Poll Do You Have Progressive Chronic Fatigue Syndrome (ME/CFS)?

[PamJ]

As a child, I had severe allergies & asthma, repeated bouts of pneumonia, and Had mono twice.. My teens & twenties were relatively healthy. After I had children, went downhill with sinusitis, mono, shingles, depression & neurological problems. Then developed POTS & orthostatic hypotension. 6 yrs later, found out I had a Chiari 1 Malformation, but surgery did not help me.
I've been ill for almost 20 yrs now: I have occasional "good" periods, but my depression & stress tolerance has worsened, and I'm now having joint pain. I chalk it up to age, but it's possible my CFS could be getting worse.

 

[Cecelia]

The best experts for ME/CFS some years back said that it doesn't seem to be, or isn't, a progressive disease. They also may have said that people don't die of it. While it is understandable that this was thought, in that patients did not seem to deteriorate rapidly and then die, as with aggressive cancers, patients do get worse over time. I have been attributing my worsening to aging, but the worsening could be more from disease development than a contribution from regular aging. Finally it is possible to die from it, for example from cardiac complication or from a fall from severe hypotension or from an accident due to cognitive problems or from a normally not deadly infection made deadly by a weakened immune system. The list goes on.

 

[tatt]

I dont know how to respond to the questionnaire so haven't ticked any boxes.
I have had problems with energy management since my teenage years but did pacing before that word was ever invented. So I held down a demanding job for many years. My family have lots of health problems including a congenital problem but mine were pretty minor in comparison and I dont seem to have inherited the bad gene. Although I could sleep through anything as a child I became sensitive to noise and light and my sleep was disturbed. Always had to take great care to avoid back pain, I have an expensive bed and I chose chairs and cars for the back support.

My problems gradually got worse but then I'd manage to identify something that was contributing to them (like laryngopharyngeal reflux , which made me wake at night) and I'd improve. Was diagnosed with one immune problem, would be diagnosed with another in America but the cut off here is different. Had dizzy spells and was worried about falling over. Could hardly think straight at times and would walk into the kitchen and forget why I'd gone there. A gluten free diet gave me my life back for years (although a coeliac test was negative) and I thought I'd found the solution. But I had a very bad relapse, caused by excessive exercise. For several days I got out of bed only to go a few yard to a toilet and slept most of the rest of the time. Couldnt think and didnt wake up refreshed. For months I barely left the house. A trip to my gp to seek help had me back in bed again. Then my husband insisted I try vitamin D supplements and I also began eating probiotic yoghurt. I began a very slow recovery. After finding phoenix rising and this site I tried a modified form of the methylation process and found that n-acetyl-cysteine made a big difference. A few other things give a bit of help and I was no longer housebound.

After another patient told me their ME was better abroad I tried short holidays. I got quite a bit better. In winter I increased the vitamin D supplementation and I also take magnesium at times ( I like to swim in the sea on holiday, magnesium is absorbed through the skin from seawater). I've developed digestive problems, I've found a prebiotic called Bimmuno that helps.

My health is still below previous levels but better than before the gluten free diet. I dont forget why I'm in the kitchen I'm a lot older and fatter from the bedbound/housebound period. Still cant do much exercise at home but in Rhodes could walk up hills as well as my husband (same age as me). So yes, things did get worse but because I've tried a lot of supplements I've found some things that have helped. If I'd only listened to my doctors I'd be bed bound again by now.

Had a relapse recently, after a holiday to Mexico, although I'm normally better in summer anway. I hadnt taken any magnesium for a while and doing so seems to be helping. Still looking for something that will alow me to do more, I miss exercise and I'd like to lose the weight.

 

[Shanti]

Everyone should be checked for Thyroid: Free T4, Free T3, and thyroid antibodies - not just TSH, as well as Adrenal Cortisol levels. B12 status and Vitamin D. Some of the symptoms mentioned are very common with those issues. MTHFR should also be tested as many with ME/CFS have methylation issues. Very important to treat what can be treated, doesn't solve the ME/CFS but can help a lot with quality of life.

 

[San Diego]

Thanks, Cort. I hope I am alive...as in it doesn't take forever to see some research on this. Two decades, six years and counting. I looked the woman you mentioned up. She seems to think it's childhood trauma that brings on illness. I had a normal childhood. A good one, actually.

She recognizes that childhood trauma probably set her up for the disease but recognizes that it's part of the picture some people and it's not the whole picture for anyone. Probably there has to be a genetic predisposition and then some triggering factor. Why these things start is a mystery. She is doing better using mind/body techniques. I don't know if they work better for people with former trauma or not.

I didn't fit the traumatic childhood pattern either.

