Onset of Symptoms

[Vanguard]

Hey everyone. I just wanted to start a threat about how symptoms started. I know this is a topic that is talked about all the time, but I had a flu like sickness and got better, I felt pretty much normal but I had strange symptoms start around two months later beginning headaches and vision changes. Followed by UTI and others the month or so after that and fatigue setting in.

Did anybody else have an onset like this? I'm asking because it seems like most people just got sick and never really recovered fully.

Thanks

 

[SOC]

I had an extremely sudden onset of symptoms. One hour I was feeling fine, an hour later I was utterly exhausted. Although I wasn't fully aware of it at the time, several hours after onset of symptoms, I was cognitively "off" -- foggy, no concentration. I didn't feel sick (GI or respiratory). The next day I felt like I'd been hit by a truck. Everything ached. Still no GI or respiratory. As far as I remember it lasted 3-5 days, but it might have been a bit longer. It never completely went away, but would go from almost nothing to same as original symptoms.

Daughter had the same symptoms about 10 days later (I think -- had to remember after all these years). Her original symptoms were milder and her relapses milder and less frequent.

And they say it's not viral....

 

[taniaaust1]

I dont know when my ME started and when "a virus" ended (doctors kept on diagnosing me with "a virus") as mine was like an on and off virus for the first 9mths.. with me being very sick for 5-6? days (it lasted each time for about the normal time one expects with flus) and then well.. then very sick again with flu symptoms to the point that at times I looked like a bull frog my eyes puffed up so much and were all blood shot.. glands up.. extremely high fevers (not the mild type which one usually hears of in relation to ME/CFS) and flu like aches and pains.. continuing in this pattern to "triggering events". My triggering events for first 9mths werent physical ones but rather stress events with not much sleep eg leading up to collage exams or assignments.. I'd develop an obvious "virus". (i didnt have the issue my early ME/CFS days in which many do where doctors may think its psychological as it was very obvious by my body, that I was quite sick with a virus).

I know now that it was ME/CFS crashes.. but the in between times for the first year, I was completely well in between incidents and alternatinging between being well and being very sick in bed "with flu". Obviously my body had some ability to fight whatever ME is and whatever flares. After 9mths on and off with bad virus .. I ended up being bedridden completely for 9mths but after a few years.. had a full remission for a while (once again I think that shows my body had some ability to recover).

It would be interesting if they studied ones in early ME who have it on and off.. what is different about our bodies which allowed that and what is changing?, why are we well at times but other times arent? What have others got happening which never allow recovery? (I do think thou that my body may of changed after being sick for so long and I doubt if I can fully recover again).
.........

Dr Cheney talks about that it isnt unusual for ME/CFS patients to have a remission before getting sick again but I dont hear of many who have this who are as on and off as my beginning of ME was.

 

[Enid]

Difficult to pin point but out of the blue a sudden feeling of unwellness - no symptoms whatsoever. I carried on and gradually developed a sore throat which nothing eased and gradual (over about a month) cognitive and energy decline and pain throughout the whole body. This developed into encephalitis with just about the whole range of ME symptoms (bit like reported at the Royal Free and passed out twice too). Then followed (about 2 years) of semi awareness, bedbound - sort of "locked in" and barely moving, mostly sleeping. Needless to say nothing found except the MRI scan showing "high spots" in the brain. Can't think of any particular trigger as I was much enjoying my work aiding the elderly housebound with their personal needs.

 

[Vanguard]

Enid - You said your MRI had "high spots". Can you explain what you mean exactly?

Thanks

 

[Enid]

Vanguard - they were described as "patchy high signal changes" in the brain - also weak anti-smooth muscle anti-bodies 1/640 - also at what stage (can't recall but early on) hypothyroidism detected though thyroxine did not change the course of the illness. (Patchy high signals are like those found in MS - demyelisation but I've not got that).

