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How many people have been ill with CFS/ME for over 20 years?

Misfit Toy

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It's been 25 years for me. Came down with it in 89 and I have never had remission, gotten better, etc. How many others have been ill to where they can't work, haven't had a remission, etc? Also, I would like to know how many have seriously not gotten better only to go downhill again. How many have been consistently ill for over 25 years. Curious.

As years have gone on, more and more diagnosis' including Fibro, Endo, IC, CVID, a murmur and now Sjogrens. It just keeps going on and on.
 

TigerLilea

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I've just come up to 23 years since I came down with CFS/ME very suddenly. I, too, have never had a remission, have never found any protocol that gave me even 1% of relief from the exhaustion, and since going through menopause have gotten considerably worse. Whether that will change once my hormones have finally finished their free-fall I don't know. I was diagnosed with IC 15 years ago after using bath salts in my bath water.

I still hold out hope that at some point medical science is going to come up with some answers and help me to get some of my life back. :thumbsup:
 
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Misfit Toy

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Menopause or peri-meno is what really took me down. I was much better before my hormones went nuts. Adrenals tanked and exhaustion and immune problems became much worse.
 

alex3619

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Pick me, pick me! :woot: Do I get a prize?

Diagnosed 1989, but had been sick for some years probably since 1985. Probably started in 1968 (childhood measles encephalitis) but it was mild back then. I would describe mine as staged onset ... each serious infection would lead to a worsened state from which I never recovered, step by step. Several misdiagnoses and trying to exercise out of it didn't help either, yet this was the advice I was getting in the mid-80s.

My current diagnoses do not include fibromyalgia but I probably qualify, but do include type 2 diabetes, severe obstructive sleep apnoea, and a mystery disease that is still undiagnosed which has a marker of massively elevated ferritin. Peripheral neuropathy is also becoming a major concern. My other problems, including non-24 hour sleep disorder, I regard as ME issues and not really co-morbidities.
 

GracieJ

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24 years, started with fibromyalgia symptoms after heavy antibiotics in 1990.

"Morphed" into ME/CFS gradually, then more abruptly and clearly after mononucleosis in 1997.

Definite signs of "CFS lite" since antibiotics for pneumonia the summer I was 11. I was never very strong again after that, and went through a lot of insomnia and weakness during junior high and high school. Cognitive dysfunction set in at 17, but I only recognize that in retrospect. I thought it was senioritis; it actually was a growing inability to focus mentally on tasks. Trying college did not work. I could not concentrate and had low energy. Same thing, I blamed everything else. There has been a definite gradual downturn after each time on heavy antibiotics. (Age 11, 19, 23, and 27.)

Have seen the cycle of waxing and waning every three-four years but did not know for years what it was. Sometimes I have done better, sometimes worse.

Lack of good diagnoses served me in the end, because I had to find ways to continue functioning. Herbal medicine helped tremendously. When I could not follow my regimen, I would totally collapse, first in 2004 and again in 2010. I have recovered enough to be at 75% function these days and count myself lucky. At the same time, I am wiser and more careful now knowing another crash could come. I am my sole source of income. Somehow, I have to function for years to come. The thought of this gradually getting worse over the years is something I do not want to think about at all, but must consider.

The only true co-morbidity I can list is early onset osteoarthritis, supposedly a risk for our group.

@Misfit Toy Sorry to hear peri menopause messed things up. As if you needed anything else.
 
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GracieJ

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@heapsreal I would settle for time off for good behavior! :rolleyes:

I won't win this contest, having seen long periods of time with marked improvement. It is sheer heaven when a level of function returns. There is plenty of work involved keeping it together. Definitely challenging on a different level. I still think it is possible for a full recovery - but how?? That is the question I chase after on the good days. The bad days, I sleep.
 
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Sean

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30 years. All my adult life. Overall, my health just slowly declined over that time. Nothing I have tried has done anything more than slow that decline. If it keeps going this way for much longer I am going to need help with basic self-care.
 

Misfit Toy

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Hi @TigerLilea ..No menopause yet. In fact, I have no idea what is going on now. Need to get to a GYN. In 2008, at 37, I started perimeno with crazy cycles and heavy periods. Tests showed perimeno, but now my periods are normal. I only have one ovary and I am also thinking that because of having Celiac, undiagnosed, that perhaps I started going into perimeno, but now I am gluten free totally and my cycles and hormones are in normal range....all but adrenal hormones.

But, my adrenals have tanked.

@GracieJ you know I am inspired by your story and I am trying my own little protocol here. Dysbiosis die off or killing and adrenal help. Started Methylfolate yesterday. Here's hoping. Fired the naturopath. Had to.

We all get prizes for dealing with this CRAZY disease!
 

SB_1108

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Although I don't meet the criteria for being ill over 20 years, I know I'm eternally grateful to all of you that you have been trying different approaches these last +20 years so that people like me can have just a bit of relief. I think about how thankful I am that books have been written, websites have been created, supplements have been reviewed. I know that most of you would have definitely chosen different lives for yourself that didn't include CFS/ME but please take some comfort in knowing that you have helped someone by paving a path for those that were diagnosed after you. I've never had a "remission" but I've definitely been able to experience improvements which have made living with this condition bearable - none of which would have been available to me if it had not been for those of you that started your search for a cure years before me!
 
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brenda

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Do l get a prize for 64years :) Graded onset due to environmental toxins but endo/immune dysfunction at early age and disabling fatigue early on. Lyme put the cap on it but managed to stall deterioration with strict diet for last 10 years. Gluten and casein free helped. Finally have found something works, rife.
 

Misfit Toy

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@brenda Rife DOES work. I would love to find one. Used it once and it was great. Lyme, too...wow. What is your diet? I am gluten and milk free. No choice.
 

brenda

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@Misfit Toy

I am using the spooky2 set up, it costs $110, software free google spooky2. I have started at the basis of treating things so emotions and chakras for now. I will not be moving into killing mode for a while. I am also doing vitamin deficiency and know it works because when I did the MTHFR protocol I had a bad reaction to taking methlyb12 and had the same reaction when I ran the vit frequencies so I just reduced the power and time till I was okay with it.

My diet as I have said elsewhere is to eat real food, not the gluten free diet others are using.

As I was saying on that thread, getting off pharmaceuticals has saved my life. I was on 12 different medications including steroid spray for asthma, when I decided I had to come off them all and did so within a year. With the asthma I went on to Singulair and did breathing exercises as well as the wholefood organic diet.