Perhaps we need a poll on childhood trauma? The first CFS “specialist” I saw insisted on this theory. He asked if I had childhood trauma. I say no. He asked again. I said no. When he asked a third time and stated that I must be missing something, I said “No! I had a very happy, healthy childhood with two parents who adored each other, loving extended family nearby, and freedom on a farm with healthy air and foods. I had no emotional trauma."


I later saw my chart. He had written in it: History of childhood trauma +

What I did have as a child was a few concussions and exposure to mercury and pesticides. My father used to laugh about how hearty and healthy I was compared to my peers. I rarely got sick. My onset of mild ME/CFS was after encephalitis as an adult. My worsening to severe came about over a couple of years of pushing my limits to the extreme, with jobs, 3 surgeries, marathon training, etc.

If you want to define “trauma” to include all things that traumatize our physiology - such as chemicals, molds, heavy metals, allergies, illnesses, injuries, surgeries, etc - then I buy into the theory of trauma being a predisposing factor in ME/CFS. But emotional trauma alone is quackery if you ask me. If emotional trauma alone was enough, surely war ridden zones would become the most peaceful places on earth as everyone succumbed to ME/CFS.

Then again, after years of misdiagnoses while my dysautonomia ran amok, I’m rather sensitive to the emotional trauma model!

 

[Bob Dennis]

Hello Cort, I can pinpoint with accuracy the onset of CFS, which followed my first experience of being admitted to hospital in 2012 with an acute case of uvilitis. The subsequent 12 months I experienced a vast array of what I now understand to be autonomic is character - headaches, dizzy spells, nausea, migrating pain starting in chest and moving around my body to eventually reach my left foot. Non of these symptoms immobilized me for long, or at least was able to endure without having to modify my day to-day activities. That is until May 2015. On returning from a walking holiday in Spain, I began to experience pain on the sole of my left foot and a corresponding fatigue that was triggered by physical and mental activity. I am now at about 30% of working capacity and appears to be worsening. All of this corresponded with my reaching the age of 60, up until then, I was very fit for my age - it is now taking some readjusting, and I don't think I have yet accepted what the new me is like, particularly during periods when I am not doing anything where I feel pretty OK. I cannot help but worry that as the years unfold, this is likely going to get worse and that I won't be able to carry on working. I realise I am not the worst case of CFS, but it is of little comfort.

 

[Cort]

I had to clear the tears before I could respond to this. Like Whistle Blower and Telula, I have felt very alone in this aspect. It's been overwhelming to me lately that I seemed like the only one who, no matter what I do, continues to get worse, but apparently, I'm not. So thank you Cort for bringing it to light and helping us feel not quite so alone.

I'm very sorry you're dealing with so many health problems Mellie and I'm so glad the poll was helpful...I honestly expected that maybe twenty or thirty percent of the respondents would not have any progression but so far only 1 out of about a 100 people have marked that box.

That underscores how much need there is...and, of course, what a horrible mistake it was to call this disease by such a mild term such as "chronic fatigue syndrome"...

 

[Cort]

Und

Perhaps we need a poll on childhood trauma? The first CFS “specialist” I saw insisted on this theory. He asked if I had childhood trauma. I say no. He asked again. I said no. When he asked a third time and stated that I must be missing something, I said “No! I had a very happy, healthy childhood with two parents who adored each other, loving extended family nearby, and freedom on a farm with healthy air and foods. I had no emotional trauma."


I later saw my chart. He had written in it: History of childhood trauma +

What I did have as a child was a few concussions and exposure to mercury and pesticides. My father used to laugh about how hearty and healthy I was compared to my peers. I rarely got sick. My onset of mild ME/CFS was after encephalitis as an adult. My worsening to severe came about over a couple of years of pushing my limits to the extreme, with jobs, 3 surgeries, marathon training, etc.

If you want to define “trauma” to include all things that traumatize our physiology - such as chemicals, molds, heavy metals, allergies, illnesses, injuries, surgeries, etc - then I buy into the theory of trauma being a predisposing factor in ME/CFS. But emotional trauma alone is quackery if you ask me. If emotional trauma alone was enough, surely war ridden zones would become the most peaceful places on earth as everyone succumbed to ME/CFS.

Then again, after years of misdiagnoses while my dysautonomia ran amok, I’m rather sensitive to the emotional trauma model!

That doctor was persistent. I just read a case of doctor after being told by a young woman that she often drank two glasses of wine at night put down that she drank two BOTTLES of wine a night and was an alcoholic. (Instead she had a rare form of autoimmune encephalitis)...