 

[meadowlark]

Hi Vanguard: My onset took ten to fifteen years. In 1983 I began to experience what my doctors thought was a hemiplegic migraine (migraine head pain that also travelled down the left side of the body, with aches, stabs, inflammation and numbness). I had this migraine every day. Of course, they gave me an MRI, which showed "unidentified bright spots" -- which no one knew what to do about. (Indeed, I don't know what anyone can do about them.) In the late 90s, other symptoms like rapid weight loss, fever, chills, dizziness, nausea, vertigo, post-extertional malaise ... you know the list ... kicked in. The daily migraines continued, but the body pains went to my right side as well.

I was diagnosed in 2000. In 2009 I had a glorious 5-month remission. Then everything returned, along with severe OT, and I'm mostly bedbound. I have a proud history of about 9,000 migraines,

Until a few years ago, I felt guilty about my diagnosis. I took ME/CFS very seriously, and knowing how common and horrible sudden onset is, I often doubted if in fact I had the same illness. Now that I can check off most of the Canadian and International Criteria, I realize I was just one of those rare slow onsets. I don't actually know, of course, but I imagine that slow onsets can happen in hundreds of potential patterns.

 

[Deonmc]

Meadowlark hello, I am new to this site and blessed to find it. While reading your post with each word I was shaking my head yes. I know I have had ME for years. Along with the migraines I had UTIs. I just want you to know how helpful reading about your experience was. Thank you, Deon

 

[mellster]

Unspecified (and of course untested) viral illness in 2009 (labeled myocarditis/pericarditis) for 4-6 weeks, developed gastritis/IBS for 2 years (mainly daily stomach cramps with normal BM) which is now thankfully fading, brief extreme fatigue periods and development of fibro pain (chostochondritis, myofascial pain etc.) and hedaches. First crash April 2011, 2 follow-up crashes following strenuous exercise. PENE morphed from delayed onset and crushing fatigue to fast onset (within hours) with mainly left-sided torso nerve-pain, headache and 'twired' aches, tingling into left hand (like carpal-tunnel which I'm familiar with as a programmer) but less fatigue. Without (over-)exertion I am > 80% normal, although mild-to-moderate exertion plus CNS stimulation (like noise, emotional upset/arguments, work meetings/discussions) can bring on PENE later into the day which then needs bed-rest as soon as possible. Also from head-to-toe muscle twitches (but no weakness or miscoordination) for 2 years now (getting slightly better), no cognitive/vision issues, but often "hot/heavy" head without flushing.

 

[Valentijn]

Hi Vanguard: My onset took ten to fifteen years. In 1983 I began to experience what my doctors thought was a hemiplegic migraine (migraine head pain that also travelled down the left side of the body, with aches, stabs, inflammation and numbness).

I was diagnosed with a hemiplegic migraine 5 years before ME hit me hard. I wonder what the odds are that two people would get that diagnosis (isn't it REALLY rare?) then go onto getting ME. A dose of folic acid ended the "migraine".

 

[meadowlark]

Deonmc and Valentijn, I'm so grateful to hear of similar migraine onset. As I understand it, hemiplegic migraine is very rare. I had read about it in Oliver Sachs' book Migraine. I asked my doctor if that might describe my problem, and he denied that hemiplegic migraine existed. (That myth of the Three Migraines--Common, Classic and Cluster--is pervasive.) Well, I left that doctor and never returned. Today, I wonder how much of hemiplegic migraine is not just triggered by vascular pain (due to our multisystem breakdown) but the added pain of fibromyalgia.

The wonder of it all is that not til 1997, when I met a pain doctor with lots of curiosity and no arrogance, did someone wonder if the migraines might be connected to fibro, MS, Lupus, ME/CFS, etc.

At any rate, I've never met a human being face-to-face who knows what it's like to live with a buzzsaw cutting through your brain, legs and arms every day or very often for years on end. But rarely, on the internet, someone mentions it, and it helps. I went to work every day for 17 years with that buzzsaw, and I worked with great people. I could close my door, shut the window and lie down on the floor; I could put my head down on my desk and no one reproached me. But I felt like a freak, and I lived in emotional denial of what this might all mean someday.

