What Were Your First Symptoms of ME/CFS?

[Cort]

• From Prohealth

Mass organization produces survey of early symptoms of ME/CFS

On February 10, the IOM released its new diagnostic criteria for SEID (ME/CFS). There are only three required symptoms: six months of fatigue, post-exertional malaise, and unrefreshing sleep. An additional requirement is either 1) orthostatic intolerance and/or 2) cognitive impairment.

Are the new IOM diagnostic criteria accurate for early onset illness? Or will they miss patients who have only recently contracted ME/CFS?

And if recently ill patients are left undiagnosed, what are their chances of receiving appropriate treatment and medical advice?

To find out whether the new diagnostic criteria will encompass recently ill patients we need to know what the initial symptoms of ME/CFS are. The only people who can answer that question are the patients themselves.

What were your first symptoms of ME/CFS? Let us know in our short 3-minute survey.

The survey, offered by the Massachusetts CFIDS/ME & FM Association, will be open until midnight (U.S. Eastern Time) April 17, 2015.

You can take the survey HERE.

Why a survey about early onset symptoms?

The evidence used by the IOM Committee to determine the diagnostic criteria was based primarily on studies of chronic patients who are ambulatory and can get to specialized clinics. There has been little research done on the newly ill, the most severe bedbound patients, and those who do not have access to specialized clinics.

We need to develop a base of knowledge about one of these groups, the newly ill. We wonder whether the symptoms experienced by the newly ill would look the same as the chronically ill (over 3 years) since there is evidence from a recent study performed at Columbia that the biological process may be different in the early stage of the disease.

This survey should provide an indication of whether the symptoms at the beginning of the illness will be easily recognized using the IOM diagnostic criteria.

Summarized results will be presented to the CFSAC IOM Working Group, which is preparing material for a full discussion of the IOM report in the next public meeting of the Chronic Fatigue Syndrome Advisory Committee.

If you are an ME/CFS patient, we would love to have your response. Thank you for participating in the survey!

 

[Who Me?]

Well the problem is I don't remember everything from over 20 yrs ago. I got a virus and BAM! I was fine. Back then it was all about the fatigue and sleep issues. I don't recall if OI was a diagnostic criteria.

At some point, I think it was 10 years later, I got cognitive testing and i was told I had the cognitive functioning of a 6th grader. Or maybe it was 4th.

Do any docs do cognitive testing or is it all self reported?

 

[Cort]

Well the problem is I don't remember everything from over 20 yrs ago. I got a virus and BAM! I was fine. Back then it was all about the fatigue and sleep issues. I don't recall if OI was a diagnostic criteria.

At some point, I think it was 10 years later, I got cognitive testing and i was told I had the cognitive functioning of a 6th grader. Or maybe it was 4th.

Do any docs do cognitive testing or is it all self reported?

No!!! A 6th grader...Oh man...

Actually I think it was Rich Carson who told me he could not believe what his cognitive tests revealed: it was like - No! I AM a functioning human being..

I still remember the painful thigh symptoms - like my bones were being effected - that was weird (and it went away) along with the other stuff.

 

[Who Me?]

Do you know who Linda Miller-Iger is? She used the MMPI to diagnose CFS.

It wasn't anything I didn't already sense about my cognitive functioning.

Now though, even with all my deficits, I'm smarter than a lot of people I deal with.

 

[Lissa]

Just did the survey.... good questions! I am curious though: Anyone else out there who is more recently diagnosed (5 years for me) but suspects now that maybe they've been relapsing/remitting for closer to 20 years? I had a viral onset with a bad respiratory infection 5 years ago. I was sick for over a month and my GP was thinking maybe it was pneumonia. Then BAM! I hit rock bottom and could barely move, and I also developed POTS. After about 8 months of seeing various local specialists they decided on ME/CFS.

However, in thinking about "early symptoms", I would say that I had digestive problems that started all the way back in the late 90's, but were ignored by doctors. Starting with a dairy intolerance, which then led to soy intolerance, and then eventually a gluten intolerance. Coupled with that, I also had many traumatic spinal injuries in the 90's -- back injuries, whiplash(s), concussion(s) from working with horses, and also from some minor car accidents. There seemed to already be some sort of malfunction in that ALL these injuries seemed to heal much slower than they should have. (And I also recovered from surgeries much slower than usual.) In 1995 a doctor noted that I had a high T cell count and "possible autoimmune", but neglected to tell me --- I happened across it in my medical files recently. In addition --- I've always had kyphosis, and super tight muscles -- which totally falls in line with Dr Peter Rowe's findings.