 

[San Diego]

Und



That doctor was persistent. I just read a case of doctor after being told by a young woman that she often drank two glasses of wine at night put down that she drank two BOTTLES of wine a night and was an alcoholic. (Instead she had a rare form of autoimmune encephalitis)...

It is common practice for doctors to at least double what patients report to drinking. In fact, it’s a joke at many CME conference lectures, with a nod and a wink and laughter all around.

I can’t help but think that attitude extends to all areas of the history taking portion of an exam. Discount this symptom by 90%, elevate that reported behavior by 75%, etc etc etc ...… all of which makes one wonder what they do with our escalating symptoms! Thus the need for patient polls rather than doctor reports!

 

[Sarah R.]

I'm glad this is being studied, and thankful that you've brought the studies to us, Cort. I find it hard to tell over time whether I'm getting worse or not. My disability started with fibromyalgia, which is uncomfortable, sometimes outright painful, but that was nothing compared to being slammed with ME/CFS about two years later. I continued to work during those two years, and the stress of trying to continue in a highly demanding atmosphere, coupled with truly crippling fatigue and immune problems (I'd catch everything going around at the office, stay sicker longer and have it recur each time, it seemed), caused me to go downhill in a hurry.

Once I was fired and could spend most of my time in bed, I did "get better." In my case at that time getting better meant fewer digestive problems, less pain and less anxiety. I could pace myself, stay in bed all day, and rise to fix a simple supper many nights, which my husband and I would return to bed to eat. I figured I could do one thing a day -- take a bath, or fix a meal, or go to the doctor, etc.

Now, a decade after being diagnosed with fibromyalgia and eight years into ME/CFS, some days I can be out of bed most of the afternoon. Usually, though, I'm up an hour, down two, up again, down again. I definitely experience PEM if I overdo it, and it may take a week or two to get back to my normal.

When I was first diagnosed, I took comfort in my doctor telling me that CFS is not a progressive disease. I hope the kind I have is not progressive. And my heart is definitely out to all in our community whose suffering has continued to broaden and deepen over time. This pattern of increased suffering over so many years... it makes me wonder why it doesn't lead to earlier death. Are we dying earlier than people without ME/CFS?

 

[Deborah]

Cort, I was wondering if you could do a more specific poll as a follow through to this one. The reason is, I have been sick for over 17 years but it seems over the past couple of years my symptoms have been much worse. Are the number of years sick or age of the patient or both figuring into this equation? As we read in a recent release there were clearly different gene expressions for people being sick 3 years or less compared to people who have been sick much longer. I hope I got that right !
I feel that this is a progressive disease the question is what are the factors that contribute to the worsening of symptoms ( other than the obvious ones of too much activity and or stimulation ). Thank you for a terrific blog.

 

[tatt]

interesting that concussion has been mentioned as I've wondered if my problems began after a head injury as a teenager that made me lose my sight temporarily. No concussion though. Forgot to sy I think I was exposed to a lot of lead from petrol - but so were my siblings and they dont have ME.

 

[Snookum96]

This is very interesting to read. I had some minor issues before what my body probably interpreted as trauma, anaesthetic and a seizure 22 times last year. The first day of that I went from quite mild to severe. I really don't think it's a coincidence. I also lived in the country for the first 20 years of my life. We were surrounded by farms so i was exposed to a lot of pesticides.

 

[Merry]

My illness has been progressive as was my mother's. The last few years of my mother's life were a nightmare: lymphoma (in her breasts), myelodysplasia, cirrhosis (non-alcoholic). I guess the good news is that although I'm now near the age she was when she died, I don't have lymphoma, myelodysplasia, or cirrhosis.

My onset, which came in my teens, was insidious rather than acute. In the early years I saw more fluctuation in health, with good days, good months. I suppose that if I had had a diagnosis early on (in 1968 -- impossible!), I might have claimed at some point that I was recovered.

When I became pregnant in 1982, I still had not had a diagnosis other than, after a diagnosis of rheumatoid arthritis was dismissed, the offhand speculation by the rheumatologist that it might be something called fibrositis ("It's nothing serious," the rheumatologist said. "It will just make you miserable.") This rheumatologist, like other doctors before him, had not been interested in the array of symptoms I was suffering from. For example, he didn't want to hear about the digestive problems.

With pregnancy I saw a relief in symptoms, and, fortunately for my son, in the first few years of his life, I could function fairly well. In 1988, when he was five, I suffered a major crash and didn't recover. In 1990 I finally got a diagnosis of CFS. Nonetheless because I wanted to give my son as normal a childhood as possible (something I hadn't had with an ill mother), I pushed myself through much misery.

In 2009 I crashed again. I can no longer push myself. I've hit a wall.

