Early Warning Signs

[HopingSince88]

I fell ill in 1988 when I was 35 years of age. However, I think that there were early signals from childhood that I may have missed:

1) During grade/elementary school I must have missed 40 days of school a year due to swollen glands and sore throats. My doctor never took my tonsils out though.

2) I had high energy in spurts, but no stamina. I could run faster than most kids, but would peter out pretty quickly. In high school I could not play soccer or basketball as my body just could not handle the energy requirements. Instead I played baseball/softball, golf, archery...etc. I was strong and athletic, but no stamina.

Curious about what others may have experienced. Did you also have stamina issues or other early signs?

 

[Victoria]

Well yes, Hopingsince88, now that you mention it..................

But I have not been officially diagnosed with CFS (only FM), although my Dr agreed last year, that it is highly likely I do have CFS as well.

When I was young, I was tall & thin & quite a good runner. But somewhere in primary school, maybe about 8 or 9, I suddenly was unable to run (or keep up the speed as you say). I put it down to a serious tinea problem with my feet which got infected. I was unable to walk properly for some time & learned to walk on the balls of my feet at one stage, because the pain & pus infection was so bad under my feet & between my toes. It was suggested that I picked the tinea fungus up at the local swimming pool & was banned from attending school swimming lessons there from then on. Dont't remember ever getting into a pool in high school or later.

I never, ever did learn to swim & this (amongst other reasons) is why I can't swim to this day.

I always presumed it was the foot infection which stopped my potential running career. I was just never able to run from about this time in my life.

I went on to love indoor pursuits & the creative arts & do to this day. I was only ever good at volleball in high school - I was still taller than average, & could reach much higher than most players. I certainly didn't play much sport (if any) in my teenage years. I could also hit a softball quite well, but never did well running around the square.

 

[Lesley]

By my early 20s, if I didn't get enough sleep I would get the feeling that I was coming down with something. If I slowed down, I would get better. During law school, during my first semester finals I got "sick" after a few late nights and struggled through them. After that, I decided I had to be ready before the exam period began. I didn't get CFS until 20 years later.

My daughter has never been able to do without sleep. She was diagnosed with CFS at 10.

 

[Esther12]

When I as a teen I went through a period of passing-out semi-often, and having really low blood pressure when I stood up. They measured the difference in my blood pressure from when I was lying down to standing up, and apparently it was really unusually big. I never really worried about it, assuming it was just a teenage growth thing that seemed to stop fairly quickly (a year or two?), but now it sounds quite like POTS, and that seems to be related to CFS. It's difficult though - CFS can have so many things associated with it, and most people probably have some health problems in their life which could be related to CFS - us patients are most likely to look for them though.

Energy wise, I always seemed to be okay. I was terrible at long distance running, and a lot of 'stamina' things, but I always felt like that was because I found them boring? Maybe it was an energy thing, but I was always fine (for example) playing tennis for hours.

edit: Just saw Lesley mention sleep - I've always slept in late, and would go semi-nocturnal in most school holidays etc. I think I've always been a bit less good a dealing with less sleep too (going through a period at the moment with builders about - not good).

 

[HopingSince88]

Victoria, Lesley and Esther - thx for your input.

Now that I have read your posts I realize I had the low blood pressure, and dizzy when rising POTS symptoms in childhood too.

 

[ukxmrv]

None of my family are sporting and being forced to do exercise at school was resisted by all. We did live along way from our school and there was a long walk (with hills) to and from there each day. It is interesting that none of us enjoyed sport. We did dance classes and amatuar athletics but no aptitude or real interest. We had lots of hobbies, played outside (esp in the pool), made tree houses, made our own movies and did not sit in front of the TV - but not active sport.

My early warns signs would have been the blood pooling in my legs (and many of my siblings) due to POTS. We all had the blue patchy legs and it was not until I went to a talk by Vance Spence (of MERGE in the UK) and he showed a photos that showed what it was.

I have terrible co-ordination and could not learn to swim, ride a bike, drive a car, dance. Was always a bit of a geek. Most of my siblings are as well.

This blood pooling problem may have caused the top half/bottom half disparity seem in myself and some siblings. I had a waist measurement that was much smaller than my legs. Much more so than a normal "pear shaped figure". Delays in developing breast in the girls of my family.

