Discussion in 'General Symptoms' started by Nielk, Oct 10, 2011.
I have a similar story as heaps - considered myself healthy.
This does not appy to me. I was very healthy before becoming ill with CFS. I had slight sleep issues, but nothing that many people do not experience!
I suffered all the childhood diseases (doctor's daughter, he brought all the bugs home), and many ear infections culminating in an emergency mastiodectomy and benign brain tumour excision at age 19. After that I hardly had a day's illness, and all body systems worked fine. I was legendary for my energy, dancing, sailing, working with head and hands, until aged 59 in late February 2009 I got hit from behind by a flu-like illness that didn't go away.
Healthy except for a few minor autoimmune diseases (vitiligo, lichen planus, dermographism) and mild IBS.
Healthy apart from occasional ibs
Super healthy from 0-50 yrs, boundless energy, great sleep. Bloating, constipation, continuous sore glands, mono, and shingles preceded ME/CFS symptoms over a period of 3 years (also huge emotional and job stresses in my life). I still work full time now, at 53, but pretty much feel depleted and physically stressed every day.
BEFORE CFS AND FMS diagnoses:
gut problems - yes
ibs - yes
allergies - yes
sinus problems - yes, definitely yes
asthma and lung problems - yes
inflammatory bowel disease - no
cardiac and vascular problems - kind of-I had an irregular heart beat. The doctor said it was caused by Ma Huang Extract (wild Ephedra which I took for energy)
migraines - no
lupus - no
lyme disease - no
any autoimmune disease yes, Hashimoto's Disease
ASD syndrome - not sure what this is
sleep problems - yes
anxiety - yes
When I was very young, I was much like my son--sick longer with colds and flues and often in the hospital during the flu or cold or other illness for IV liquid. I had forgotten about that.
I probably should add that years before I was diagnosed I had on and off again months long bouts of swollen lymph nodes, fatigue and flu like symptoms. These would come and go. I cannot remember when they first started. So, who knows when I first had CFS.
Great thread, very interesting!
I always thought that I was perfectly healthy up until I got sick with ME following Glandular fever. With the benifit of hindsight, I think there was stuff going on all my life. Apparently I had very bad measles when I was quite young, don't know if that has anything to do with it.
I always had trouble standing on the spot, would get quite light-headed. I now realize that this was probably POTS, it just got worse when I got ME.
My stamina and energy were always pretty low. I have always been a very happy, motivated person, but doing things has always seemed as though it was harder for me than everyone else. When they did the 12 minute run at school, I always had to walk most of it and came last. I was pretty bad at sport in general. I tried hard, but I was just naturally crap at it. Very unco-ordinated, my dad described me as a clutz.
Around the age of 12-13 I remember feeling very tired all the time. I would make myself hideously strong coffee, but nothing helped. I just tried to ignore it. I also started suffering a lot of headaches, even went to the doctor about them, but he wasn't concerned and did nothing. About the same time I had a few instances of fainting and experiencing seizures when I had cut myself badly, or broken bone (there's that clutz thing). Again, doc wasn't worried.
Now that I come to think of it, all this would have been not long after my rubella vaccination.
My memory has never been that great, I don't have a lot of early memories at all. It's even worse now though of course!!
That's all that I can think of right now.
take care, ness
Hi, yes sorry to confuse you. It is so hard to describe something like this. I COULD swim etc and hike BUT i couldnt do it as fast as everyone else and always was wiped out afterwards and even though i was very active i couldnt get fit like you would expect. Every time i did the activity it was like i was back at base one. I just learned to push myself very hard because i so much wanted to be fit and feel healthy.
My hiusband always says i was the healthiest looking sick person he had ever seen!
Ive 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.
I hope that explains it better
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??
I've been reading here for awhile but when I saw this topic I just had to post because this is a question I had and also when I saw your post, Boule de feu, I was struck by how similar our 'cases' are.
I am 47 years old and have had ME/CFIDS since early 2005. I work 4 days a week and it's difficult and can't do much else. I think I had a kind of remission for the last two years or so but now I think I'm getting somewhat worse (either that or am wearing out from the chronic nature of this illness and in realizing I wasn't getting better).
I have two sisters and one has ME/CFIDS and one has FMS. I see some health issues in two of my nieces. I think most problems stem from my grandmother and she has an autoimmune disease.
I was sick a lot as a child with bad flus that would last two weeks and high fevers.
I got digestive problems at age five and have had them ever since.
I got bad PMS and bad MS.
Looking back I see that I had adrenal problems for a long time, at least since teenage years.
Couldn't handle cigarrette smoke and around it alot.
I had low level anxiety and depression for many years. Got stressed easily.
Always a light sleeper with vivid dreams but not a lot of nightmares and bad feelings at night before bed.
Never as much stamina as everyone else and could never tolerate junk food or too much sugar, caffeine or alcohol and especially had to eat a good breakfast or I'd feel yucky all day, which was partially from hypoglycemia I realized later.
Pushed myself too much because if I complained I was considered weak because there was nothing wrong with me and thought it was great that I became strong but now it's hurting me because I'm in the habit of pushing myself too much.
