or still being able to go the the gym, or continuing in school. I believe that their disease is severe and disabling yet it would have been impossible for me at 45 to continue any of those endeavors.

Don’t get me wrong, I do not think that they “have it better” for I at least had a life prior to 45 that was very healthy and productive. They are robbed of this, so I am very sympathetic of their plight. All CFS patients would rejoice with any significant treatment for this debilitating disease.

February 27, 2013 at 12:23 pm
(2) DFWMom says:

Interesting.

Now that this distinction has been identified, perhaps some researcher should go back and review the data on earlier studies which claim that GET and CBT are effective treatments for CFS. The study shows that 22% can recover from CFS, while approx. 7% not receiving the treatment can recover, suggesting that some of the 22% would have recovered with no treatment, leaving perhaps a bit more than one in ten who actually recover by responding to these particular treatments.

Is there anything special about those one in ten CFS patients that do respond to these treatments that makes them different from the majority of CFS patients who do *not* respond to these treatments? It seems likely.

February 27, 2013 at 2:22 pm
(3) Axel says:

Maybe being a bit ignorant here but…. I thought CFS was a blanket term that covered a variety of conditions, that is 2 of the people i know with it have different problems but both have had a CFC diagnosis?

March 1, 2013 at 3:33 pm
(4) scarlet harry says:

they prob HAD different illnesses! in saying that, i got cfs when i was 23, it lasted 2-3 years and although i felt dreadful my mobility was unaffected. i recovered to about 90% . when i was 33 i again got cfs, this time was horrific, mostly bedridden with severe mobility issues, pots pain. 7 years on and as yet no recovery.

March 1, 2013 at 3:53 pm
(5) barb says:

i got CFS after being in the Gulf War. i was 41 when symptoms started and they have not let up, 20 years later. i still and will always believe that the stressor of going to war overloaded my immune system so badly that that’s why i got sick. no will ever convince me otherwise.

March 1, 2013 at 4:00 pm
(6) Annette says:

I got decked, literally, at age 36. My autonomic function was so severely affected that I had difficulty raising and lower my lungs, in addition to all else it governs. So, I don’t know about older or younger, having been hit smack dab in between. But, I can say with certainty, that I was under gigantic mental stress when it hit.

March 1, 2013 at 4:05 pm
(7) Cheryl says:

I was 32…It was Nov. 4th, 1985 at approx. 10:45 pm. I will never forget the day my life changed forever. My Mom was 25 when it hit her and my daughters were in elementary school when they started their first symtoms. I have to say that we are all suffering…everyday!!!!!

March 1, 2013 at 5:12 pm
(8) MK Gilbert says:

I also was “in between”, fall 1987, age 31. I got pregnant about a month later~after the baby was born i thot I was dying, as I had so little energy! I did have a very severe yeast infection (swollen/painful bartholen’s glands) at the onset. That was about 25 yrs ago. The aches and pains came on more gradually~I pretty much told the Dr’s that I thot I might have chronic fatigue syndrome nearly 10 yrs later~I was sick so often, esp in the fall/winter they told me I had mono 2 yrs in a row`Epstein Barr titer was negative tho. I am beginning to really resent the Dr’s as I have never really found even ONE in all these yrs that understands~my current one blames all my problems on “the anxiety/depression.” He’s very kind, but I have been pretty much on my own thru all of this~I just figured out this past year that I have had Bipolar II for several years at least! Why are they all so ignorant?!? I have no insurance, so have to go to Behav Health where I get free “care” as long as I go to my counseling appts which are totally useless! The Dr is an arrogant jerk! The PA is very nice/wholistic, but every med she tries on me just makes me worse! I want to go to a naturopath when I can afford it~but have also had bad reactions to “natural” treatments for low thyroid and adrenal fatigue! I’m a super sensitive person in every way, and am getting much worse as time goes on~I feel like life just isn’t worth the effort anymore, even tho I have a darling grand baby now~if it weren’t for my family I would have chosen to end it all years ago…I just can’t bear to upset them or cause them any pain~but with my stupid mood swings I often say things I shouldn’t. I hate my life!

