Healthy until contracted ME/CFS?

[Mya Symons]

I'd also like to address the posts where people said they were athletes, athletic or worked out a lot.

I hear this so much from people with Lyme and ME/CFIDS, that I began to wonder if there's a connection between people who work out a lot and ME/CFIDS.

Athleticisim and stamina are considered good and healthy but consider that it might be a contributing factor towards getting sick.

I worked out alot before I got sick and I know you think it's good--helps circulatory system, muscle growth and so many benefits that you push yourself too far and think that too is a good thing. A Type A trait, isn't it? I'm not lazy, I'm productive and my body is my temple.

Exercise can weaken the immune system, weaken the endocrine system (adrenal crash!), decrease antioxidants, decrease electrolytes, cause physical stress. Were nutrients kept at a high level or was the person on a low calorie diet with no good fats? How about not recovering between workouts, after injury, after getting the flu or a cold?

Was there stress and emotional problems in your life and you used exercise to escape to get the endorphins, proud of yourself that you weren't turning to alcohol or drugs or something damaging?

You felt fine but it's common to feel fine while meanwhile your body is breaking down and then whammo! you're sick as if it was sudden. A simple flu is the catalyst.

Food for thought, no?

This is interesting. I had an issue with not eating and over exercising in high school to the point that my school counselor called me into her office to talk to me about it and my mother threatened to "send me away" (not quite sure what she meant). I wonder if you are right. Perhaps we had some other problem that was dormant and the over exercise caused it to come out.

 

[ahimsa]

Thanks for the explanation, justy.

I've seen the links with endo before and i wish someone would do some serious research into this aspect of the illness -could be a clue in there.

Yeah, it seems like that kind of research might show something interesting.

 

[little_bird]

Thanks for the explanation, justy.


Yeah, it seems like that kind of research might show something interesting.

Yes, I'd second (third?) an interest in this. It seems issues like endo / PCOS and similar are fairly common in people with CFS/ME/Fibro, in my experience (I don't have a female friend with CFS/ME or Fibro who hasn't also suffered endo or PCOS, or both).

 

[heapsreal]

I'd also like to address the posts where people said they were athletes, athletic or worked out a lot.

I hear this so much from people with Lyme and ME/CFIDS, that I began to wonder if there's a connection between people who work out a lot and ME/CFIDS.

Athleticisim and stamina are considered good and healthy but consider that it might be a contributing factor towards getting sick.

I worked out alot before I got sick and I know you think it's good--helps circulatory system, muscle growth and so many benefits that you push yourself too far and think that too is a good thing. A Type A trait, isn't it? I'm not lazy, I'm productive and my body is my temple.

Exercise can weaken the immune system, weaken the endocrine system (adrenal crash!), decrease antioxidants, decrease electrolytes, cause physical stress. Were nutrients kept at a high level or was the person on a low calorie diet with no good fats? How about not recovering between workouts, after injury, after getting the flu or a cold?

Was there stress and emotional problems in your life and you used exercise to escape to get the endorphins, proud of yourself that you weren't turning to alcohol or drugs or something damaging?

You felt fine but it's common to feel fine while meanwhile your body is breaking down and then whammo! you're sick as if it was sudden. A simple flu is the catalyst.

Food for thought, no?

I agree with maybe some type of exercise addiction that worsens adrenal fatigue and also the first few years of cfs i didnt have a doctor who could diagnose me outside of depression, i had a self diagnosis at that stage of cfs that i kept to myself but doctors were telling me i was depressed, exercise is good etc. I think this is common with alot of people and learn the hard way of going through the whole push crash thing until we definately rule out the whole depression thing as being a cause of our problems. So i think its important to get an early diagnosis to help prevent further adrenal fatigue. When i was really sick i didnt have any endorphin release, it was more like the bank had my family jewels in a vice and family needed feeding and bills needed paying. I still dont really know how i got through my worst years, althought the last 2 years before using antivirals i was working part time with alot of sickies. A few people have said to me how i managed to work, well i just did and spent the rest of my time in bed when not at work. My 13y/o actually said the other day that he can remember when he was in grade 5 and dad was always in bed. Its when i look back at these times i realise how sick i was and how much i have improved with antivirals etc, maybe its a type A thing but i want to also get to 100% again.

