Who has got worse as the years roll on?

[anciendaze]

Anciendaze -- my daughter and I don't get fevers, either. Our normal body temperature runs low, about 96.8 F. I'm told that's not unusual with ME/CFS...

That is almost exactly my normal temperature. I don't know most of what goes on after the trainwreck of illness gets underway. Someone else will have to tease out the common features and stages. This beast is complicated. By the time this is finished, we will have a much better understanding of immunology and pathology. This illness crosses all sorts of boundaries between specialties.

Part of the trouble is an army of people who regurgitate what they were taught in med. school. "This is how a viral disease works." or "This is how a retrovirus works." Those who were in the trenches during the fight against the diseases that produced textbook examples were much less rigid. Poliomyelitis was known long before anyone had a way of imaging a tiny virus. It failed many of the existing tests for infectious disease, causing Koch to revise his postulates. The Rous sarcoma virus was found long before anyone knew about retroviruses, or DNA for that matter, and the cause of any cancer was a complete mystery. Even after DNA was discovered, the "central dogma" of molecular biology was that information flowed from DNA to RNA, not the reverse. This is an important exception. I have lived long enough to remember polio epidemics. I don't have to go far back in memory to turn up statements that "cancer is not contagious". I now hear doctors say that cervical cancer can be completely prevented by vaccinating for HPV. "What about prostate cancer?", I ask.

Almost any prediction of a highly specific course of pathology is likely to be falsified in our current state of ignorance. One tactic of the deniers is to provoke people into committing themselves to such a prediction, by saying hypotheses are too vague to be tested, then demolish that, along with their reputation. We still hear that DeFreitas claimed to have found HTLV-2, and that tests showed this was not present. If you read her published work in detail, you will find she said the virus she found was not HTLV 1 or 2, merely that it shared some characteristics and sequence similarity. She actually tested for them. She isolated virus, but she never finished characterizing it. No one else was willing to take up her work.

 

[LaurelW]

Hey! I don't get fevers either, and my normal temperature is low also. I thought I was an oddball. Does anybody know why this is? I tell doctors about it and they are clueless.

I had the same thing happen too, where for the first 10 years of being ill I never caught anything else. Then for a few years I was pretty normal in that regard, and now I catch everything that goes around, and I get it really bad. I'm still trying to get over a cough I got two months ago.

 

[Wonko]

sorry I havent read the entire thread - I've been tryign to come up with a detailed response to the thread topic for a coupel fo days but it aint happening atm

in general I am both more functional and more limited than I used to be - I am both considerably worse (on average) abnd more capable (on average)

I no longer seem to have near normal periods - but I also dont have severe crashes that leave me bedbound - but I have more time housebound than I used to - I've been informed that mentally I am nowhere near how I used to be tho in my opinion I am the same or better in most repsects - again I no longer have periods of incite and brillance but then I also dont wonder roudn being outthought by furniture

sorry - it's a relatively complicated subject atm tryign to compress 25 years of changes into a few paragraphs so I hope a flavour rather than specifics is ok

edit - oh and I used to be able to walk - doesnt seem to happen much these days - I can limp, I can hobble, I can stagger - in varyign degree's of pain/discomfort - but walk - thats rare now

 

[bee33]

I have had CFS for over 25 years and it has gotten steadily worse over the years. I have had no up and down periods at all, just gradual and constant worsening.

 

[Carrigon]

Better in some ways, worse in others. My first two years of the disease, I was bedridden and almost died. The next few years it was really bad, like five minutes of energy literally. Then it very, very slowly got a bit better with time and massive amounts of shitake and other supplements. Then it evened out and didn't move in terms of making me housebound for the rest of my life. I'm still a good 98 percent housebound after having this disease since 1991.

The constant ear pain attacks ended, the constant throat attacks ended. My liver isn't swollen now and my spleen only acts up once in awhile.

Still get night sweats, swollen glands, severe acid reflux, constant yeast infections, skin breakout problems, very low energy, severe POTS attacks. My lyme arthritis is severe. I get stiffness all over like rigor mortis to where I have to hold onto the walls to make it to the bathroom. I get IBS attacks. Allergies, I am allergic to the entire world. I get migraines, cluster headaches, and even weird bouts of gout in my right big toe. I get severe muscle cramps that don't release. I get some restless leg problems.

The Hashimotos is kept at bay right now with thyroid med.

After all these years, am I better? Well, I'm not bedridden anymore. But I'm housebound and really have no life from it. So, better in some ways, not better in others. And when I'm flared up, it's so severe that it's like worse than death.

