Healthy until contracted ME/CFS?

[Nielk]

I wonder how many of us, compared to the "normal" population have had other health problems before being hit by ME?
I believe many had issues before like:
gut problems
ibs
allergies
sinus problems
asthma and lung problems
inflammatory bowel disease
cardiac and vascular problems.
migraines
lupus
lyme disease
any autoimmune disease.
ASD syndrome
sleep problems
anxiety

I am concentrating here BEFORE we got hit head on with ME.
It would be interesting to see if it is in greater concentration with ME people.
They keep talking that besides the "event" that brings it on, there is a pre-disposition.
It would be nice to put it in a poll format. I don't know how to do that.
It would be like our own personal study.

 

[sandralee]

Hi Nielk,

I am 59 years old, was diagnosed with ME in 1989, and am now housebound.

As far back as I can remember, I seemed to have far less stamina than my friends. I wasnt consciously aware of this at the time, but as I look back now, I used to avoid situations that called for high energy output.

I developed constipation and abdominal bloating in my teens, but I cant identify a precipitating factor, although there must have been one.

Despite these issues, I considered my self to be reasonably healthy, as I could carry on a normal life.

I contracted food poisoning followed by glandular fever (Mono) a month later, in 1975. Although I believed that I recovered from these events, this was the beginning of my multiple food and chemical sensitivities. I could still study and work full time at this stage, so I didnt realise that there was a real problem.

I am also totally blind due to a recessive genetically inherited condition.

My 23 year old daughter Samantha, was diagnosed with ME at age 8, but I was aware that she had decreased stamina, gut issues and food sensitivities from about age 3. She is only a little more functional than I am at present.

I will post on Samantha later, when my head clears a little.

My mum, who passed away 22 years ago, also had ME, although she wasn't diagnosed.

All the best,

Sandra

 

[anne_likes_red]

This - pre existing conditions - is something that I don't think is talked about enough

I was only young when I got ME and as far as I know I didn't have any of the problems on your list NeilK. (Don't worry I got plenty of them later!) But, I was aware of a low grade level of anxiety that I don't think was typical and I also developed sleep problems (especially problems getting to sleep) suddenly at around age 11; this was after a Rubella vaccine, plus possible exposure to mercury through breaking a thermometer.
I was non typical academically (2 years younger than my peers), and I was a lot more active than average. Not surprisingly Doctors had me down for a over achiever/burnout ("Yuppie Flu") diagnosis pretty quickly.

I had some other quirks with memory - that's basically how I skipped years of school - and synesthesia, that I have seen associated with Autistic Spectrum Disorders.

...Anyway, I guess you could add ASD type symptoms (?), sleep issues, and anxiety to the list. I think a poll would be interesting.

 

[Boule de feu]

This is such a great thread, Nielk. Thank you for this.

We always hear of the "sudden-big-flu-that-made-us-so-sick" but how were our lives before that?

I am 46 years old. 1/2 housebound (with rare outings) + 1/2 bedbound. It varies. I try to take one day at a time.

My mom said that I was already very sick at a young age. Very high fevers, many trips to the hospital, ice baths.

The IBS (severe constipation) + very vivid dreams and night terrors started around 5. To this day, I remember my nightmares. Going to sleep was a real challenge for me + staying asleep.

Then, around 6, I got a real bad allergic reaction to penicillin and I remember getting the nausea around 8. I always thought it was because I was a nervous child until I read about Chia's enteroviruses.

Around 12, I remember getting so many cankers in my mouth (I think we counted 14 at some point). I was the only one stuck with that. Nobody had them around me.

Around puberty, I started having very severe PMS with almost fainting episodes + severe abdominal pain.

By then, I guess everyone thought I was a bit weird because I was constantly complaining that something was wrong with me. During a soccer game, I would run and my face would turn so red from the exhaustion, my mom was worried that "I was going to explode". I was 14. The insomnia got worse. I could not sleep until 3 A.M.