I think this is an interesting topic and think eventually if not treated we all progress to a much worse state, just some quicker then others. My cfs was very up and down in the begining and eventually just down constantly so it was a progressive illness and improvement didnt come until i started treating viral causes. I read along time ago how cfs isnt a progress illness, i now know this is wrong too.

cheers!!!

 

[SickOfSickness]

I know I was healthier. I was active and had plenty of energy. I got sick when I was young, so I don't remember much. I think my energy was related to ADHD hyperactivity but was relatively normal for a healthy kid. I don't think the temperature regulation problems and many other symptoms happened until after. I think I already had ASD, anxiety and PTSD.

 

[xchocoholic]

I was working full time, the mother of a 2 year old, did 20 minutes of aerobics 3 times a week, and was happily married so I consider myself healthy before getting ME/CFS. I had some allergies and hypoglycemia but nothing that impaired me from living a normal life. I vacationed regularly and could even drink a little alcohol at parties ... : )

My biggest clue that something was very wrong was that I couldn't even read the computer programs that I'd written and were in production. None of the words made sense and I couldn't remember anything ... It may as well have been a foreign language.

My co-workers were shocked too. The change was a complete contrast to who I had been. I'd been a project leader on a variety of projects but couldn't answer their questions anymore. Nor could I help them with programming.

The fact that I had non stop URIs, UTIs and couldn't stay awake were disturbing too but not as much as this. I was on antibiotics for the infections and as far as I knew, the antibiotics would cure me ... Almost 22 years later, here I am ... better but not cured ...

tc ... x

 

[lilpink]

My initial thought to this question was 'no' & that I was 100% healthy prior to age 10 when I contracted or at least developed the first symptoms of ME. But thinking about it there were some anomalies which now play a massive role in my ME (and largely housebound) life. As a younger child I was always very cold, always felt very ill on swings, roundabouts, and see-saws (though didn't then have a problem with heights as I do now as part of the vertigo/ sensory/ propioceptive issues which dog me) and was incredibly skin sensitive to the point where I had to have the local drapers buy in special underwear that wouldn't leave me with read weals across my skin. (My mother always called me the 'Princess and the Pea'). I suspect this was not the norm for a pre-teen..and might have been portentious?

 

[kermit frogsquire]

Interesting thread, but I think we have to be careful not to over analyse before we had ME. For example, at school loads of my friends went down with a chronic pneumonia type illness that lasted 6 months and up to a year in some, yet none of them got ME. I didnt get that pneumonia illness, does that make me more healthy, less healthy or was it just coincidence? What I am saying is that an awful lot of people have minor illnesses all the time, therefore to concentrate on them without reference to what is normal could result in erroneous conclusions.

In the years before I was ill I had loads of stamina, was very fit, had no problems other than tonsilitis that I use to get a few times a year. This tonsilitis was probably just part of growing up as it went away 2 years before I got ME at the age of 18. I would have classified myself as completely healthy, more healthy than a lot of my peers in the 2 years before ME. I didn't exercise exessively, had a healthy diet and felt completely healthy. In the 2 months before I came down with ME I had mesenteric addenitis, started to get a lot of headaches and got occasional sweats. However after I got ME everything was completely different and I knew that something serious was wrong. So there was a big difference between before ME/after ME, such that I wouldnt be confident in saying that my previous health was in any way related to it. In my case this pre-illness phase could have been related to the BCG, polio and tetanus vaccines, or to swimming in swampy water.

I got ME after a severe glandular fever illness combined with a very bad stomach bug and never recovered. My stamina went from 100% to 10% overnight, raised liver enzymes, eosinophilia, tachycardia and persistent fevers, these have all lasted a decade now.

