Sudden or Gradual Onset?

[Hanna]

I had a sudden onset in june 1998, was unable to exercise at all untill 2000 (EBV found then diagnosed CFS/ME), then a partial remission untill 2006-7 (could work hardly 2-3 hours a day) and relapsed since with gradual deterioration (use a wheelchair to go out, no shopping etc...).
Before june 1998 I was healthy, except sensitive gut and amybiasis since 1997.

 

[barbc56]

Mine, like others above was sudden after a severe broken arm where I had two operations.

I think I started to burn out after 35 when I had my second daughter, but having kids, working full time as well as being a single mom would exhaust anyone. I have always had sleep issues and over the years, my energy dwindled. Even though some of these sleep issus have been addressed, I am some of the symptons have lessened but not that much though it is relative. It's so hard to sort out.

I did not have the pain/achiness until after I broke my arm. I thought I was getting the flu. Now the pain is pretty chronic. I always ache but sometimes can ignore that. Sometimes.

About five months before I broke my arm, I had an infection from I had a root canal where one side of my face was extremely swollen and the infection was about to go to the bone. I was on very strong antibiotics, starting with an IV for six weeks.

My mother had sleep issues as well as severe depression, and possibly undiagnosed Graves Disease which my grandmother and two aunts on my mother's side also had. One aunt had arthritis which I think is autoimmune but atm, the name excapes me.Years ago, I also was hyperthyroid but it dissapeared after a few months I am now hypothyroid.

Go figure. It's so hard to sort all this out.

This is all very interesting but dang why did it take this DD to have that interest.

Barb C.:>)

ETA My aunt had rheumatoid arthritis which is autoimmune.

 

[Whit]

My illness was sudden in onset, though there have been different stages. But all of the changes were sudden.

Went to Jamaica, 2 weeks after getting home was suddenly lightheaded one morning, felt like I had a fever, and went to school nurse and found my temperature dropped about 2 degrees, was lightheaded for 2 years. Temperature is still always low, 7 years later. 95-97 degrees. The day I have a normal temperature I will declare victory, because that started the first day of weirdness, and hasn't gone away since.

Went to India a couple years later, sudden onset of CFS symptoms one night. Didn't get better until I came back to the states, when I recovered to about 80% health. Then a year later after working a job in the freezing cold for 4 days, I got a strange cold, the CFS symptoms came back same as in India, and 4 years later and they still haven't gone away.

All these changes happened suddenly, and then stayed constant for periods of time until the next sudden change. Except for the last 4 years, in which I've slowly gotten worse without hardly any periods of improvement.

 

[liquid sky]

My onset was sudden following a vaccination. It stated severe and has remained severe for 20 years.

 

[Sing]

Barb C., just a little question: What does DD mean?

 

[SOC]

So many of these stories sound like there's some background immune issue impairing immune function so that when an immune insult occurs we have a flare-up of symptoms. Perhaps the strength of the flare and whether we consider it an onset event maybe depends on the weakness of the immune system at that time and/or the virulence of the infection.

If that were the case, then the background immune issue could be genetic, an early (even asymptomatic) infection, a retrovirus, something autoimmune, some combination of the above... who knows? Like the HIV virus, it doesn't have to cause significant symptoms by itself, it could be eating away at the immune system quietly for a long time.

In the case of clusters, perhaps the group is exposed to the immune-affecting infection/toxin followed closely by a virulent infection that might not otherwise be a big deal.

In the case of sporadic ME/CFS (not sure we won't find small clusters around sporadic cases once ME/CFS can be diagnosed correctly), the initial infection/toxin exposure may have happened years earlier and it isn't until we run into repeated immune insults and our condition deteriorates sufficiently that we acknowledge ME/CFS.

This might explain why some of us have what appears to be a gradual onset and some appear to have a sudden onset -- it just depends on what broke the camel's back, a slow increase in the load, or a sudden big load.

Just thinking.....

 

[KiwiOz]

Hi Sing, My operation was 3 years ago & i became ill around 5 weeks later. I also had 2 blood transfusions after the op but still while recovering in hospital. I always thought maybe it was one or both of those transfusions that could have somehow given me CFS but when i was finally diagnosed with CFS 2 & a half years after the op by a Rheumatologist he believes i got it from the anaesthetic. So not really sure what to make of it all. I was 35 at the time & in good health.
I am interested that you also had problems after surgery cause after a lot of reading i haven't been able to find much on CFS in relation to surgery so it is nice to meet someone else who has had a similar experience

 

[Sushi]

Hi Sing, My operation was 3 years ago & i became ill around 5 weeks later. I also had 2 blood transfusions after the op but still while recovering in hospital. I always thought maybe it was one or both of those transfusions that could have somehow given me CFS but when i was finally diagnosed with CFS 2 & a half years after the op by a Rheumatologist he believes i got it from the anaesthetic. So not really sure what to make of it all. I was 35 at the time & in good health.
I am interested that you also had problems after surgery cause after a lot of reading i haven't been able to find much on CFS in relation to surgery so it is nice to meet someone else who has had a similar experience

Hi KiwiOz,

Lots of people have reported that the ME/CFS symptoms started after surgery but I don't know if anyone is sure why.