 

[svetoslav80]

Hey everyone. I just wanted to start a threat about how symptoms started. I know this is a topic that is talked about all the time, but I had a flu like sickness and got better, I felt pretty much normal but I had strange symptoms start around two months later beginning headaches and vision changes. Followed by UTI and others the month or so after that and fatigue setting in.

Did anybody else have an onset like this? I'm asking because it seems like most people just got sick and never really recovered fully.

Thanks

I often read in the forums "flu like sickness" or "it started like virus disease". Flu and virus disorders go with fever (high temperature) in 99% of the cases. When I ask the person if he had a temperature or body aches the answer is usually no. I think this is important. During my onset I felt hot, had chills , but my temperature never went over 37,2 C. Doctors said that's no high temperature but I know it's not normal too cause my normal temperature is standard, 36.6 C.

Other than that my symptoms started with groin and pelvic pains, 10 days later I felt sick - fatigued, fainted. The same night I felt very bad - felt hot, had chills all over the body, felt nauseous, had ear ringing. I had panick attack and called emergency. They said there's nothing wrong with me. This is my only panic attack I had in my life. Other than that I suffer depression and anxiety but never had panic attack before or after that. The chills are now gone, also the ear ringing and feeling hot. I'm just fatigued and my head is heavy all the time - it's like I have caught a cold without my throat being inflamed.

 

[taniaaust1]

I often read in the forums "flu like sickness" or "it started like virus disease". Flu and virus disorders go with fever (high temperature) in 99% of the cases. When I ask the person if he had a temperature or body aches the answer is usually no.

Low grade fevers eg 38C are quite normal with ME/CFS and "low grade fever" is listed in many ME/CFS symptom lists. The fevers I was running with this illness everytime I crashed were 39-40C+ fevers. (nowdays I quite often run fevers of the 38C too 39C range but dont even know Ive got them unless I take my temp.. I guess I dont notice them as my body got used to running fevers).

My temp thou when I arent in fever is quite low 36.2 to 37.4C range

Quite normal ME/CFS too thou is "feeling feverish" without a fever.

 

[svetoslav80]

Quite normal ME/CFS too thou is "feeling feverish" without a fever.

That was my point. I think it's the majority of CFS patients that were feeling feverish but actually never had temperature during onset. But they still say "it started like flu".

 

[soxfan]

I had a 102 temp during my onset...along with chills, headache, backache, muscle pain and tiredness. It only lasted 24 hours and then went away. I didn't think anything of it till 23 days later when I woke up feeling as though I hadn't slept in years and that was the beginning almost 7 years ago.
I still have my two original symptoms which were major fatigue and nerve pain in my L calf and foot....

I haven't experienced many fevers since that original one. In fact my temp runs around 97.6 or lower.

 

[AndrewB]

I started with a chest infection last year in late may.
I then became bed bound with it for two months, and for a further few months i was severely restricted by it.
By january i was reasonable ok, but only operating at about 70% of my former self.
I couldnt deal with alcohol any longer, and had bouts of extreme pain, although the post activity fatigue had
seemed to vanish.
At the start of june this year i crashed again, every bit as bad as last year.
Re: tempreture, when in severe relapse the night sweats are so bad that my bed is completely soaked from head to toe.
I often feel hot, even when im not, and cold when its warm.

 

[Vanguard]

My initial flu sickness was actually around 2 weeks long and was pretty severe. It acted just like the acute retroviral response that I've read about that people get with HIV, I'm hiv negative though..although I'm not sure how much weight that really holds anymore. I wonder if xmrv can cause a response like that too?

 

[ahimsa]

In late December 1989 I had an unspecified flu-like illness. I had a fairly high fever (101-102, don't remember exactly). I had chills along with body aches and other flu-like symptoms. We had just come back from an 4 week trip to India (visiting my husband's family) so, even though we were both on anti-malaria drugs, my husband mentioned malaria to the doctor just as a possibility (it wasn't).

