• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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How did your CFS start?

How did your CFS start?

  • With allergies

    Votes: 2 4.4%
  • With flu-like symptoms (not being allergies)

    Votes: 25 55.6%
  • With a known infection

    Votes: 18 40.0%

  • Total voters
    45

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
I can tell you the date and time it started - worst flu I'd ever had with fever, swollen lymph nodes, night sweats, sore throat, shortness of breath with slight exertion, off work for three months, and then returned to part-time work for two years until I had one too many relapses and then couldn't work at all. I used to be very athletic and work on my feet 40hrs/week. At that time, 1990, very few doctors were aware of CFS, but my primary doc agreed this is what I had.
 

Forbin

Senior Member
Messages
966
I'm not sure if I should put "flu-like symptoms" or "known infection." I had severe flu-like symptoms a couple of weeks prior to sudden onset with dizziness, weak legs and a sense that I was going to faint (my first guess was food poisoning). Blood tests showed that I was fighting some kind of infection (almost a month after the "flu"), but, despite tests for obvious suspects like EBV, the specific infection was never identified - so, in that sense, it wasn't "known."
 
Messages
15,786
Something interesting I noticed while reading about the current enterovirus circulating in the US - the same one was having an outbreak in the Netherlands at the time which I got sick. Maybe a potential trigger?
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
The first symptoms I noticed was energy slump in the mornings which was very unusual for me and dizziness...........then after some months all hell broke loose.
 

Gingergrrl

Senior Member
Messages
16,171
Mine started with acute mono from EBV immediately after a minor surgery in March 2012. I thought I had recuperated from mono and went back to work full time while planning my wedding.

In Jan 2013, I caught an unknown virus and two weeks later started having unexplained tachycardia. It has all gone downhill from there and I was first diagnosed with Hashimotos and later officially with CFS due to chronic re-activation of EBV.
 

worldbackwards

Senior Member
Messages
2,051
O.K.... It was a few things... I first got an allergy after a bit of a tummy bug, but was misdiagnosed with scabies. I then proceeded to over-apply malathion lotion and started to get increasing weakness in my neck and legs, also increasing allergies and fatigue, which moved towards becoming PEM over a couple of months. After that I got a virus and the roof seemed to come in for about two or three weeks. I seemed to recover for a couple of weeks after that, after which I got the lot.

Plenty to get stuck into there, I think!

Interesting to see how few people meet the cut-and dried 'virus > illness' model on here.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Mine started with acute mono from EBV immediately after a minor surgery in March 2012. I thought I had recuperated from mono and went back to work full time while planning my wedding.

In Jan 2013, I caught an unknown virus and two weeks later started having unexplained tachycardia. It has all gone downhill from there and I was first diagnosed with Hashimotos and later officially with CFS due to chronic re-activation of EBV.

Mine also started with Mono, no surgery around it though. Also had flu shots previous years and did take accutane for acne for some time. Wonder if those things made more susceptible?

GG
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
Seems it's not simple for any of us.

For me - I had a severe 'flu in 2011, followed by 4 more fairly severe viral infections over the next 7 months. I was functioning, but beginning to worry about my health and how I would manage to keep going.

I also had some gynae problems (now resolved), and so had a general anaesthetic in early 2012.
I never returned to work.

So which was onset for me?

The first virus (after which I wasn't quite well, but still working) or
the general anaesthetic (after which I didn't work another day)?
 