 

[taniaaust1]

Carrigon.. your post is so like my case that i actually on reading your post at first thought it was one of mine.

Better in some ways, worse in others. My first two years of the disease, I was bedridden and almost died. The next few years it was really bad, like five minutes of energy literally. Then it very, very slowly got a bit better with time

same here.

the constant throat attacks ended. My liver isn't swollen now

Same here

So, better in some ways, not better in others. And when I'm flared up, it's so severe that it's like worse than death.

same. I think ive even written that at times.

If yours is following the same pattern as mine is (thou my pattern is moving a slightly quicker rate as you've had it longer and i've moved out of where you seem to be at right now a bit further). If yours is following same kind of pattern as mine and keeps improving, it will be your nightsweats, swollen glands and RLS to go away next but you could end up with body mulfunctions which show up with testing.. eg more hormonal issues eg cortisol etc and also possibly BP issues of dysfunction.

Thou with being a lymie.. if you still have a little bit of that lurking.. you could continue on with those night sweats and other symptoms.

If i was a scientist.. i'd love to follow your case to see what improves next if one keeps improving in some ways.

 

[BEG]

Hi, i was wondering how many of you think or know you have got a lot worse as the years have gone by?
If so, after how many years of having cfs/me did you start to deteriate?
Did completely new symptoms start after a period of years?

I have had a definate worsening of symptoms, primarily cognitive and less stamina. There was a deterioration that began in the 6th year. During the 4th and 5th year I felt much better and took on too much, I believe, causing the worsening of symptoms in the 6th. Except for age related symptoms, I can't say any new CFS symptoms, beyond what I got in the beginning, have started up.

 

[JAXintheCity]

I definitely have.

I'm approaching year 11. I was really ill in the beginning, got better and had a few good years with crashing on weekends and evenings, then had a major flare...and now, it's just day by day. Not homebound or permanently disabled...but sadly, I can foresee it happening. I just hold onto the good days, now. And try not to focus on what may come... sad as that sounds.

 

[leela]

but then I also dont wonder roudn being outthought by furniture

I'm a bit late to this thread, but Wonko, you just made my day!

 

[alex3619]

Hi anciendaze, except for one thing this could be my bio. The exception is that I seem to run a fever/not-a-fever almost every day now. This may or may not be related to peripheral neuropathy: my skin "burns" all over, especially the soles of my feet (another syndrome: burning feet syndrome).

Exercise, and beyond that just pushing myself, are definitely a huge part of getting worse. Reducing my activity to the point where the decreased activity is driving me nuts has resulted in substantial stabilization of my condition, but I still think I am getting very slowly worse - I can see the pattern only by looking at it year by year. However, not only am I also getting older, but my low budget means that eating healthy is often a luxury I can't afford.

On sore lymph nodes, general aches etc, I find that omega-6 fats and especially trans fats will trigger it - these induce type 2 prostaglandins or otherwise interfere with their synthesis. This is also the case, with me at least, for CFS type chest pains. Eat a dose of high-omega-6 (arachidonate) commercial cooking fat by accident and you might well discover this the hard way.

Bye
Alex

PS I have known that symptoms tend to cluster since 1993, there was research on this, mostly unpublished, in Australia. It has to do with changing patterns of immune and inflammatory hormones. As one hormone switches off or on, so do the symptoms it causes. This is only an hypothesis of course, but it stood up to some testing at the time using detailed symptom logs and dietary analysis (food changes cause hormone changes). Alex

My worst period had me virtually incapacitated for any purpose for three years. I've been considered disabled for 15 years, and getting disability took about two of those three years when I was scarcely able to feed myself. Prior to that I had been treated for various possible conditions for at least 15 years. I'm not sure when the onset should be marked, but I was able to hold a variety of jobs for at least a dozen years after early symptoms appeared. During most of that time I avoided doctors, because they had not helped me with the problems I had reported earlier. Some attempts at treatment were actually frightening.

I'm not sure about the 'not catching anything' business. I have not run a fever in 15 years, but I have suffered spells of reduced energy after being exposed to people who did run fevers. I think infections continue, but the immune response is partially missing.

At the beginning of my odyssey, doctors told me I was experiencing 'growing pains'. Since then I've heard about 'mid-life crises', and moved into commiseration about the aches and pains typical for the elderly. I am better now than I was at the worst, largely because I no longer attempt to do much of anything. This existence is sort of a half-life.

 

[Otis]

Yes, I've gotten worse as the years have gone by.