Around 18, I had to give up medicine because I could not start the program - I had my first real episode of ME during that summer. In bed.

Things got progressively worse after that. I would catch everything. Hospitalized many times for mycoplasma pneumonia and mold allergies that turned nasty + many episodes of what I thought was food poisoning (now I know that they were very severe ME episodes).

Thyroid issues around 24.

I got very sick after my first pregnancy. Doctors thought I had MS. Lots of symptoms. I got a bit better after that.

Very severe allergic reaction to the epidural during my second pregnancy. Things went downhill after that.

The following years, I got several flu shots. What a mistake! I believe it wrecked my immune system. (My children also got severe hay fever allergies from them). In November 2005, I caught a very nasty virus that would not go away. By March 2006, I was so sick I had to stop working. The sore throat never went away + intermittent low-grade fevers.

Full-blown symptoms after that: Multiple chemical senstivities, fibromyalgia, IBS, erythromelalgia, severe migraines, etc.
Name it, I have it. =-(

(My daughter gets very sick when she is too tired. It never fails.)

QUESTION: My GP and I disagree on the date I got ME. He says it started after my second pregnancy because of the immune issues. I'm pretty sure I have been sick for a long long time. What do you think?

 

[Enid]

I was very healthy before ME struck 12 years ago Nielk - though a delayed diagnosis of hypothyroidism may have had some part to play in the downward spiral and all the severe symptoms of ME (sudden onset).

 

[Nielk]

I have suffered from sinus problems since childhood.
At age 14, I developed Crohn's disease.
At age 25, I started to become allergic to many things.
At age 35, I started with my migraines.
At age 47, I came down with a harsh stomach flu which very quickly turned into ME.

I am thinking that maybe something in our genetics makes us susceptible/weak in developing certain chronic illnesses.
Since our bodies have taken a toll, it is in such a weakened state that when the "ME trigger" hits, our body just gives up and goes haywire. Of course this is in pure layman's term. I wonder if this could be true for many more patients. I think too, that this "theory" can explain the diversity of our symptoms. I think wherever our weaknesses were before, will get hit the hardest.

 

[justy]

Hi all -bit too sick for a full reply today.
I like others have mentioned always had poor stamina and would go bright red with effort in sports but still be rubbish at them (lol)
I have had lung issues since a child and many many lung infections. i had constant flus etc as a child and also tonsilitis and quincy twice and pneumonia three times so far, always ill and yet always managed to have normal but not too adventurous life. In my early 20;s i had a lot of satomach bugs then developed ibs then m.e at about 25. then a 10 yeaqr remission form 29-39,ive been very sick sincre and this time the M.E is much worse/

Just been watching Rich Vanks talk from swededn -he talks about genetic predisposition and laso how low glutathione changes gene expression!

 

[ukxmrv]

I had an acute onset of ME and was completely well with no health problems when ME struck.
Severe viral symptoms (sore throat, glands and high temp) and then those same symptoms over and over again.

As a child I was very healthy and so was the rest of my family. We were rarely sick and had normal responses to childhood illnesses.

Only things that I would consider markers now (and with hindsight) would be the blotchy red legs I got with exercise (that my friends didn't get) and problems with things like balance and movement (could not ride a bike, dance, follow an aerobics class etc).

We were all crap at sports in my family but that didn't stop us trying. Even nephews/nieces / extended families have no interest in sports. Otherwise all very active. For example my siblings and I walked a long distance to school through difficult terrain and walking was normal to get anywhere for us.

In the extended family there is a history of severe asthma and allergies (including deaths), heart problems, early cancers and very severe osteoporosis. Plus thryroid growths seem to be striking many of them at different ages.

In my family ME doesn't strike until we are adults and there are few signs before then.

 

[Esther12]

I thought of myslef as totally healthy prior to getting CFS.