I should also mention that I've had mono twice: Once in high school and once in college. Struggled with recurrent tonsillitis throughout childhood. I was the one who was always getting sick, and when I got sick - it lasted a week or more instead of just days. As you said, Minx, dialing back the clock 20 years is difficult --- but it really makes me wonder about patterns in ME/CFS. On paper my record shows I've been ill for 5 years. I think a closer look might reveal a much earlier onset - by decades!

 

[San Diego]

Do you know who Linda Miller-Iger is? She used the MMPI to diagnose CFS.

It wasn't anything I didn't already sense about my cognitive functioning.

Now though, even with all my deficits, I'm smarter than a lot of people I deal with.

What?! How on earth can the MMPI, a test designed to detect personality defects and psychopathology, be used to diagnose CFS? She's clearly in the psychosomatic camp.Unless she is using it to rule out personality disorders??? I smell a rat lol.

 

[Who Me?]

@sdsu She was a neuropsychologist and she was absolutely on our side. Back then there was no one to assess our cognitive issues. It was just subjective evidence. She devised this system which used the MMPI and a few other tests to determine cognitive functioning.

She also used the testing, which went on over the course of several days, to observe fatigue and PEM. And yes there was some psychological information that came out of it but not for the purpose of calling us crazy or making things up. More for how we can cope with a chronic illness. This testing was a huge part of my getting disability by showing not only could I not work in my previous job, but I wouldn't be able to work any job because of my congestive dysfunction.

Don't bash what you don't know.

 

[San Diego]

@sdsu She was a neuropsychologist and she was absolutely on our side. Back then there was no one to assess our cognitive issues. It was just subjective evidence. She devised this system which used the MMPI and a few other tests to determine cognitive functioning.

She also used the testing, which went on over the course of several days, to observe fatigue and PEM. And yes there was some psychological information that came out of it but not for the purpose of calling us crazy or making things up. More for how we can cope with a chronic illness. This testing was a huge part of my getting disability by showing not only could I not work in my previous job, but I wouldn't be able to work any job because of my congestive dysfunction.

Don't bash what you don't know.

Clearly I needed more information to make a call on this one. Often the MMPI is thrown at us to try to prove we are nuts instead of actually sick, so I always get a little suspicious when it's mentioned. I'm glad Miller-Iger could use it effectively to prove just the opposite. Sounds like she was ahead of her time in proving PEM and it's effect on cognition. We could use more like that.

Bashing? no. Questioning? yes

 

[Who Me?]

Sadly she retired a few years back and I don't know anyone who does anything close to this. With Cognitive dysfunction being a criteria you'd think there would be.

Questioning good. Anger bad. Sorry. One of those days for me.

 

[Julie]

• From Prohealth

Mass organization produces survey of early symptoms of ME/CFS

My first systems was being very dizzy. I had to rest at least three times while making the bed but the strangest on was the pressure in my head. It felt like I needed to stick a straw in my skull and let out some air. Hot air probably. It felt like gravity was pulling at me. When I told my dr this she laughed. It was really very scary.

 

[Who Me?]

I lived on microwave stuff. I'd go to the kitchen, Toss something in to nuke, and lay in the floor until it was done.

You made your bed? Lol That's still one of my biggest challenges, changing the sheets.

 

[Julie]

I lived on microwave stuff. I'd go to the kitchen, Toss something in to nuke, and lay in the floor until it was done.

You made your bed? Lol That's still one of my biggest challenges, changing the sheets.

I lived on microwave stuff. I'd go to the kitchen, Toss something in to nuke, and lay in the floor until it was done.

You made your bed? Lol That's still one of my biggest challenges, changing the sheets.

Don't do it anymore. They say it is healthier to leave the sheets loose because it airs out. So you've been doing it right all this time.