My cognitive problems are worse. Brain fog has become -- oh, I don't know -- a rigidity. I can picture my brain as a labriynth of walls. I can barely interact with others. Trying to engage in conversation is torturous. Leave me alone!

Oddly I've had very little pain since 2009. I would no longer qualify for a diagnosis of fibromyalgia.

 

[Katie]

Like a few others I was diagnosed with FM first however, it was severe and progressive FM if that makes sense. I didn't think it made a lot of sense and after 12 years I was finally dx with ME/CFS and FM. I think I've had mostly progressive ME but I do go through periods of improvement, not full remission, when I barely do anything during the day for weeks on end but I get bored and frustrated then generally over-do activities as I've done lately. I so want my life back that when I feel improved it's hard to continue to do nothing. But I'm suffering now. Over the last three years I have definitely gotten worse. Since I was a teen I've had POTS, IBS and other symptoms. After a trip to Myanmar I developed double vision and marked weakness in my body (couldn't climb a flight of stairs), dizziness etc. I returned to 95% of my previous health and continued working for another 18 months then over the last 14 years I've declined with short periods of improvement.

 

[Merry]

Since I was a teen I've had POTS, IBS and other symptoms.

Like you, Katie, digestive problems (life-long according to my mother) and problems standing (some form of orthostatic intolerance?) preceded the chronic condition that feels viral.

We were surrounded by farms so i was exposed to a lot of pesticides.

I grew up in a house that got its water from a shallow well at the edge of a field, so I, too, would have been exposed to agricultural chemicals all through my childhood.

 

[Cort]

Cort, I was wondering if you could do a more specific poll as a follow through to this one. The reason is, I have been sick for over 17 years but it seems over the past couple of years my symptoms have been much worse. Are the number of years sick or age of the patient or both figuring into this equation? As we read in a recent release there were clearly different gene expressions for people being sick 3 years or less compared to people who have been sick much longer. I hope I got that right !
I feel that this is a progressive disease the question is what are the factors that contribute to the worsening of symptoms ( other than the obvious ones of too much activity and or stimulation ). Thank you for a terrific blog.

I agree! I was thinking the same thing. It's a much more complicated survey but I plan to do one.

 

[Cort]

It is common practice for doctors to at least double what patients report to drinking. In fact, it’s a joke at many CME conference lectures, with a nod and a wink and laughter all around.

I can’t help but think that attitude extends to all areas of the history taking portion of an exam. Discount this symptom by 90%, elevate that reported behavior by 75%, etc etc etc ...… all of which makes one wonder what they do with our escalating symptoms! Thus the need for patient polls rather than doctor reports!

That's what she said in the book - they take what you report and they double it! In this case a well-known neurologist must have quintupled it or something.

 

[Cort]

interesting that concussion has been mentioned as I've wondered if my problems began after a head injury as a teenager that made me lose my sight temporarily. No concussion though. Forgot to sy I think I was exposed to a lot of lead from petrol - but so were my siblings and they dont have ME.

Aside from normal early illnesses such as horrific case of mumps as I remember, a concussion and a fractured elbow were the only illnesses I ever had as I remember.

 

[Cort]

I'm glad this is being studied, and thankful that you've brought the studies to us, Cort. I find it hard to tell over time whether I'm getting worse or not. My disability started with fibromyalgia, which is uncomfortable, sometimes outright painful, but that was nothing compared to being slammed with ME/CFS about two years later. I continued to work during those two years, and the stress of trying to continue in a highly demanding atmosphere, coupled with truly crippling fatigue and immune problems (I'd catch everything going around at the office, stay sicker longer and have it recur each time, it seemed), caused me to go downhill in a hurry.

Once I was fired and could spend most of my time in bed, I did "get better." In my case at that time getting better meant fewer digestive problems, less pain and less anxiety. I could pace myself, stay in bed all day, and rise to fix a simple supper many nights, which my husband and I would return to bed to eat. I figured I could do one thing a day -- take a bath, or fix a meal, or go to the doctor, etc.

Now, a decade after being diagnosed with fibromyalgia and eight years into ME/CFS, some days I can be out of bed most of the afternoon. Usually, though, I'm up an hour, down two, up again, down again. I definitely experience PEM if I overdo it, and it may take a week or two to get back to my normal.

When I was first diagnosed, I took comfort in my doctor telling me that CFS is not a progressive disease. I hope the kind I have is not progressive. And my heart is definitely out to all in our community whose suffering has continued to broaden and deepen over time. This pattern of increased suffering over so many years... it makes me wonder why it doesn't lead to earlier death. Are we dying earlier than people without ME/CFS?

The best study out - a small said probably not....a kind of anecdotal not very rigorous study said yes. I would go with the first one for now but I don't anything definitive has been done.