I need your first month/season/year of illness for research please?

[Hip]

Caught my virus in June or July 2003 in London. This then started causing major neuropsychological symptoms such as anxiety and anhedonia a few months later. Some memory problems and mild fatigue also appeared at this time, but not as yet ME/CFS.

Then in February or March 2005, I experienced an episode of viral meningitis, which for various reasons I am fairly sure was due to the same virus. This meningitis caused some loss of mental facilities, some personality change (especially in the way my emotions worked), as well as a loss of smell (which only returned around 5 years later). It's not unusual to have this sort of mild brain damage from meningitis. I felt weaker after the meningitis, and the meningitis also caused a huge increase in anxiety levels, but as yet proper ME/CFS had still not manifested.

But in the year or two after the meningitis, I slowly but surely descended into ME/CFS. Because it was a slow progressive descent, there was no particular season involved, but I guess I gradually slipped into ME/CFS during the years 2005 and 2006.

 

[picante]

June 1992, Montana. Mine was meningitis, too, @Hip, but I didn't realize it until last year. The virus was mono, presumably reactivated from latency.

My metabolic crash was immediate. It took me years to figure out that it was ME/CFS, as I dabbled in candida treatments, adrenal treatments, heavy metal chelation, and thyroid diagnoses. Every so often my health would ratchet down and there was rarely any ratcheting up.

Finally I realized that my worst symptoms were post-exertional, as it took less and less exertion to trigger them. I was so slow to understand this because for many years I could still do lots of dance activities, and some hiking and skiing. The PEM would hit me a day or two later, and I just didn't realize it was from the exertion.

 

[ArunP]

Unlike most people here. I developed it after an eye surgery (lasik). Immediately after the surgery my eyes muscles felt weak but otherwise I was normal. This was June 2011.

Slowly I degenerated. Everytime I got worse there was always a reason. And it always because of over exertion physical. But the symptoms got severe only around three years from surgery.

Now I have very weak muscles and sensitivity to a lot of stuff. And am starting to have trouble swallowing and speaking. I've had no doctor come up with anyhting that might help. Was on LDN for two years which helped immensely. Now I'm just too sensitive for that too..

 

[dangermouse]

Would you please just tell me what year you got sick and what season of the year it was or as close as you can get. I'm doing some research to show to a couple of ID and research docs. Thanks all!

Gosh, my brain hurts...lol. Let me think....

April 2006 (or could have been May of that year) so that'd be Spring?
UK

 

[slysaint]

Feb 2001 Southern UK (winter)
flu-like illness followed by pneumonia like illness, did not recover, diagnosed PVFS, then ME a couple of months later.
to start was like a dodgy electrical circuit, would flip on and off, by around month two flipped off and never came back on.

 

[Chrisb]

25 July (summer) 1980 following 3 and 1/2 weeks prodromal period.

 

[bertiedog]

I sort of had 2 onsets, the first was in November or possibly December 1979 when I had 2 weeks of what was called Flu from which I just couldn't recover. Two weeks after getting a touch better vertigo came out of the blue which I thought was just the start of a migraine but it wasn't it went on for many days maybe even a week and then followed horrendous migraines. It went on like that for year or so and then I would just get attacks of vertigo and migraine which I never felt I had any control over. I would get gradual recovery and be able to get out of bed and lead a more normal life but I was never the same and suffered with extreme anxiety because the vertigo was so horrendous.

However in-between my energy was good but never reliable. The next event was in October/November 1996 when I had what I thought was Rheumatoid Arthritis because it was an obvious inflammatory illness that made me feel terrible and I had never experienced anything like it. It lasted a couple of weeks but ever after I would get bouts of it. My GP just said it was a virus which mimicked RA but don't remember many tests. From then on my energy was really affected so that by 2000 I had to give up teaching. (I now know I had Hashimotos developing from 1996 so this was undoubtedly playing a part).

Hope I haven't gone on for too long but it does seem to be a bit complicated.

Pam

 

[maybe some day]

Late summer of 91' California. Came down with a hard flu. Out of work for the week. Came back for a week and felt mostly fine. Then it hit hard again and nothing has been the same.

 

[Cailleach Echo]

We had moved from Denver to Tucson and I got Valley fever. I've read that almost everyone who moves to the desert southwest gets Valley fever. Some get a severe case and some never even know they have it. Mine was fairly severe - like a very bad cold or flu and I just never fully recovered. That was 1982. Being Tucson, its pretty much always summer and I really can't remember the month.

Before that, I had been a runner, hiker, played racquetball, tap danced. The first thing I remember was having to lean my arm on the counter to brush my teeth. Then the distance I was running kept getting shorter and shorter. Little by little, I've given up the most strenuous activities but for some years, it pretty much stayed the same.

In 2007 I was able to escape from my abusive alcoholic husband. The period leading up to that, the actual escape and the period after were incredibly stressful. After 25 years of being fearful and stressed in my marriage, those fearful and stressful feelings multiplied immensely overnight. I told no one because I didn't want people to have to lie for me so while I felt very alone, I also felt euphoria for not having to deal with him every day but also not have to pretend to the people around me.

Since 2007, my symptoms have gotten very much worse - to the point that I'm hardly functioning. I accept that this could all be in my imagination but I believe that this is due to the stress of moving cross country, leaving every person and all that is familiar, remarrying to the man of my dreams who had just lost his wife to cancer and so much more. I would really like to hear people's thoughts on this -on the role of stress.

More than anything else though, I would like to read that there's actually some hope. I'm 70 now. I've lost half my life to this so-called, non-existent disease. Is this how my life is going to end?

And yes, this is my first post here.

 

[Seven7]

I cannot pin point what or when it happened. I had a child, then I was tired, in an abnormal way. But was very slow and progressive until I couldn't make it anymore. The only symptom I started with was fatigue( inability to do simple tasks) also I couldn't stay sleep ( I would wake up every hour). Eventually I would get muscle pain and random stuff. Stabbing pain, pins and needles,....
I developed OI year 3 or so.

 

[kurt]

Fall 1996. Backstory is I had some sort of immune system problem as a child. Constantly sick, eventually my tonsils were removed which stop the sicknesses, I actually became quite healthy. But I next developed occasional problems with insomnia when under stress, fortunately never more than a day or two. And I did not have a lot of fatigue, although I did notice in my 20s my endurance was declining when I exercised. Then everything changed in October 1996. I was 38 and under a lot of stress. I got a horrible flu like illness that I just could not shake off. It included bronchitis. After a few weeks I partly recovered and was able to go back to work, but never the same again. Gradually over the next two years I went downhill. Eventually I could only work part time, and after about eight years became fully disabled by CFS.

Sadly, my story does not end here. My oldest daughter developed CFS in college and had to drop out. She is now fully disabled as well, she believes that stress was involved. She had no viral trigger or other illness, just a gradual onset while in college. And my youngest daughter also developed a kind of CFS in college, which started when a strong chemical was used to clean a mold problem in one of her apartments. She also has developed allergies and MCS. I have a third daughter who had no health problems in college, is now a schoolteacher, has a normal life.. And my sons and wife are all healthy.

Although it is very hard to have multiple people with CFS in the same family, that does allow us to compare notes. In our case it is crystal clear that both stress and viral load alter symptoms. When a virus goes through the family, the people with CFS have the same exacerbation of symptoms. We also help remind each other to stay in our energy envelopes etc.

 

[Wishful]

March 2001. It wasn't viral, as far as I could tell; it was a type IV food sensitivity.

 

[Nielk]

February 2003 US