 

[San Diego]

Looking back, I had mild symptoms for about 8 years. Horrible sleep, mild orthostatic intolerance, 'dizzy days', headaches, and occasional crashes. Because I could still run, hike, work, etc, I assumed I was just catching bugs more than most people. I had no clue about PEM, and I became fiercely protective of my sleep, as one bad night would increase all my symptoms for days.

As I progressed from mild to severe, I rarely showered and would lay in bed until the very last second, wear yesterday's clothes, skip hair and makeup, and drag to work. Once there, I would lay on the floor between patients and spend lunchtime sleeping in my car. (I took out the back seats and kept a bed back there). Along with all this, I had dizziness, severe headaches, base of skull pain, IBS, and complete loss of working memory. I couldn't make the simplest of decisions.

What's crazy is how I rationalized those ridiculous symptoms and kept pushing. No sane person would keep going while feeling that bad, but when you feel awful every day, it becomes your "normal" and you lose perspective. Like @Minx, I was laying on the floor. That should have been a big clue!!!

Perhaps my first true symptom was the sense that "something is going horribly wrong". If only someone had listened.

 

[San Diego]

Anyone else out there who is more recently diagnosed (5 years for me) but suspects now that maybe they've been relapsing/remitting for closer to 20 years?

Yes! But it's so easy to dismiss the early signs and fail to see a pattern, isn't it?

 

[LondonPots]

My first symptoms were in my early forties, a time when I was exercising hard and eating well (or so I thought), and under quite a lot of career & relationship stress - but I was probably the healthiest and most athletic I'd ever been.

It started with crazy sleep and terrible backache. I couldn't get to sleep for hours, couldn't stay asleep, had desperately scary nightmares and nightsweats, and woke up two hours too early every day. It was like I'd been drinking a dozen espressos. I tried sleeping tablets, but they had no effect at all. At the same time I was getting lots of cramps when I tried to exercise, and one side of my back seemed to be in permanent spasm: I'd go every day to the osteopath, he'd do his thing, and within an hour of leaving his office my back muscles would ping back into spasm. I was sleep-deprived and jittery all the time. I used to be an expert meditator, with my bio-feedback gadget, but I started to find that the more I tried to relax, the more the bio-feedback was telling me I was stressed! The counters would go up instead of down. That was my first objective evidence that something was definitely wrong. I left my work, too sleep-deprived to think straight, and started a downward spiral into the classical symptoms of CFS/ME and POTS.

To be honest that start-up doesn't sound anything like CFS/ME, except that these adrenaline surges seem to be a common thing: http://forums.phoenixrising.me/index.php?threads/adrenaline-surges.5764/ - would be good to know if this is the focus of any research? I'm guessing the adrenaline is substituting for cortisol or aldosterone.

My hormones do seem to have a binary switch, though: if my life is all calm/bland, I have little adrenaline but also little cortisol (?), so I'm in a dozy slump. If for some reason (urgency, usually) I have to force myself up some gears I'll switch back into adrenaline mode as above, so I'm active but sleep goes crazy and I feel jittery as hell - and with absolutely no control over my temper. I don't know which is worse.

 

[Paw]

Thanks for the link, Penelope. Interesting thread. I too have long felt that normal forms of energy were not available to me, so that the only way I was getting things done was with bursts of unsustainable, harsh energy. Not unlike chronically substituting caffeine for sleep. When all my symptoms suddenly became much more severe (about three years ago), I felt almost as though I had become allergic to utilizing my own energy (so that whenever I pushed myself into doing a task, I paid a steep, predictable price).

Does this mean I'm over-relying on adrenaline because of low cortisol production? Maybe (although tests, so far, have not revealed a thyroid problem). I've come to consider any task at all as "stressful" -- not in the sense of anxiety-producing, just in the sense that it depletes me. Planning and management have become my first-tier treatments. If I have to make a phone call or respond to an email, I allow time for rest afterward. Grocery shopping is pretty much a full day event. However, even when I'm wiped out, there still seems to be unhelpful excess energy moving through my body. (One obvious example is restless legs: how can I possibly be so depleted, yet unable to sleep because of constant waves of energy throbbing in my extremities?)