Hip

Senior Member
Messages
17,824
On my website I compiled a list of known triggers of ME/CFS, and factors known to contribute to the development of ME/CFS (all of which are backed up studies or doctor's observations). These are as follows:


Microbial Causes and Associations of Chronic Fatigue Syndrome

Enterovirus. Enterovirus infection (with coxsackievirus B or echovirus) is associated with chronic fatigue syndrome. 1 2 3 4 5

• Parvovirus B19. Parvovirus B19 infection is a known cause of chronic fatigue syndrome. 1 2 3
Chlamydia pneumoniae
. Chlamydia pneumoniae is a bacterium known to cause chronic fatigue syndrome.1
Coxiella burnetii. Coxiella burnetii is a rare bacterium that causes Q-fever, and has also been known to cause chronic fatigue syndrome. 1 2
Brucella
. Brucella is a bacterium known to cause chronic fatigue syndrome-like symptoms.
Giardia lamblia, a protozoan parasite that infects the small intestine causing giardiasis, has been shown to later lead to ME/CFS in a small percentage (around 5%) of individuals infected with it. 1 2 3
Human herpes six virus (HHV-6)
. Active infection with HHV-6 has been found in chronic fatigue syndrome, and this may be an exacerbating factor in CFS. 1 2
Epstein-Barr virus (EBV)
. EBV infection may cause ME/CFS-like symptoms for a short period of several months, and sometimes for longer periods. Active infection with EBV has also been found in chronic fatigue syndrome, 1 2 and this may be an exacerbating factor in ME/CFS.
Mycoplasma bacteria infection, from species such as Mycoplasma fermentans, Mycoplasma hominis and Mycoplasma penetrans, may cause or contribute to ME/CFS symptoms. 1 2
Other pathogenic microbes linked to ME/CFS include: Herpes simplex I and II, cytomegalovirus, HHV-7, varicella zoster virus, hepatitis C virus, HTLV I and II, neurovirulent influenza A, Ross River virus, SARS coronavirus, and Toxoplasma gondii.

Factors Linked to the Development of Chronic Fatigue Syndrome

Exposure to organophosphate pesticides has been implicated as a predisposing factor to ME/CFS. 1
Exposure to significant quantities of mold toxins (usually from water-damaged buildings) is a predisposing factor for precipitating ME/CFS (certain species of mold contain potent neurotoxins). 1 2
If corticosteroids (immunosuppressants) are given during the acute phase of a significant respiratory infection, this has been found to sometimes lead to ME/CFS. 1
Exposure to ciguatoxin can result in chronic fatigue syndrome. 1 2
Exposure to ionizing radiation is a cause of ME/CFS-like symptoms (post-radiation syndrome). 1
Cancer patients who undergo radiation therapy or chemotherapy quite often develop ME/CFS soon after. 1
Chronic fatigue syndrome can sometimes ensue after an episode of meningitis.1
Chronic fatigue syndrome can very occasionally appear after having major surgery.
Sometimes a major physical trauma — particularly a motor vehicle accident — can precipitate ME/CFS; trauma to the head has been shown to lead to fatigue. 1
Food poisoning very occasionally leads to ME/CFS.
Chronic fatigue syndrome has sometimes been precipitated by vaccination, 1 such as hepatitis B virus vaccination.1
Silicone used for breast and other implants, as well as silicone injections, can in rare cases cause an ME/CFS-like illness, as well as autoimmune conditions.
Exposure to tung oil has been proposed as a cause for ME/CFS. 1 2
• Jaw bone infections (osteomyelitis) may cause ME/CFS-like symptoms.

Already having the conditions of: irritable bowel syndrome, 1 2 3 interstitial cystitis, 1 2 chronic prostatitis 1 and/or endometriosis 1 may act as predisposing factors to acquiring ME/CFS, as these are all common comorbidities of ME/CFS, and such comorbidities are sometimes suspected of playing causal roles.


(By the way, if anyone knows of any ME/CFS causes, triggers or predisposing factors that I have left out in the above list, please let me know).
 
Last edited:

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
O.K.... It was a few things... I first got an allergy after a bit of a tummy bug, but was misdiagnosed with scabies. I then proceeded to over-apply malathion lotion and started to get increasing weakness in my neck and legs, also increasing allergies and fatigue, which moved towards becoming PEM over a couple of months. After that I got a virus and the roof seemed to come in for about two or three weeks. I seemed to recover for a couple of weeks after that, after which I got the lot.

Plenty to get stuck into there, I think!