None of us with ME or a CF like illness ever reached normal height for our family. None of us were ill before puberty in my siblings.
None of these problems were apparent in my parents or any of my living relatives that I have met.

Nieces and Nephews are all developing allergies and frequent infections/sore throats etc. Severe allergies in my grandparents. Lots of early deaths to cancer in Grandparents and GG.

We all started out as morning children but when we got to about 11/12 changed into night owls and stayed that way. This is common in my extended family.

Myself and my siblings were all very healthy children with only normal childhood diseases. I didn't become ill (acute viral onset) until I was about 20/21.

Lots off severe allergies in my extended family but I'm the only one of my siblings to have any. Then again we all need "fresh air" and that may show an intolerance of something in our environment. That trait is also common in my extended family (windows open all the time).

XMRV+ (with other family members with ME or CF-like)

 

[kat0465]

I got sick, in 1990,but like you had been sick off and on my whole life.
same here on the running like the wind for a short spurt, then wham! it was gone. i also played softball, but that was the only sport i could handle.
tried track( hey i was fast) i couldnt do it, or basketball, or volleyball, or tennis.
i was always so sick especially with tonsillitis and junk like that. so at 13 they yanked my tonsills out, i was sick when they did the surgery, and stayed in the Hospital for over a week.
funny i still have sore throats, and have the red crescents.
Long story short, i did have major stamina issues. they have just got worse and worse over the years
i keep hoping i will read on here theres something to help us, i was hoping i would turn 45 and be healthy again maybe 46......sigh.

 

[serenity]

i did hate gym, & had frequent sore throats.

 

[Victoria]

Interesting reading all your posts - I can relate to many of them. I could never do do anything in gym that involve turning my head upside down - like a somersault. I looked a normal healthy child up to the age of seven or so. Then all weight dropped from my body & despite eating normal meals (that I remember), I looked so skinny, you could see all my ribs - i looked like a starved child from a third world country.

The difference in my appearance is astronomical. It looks like my parents were not feeding me. If I can find a before & after photo I will scan it in to this post. Teachers were always asking me if I felt ok. I always looked sick.

How odd, that change in body appearance.

Always liked to sleep in too. Can't remember if I was ever sick as a child. I do remember having stomach pains & one night my parents called the Dr in the middle of the night because they thought I had appendicitis.

I wish I could remember my childhood, but I was so miserable in primary & high school, I think I have blotted it nearly all out. Might need a hypnotherapist to find out what happened.

 

[Noro]

I used to have some strange gland/throat problem as a child, I seem to remember that it used to kick off around this time of year, with an annoying cough. Then as a teenager I developed a tendency to faint, later I was told I had slightly low blood pressure. Kind of similar.

 

[Sing]

Yes, I had stamina problems, dizziness when standing, sometimes to the point of my vision going dark; I needed more sleep/always steady sleep to be able to function and I was a light sleeper. I think I got sicker than my siblings especially with vomiting, bronchitis and ear infections, but I am not certain. As a teenager definitely wasn't "healthy enough" to stay up late, do drinking, drugs or smoking--those excesses, but needed to stick to a healthy lifestyle. I'm grateful for that. My joke when a health care interviewer asks me if I drink, smoke or use drugs, is "No, I"m not healthy enough to do that!" They shake their heads with this seeming contradiction, but it is true.

Sing

 

[HopingSince88]

Kat0465-My tonsils are still here...but I also have the "red crescents!"

Victoria - I was also emaciated looking. I distinctly recall that I weighed 48 lbs in 4th grade, when my sister who was 3 years younger weighed 67 lbs. All bones and skin with not much muscle. Although menses started in a normal time frame (age 12), my breasts did not develop until I went on the pill at age 21. My then fiance had an expression that went something like: "You are a pirate's treasure - a sunken chest."

 

[ukxmrv]

Hoping, We started out emaciated looking but when we hit puberty developed this strange upper/lower body split. Tiny skinny arms, very visible ribs and then huge legs.

Our family diet was very good. There were no signs of allergies then.

I really would like to make sense of this one day.