I came down with a viral illness when I was 15. My Dr. kept getting negative EBV tests was convinced I had it. I remember primarily severe fatigue and headaches at the time. I was eventually diagnosed with "exercise induced asthma" after not doing well in a treadmill test. It also turns our that we had a defective furnace humidifier that may have pumped toxic mold into my bedroom which was next door to the furnace. After the better part of the winter I felt better and thought nothing more about it, except quite recently.

Not realizing it, I really only recovered to 80-90%, never getting back my ability to get aerobically fit or sleep normally again. I also had some minor issues with joint pain and IBS but otherwise I was on an even keel for 10 years when I started getting repeated sinus infections and lots of antibiotics for what were probably mostly viral infections.

At about that point fatigue returned joined by worsening sleep, headaches and the first obvious case PEM. From that point forward it's been a steady decline for 15 years. I had a pretty significant downturn after supplementing testosterone in an attempt to boost energy. I have never had any sort of remission but over time cognitive problems and severe pain (as the major symptoms) have joined the party.

So, it's been a pretty steady (and accelerating) decline.

 

[filfla4]

This condition is sooo confusing!

First got sick 17 years ago - viral throat infection, eventually diagnosed as EBV. I was very sick and homebound for the first 18 months. Typical symptoms - swollen glands, very disturbed sleep, low grade fever, rashes, exhaustion, aches and pains.....

Got better - mostly periods of sickness/remission but still had a very compromised immune system.

Eventually got pregnant. Felt amazing in pregnancy, full of energy and actually lost a lot of weight I had gained during the illness. Within hours of giving birth I picked up a hospital bug (pseudomonas infection) and dislocated my pelvis in the delivery....bedridden again for several months. Was hugely ill here and am surprised I survived. :worried:

Fast forward a decade or so.....bringing up two kids was/is very difficut indeed. Picked up every single bug under the sun when they were little and really pushed myself to the limit. Sore throats and low grade fevers remained a constant.

Now, 17 years after onset, my symtoms seem somewhat different. I have been diagnosed with both ME/CFS and Fibromyalgia. While I still get the low grade fevers and sore throats regularly, exhaustion and my inability to do very much day-to-day are much more of a factor. Exercise is definitely a no. My symptoms seem to be far more 'neurological' than before: intense pain in my limbs as well as periods of numbness and tingling. Pain in my left foot is more or less constant. Headaches, particularly at the back of my head/neck are frequent, and sometimes migratory pain in my head. It is less 'generalised flu-like aches and pains' and more specific problem areas. Does this sound familiar to anyone?

I'm on Cymbalta (anti d) and Celebrex (anti inflam) as well as Stilnox (sleep aid). I regularly have vitB12 jabs (hydrocox) and use transdermal magnesium oil.

In just 5 weeks I have my first appointment to see Prof Kenny De Meirleir in Brussels!! Can't wait!!

 

[helsbells]

I have been ill 20 years and have deffinately got a progressive element - I am with out a doubt worse and have also accrued more problems and diagnosis along the way.

 

[anciendaze]

Hi anciendaze, except for one thing this could be my bio. The exception is that I seem to run a fever/not-a-fever almost every day now. This may or may not be related to peripheral neuropathy: my skin "burns" all over, especially the soles of my feet (another syndrome: burning feet syndrome)...

Another weird similarity. I too have "burning feet" from time to time. I suspect this is a neuropathy triggered by sunburn, because it concentrates on the tops of my feet, not the soles. It may have been affected by medication; I have several pages of medications in my chart which have been tried, and failed to improve the situation. Most had direct effects on the nervous system. Some do carry warnings about sunburn, (not that anyone told me at the time.)

The time when I ran fevers often passed long ago. There have been periods when this was prominent and periods when I couldn't register a fever on a thermometer, even though I had other signs of infection. This last period has been unusually long. I am now wondering about warnings in textbooks saying "this illness often presents without fever in elderly patients" for a variety of infectious diseases. Declining immune competence is one aspect of aging. If similar viruses have been around for a long time, the elderly would be most likely to have been infected, and to have aging immune systems which can no longer hold latent infections in check.

How much 'natural aging' can be attributed to such causes?

 

[JAXintheCity]

This condition is sooo confusing!

First got sick 17 years ago - viral throat infection, eventually diagnosed as EBV. I was very sick and homebound for the first 18 months. Typical symptoms - swollen glands, very disturbed sleep, low grade fever, rashes, exhaustion, aches and pains.....

Got better - mostly periods of sickness/remission but still had a very compromised immune system.