Best,
Sushi

 

[KiwiOz]

Hi Sushi,

That is good to know. Thanks

 

[alex3619]

Lots of people have reported that the ME/CFS symptoms started after surgery but I don't know if anyone is sure why.

Hospitals are also great places to pick up bugs. Staphylococcus for one. There could be many other reasons of course, but if we have a weakened immune system before surgery then the chances of catching something post-surgery would be even higher.

 

[Sing]

An old nurse once told me that anesthesia is harmful to the nervous system and can cause long lasting problems. This was so different from what I had understood from our surgery-happy culture. She advised to avoid anesthesia, surgery, if possible, and that includes for animals too.

 

[justy]

I have had a number of surgeries in childhood - including a very long heart operation at age 5. Then adenoids out at 10, tonsils at 12. 4 years ago - whicle still recovering from pneumonia and terrible measles i had a LETZ procedure on my cervix under local anaesthetic - it was a pretty horiible procedure and my health was very fragile from the previous years immune problems and lung issues. The nurse told me i could g back to work the next day - i was part time gardening so she said leave it a couple of weeks - but that if i had an office job i would be back to work that afternoon.
I couldnt get out of bed for 2 weeks. I dint get an infection or anything like that - BUT when i did force myself out of bed for a short walk i had a massive panic attack and it was all down hill from there really. (i allready had undiagnosed mild M.E /partial remission (it's complicated))

Interesting discussion.

Another thing i learnt from all that is that minor cervical changes are common in women with M.E. They told me i had a persistent HPV infection and couldnt understand why it wasnt clearing - they kept an eye on it for 4 years before i agreed to the treatment. Since then i have also discovered that women with sarcoidosis (an autoimmune disease that i have my eye on) also have these sort of problems with cervical changes which later turn out to be nothing. Ironically after many biopsies and colcoscopies, when i finally had the procedure they said all the tissue came back clear, even though they could physically SEE the changes.
Sorry wandering off topic - i just wonder if this is for some of us an autoimmune reaction to these constant assaults on the body.
All the best, Justy.

 

[Whit]

I may be misunderstanding what some of you are saying, but from what I understand about clusters, they are not evidence of an infectious agent causing CFS. You find clusters in illnesses that aren't infectious. Anything that's random will wind up forming in some clusters. Add that to the fact that CFS is way underdiagnosed, and a random cluster could cause some awareness about CFS, which gets the word out and leads to people suddenly flocking to it as the answer and it's suddenly either overdiagnosed, or it becomes a cluster of accurate diagnosis because of the awareness generated by the random cluster.

Kind of off topic, but oh well.

 

[alex3619]

The size and scope of some of the epidemics are clearly that: epidemics. They are not random clusters. Too many people come down with it in too short a time. Several of these were large, in hospitals affecting staff, and following polio epidemics. The Royal Free Hospital incident comes to mind, though the Los Angeles epidemic in 1934 was similar. However not all of the "epidemics" are well characterized - some of them might be random clusters. In the last decade and a bit it appears that outbreaks are being ignored. The secondary evidence of outbreaks is strong, but nobody is announcing them.

A second point is this: the single biggest factor inducing CFS (this is not ME research) is the virolence of a pathogenic attack. There is no better predictor. This applies to Epstein Bar virus, Q fever, SARS and Ross River virus. It probably applies to other triggers as well. What is not known if these cause the disorder or just permit it to take off. For the majority of strictly defined patients we now know that CFS is B cell mediated. That makes it either pathogenic or immune related, though of course both the nervous system and hormonal systems (not just endocrine) can be impacted by the immune system.

Bye, Alex

 

[Whit]

Interesting, I don't know enough CFS history. Just don't have the energy to read up on as much as I'd like. But I agree, IMO, CFS is either infectious or auto-immune. At least in my case, those two make the most sense. Though anything could make sense with the right explanation.

 

[Ian]

CFS is either infectious or auto-immune

or both. CFS is just a collection of symptoms. There is no test for CFS. It could be caused by a thousand different things. A fair few are known.

 

[barbc56]

Barb C., just a little question: What does DD mean?

Damn disability. I had seen it on another board. so forget others may not know what I am talking about. Oopsie. Sorry about that.

Barb C.

 

[SOC]

or both. CFS is just a collection of symptoms. There is no test for CFS. It could be caused by a thousand different things. A fair few are known.

Or both in that an infection causes an autoimmune condition.

 

[Whit]

or an auto-immune condition causes an infection. Just kidding, but you never know...

 

[aiden424]

April 16, 1986. Was fine the day before and had worked. Woke up with what felt like a really bad flu. Was bedridden by the end of the day and very, very sick since. I know the date because I went to the hospital.