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    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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What induced your ME?

Messages
60
My me is chronic, I was born with the disease with its progressive nature. Of course there were some incidents that lowered my condition faster than expected but that is inevitable especially if you experiment and search for solutions.
 

overtheedge

Senior Member
Messages
258
not certain but I think it was probably caused by ADHD pills I took for around seven years or so during grade school, I would be like a zombie after taking them and wouldn't eat lunch, would get paranoid on an off, had insomnia, and wouldn't have bowel movements on the days where I would take them. Started getting eye floaters and flashes shortly after starting the pills that have never gone away, eyedoc cant find anything wrong though. Also became shy and withdrawn when I was formerly outgoing and became very sensitive to light and couldn't stand being outside without sunglasses.

The other thing, I inhaled a lot of toxic fumes from burning plastic at one point not long before my CFS went from being something rather slight to something somewhat severe, have taken a lot of supplements that are supposed to aid detox like milk thistle, NAC, and methylation supports but don't know if that would detox such things or not.

I was very healthy, but within a period of weeks, I got a severe case of food poisoning, followed by a severe case of mono. At this time I also had a terrible reaction to a birth control pill and a flu shot while sick. I think that the birth control pill weakened my immune system, making the food poisoning and mono more difficult on my body.
I've heard birth control pills are supposed to raise copper which, when accumulated to high levels, can cause ME. I'm no expert but there is a lot of info on the net about copper toxicity if you haven't already explored it as a possible cause of your illness.
 

godlovesatrier

Senior Member
Messages
2,545
Location
United Kingdom
EB for me, I believe known as Glandular Fever in the UK. Never diagnosed mindue because no doctor wants to actually complete the diagnosis other than to say "You have a virus". But anyway I was in extreme pain for about 2 to 3 days all over my body and my throat was swelled up like a melon. Then I recovered and did a little too much one night a few weeks later. A day or two after that (what seemed to be the typical 48 hour onset) I woke up one day and I could barely get out of bed. Walking up the stairs I felt like a 70 yr old and I was struggling to breath properly too.

That went on for about 6 months. Then another 6 months of nausea, vertigo like symptoms, deep muscle fatigue that just will not go away in my legs and any other parts of my body. Difficulty sleeping properly and difficulty getting out of bed. I suspect if I hadn't been taking siberian ginseng for my immune system (which is now pretty terrible) I'd never have been able to continue working. My job was extremely simple and stress free at the time which made things easier.

Since then I've had fatigue and flu like symptoms on and off, IBS/digestive issues, bad anxiety and I can't cope with stressful situations anymore (no idea how that happened) - sometimes I eat sugary food or processed and my body becomes limp with terrible fatigue that lasts a few hours, then I'm ok again. But I have naturally always stayed away from sugar so it's probably for a reason.

I've had ME (diagnosed by a neurologist in the UK) for 18 months so far and it doesn't seem to be abating, as I am actually worse right now after a general anesthetic for a minor op (which it took me about 2 and a half months to get over) and trying to enjoy myself for the first time in a year (which seems to have set me back a further 6). Prior to this I was almost 70% recovered. But I have heard others also have had this experience and soon there recovery slides. Extremely frustrating illness!
 

unto

Senior Member
Messages
172
EB for me, I believe known as Glandular Fever in the UK.

That went on for about 6 months. Then another 6 months of nausea, vertigo like symptoms, deep muscle fatigue that just will not go away in my legs and any other parts of my body. Difficulty sleeping properly and difficulty getting out of bed. I suspect if I hadn't been taking siberian ginseng for my immune system (which is now pretty terrible) I'd never have been able to continue working. My job was extremely simple and stress free at the time which made things easier.

!

a clear proof that stress does not cause the ME ....... but it is ME that lowers the stress tolerance threshold as it lowers its ability to react to chemicals, detergents, paints, pesticides ..... ..
 

digital dog

Senior Member
Messages
646
Antibiotics (for skin)
Stomach bugs/food poisoning
Prescription drugs
Larium (anti malaria drug now removed from market)
Flu/fever
vaccinations
Anaesthetics
 

godlovesatrier

Senior Member
Messages
2,545
Location
United Kingdom
Yes I can confirm that it doesn't like general anaesthetic and there's some fantastic web guidance from us hospitals for ME patients getting a general anesthtic. It recommends ME patients get about 6 litres of fluid post op. Whereas I went privately in the UK and only drank what I had no fluid iv. Also they recommend staying away from the histamine releasing anesthetics which is interesting. I found it all fascinating anyway.