Eventually got pregnant. Felt amazing in pregnancy, full of energy and actually lost a lot of weight I had gained during the illness. Within hours of giving birth I picked up a hospital bug (pseudomonas infection) and dislocated my pelvis in the delivery....bedridden again for several months. Was hugely ill here and am surprised I survived. :worried:

Fast forward a decade or so.....bringing up two kids was/is very difficut indeed. Picked up every single bug under the sun when they were little and really pushed myself to the limit. Sore throats and low grade fevers remained a constant.

Now, 17 years after onset, my symtoms seem somewhat different. I have been diagnosed with both ME/CFS and Fibromyalgia. While I still get the low grade fevers and sore throats regularly, exhaustion and my inability to do very much day-to-day are much more of a factor. Exercise is definitely a no. My symptoms seem to be far more 'neurological' than before: intense pain in my limbs as well as periods of numbness and tingling. Pain in my left foot is more or less constant. Headaches, particularly at the back of my head/neck are frequent, and sometimes migratory pain in my head. It is less 'generalised flu-like aches and pains' and more specific problem areas. Does this sound familiar to anyone?

I'm on Cymbalta (anti d) and Celebrex (anti inflam) as well as Stilnox (sleep aid). I regularly have vitB12 jabs (hydrocox) and use transdermal magnesium oil.

In just 5 weeks I have my first appointment to see Prof Kenny De Meirleir in Brussels!! Can't wait!!

You basically just wrote my life story. I'm going on 11 years. When I was first diagnosed -- I had fevers, weight loss, night sweats, sore throat, swollen glands, palpitations, and extreme exhaustation. Blood work showed re-activated EBV, as well as extremely high titers to HHV6-A (1:1280). Was nearly homebound for 12-months.

Got slowly better... was able to have a successful career with 70-80 % functionality... but definitely begain to push myself too hard. Then, a few years back experienced a MAJOR crash - and have just gotten worse. I'm maybe honestly at 40-50% functionality now...which I push to 50-60% with provigil everyday. Not ideal...I realize...but it's a choice I make to have some semblance of a life.

I TOTALLY agree my symptoms have changed and become more neurological. I also think the primary symptom now for me IS fatigue... which isn't the right word for how 'tired' I feel... more like painful fatigue that makes walking unbearably difficult. In the beginning, the viral stuff was the worst.

Also, I DEFINITELY have more neurological problems since reaching YEAR 10 -- stomache problems, tremors, twitching, expressive aphasia, ITCHING, etc, tingling, phantom pain - you said it!~ Also, visual processing difficulty and on the 'bad days' cognitive processing problems. Random annoying headaches - TOTALLY - except in the front of my head. The viral has gone down - I barely get sore throats anymore - but I still constantly have nightsweats. Also, in the beginning, all I could do was sleep. Now, I can never sleep without aids.

And exercise?!?... HAHAHAHAHAHA... I'm working on wheeling myself through a museum!

 

[JAXintheCity]

Hi anciendaze, except for one thing this could be my bio. The exception is that I seem to run a fever/not-a-fever almost every day now. This may or may not be related to peripheral neuropathy: my skin "burns" all over, especially the soles of my feet (another syndrome: burning feet syndrome).

Exercise, and beyond that just pushing myself, are definitely a huge part of getting worse. Reducing my activity to the point where the decreased activity is driving me nuts has resulted in substantial stabilization of my condition, but I still think I am getting very slowly worse - I can see the pattern only by looking at it year by year. However, not only am I also getting older, but my low budget means that eating healthy is often a luxury I can't afford.

On sore lymph nodes, general aches etc, I find that omega-6 fats and especially trans fats will trigger it - these induce type 2 prostaglandins or otherwise interfere with their synthesis. This is also the case, with me at least, for CFS type chest pains. Eat a dose of high-omega-6 (arachidonate) commercial cooking fat by accident and you might well discover this the hard way.

Bye
Alex

PS I have known that symptoms tend to cluster since 1993, there was research on this, mostly unpublished, in Australia. It has to do with changing patterns of immune and inflammatory hormones. As one hormone switches off or on, so do the symptoms it causes. This is only an hypothesis of course, but it stood up to some testing at the time using detailed symptom logs and dietary analysis (food changes cause hormone changes). Alex

OH MY GOSH!!! I didn't know anyone else gets the burning feet!?!?!? That is exactly how I would describe it!!!!

 

[alex3619]

Hi

Burning feet seem to be a common symptom of CFS. Small fiber neuropathy is a known cause:

CLINICAL PAIN MEDICINE
ISSUE: 9/2010 | VOLUME: 9:09

Small Fiber Neuropathy Demonstrated in Pain Syndromes

Andrew Wilner, MD
TorontoNearly half of patients with a painful condition had evidence
of small fiber neuropathy on skin biopsy, according to research
presented at the 2010 annual meeting of the American Academy of
Neurology meeting (poster P05.231).