 

[sickness]

What a great thread! I'm going to weigh in ...

I had:

- pneumonia in infancy
- low stamina (I was that kid nobody ever chose for their team at sports)
- muscle weakness (rode horses for years - never became unable to mount a horse without help, could never climb on frames or rope, and I always found stairs difficult and would go up them on all fours if nobody was looking. I still do.)
dreadful sense of balance/vertigo/wobbling about/falling over
- massively light sensitive eyes
- Reynaud's (hands and feet)
- always craved both salt and sugar
- very delicate/thin skin (always bruised)
- prone to fainting
- unable to cope with heat or cold
- rheumatic joints from very young (< 10yo: if it snowed I would be unable to bend my legs and would have to go up stairs sideways)
- aching muscles and joints was always normal for me
- allergies some years, not other years
- asthma some years, not other years
- raging endometriosis from the minute I hit puberty
- lifelong anxiety and awful depression (this stopped the minute I was signed off work and was able to rest when I needed to - I literally haven't had a moment's anxiety or depression since and I now recognise that the depression was because I was perpetually swimming against the current of what my body was capable of.)
- vivid dreams with flashbacks during the day
- sometimes my brain worked. Sometimes it was like being in a magic wood, where the paths all moved around of their own accord.
- I couldn't function in school: my brain either worked or not, which didn't fit in with a scheduled day of learning, and I was never capable of doing homework - after a day at school sponging up the info, I needed brain "brain down time".

My digestive system was always unusually robust before I got ME, as was my immune system: I didn't suffer any of the usual childhood diseases, and only caught chicken pox in my early 20s. I rarely caught colds and so forth, and shrugged them off within 24 hours when I did. I think I've had 'flu once in my life.

All the existing symtoms got immeasurably worse after the ME, and I had a bunch of new symptoms join in the fun.

Before ME I was very active, though - even with all that going on. I worked very long hours in a very stressful environment, both home and abroad; had a good social life, and ran 5K when I felt like it (I was never built for speed, mind you). However, if I compare myself to my peers at that time, my energy was either "on" or "off". On a good day/week, if I placed myself under sufficient stress, I could perform like a powerhouse - go go go! On days when there was no work stress, I was a big floppy pile of nothing - on weekends it wasn't unusual for me to stay in bed until 2pm, sleeping and waking and sleeping again.

I consider now that for years I unconsciously used stress as a means to bolster my body to perform at the level a normal body performs at. Not surprising I had adrenal burn-out - but that didn't happen until I caught EBV (and I worked for two years solid with EBV before I collapsed. Since then I've been utterly flattened).

The most astonishing thing for me, with hindsight, was that with all that going on, I thought I was perfectly normal. I honestly thought everyone had these aches and pains, and I knew I was at the extreme end for some things (light sensitivity / my inability to deal with heat / my muscular feebleness and the fact that that didn't seem to improve much with exercise), but I put it down to my colouring (very pale), and the feebleness / need for days spent lying down to my being "good" on some days and "lazy" on others! (The latter is absurd: I am many things, but not "lazy".)

A lot of this sounds very familliar to me Little bird, especially the bit about thinking I was perfectly normal!! Up until the last few years I though everybody was in pain all the time! I really feel like quite an idiot about some stuff. I have wierd sort-of static all over my vision, I though everybody had it! I thought I must be lazy too (though as you said, that was quite absurd) it's just what society tells you, I guess.

I have always bruised easy, and had light sensitivity as well. I know what you mean about the magic wood, with all the paths moving, I was a total space cadet when I was younger. I seemed to spend a lot of time off in my own world.

EBV was definitely the thing that finally did me in too. I was able to function just fine before, not anymore!