But yes just as getting a cold or the sniffles makes me feel like I have the flu! My body currently can't tolerate concentrated sugar as it brings me out in aches and pains. Whereas 2 months ago it was fine.

My relapse has brought many of the above intolerances back for sure. Including dairy and bizarrely I've always had an allergic reaction to fruit. It gives me very bad acne and I guess probably affects other areas too that I'm unaware of. So I just dont eat any! Which is obviously not healthy.
 
Messages
9
Thank you for this post. I have had health issues pretty much my whole life. The farm that my mom grew up on used penta to preserve the barn boards, fence posts and sprayed on the gravel road to keep the dust down. This toxic waste came from out local PUD who emptied out old transformers and gave it to farmers, shops and emptied tanks of it down the banks of the upper end of the river. This is not the pure form of penta, it is a toxic soup of over 100 chemicals (many of which are banned now) that keep fire ants out and the transformer cool. I mention this because I know many people who buy cool artsy things for their homes made from old barn boards. When heated up the chemicals leach out faster...bad stuff!

Our bodies run on minerals...we need to eat GOOD food to get the minerals that our bodies use to run properly, #1 (example; roundup kills the good gut bacteria, which produce a large portion of our Sulfur) . When we expose our bodies to chemicals, large amounts of certain minerals are used up trying to detox the body, leaving us unbalanced. Now we have drs that are taught, "these pills for these symptoms", instead of what each mineral deficiency looks like. Our bodies need Sulfur (S) for intestinal health, to detoxify the body and are a major constituent of the proteins and enzymes in our bodies. A deficiency of S causes a lot of pain and inflammation in the intestines and in the joints and in the muscles. This is just one example of mineral deficiency, but when our bodies are out of balance the deficiency becomes a cascade (Calcium, Magnesium, Vanadium, Chromium, Zinc, etc.) leaving us mental, emotional and physical wrecks.
 
Messages
8
Hepatitis B vaccines caused my illness. I started having mild symptoms six weeks following a vaccine in 2010, but didn't link it to the vaccine due to the time delay. I had a booster vaccination in 2014 and my symptoms worsened considerably 10 weeks post-vaccine.

I had a muscle biopsy last year. The biopsy test results confirm that the aluminium adjuvant in the vaccine was the cause. My diagnosis is "Macrophagic Myofasciitis associated CFS/ME post-vaccine".
 

notmyself

Senior Member
Messages
364
legal highs( cheap alternative to marijuana) , drinking and a break up =>anxiety disorder=> medication(mirtazepine .prozac)=>weaken immune system,adrenals=> respiratory infection=>ME...or watevar the hell is going on :)
 

blueberry

Senior Member
Messages
103
Location
west yorkshire
First bout, 1998/99 I believe was caused by really nasty viral flu-type infection, I pushed through and kept working, as I was being bullied at work at the time.Very debilitated with ME for several years, 2003 feeling a bit better, started work part time and made gradual and (I thought permanent) recovery over next couple of years. Still had to manage my energy a bit though, so didn't work full time until 2 years ago. January this year, started a course in addition to work, doing too much, nasty viral infection, downhill spiral until woke up with full-fledged ME symptoms in late Feb of this year. Full relapse after about 12 years remission. :cry:
 

rosie26

Senior Member
Messages
2,446
Location
NZ
As someone else said, I'm not 100% sure, but I'll go to my grave believing that I didn't have CFS/ME until three days after starting on Penicillin.
I think antibiotics played a role in changing the microbiome makeup for me permanently. I had a rebound infection as well and so had to go on the antibiotics twice. But I suspect the pessary antibiotic tablet may have been the one that did it. My ME though didn't kick in until 10 years later. But I think the microbiome changes caused me to progress on to ME years later via flu.