After about a week I thought I had completely recovered. I went back to my normal work and exercise schedule in January 1990. But slowly I started to go downhill. My first symptoms were feeling lightheaded and dizzy. Then shortness of breath and increased heart rate just doing normal things like walking upstairs. Then PEM, aka, PENE, after working for a full day. I don't know what I called it at the time (didn't know about PEM) I just knew that I felt like crap.

So, I ramped back on my exercise, and took lots of sick days, but in spite of extra rest I kept going downhill. By early March (barely two months) I had gone from my normal exercise routine of 45 minutes on the stairmaster (remember those?) at level 8-9 to doing no exercise at all (stopped lifting weights, hiking, etc.). I felt exhausted just walking from my car to my office. This is one reason why I simply laugh when anyone suggests deconditioning as a cause.

By March 1990 I was taking a sick day every other day, and this wasn't going to work long term, so I had to go on full time medical leave. All my tests were normal so the doctors assured me that this was some kind of "post viral fatigue syndrome" which would completely resolve with rest. After some time on medical leave (about two months) I felt better so I returned to full time work. A month or two after that I started to exercise again. Then in the summer of 1991 the symptoms returned, along with new symptoms, and the time from initial symptoms to being too sick to work was much shorter (couple of weeks instead of couple of months). I went on another medical leave.

Leaving out lots of details, the short version of my story is lots of ups and downs (go out on medical leave, return to work, repeat many times) until I finally had to go on long term disability in 2000.

So, my illness onset was not "I got sick one day and never recovered at all." But it was also not "I gradually got sick over a period of years." I had a definite illness onset but I was able to fight against the illness for a long time. Before I got sick, my idea of a fun day was to leave after work, drive to the Columbia River Gorge, do a 6 mile hike (approx 1500 ft elevation gain), then drive home by about 9 PM.

Whenever there are discussions about being limited to less than 50% of previous activity, I always think, does that mean that since I used to do a 10K run that a 50% reduction would mean I could only do a 5K run? At my worst, I would get up from the couch to open the front door for my husband and suddenly have to sit down immediately. Right there on the floor. (In hindsight I think that was partly due to the untreated orthostatic intolerance) At any rate, if that distance was about 10 feet then we're talking 0.03 % of my former activity level of a 10K race? (someone probably needs to check my math, LOL)

Whether fighting my symptoms was a "good thing" or a "bad thing" is a question I'll never be able to answer. At least from a psychological point of view I know that I did every single thing in my power to keep on working. I loved my job. Knowing that I tried everything I could do to keep working, even if it might have damaged my health, is actually some comfort to me. Yeah, probably too much work ethic, I know, but that's who I am (or was).

 

[ahimsa]

That was my point. I think it's the majority of CFS patients that were feeling feverish but actually never had temperature during onset. But they still say "it started like flu".

During the illness that started this whole thing I definitely had a fever (measured at home and also at the doctor's office). And also body aches.

After 20+ years of this illness I rarely have fevers now. I don't know when this changeover happened, though.

 

[ahimsa]

At the start of june this year i crashed again, every bit as bad as last year.
Re: temperature, when in severe relapse the night sweats are so bad that my bed is completely soaked from head to toe.
I often feel hot, even when im not, and cold when its warm.

So sorry to hear about your crash. Night sweats are just horrible. I had them a lot during the first 5-6 years of my illness. Then they slowly tapered off. I think I've only had one in the past year or so.

But I still get the too hot/too cold feelings. I can't seem to regulate my body temperature. I generally settle for feeling "too cold" because I feel much better if I'm slightly shivering than if I'm too warm. My theory for this is that it's related to the orthostatic intolerance and low blood volume. When my hands/feet are cold then the blood vessels constrict and more blood is in my body core where I need it. Could be wrong but all I know is that I feel a lot better when I'm feeling cold.