Interesting to see how few people meet the cut-and dried 'virus > illness' model on here.

I used to use an organophosphate-based flea spray before and after getting ME. Not any more...
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I am the opposite of snowathlete. I had both sudden and gradual onset.
I went to bed feeling fine one night and woke up sick the next morning with what quickly became a very nasty flu followed by a worse antibiotic rebound infection. I almost recovered over the next six months, then began a gradual decline.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Mine started in Jan 1990 with a virus that caused excess green mucous in my lungs. I was given 3 rounds of antibiotics, possibly quinolones, based on my Jan 2013 adverse/ frozen shoulders reaction. Soon after all hell broke loose. My list of dx is in my signature.

I started healing in July 2005 after eliminating food intolerances but esp gluten. I have the dq2 gene so gluten has always been a no no for me.

Tc .. x
 

Cheesus

Senior Member
Messages
1,292
Location
UK
I was generally sick over many years but was always told by doctors it was just my anxiety (which was probably partially true). When I developed actually disability it was because I begun a candida diet under very poor instruction and had a huge toxic overload from the die off. It laid me flat and I never bounced back.

So if there was an option for it I would have ticked toxic exposure.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
I'll say one of my MANY head and neck injuries probably damaged my Vagus nerve which is believed by researchers to be the root of CFS/ME/POTS

However from what I understand the Vagus nerve can also be infected through viruses such as EBV,Chicken pox,measles,scabies,ETC of which I had all of the viruses listed above and on top of this I actually managed to somehow contract Chicken pox "3 TIMES"!!

Also I have just recently learned that Scabies can be misdiagnosis of lyme

I had Scabies as well or was this incredibly "itching rash" which was all over my body actually Lyme?

Search Results


    • Could YOU Have Lyme Disease? 8 Facts You NEED to Know
      wholenewmom.com/.../could-you-have-lyme-disease-lyme-disease-cause...
      Dec 3, 2013 - What if I told you all of these symptoms could indicate Lyme Disease? Ridiculous ..... Just yesterday the doctor said it was scabies. But in the ...
 
Last edited:

Cheesus

Senior Member
Messages
1,292
Location
UK
I'll say one of my MANY head and neck injuries probably damaged my Vagus nerve which is believed by researchers to be the root of CFS/ME/POTS

However from what I understand the Vagus nerve can also be infected through viruses such as EBV,Chicken pox,measles,scabies,ETC of which I had all of the viruses listed above and on top of this I actually managed to somehow contract Chicken pox "3 TIMES"!!

Also I have just recently learned that Scabies can be misdiagnosis of lyme

If neck injuries are implicated in your illness it might be worth checking out The Perrin Technique. You can get the book second hand really cheap on amazon.
 

Aerose91

Senior Member
Messages
1,400
Encephalitis for me. Mine was extremely acute. I can't just tell you the day it started but the minute. Every single symptom I had (and still have) showed up instantly. 2 weeks later, after the encephalitis wore off I was left with massive brain detrimental and changes that have only gotten worse since do to energy expenditure.

I would have to disagree with the poster above, it seems the acute onset type have the worst outcomes, or so I have seen in the stat.s. Also, it seems the worse the initial infection the worse the illness and lower instances of recovery.
 
Messages
29
Location
Alaska
I was driving back from school, felt really good and then got these waves of nausea. Eventually, I got insanely nauseous and weak, diarrhea, and had to get a ride the rest of the way. Took three weeks the first time. I thought (wish) it was just a diet thing.
 

CantThink

Senior Member
Messages
800
Location
England, UK
January 11th 1991 - believe that was a Friday. Started with fever, extremely severe diarrhea, swollen glands, sore throat, entire body swelled up, slept constantly, stiff joints, hallucinations, sweating etc was mis diagnosed with a virus and forced back into school very quickly. 9 weeks later doctor called my mum to apologise for misreading lab tests - I had glandular fever and she ordered me steaight to bed.