It's actually a bit freaky how much of your story I recognize in myself.

take care, ness

 

[Bevbh]

Both of my parents are still alive at 87 and 82, so they must have some good genes but they both had rheumatic fever as children and have a lot of allergies. My mom also has asthma. Dad has IBS. Both have serious mental health problems.

My parents divorced when I was almost 4 and my mom disappeared from my life for 17 years so that involved a lot of trauma. Around that age I had chickenpox and measles back to back.

By elementary school age, I had sleep problems - trouble getting to sleep, then sleeping very deeply with vivid dreams and hard to wake up. Bedwetter for a while. I had frequent earaches and sore throats, occasional strep throat, periodic tonsilitis. Occasional odd rashes. Klutzy at sports and low stamina but loved taking dancing lessons. Salt and sugar cravings. By the time puberty hit, ANS symptoms were obvious in hindsight - profuse sweating from hands and underarms. There must have been some odd chemical makeup to the sweat too because I took the finish off of a rented flute in a few months.

I was given an experimental version of the oral polio vaccine that was given to all elementary school age children in the Dade County school system. This particular vaccine was later rejected because of being too virulent. I remember complaining of leg pains with no known cause from time to time.

Depression, anxiety, obsessiveness were present by the teen years but it is kind of hard to judge when they became diagnosable. I was living in a fairly stressful environment. Workaholicness clearly established by senior year of high school. I had frequent headaches that I now know were caused by sinus infections and/or teeth grinding.

Freshman year of college, I got mononeucleosis but seemed to recover normally from that. In high school I was put on a continuous dosage of tetracycline for acne and stayed on that for about 6 years which led to chronic yeast infections when I went on the pill in my 20s. What on earth were people thinking of when they put people on antibiotics for years at a time for acne?

In my 20's I would have considered myself sort of healthy but with low stamina, dislike of exercize, bad sleep issues. I knew I would come down with a sore throat if I overdid it. In my mid 30's I became aware that I had allergies and was having issues with low energy. An alternatively oriented MD labeled that as chronic fatigue syndrome but I did not think I was really sick, I just had allergies.

When I was 38, in 1989, my husband and I sold our house, got married at Lake Tahoe and moved to TX. About a month and a half after we arrived, I got sick with a flu after a day of overdoing gardening on the first cool day of autumn and never recovered from that. So I count my CFS as starting in 10/89. After about 18 months, I was doing somewhat better and was able to get a job. This was a bad time because I kept trying to resume my prior level of activity, overdoing it, getting worse, etc. Tried allergy shots with no help from them. In 1996, I had a bad relapse from a bad mold exposure which made me worse than before. For a while I was unable to read, couldnt watch TV. That convinced me that this was more than just allergies. A sleep study showed restless leg syndrome a few years ago. Have fibroids and post herpetic pain from shingles.

Both my mom and half-sister have fibromyalgia diagnoses as well as severe allergies and asthma.

 

[Ocean]

A quick reply for now. I've had lots of health issues since childhood. I have also had another chronic disabling condition for many years, again since childhood, but it has worsened severely over the years. In fact because I had so many issues I attributed a lot of my CFS symptoms to my overall poor health and this, along with ignorance of doctors I repeatedly saw for help, led to lack of diagnosis for many many years and led to my being very much worse off now than when I first began having symptoms. Oh and I also had a very bad case of mono in young adulthood.

 

[u&iraok]

it seems that most had some type of illness prior to having cfs/me and those of us who were fit and healthy, x-sportsmen and women maybe overtraining was apart in our down fall, although i did try to take a week off here and there to full recover. I use to do some workouts from hell after my last night shift where i word do heavy weights for an hour then have hour of rope work and heavy bag work and then mow the lawn which was 3 hours minimum back then, but i would get through this no problems and have a nice pleasant after workout glow and a nice fatigue, then shower and go to bed. This sort of session was done once a month to tire myself out and sync my body clock after nights. I also think that some of u really know how to push our bodies which i did in the early days of cfs which probably worsened my condition at the time. I can remember changing jobs for alittle while to get away from shift work, i must not have been thinking straight. I worked as a tree loper, it doesnt get any more physical, i can remember days hiding around the corner from co-workers and throwing up and then going straight back to work, a few times they said i didnt look right but i kept pushing as i need the money to pay the bills. For some of us i think its that ability to push ourselves that gets us into trouble. It wasnt fun doing that sort of work with no sleep. If i had someone to pay all my bills and look after me and my family financially i dont think i would have got out of bed for a few years. dribble dribble dribble??

cheers!!!