But I did have POTS symptoms as a teen (just thought it was a little phase... may have been a predisposition?).

I also had sinus problems, which never really bothered me - but I was amazed that three were people who would go out without taking tissues with them. It could be that inflamed sinuses are related to poor sleep.

Who knows? I got ill at 20, and felt pretty invincible at the time (and for quite a while after).

 

[Nielk]

My mother was sickly all her life. She developed Lupus in her thirties which developed many complications.
We are three sister.
My other sisters were healthy growing up. Just the regular flu or virus that are common. They do not have ME. (thank God)
I was sickly as I described above and came down with ME.

 

[L'engle]

I thought of myslef as totally healthy prior to getting CFS.

But I did have POTS symptoms as a teen (just thought it was a little phase... may have been a predisposition?).

I also had sinus problems, which never really bothered me - but I was amazed that three were people who would go out without taking tissues with them. It could be that inflamed sinuses are related to poor sleep.

Who knows? I got ill at 20, and felt pretty invincible at the time (and for quite a while after).

This describes my background prior to ME almost exactly.

 

[ahimsa]

I was healthy, with very high stamina, before I got ME/CFS at age 29. I used to work a full day (granted, it was a desk job, but still) and then drive for an hour to the Columbia River gorge, do a 6 mile hike (about 1500 ft elevation gain) with some friends, and then drive back home. I also lifted weights (split routine so I did not have to take a rest day!), did aerobics classes and stairmaster, ran 8K or 10K races, etc. My husband and I spent our honeymoon at Rocky Mountain National Park hiking on the trails. I would not have classified myself as an athlete but I was in reasonably good shape and had lots of energy.

I did have one health problem before ME/CFS and that was endometriosis. However, the pain from endometriosis was pretty well controlled (birth control pills and over the counter pain relievers) until AFTER I came down with ME/CFS.

Oh, I almost forgot one thing because it's mostly a nuisance and was never a serious problem for me. I had a type of tachycardia (not POTS but some type of supraventricular tachycardia). Briefly this is a kind of short circuit in the heart. It first happened to me when I was 11 years old. My heart always went back to a normal rhythm fairly quickly so I never needed any treatment for it (people who have a more severe case may need drugs or ablation surgery). Since it never stopped me from exercise or exertion, let alone working, it was never any problem for me but I guess it does need to be listed as a health problem.

There are several athletes who have come down with ME/CFS (Michelle Akers comes to mind). I'm guessing that there are people on both sides of the spectrum, from very frail and sickly all the way to very healthy, who later came down with ME/CFS. I don't know which is most common.

 

[justy]

Although i have said i had health problems i also considered myself normal in that i could swim a mile a day and walk for whole days hiking etc. I also have endometriosis diagnosed at age 23.

 

[ahimsa]

Although i have said i had health problems i also considered myself normal in that i could swim a mile a day and walk for whole days hiking etc.

Hi Justy,

In an earlier message you said that you felt that you had poor stamina. Swimming and hiking this much sounds like lots of stamina! Did you mean that on some days you had poor stamina and other days you were okay? Sorry if this sounds like I'm questioning you -- it just means that I'm easily confused.

I also have endometriosis diagnosed at age 23.

There is definitely a correlation between endometriosis and ME/CFS. Here's an extract from an old news article on endometriosis (copied so many times that I've lost the original source):

A research team from the Endometriosis Association in Milwaukee; the National Institute of Child Health and Human Development, Bethesda Maryland; and the School of Public Health and Health Services at George Washington University in Washington, D.C., carried out and analyzed a survey of 3,680 members of the Endometriosis Association who had endometriosis. They found that among these women:

up to 31 percent of those with co-existing diseases had also been diagnosed with either fibromyalgia or chronic fatigue syndrome and some of these had other autoimmune or endocrine disease

chronic fatigue syndrome was more than a hundred times more common than in the female U.S. population generally

 

[Mij]

I was a very healthy, productive. athletic energenic 29 yr old who had energy to give away before I became ill on February 7 1991 at 7:12 am. I was never sick a day in my life before that, not even the flu or a cold.
Noone in my family has any illnesses either.