Devanshi Gupta, MD, and John Harney, MD, neurologists at Dallas
Neurological Associates, Richardson, Texas, and co-authors of the
paper, reviewed 48 patients who underwent skin biopsy for evaluation
of small fiber neuropathy. Of the patients, 30 had a painful
condition, such as fibromyalgia, chronic fatigue syndrome, chronic
pain syndrome or some combination of the above. Of these, 13 (43%) had
evidence of small fiber peripheral neuropathy determined by reduced
epidermal nerve fiber densities on punch biopsy of the skin. Although
some of these patients had positive electromyography and nerve
conduction velocity tests for neuropathy, others did not.

We have found an overlap between small fiber neuropathy and chronic
pain in many patients, observed Dr. Gupta.

Punch biopsies were taken 10 cm proximal to the lateral malleolus
(abnormal <5.4 fibers/mm) and 20 cm from the anterior iliac crest on
the thigh (abnormal <6.8 fibers/mm). Specimens were sent to Therapath
Lab for interpretation.

Dr. Gupta advised that physicians consider a skin biopsy for
evaluation of small fiber neuropathy in patients who present with
sharp, shooting pains, orthostatic hypotension, autonomic symptoms,
trophic skin changes, incontinence, sexual dysfunction or other
neuropathic symptoms. One should consider a small fiber neuropathy
particularly in patients with comorbidities such as diabetes,
Sjogrens syndrome or vitamin deficiency, according to Dr. Gupta.

There are other ways to diagnose a small fiber neuropathy, Dr. Gupta
observed, but skin biopsy is the easiest way and provides an
objective number, which can be followed. The technique takes a little
practice, but it is straightforward to learn.

Small fiber neuropathy should be suspected if there is distal limb
(lower extremity greater than upper extremity) pain or decreased pain
sensation, W. King Engel, MD, director and professor of neurology and
pathology, Neuromuscular Center, Good Samaritan Hospital, University
of Southern California, Keck School of Medicine, Los Angeles. I do
not do skin biopsy exams. I am concerned about false-negatives. Skin
biopsy abnormalities must not be the sine qua non of diagnosing small
fiber neuropathy. A careful clinical sensory exam for hypo- and/or
hypersensitivity, along with the history, is the best way to diagnose
a small fiber neuropathy. However, a punch biopsy of skin can support
the diagnosis of small fiber neuropathy.

Dr. Engel cautioned that the reproducibility of results of different
biopsies taken at the same time in the same region probably is not
consistent enough for following improvement or worsening
determinations.

When you see chronic pain overlapping with symptoms of small fiber
neuropathy, it is very correct to pursue a thorough investigation,
Dr. Gupta concluded. If you diagnose a small fiber neuropathy,
patients may respond to specific treatment for neuropathic pain.

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For related info from the Cleveland Clinic try:

http://www.ccjm.org/content/76/5/297.full

Good Reading,
Alex

 

[alex3619]

Hi

For another link: http://www.healthguidance.org/entry/12225/1/Small-Fiber-Neuropathy.html

This article basically identifies that we lose the ability to sense either hot or cold. The implication is that if our body can't feel any cold, it screams at us that we are burning up. It will also be worse in warm weather I presume, and it also causes tingling etc.

Bye
Alex

 

[alex3619]

Hi, I have given small fiber neuropathy its own thread:

http://www.forums.aboutmecfs.org/sh...l-Fiber-Neuropathy-in-CFS&p=128231#post128231

Bye
Alex

 

[filfla4]

I TOTALLY agree my symptoms have changed and become more neurological. I also think the primary symptom now for me IS fatigue... which isn't the right word for how 'tired' I feel... more like painful fatigue that makes walking unbearably difficult. In the beginning, the viral stuff was the worst.

Jax, that really just about sums it up!!

I guess I should find the right thread and post this there....however do any of you use homeopathy? I saw a homeopath for the first time about 4 months ago. I was put on a low dose of a remedy which was then gradually increased. It didn't make me better, quite the reverse...it brought out all the original symptoms that I was first diagnosed with, particularly the low-grade fevers and also very very itchy sores on my arms. I have now rightly or wrongly stopped this remedy - it was making me so ill and the timing was totally wrong (whenever is it right?). On the other hand, I've read that homeopathy often works that way before making you better....

Since I have an appointment with De Meirleir in Nov, I thought that I'd better not mess up my system any further at this point.

Any thoughts anyone?