Wow, heapsreal you did push yourself! If you're like me, raised to love working hard, it felt good, productive, valuable, an acomplishment.

Even though I'm one of the ones who had some health issues before CFS I worked out regularly since my teenage years and felt good when I really pushed myself. When I got CFS I still worked out and pushed myself. I didn't feel like it was a good workout otherwise. I didn't know how to have any other kind. I don't know how badly that affected my CFS. I finally slowed to very light workouts and even that was too much and I stopped altogether.

I've always pushed myself in all areas and I'm now learning how not to do that, partly because I have no choice since I'm too tired and I don't want to flare but it's amazing how difficult (and possibility damaging) it was to get to this point. I've always gotten mad at lazy people especially at work where I pick up their slack but maybe they have it partly right (well, except for my young and healthy 27 year old coworker who is supposed to file my files but doesn't and I'm lifting heavy files off the floor with my old, sick self!)

 

[nancyhallatr]

I had allergies and migraines, but no other health problems as a kid. I bounced back from childhood illnesses and I had them all...mumps, measles, chickenpox, German measles, etc. ME was sudden for me and I went from being robust and active to being very ill literally overnight. I had an acute viral onset.

The headaches I had after the illness were not migraines. The pain was just as intense, but there was no aura and no nausea. They were located behind my eyes rather than on the side of my head. The allergies are now gone.

One thing I wanted to add...predisposition does not, necessarily, mean prior symptoms or illnesses. You can have a predisposition and never get sick until you're exposed to a trigger of some kind. That's why twin studies, in which one is ill and the other is not, are so important. Identical twins have identical genes, so if one gets sick and the other doesn't you have a medical mystery.

 

[nancyhallatr]

I've had ME for almost 45 years. It has been relapsing and remitting. Your description of your level of activity, justy, matches mine. I had periods of intense activity that never quite made me feel as fit as I expected. I looked fabulous, but didn't feel fabulous. I was always at about 80-85% of pre-illness functioning. These were the remissions. When I relapsed, I went down to maybe 30-50%. My last and most prolonged relapse was about 15 years ago and I seem to have plateaued at 40-50%.

 

[Spinifex Dreaming]

About the age 4 to 5 I had a run of childhood illnesses: measles, german measles, chicken pox...one after the other. It took about a year to get back to robust good health. I had a severe reaction to oral Sabin polio vaccine aged 12, needing emergency hospital intervention. It almost killed me and I didn't have the 2nd & 3rd dose in the course. However I quickly recovered within a day or so. It was also the last time I saw a doctor until I came down with ME & Fibromyalgia aged 30. During that time I was active, healthy, rarely even caught a cold. I wasn't into workouts, sports or exercise programmes. Enjoyed swimming, going for walks, normal activities, but never extreme stuff. Wasn't particularly health-conscious, just was healthy.
I became sick when a flu went through the office where I worked...28 years later I still haven't recovered. The last couple of years I have steadily become much worse and have gone from spending a lot of time in bed to spending almost all my time in bed.

 

[heapsreal]

Wow, heapsreal you did push yourself! If you're like me, raised to love working hard, it felt good, productive, valuable, an acomplishment.

Even though I'm one of the ones who had some health issues before CFS I worked out regularly since my teenage years and felt good when I really pushed myself. When I got CFS I still worked out and pushed myself. I didn't feel like it was a good workout otherwise. I didn't know how to have any other kind. I don't know how badly that affected my CFS. I finally slowed to very light workouts and even that was too much and I stopped altogether.