The problem we all seem to face is that there are countless things to try, each with complex possible consequences. I had an interesting experience with Nuvigil recently, for about ten days. At first I felt a familiar type of energy on hand, one that I remembered as normally available to me in decades past. So I was very hopeful. But within a few days, all my worst neurological symptoms returned with a force I hadn't felt since they were largely subdued by duloxetine. All-over burning, great fog and fatigue, even my chronic hives had come out of hibernation. Maybe I was allergic to the Nuvigil (I was eventually taken off of it because of painful mouth sores), but it felt more like I was allergic to the actual energy the Nuvigil was helping me access.

I started suspecting a histamine intolerance, but, so far, my attempts to address that seem to be making things worse. There may be a lot truth to many of the myriad explanations we find on the web, but the body seems to be way too sophisticated a machine to respond to easy fixes. Maybe my most productive next avenue would be acupuncture. But I don't know how to find a practitioner I can trust and who, hopefully, understands this family of conditions.

 

[Grace2U]

My first significant symptoms began July 2007.....horrible depletion of everything and "racing" heart and stomach. Hospitalized 6 days that month...no findings. Hospitalized 10 days in August w/o findings. Then following hospitalization diagnosed with Gastroparesis. I will never forget the next 5 months.... Went from 154 lbs to 107. Extreme fatigue, "Lead Legs", 24/7 nausea, abdominal and lowest part of the back pain (tail bone), confusion, dizziness, highly sensitive to sunlight, completely depleted...."as though I was out of my body"....ocular vision......Prayed to die several times. Given Botox injections via endoscopy every 6-9 months thereafter to relax the pylori ??? adjacent the stomach. Lived on baby food, Gatorade/water combo and saltines. Never the same sense. Then came numerous interventions and the SCS that went awry. Another story in itself. I Praise The Lord for being where I am today........25-30 percent of my previous life style has returned. No complaints most of the time I am so very thankful for you Cort and for each one "running this race".

 

[Grace2U]

PS My most exceptional Neurologist told me I never had Gastroparesis.......Go figure Thank you Paw for your comments!

 

[Lissa]

Yes! But it's so easy to dismiss the early signs and fail to see a pattern, isn't it?

YES indeed! I spent years struggling to keep up with co-workers on road trips for work. (As a former cartographer for NAVTEQ.) After 8-10 hour days paired up in a car - switching drivers at lunch, we'd all meet back at the hotel and I could barely keep my head off the table at group dinners. Everyone else was reasonably tired, but I was downright cooked. They'd be ready to stay up and socialize for hours yet, and all I wanted was to be flat in bed.

It never occurred to me that it was a health issue.... it just seemed like I should be able to keep up. I was only a couple years older than the others -- so aging didn't make sense. (When it started I had just turned 30, and the others were in their mid-to-late 20's.) The long hours in a car just wrecked me compared to the rest of the group. It wasn't like you could take that info to a doctor and expect an answer other than -- "Gee, of course you are tired, that's a grueling schedule". I just dealt with it by dragging myself on.... plus basically not being able to do anything on weekends or at night. That's what we do.....just drive on... until the wheels fall off!

 

[Lissa]

OK - A tad random, but..... anyone else have an optical migraine as a precursor to a "crash"?

It has only happened to me twice, but it was crazy. Central vision greyed out suddenly, and then I saw flashing multi-colored "lights" around the periphery. I couldn't see anything straight on, and had to use peripheral vision to dial the phone. No headache involved until days later.

The first time it happened I was in college (1987?) and super stressed out --- it came on with some dizziness, almost blacking out, and then nausea. I was inexplicably exhausted and unable to do much for a couple weeks afterward. (Note: I wasn't diagnosed with ME/CFS until 2010... but this may fall in line with the idea that something like an optical migraine might have been an early warning sign that my body was already shifting/fighting to try and maintain equilibrium of a sort.)

The second time, @15 years later.... no nausea, no dizziness, just crazy vision. And immediately on its heels -- within days -- came an episode of tachycardia and chest pain warranting an ER visit. Not a heart attack, not a panic attack, just my heart would race like crazy when I tried to sit up. (POTS, but they didn't know what to call it in 2004...) In both cases of the optical migraine, there was no clinical explanation --- just random and probably stress related. But I wonder..... was it a neurological precursor, an early short-circuit in the brain?