March 1, 2013 at 5:22 pm
(9) Roberta says:

I was 56 when I was diagnosed, after one year spent more in bed than standing due to EBV infection, maybe it overlapped with CFS-ME. This was 6 years ago. Compared to what I hear from other patients as severely hit, I think I have more flares, no way to do some work – not even giving lessons at home- I think it is more invalidating and getting no better.
But as somebody else wrote here, I still consider myself lucky because I had an active life until 56…while those who are hit in a younger age lose much more life-time. I do sympathize with them.

March 1, 2013 at 5:25 pm
(10) eaglehaslanded says:

Everyone seems to have different symptoms. With myself, I have both Fibromyalgia & chronic fatigue syndrome. In my earlier years I was,mostly, very tired & got that way easily. Of course, I was called “lazy” & a multitude of other not so nice names. The severe PAIN that never goes away didn’t pop up til I was in my middle 40′s when I noticed my feet hurt terribly but couldn’t find the physical reason for it.

Some patients are stricken with more of the cf side of it. Just cannot find the energy for doing much of anything & sleep doesn’t help. Others don’t experience the fatigue as much as the burning, unrelenting pain that goes on 24-7. Still,others, (such as myself), have BOTH. :( And, it had been creeping in kind of gradually til I fell & broke my leg over 3 yrs. ago. Ever since that accident it’s been all down hill & I don’t see it stopping til I hit the bottom of the “ride”. Scary stuff!!! MY Fibro. doctor experienced total fatigue all the time & fog. Not much pain. But, she sure did understand about the pain.

(((hugs))) from eaglehaslanded

March 1, 2013 at 8:14 pm
(11) Lcanny says:

I have had CFS since the age of 15, and fibro since age 20. It has been extremely difficult for me. My pain symtoms are recurring and remitting but when I have the pain it is pretty severe and lasts for months to years at a time. I have never been able to work full time, and have yet to find the right balance to be able to work part time or even at all.
Perhaps the later in life fibro being “worse” is more to do with wear and tear on the body. I’m not saying they don’t have fibro but maybe it just seems worse because they have it on top of all the aches and pains that come with aging and perhaps there is a hormonal component there as mennopause has likely occured.

March 1, 2013 at 10:21 pm
(12) Donna says:

Although it was undiagnosed, I believe that I was in my late teens/early 20s when I started experiencing symptoms of CFS. I loved to walk and would push myself to walk 3-4 miles in an hour. But, I would collapse at home not even being able to make it to my bed. My heart rate would drop and it would take some time before I could recover enough to sit up. I am 62 now and continue to have issues with fatigue and pain. But, now, when I push myself, my glands swell up and I have difficulty swallowing.

March 1, 2013 at 10:31 pm
(13) sue says:

I began symptoms at 30 years old and had severe relapses from 34-38 years old. I finally got better at 40. Now, at 56, nearly 57, I have had a 6-month relapse and I am finally feeling better after 6 months so cross your fingers. I believe I have a new episode, without the sore throats but everything else and this time my muscles have greatly been affected, with vitamin deficiencies as well as crippling. I fought thinking me/fibromyalgia was back but this kind of pain and depression and hopelessness take me back over two decades. I fear for four years of relapse again but with all the vitamins and knowledge I have recently gained from articles such as these, I am positive.

March 1, 2013 at 10:34 pm
(14) sue says:

I’m not sure what kind of “treatment” patients with CFS are receiving because there is no cure. Alot of people think getting tired is CFS but no, it’s a real disease like no other and worse than MS.

March 1, 2013 at 11:17 pm
(15) Nancy says:

It seems a lot of us were in the “in between” age when hit with CFS and/or FM. I was 38. I’ve never recovered and I’m now almost 73. I have both, plus a lot of other stuff that’s come since the original illnesses.

I wonder sometimes if CFS is a form of MS since it shares a lot of the symptoms of MS and hits at about the same age. It took many years to get a diagnostic test for MS and it seems to be the same way for CFS.

March 2, 2013 at 12:31 am
(16) KC says:

I have had Fibromyalgia and Chronic Fatigue Syndrome since I was in my mid twenties. I’m over 50 now.
So how does the research show that correlation?

In my case, both issues got worse and my coping tactics (exercise, positive thinking, not focusing on it so much – being occupied with stressful work and raising a family….I didn’t take pain meds beyond an occasional TPI for a specific trigger point. I knew injections were not a good long term solution. I did rely on ibuprofen 800mg and ice packs when days were really tough. Now, those approaches don’t take the edge off at all. I rely on pain meds because my cervical spine has issues in parallel with the constant myofacial pain of FM and the exhaustion of CFS.