I've always pushed myself in all areas and I'm now learning how not to do that, partly because I have no choice since I'm too tired and I don't want to flare but it's amazing how difficult (and possibility damaging) it was to get to this point. I've always gotten mad at lazy people especially at work where I pick up their slack but maybe they have it partly right (well, except for my young and healthy 27 year old coworker who is supposed to file my files but doesn't and I'm lifting heavy files off the floor with my old, sick self!)

I never really felt like i was pushing myself though, i just enjoyed training. Maybe those that were fit and healthy pre cfs found it easier to recognise cfs as we noticed it take the wind out of our sails more easily. I can remember a few occassions where i was just a shadow of my former self. i can remember being on holidays with my young family at the beach and walked accross the road and maybe 20mtrs on the soft sand, i was out of breath, sweating feeling shaky etc i had to sit down on a bench while my wife took the kids for a walk along the beach playing etc and then went back to our room and went to sleep. I had many moments like these that were to convincing that i had more then just depression or anything like that. I think if someone has always been sick it would be hard to tell if cfs symptoms were new or old or worsening of some other condition, just like now is one of us gets a cold, we have problems knowing if its cfs or a cold until we get the runny nose etc, the real obvious symptoms.

cheers!!!

 

[u&iraok]

I recognized right away that I had CFS because I was knew what the symptoms were so even though I was having health problems the CFS was obvious. But I have always had trouble really knowing what my symptoms were or how sick I was because I don't have healthy as a comparison. My doctor would ask specific questions about symptoms and how I felt and I had trouble answering him. I just knew I wasn't healthy.

 

[m1she11e]

I was perfectly healthy. Literally went to bed a healthy, athletic, smart 15 year old and woke up sick. That was 29 years ago....

 

[Fifi]

As a child I had lots of colds and infections in the ears and had my tonsils out at an early age. At school I picked up all the usual, mumps, measles and chickenpox. I was fairly fit and healthy after that though I was prone to still catching colds and coughs that were hard to shift. My health seemed to do downhill after the birth of my daughter. I had a caesarian which knocked me back a lot. Perhaps the first signs were there earlier than I realised. The first sign that something was definitely not right occured during the summer some ten years ago when I thought I had the flu. My doctor said that the summer colds or flu could be worse than those in the winter. I had time off work and recovered a bit. I repeated this pattern a few times until complete breakdown. I have to say that my deterioration in health also coincided with a difficult and stressful period in my life.

 

[bluefish]

childhood exposure to DDT?

Regarding this thread, prior to getting ME I had
IBS (caused by gluten problems)
Raynaud's Syndrome (not the disease which is progressive)
and a congenital inner ear disorder similar to Menieres Disease.
The inner ear disorder was diagnosed four years before the onset of ME. The ME followed repeated viral throat infections at a time when my son was diagnosed as possibly having glandular fever, and I never fully recovered from the series of throat infections. A subsequent cold infection a couple of months later and a period of stress produced the onset of ME. Made a recovery back to work then two years later the two illnesses of ME and inner ear disorder combined to knock the feet out from under me.

However, what I am interested in is the exposure to DDT that we had as a family when young in the 1950s. DDT was a toxic chemical sprayed liberally on fields to act as an insect-killer and as kids we played in those fields not realising the contact we had to this chemical. All three of us kids have had worse health than our parents. DDT was banned because it was disturbing the life cycle of birds, and there was a time when birds flying overhead would drop soft-shelled eggs as they flew, and their eggs failed when in the nest.

I don't know what the long-term health effects are of DDT exposure for humans.

Also we were in contact with other kids who had polio although none of us contracted the illness, but I have read that a number of people subscribe to the theory of post-polio illness even if the illness manifests many years after exposure to polio.

I have wondered if these two things played a part in the later development of health problems including ME, by creating a predisposition to becoming sick.