Everything went downhill after a series of flu shots--candida, bronchitis, bad cases of the flu, MCS, really poor sleep, brain problems, etc.
Then getting pregnant really sunk the nail in the coffin. Felt good except for 2 months of nausea all the time and extreme food aversion to where I could only eat bananas and dry oatmeal and I don't even like bananas. Lost the baby at 20 weeks and the doctors said from an infection and my naturopath/nutrionist said it could have been hormones. After that my nutrients levels were practically at nil and hormones and endocrine system was messed up.
Six months later I had a massive mercury detox (still wondering exactly what caused it and if the pregnancy or the drugs I took in the hospital had anything at all to do with it, or what. Not taking anything for detox but was remineralizing but I was doing that before I got pregnant) and six months after that a 'normal' case of flu and then ME/CFIDS.
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've already been thinking about that u&iraok, because so many of the UK psych lobby members push ME as being related to emotional stress and burnout through work.
My family is a good way of showing that this is not the case. Yes, obviously we are all different but my family does show how non-sporting people can get ME and not at times of stress of any kind.
We have quite laid back, relaxing non-sporty people in my family coming down with ME. It's an acute viral type on a previously well adult.
Can't obviously argue for everyone but our situations shows that for some people the trigger is not stress, sports, exertion etc.
Then again these may be different diseases. I tend to be a splitter than a lumper on the different criteria.
It may be that physical and emotional stress is involved with some people but given my families experience these people may have got it anyway - not enough data to determine this.
Then again these may be different diseases (the stress then collapse vs the no stress viral). We just don't have enough data to work it all out yet and some parties are not helping with poor diagnosis and criteria use.
Yeah, it would be nice if we could get the data needed to try and understand.
I like your description of your family: 'laid back, relaxing, non-sporty people' It sounds so nice.
I guess I'm addressing the athlete/workout scenario more to point out to people who think that if they were athletic then that means that they were healthy before they got sick that it may not necessarily be so, rather than to say that stress or exertion was the only or main trigger.
But you can probably guess that I'm more for the terrain theory than the viral theory and I do tend to try to find similarities and patterns when I probably shouldn't. I agree there may be many causes with common symptoms.
What a great thread! I'm going to weigh in ...
- 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".)
Thanks little bird, everything you say is so familiar - the bruising, extremely light sensitive eyes. feeling lazy or full on -going upstairs with hands and feet! yes! ive never heaqrd this mentioned before but that is me!
As an aside, we are about the same age, did you grow up in London or elsewhere? Just wondering as a bit of a weird thought ive been having lately about sporadic cases as opposed to epedemic cases. How would we know if others around us were coming down with similar things if we lived in a big city or lived in a country where the illness is not recognised or denied. Sorry to go off thread but it got me thinking.
All the best, Justy.x
Me too! It's like I could raise adrenaline at will. Of course you pay for being an adrenaline junkie later, lying face down with dark circles under your eyes on the floor of a crackhouse, er, I mean, on the floor of your own house.
I simply must try going up the stairs on all fours. I dread stairs.
Thanks for replying, Justy! It's always nice to hear you're not the only one with some of these symptoms (though I am sorry you have them, of course!).
I've been a Londoner all my life. I wonder these days whether I ought to move away for my health, but it's such an awful idea because while the environment out in the country might be better for me, all my social support is right here in the city. I guess I will probably be a Londoner for the rest of my life!
Yes - I used to use all sorts of things to prop my adrenalin levels up. Exciting music, work stress, exciting films, dancing around the house, sometimes even seeking out conflict (*innocent look*) - it's not pretty, but I did it, though I had no idea why I was doing it. And it worked.
Now my system is running on zero, I can't handle any of those things any more. Anything I find exciting has to be avoided!
Good luck with the stairs thing - it really is tons easier if you scamper up them like a little dog! ;o)
When I got sick with the "flu from hell" in 1990, age 29, I had no apparent stress that I can think of. I had been happily married for 5 years, was working at a job that I loved, financially secure, had several close friends, and so on. I had just undergone some physical stress (I got the start of the "flu" while on the plane coming back from a vacation overseas) but no psychological stress that I can identify.
Also, I had a lot more balance in my life than my earlier message shows. Sure, I had many high exertion days when I'd work all day and then go hiking with my friends. But there were also plenty of lazy Saturdays where I'd lie around the house all day reading with my cat in my lap.
Did I need to "escape" from my life? What a completely foreign concept. I LOVED my life! I felt like the luckiest person on the planet. (Actually, in spite of all that I have lost, I still feel lucky in many ways, the primary reason being my wonderful husband -- I wish everyone had a loving partner to help them go through this horrible illness)
As far as my own perception, and the run of the mill medical screening tests I had done before getting sick, I was healthy as a horse (other than the minor items I mentioned in my previous message). It's certainly possible that there was some unidentified health problem or infection under the surface and this "flu" was the catalyst. But psychological stress, as far as I can tell, was definitely not a trigger. It would be different if I'd gotten sick just after I got married (even happy changes are stressful), or right after a divorce or death in the family, or something like that.
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