I would love to know how the diseases change over time for others.

March 2, 2013 at 1:28 am
(17) Penelope says:

KC, over time my CFS has gradually improved, in that I can do more now; not a lot by normal standards, but more than when I was at my worst and could barely get out of bed. Still have to make sure I spend most of my time resting, but I am now well enough to enjoy trashy novels or watching TV while I rest in bed, rather than just lying in pain. Also, in short bursts I can do some normal things again.
I do think there is something in the menopause argument. I was sick for a year or two in my late teens, then I developed CFS in my early 40s, i.e. peri-menopause. It got gradually worse over the first two or three years, until I was unable to cope and was forced by the CFS to stay in bed. Once I got the hang of doing less, I was gradually able to start doing more, but still have to be very careful not to do too much and end up making myself sicker again. (Hope I am making sense here.)

March 2, 2013 at 3:38 pm
(18) Frosty says:

I was 60 when diagnosed with Fibro. I had suffered 10 years with unbelievable stress from a co-worker at my job. The last 3 years, I could no longer get to work on time and I began to realize that something was very wrong with me. I was diagnosed by a doctor who prescribed Zoloft. After 3 weeks of taking Zoloft, I came down with Restless Legs Syndrome. I attended a meeting in Texas for RLS and talked to a researcher. After telling him about getting RLS after taking Zoloft, he replied “We hear that all the time. The doctors just don’t know.” About a year later, I experienced the most debilitating exhaustion I have ever felt. It lasted about a week. The following year, it came back and lasted for over a month. After that, it came and went and I found that sleeping for anywhere from 4 to 15 hours usually made it go away. I’ve experienced parking my car and falling asleep for 4 hours+ numerous times. The CFS has lessened lately, but the Fibromyalgia is just awful. If I work too much or too hard, the pain is incredible. I am 72 now, single, own 5 acres and am wondering how much longer I can live here. Oh I suppose if I didn’t grow a garden, let my fruit trees die and don’t cut the weeds or spray them in spring and just sat around and did nothing, I could stay here. The thought of moving (with all the stuff I have) is just too much. Now with my age, I have noticed a decided weakness with my body. I used to be able to sling a 70 lb bag of feed around. When that got too heavy, I began to buy 50 lb bags. Now, just lifting a 35 lb bucket of cat litter is very hard to handle. I’ve always wondered about whether there is a connection with MS. My sister has it and our symptoms are VERY similar. These things won’t kill me, just make life very difficult.

March 3, 2013 at 6:11 pm
(19) Linda says:

It was interesting to see Cheryl’s comment about remembering the exact date and time that it hit her. That would be a great question to ask. Because that’s what happened to me. There was a terrifying, ominous feeling of “something just happened here”.
I was 57 years old. I was on my bicycle in the middle of a 27 km loop. I was tired, recovering from a lingering summer cold, but it was a beautiful summer day in July. And I was in shape, 107 pounds, cycling and kayaking and hiking regularly.
But in that moment I was so tired, I almost started to cry. There were no short cuts to get me home, I never carried a cell phone, and no taxis ever cruise this area. I ended up walking home because I felt I would fall off my bike, I was like a bag of jello. By the time I got home, I was crying.
I never went farther than ten minutes from home on my bike again, and eventually gave it away. But I agree with everyone here. At least I’d had a lifetime of enjoyment to remember. It breaks my heart to read of the younger ones suffering.

March 4, 2013 at 4:39 pm
(20) ticklishmoose says:

I has a diagnosis of FMS @ age 40, then moved into CFS a few years later, and continued to work with active Epstein-Barr for 18 months straight until I was close to collapse and had an infection in the lining of my heart. I had SO MUCH PAIN, and it has never left. I was sure I would be bedridden for life I was so sick- I couldn’t lift a coffee cup. But finally someone found Lyme in my blood (I had tested negative before) and after 2 years of treatment I am 50% better, still can no longer work

I have no idea when or where I picked up Lyme, but I was always active camping and played in the woods as a kid. My theory is that it was dormant for decades until I had an extreme time of stress (4 family members died in 5 yrs time- 3 from cancer) and my immune system couldn’t hold it back any longer.