 

[Valentijn]

Migraines started at 11, and OI symptoms (very sporadically) at 12.
Likely PEM response to working out started in mid 20s.
Full ME onset 8 months ago at age 33.

 

[Sushi]

I wonder how many of us, compared to the "normal" population have had other health problems before being hit by ME?


I am concentrating here BEFORE we got hit head on with ME.
It would be interesting to see if it is in greater concentration with ME people.
They keep talking that besides the "event" that brings it on, there is a pre-disposition.
It would be nice to put it in a poll format. I don't know how to do that.
It would be like our own personal study.

Hi Nielk and everyone else,

I am one of those who can't really say when it "became" ME. I had some abnormal stuff even as I child--probably ANS related. My Mom almost certainly had ME though she died before getting anything other than a psychiatric diagnosis (also a lot of ANS stuff).

I started getting more symptoms as a teen--sinus, OI, sick with colds and flu more than most, migraines. Then I sort of held steady at this level for many years. I worked full time taking a lot of sick leave and lying flat on weekends. Had a few periods of greater severity that would last a few months.

Then in 2005 I had a series of big toxic exposures, huge physical and mental stresses that went on for over a year, and at that point really became disabled.

I've climbed out of the worst of that hole with some good therapies, but am still not by any means living a "normal" life. I can take care of myself, take a university course etc., but can't go over my limits. I know that danger--relapse into bedbound.

So I'd say that for me, there are definitely genetic predispositions as well as more than "normal" amounts of toxic exposures including many, many vaccinations for international travel.

Sushi

 

[stp]

I had my share of problems as a child. I caught pneumonia a few times, had a lot of ear infections and needed tubes put in at one point, bad allergies to dust, mold, hay, ragweed, etc such that I had allergy shots weekly for a period of years, also allergic to penicillin(hives), and some mild exercise induced asthma.

All the while I had an amazing amount of energy, never tired, and was boarder line hyperactive. As I approached my teen years, I out grew the asthma and the sicknesses that were common in my childhood. I also had an endurance, energy, stamina that would amaze my friends. I could go all day and still have gas in the tank and even was a cross country all star runner in high school.

I have struggled with depression and social anxiety on and off since I was a kid and went on Effexor when I was in college. My immune system was very strong from my teen years all the way to about 30 and I was never short on energy during that time. Then I got a bad flu and never was right again. All the usual stuff came along with it. Fatigue/PEM, reduced stamina, easily bruise, muscle twitches, joint/muscle pain, skin rashes/itchiness, get sick easy and have trouble fighting it off, etc.

So, yes I was a bit sickly as a kid now that I look back on it but had outgrown all of those issues roughly by age 10.

 

[heapsreal]

I was healthy and athletic, working fulltime and able to exercise hard and was a good sleeper lol. then within the space of 6 months got cmv mono, chickenpox and env mono and never really recovered and was the start of my cfs/me and my poor sleep. I also wonder if someones previous level of fitness helps them cope or gives them a higher level of function with cfs then those that werent as physically fit.

cheers!!!

 

[jstefl]

Neilk:

I am really glad that you have started this thread. Up until a few years ago, I believed that my CFS started in January 1991 with a cold.

I now realize that I was not completely healthy before that. I had a sore throat that never went away, occasional severe headaches, a very touchy stomach, continuous sinus infections, and occasional heart problems.

Since I hit bottom in 2005, I have done a number of things that have improved my condition and reversed some of those early symptoms. Valcyte has really helped with the headaches and heart problems, and oxymatrine has really improved my stomach. In addition, I have taken Artesunate, LDN, and Richs methylation protocol.

Even if there is a genetic component to our illness, I believe that we can significantly improve our condition.

John