 

[muffin]

YES!! Early ODD signs that I had and am seeing in my young niece now

I fell ill in 1988 when I was 35 years of age. However, I think that there were early signals from childhood that I may have missed:

1) During grade/elementary school I must have missed 40 days of school a year due to swollen glands and sore throats. My doctor never took my tonsils out though.

2) I had high energy in spurts, but no stamina. I could run faster than most kids, but would peter out pretty quickly. In high school I could not play soccer or basketball as my body just could not handle the energy requirements. Instead I played baseball/softball, golf, archery...etc. I was strong and athletic, but no stamina.
Curious about what others may have experienced. Did you also have stamina issues or other early signs?

-->> Number 2, the high energy in spurts but no stamina statement hit me hard. I have long known this was part of the early odd symptoms that I had that were tip off to something NOT right. I too could run super fast but in short spurts, never long hauls. Never. Ditto with the strong and athletic but again, NO stamina and had to rest. Now since my niece was about 3 years old I have watched with great dismay that she too will run like the wind in spurts then have to sit down and rest (and sweat horribly for a skinny kid, as I did too). She is also very athletic but is a klutz and falls all the time smashing her head and geting bruises, etc. Same as her aunt. She also had started with the "growing pains" in her knees/thighs when she was THREE YEARS OLD. My growing pains started later in childhood and were horribly painful. My sister and I are watching her for the other odd symptoms I had like sleep disorder (not able to fall asleep, getting up several times a night to go to the bathroom), restless limb movement (arms/legs), bowel issues, and hyper activity (can't stop moving).

And I and my othe siblings (with POTS/Conective Tissue Disorder) were also ultra thin. I was too thin until I got CFIDS and went on Elavil and put the weight on. Some came off but I am now not a skinny person. Possibly all that non-stop movement and maybe the connective tissue disorder MAY have played into this ultra thin situation. I was 5'11 and would weigh in at about 115/125. For 5'11 that is thin - no fat anywhere and very little muscle. And I ate normal amounts of food (no food issues) but was still so painfully thin.
The stamina part is rather telling to me. I bet if others thought back to their childhood they too would realize that they might have had fast energy/speed but no real stamina. Wonder if that is brain related and/or mitochondria related - or other(s).

 

[Resting]

It is interesting now that we have hindsight. I had problems breathing and sharp pains in my ribs but attributed it to asthma (20 years later I found out it was pleuricy). I could run fast when I was young but had no endurance. By junior high school I could no longer take gym class. I had many respiratory problems all through childhood. With each bout my stamina decreased. I also started passing out especially in the shower. I always took much longer to heal from minor medical procedures than most. My hands and feet would always get really cold and white when I was outdoors (even wearing two pairs of gloves) and then when I went inside they got beet red, itched, and stung and would swell. I have subsequently been diagnosed with Raynauds phenomenon. There were clues from my childhood. I think there is definitely a predisposition to this illness, perhaps genetic?

 

[lucy]

28 yr old now, always thin, unable to gain weight otherwise than heavy excercise, never sick except for seasonal cold, never fever more than 37.5. Raynauds since 11 yr old (white fingers/palms/feet). I had pains in the knees since I was little, even before I was able to speak. Later they would come and go. Then three years before the onset I had painful lymph nodes in the armpits, which seems to be the first sign of strange things happening to me, before I would consider myself very healthy if not pain in the knees. Then EBV related mononucleosis diagnosed with the virus as most likely reactivated. Then fibromyalgic pains and CFS as of now. Before getting sick, I was doing lots of lots of sports. My dr says maybe it is the reason why mono was mild on me. I have always had low RBC and low blood pressure, and now, if I eat a clove of garlic, get pretty dizzy from supposed drop in the pressure. We should maybe organize polls about special possible early conditions to see if there any significant percentage of CFS people with them before the onset.

 

[kerrilyn]

Now that I think about it I had no stamina as a teen either, hated gym class. I think I was normal child and then my hormones became a problem and I missed a lot of school. Right before all my problems started, I got a virus and a very high fever. I struggled with energy and stamina and low blood pressure throughout my teen years. I had to nap after school each day and then couldn't get to sleep before 1 am, so my disrupted sleep pattern started back then and it's never improved. When I was in my late teens I got mono and I lost even more stamina and energy. The rest as they say, is history.