With the new insights that virus’s can bacteria can cause even cancer, it makes NO SENSE that they keep trying to blame CFS on stress and depression. They are finding even Autism, MS, and Alzheimer’s has a viral and/or bacterail basis. Stop the lies about CFS and let these poor people recover! It’s like a bad science experiment…..

March 5, 2013 at 1:05 pm
(21) Carole says:

I was hit by CFS when I was 12. I am now 48, and it is considerable worse now. The symptoms seem to go in cycles but the pain is severe and permanent.

March 5, 2013 at 9:34 pm
(22) C says:

I think my illnesses really started to take shape in my twenties and may have been triggered even sooner. One doctor thinks it may have started as early as 7 years of age for me. I, myself have noticed a major change in my stamina in my twenties and earlier in life as well but I wonder if I have an underlying illness though. I can get purplish lips and bruising etc. and apparently this can be attributed to CFS and fibromyalgia but I wonder if there is an additional underlying illness as well. This thought can be scary and rather frightening at times especially since I can get shortness of breath and dizzy spells.

March 8, 2013 at 5:22 pm
(23) Andrea says:

I was 19 when I developed mono-onset CFS. It’s a horrible thing to have, and I spend nearly every minute of every day pushing myself. But I do consider myself in the “less severe” camp. It’s incredibly challenging, but I work (at a desk, not on my feet) a typical 40-hour work week.

I had a few of my symptoms even before the mono, although to a much lesser degree (low energy, difficulty standing for long periods of time, etc). I haven’t yet explored whether this could have been the CFS itself or a precurser to it.

March 12, 2013 at 7:31 pm
(24) Esther Siebert says:

To MK Gilbert: We all hate our lives whether it is just from time to time or for years on end. After 26 years of CFS plus FM, I have spend many of those years hating being sick and blaming my husband and being angry with all of the well people I encountered who were going on with their lives. All of this hate, anger and jealousy, it took me years to figure out, was self-pity in its many forms which has caused me more pain and hurt than my illnesses themselves. Self-will cause I thought I should get my way in life. And rebellion against reality: I’ve learned you can rebel against reality all you want but you can never win that battle.

What helps most is acceptance, acceptance and more acceptance. Surrendering to reality as much as possible in the moment. Thinking about and finding small ways to be of service to others. Giving up the fight against reality as it is in the moment–and NEVER GIVING UP THE FIGHT against these horrible illnesses!!!

Even if there is no cure for me, my hope goes out to the young people suffering as we have for so many years. I suggest you read “How To Be Sick” by Toni Bernhardt which has helped me so much. I send my blessings to all of you. Esther

April 23, 2013 at 6:46 am
(25) Adrienne says:

To be meaningful the reports need to say which definition of chronic fatigue syndrome were used???

My experience the 30ish people seem to be hit the hardest. Many commit suicide and so are likely to be under represented in surveys of older people.

April 27, 2013 at 8:24 am
(26) Rosebud says:

I tend not to believe research papers as they change so quickly. I came online to seek re the effects on M.E ( I am UK) of ageing. I was first ill in my 20s although I can remember a short episode at 12 after flu. I was misdiagnosed as being mentally ill, then just difficult and inadequate and went through hell for decades until the right diagnosis came around 15 years ago. My mistrust of drs is sever and I left the UK for Ireland then. I am almost 70 now and live a limited but fulfilling life, knitting etc for homeless funding. Alone and that is great too. But of late the fatigue is scary and I am wondering how much ageing is the cause as well now. Life is precious to me, to be used for others now. Pottering is good too! Someone mentioned foot pain; I have had this years and it is Raynaud;’s syndrome. Nasty indeed, but so much is! Worse when you stop walking.

June 3, 2013 at 6:08 am
(27) Renae says:

My mum came down with chronic fatigue in her early forties (she is now in her mid-fifties). She is severely depressed (seriously – she cries at least every hour, sometimes every 5 minutes) and irrational; she also has extreme fatigue.

I was diagnosed with FMS and CFS when I was 16. I suffered mild depression as a result, but nowhere near as severe as my mother’s. For the first five months, I spent about 23 hours a day in bed (the rest of the time mostly on the toilet, as I have severe constipation). But after a while, I bounced back over a period of 2 years and I now attend university at 75 credits per semester (100 credits is full-time, 50 credits is considered part-time). I am unable to work a job while studying. And I do have equity allowances with my studies. But I am doing very well, considering the pain and millions of other symptoms I go through daily.

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