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 started developing sporadic symptoms, all mild at first, following a bout of Lyme in 2005. The Lyme was treated with antibiotics and cleared up, but I had subtle difficulties driving starting thereafter, and found myself unable to endure lengthy meetings. Each subsequent year I worsened, both in terms of the number of symptoms, and in their intensity. I was diagnosed with ME/CFS in 2008. I am now virtually housebound.
The illness has changed over the years for me. There are cycles of "bundles" or groups of symptoms that appear to be related.
My onset was acute viral and stayed like that for at least 10 years. Then after a period of not showing symptoms of other viral things (i.e. a common cold, which I call the "get nothing" phase), it turned into a get "everything" patch.
The first ten years though was a time when I was more allergic. The sudden anaphylactic shock to prawns for example and the sudden start of hayfever/athma/food allergies/pet allergy. The repeat attacks of cystitis that disappeared after about 7 years.
Fibromyagia symptoms with sore tender spot and stiffness did not start until I had been ill for about 20 years. The severe weakness set in then.
The neuropathic - pins/needles, nerve pain has varied in long cycles. POTS has really varied over the decades and simple things like sweating/reactions to cold/heat. Very long cycles of these.
Some of the new symptoms /deteriorations were related to attempts to cure myself. Graded exercise which left me permanently worse off, antibiotics and anti-depressants that wrecked my gut.
The helpful treatments that suddenly stop working - for example probiotics worked like a dream for years, then nothing.
I am more disabled now 27 years later but in a different way than at the start.
My symptoms and overall health has gotten much worse with time. Although, I didn't know what I had for the first 6 years and was fed up. So I started pushing hard in hopes I'd get better. This resulted in a relapse that has been so severe I was completely bedridden and unable to do anything for myself (including feed myself) for the first 3 years (of the relapse). This last year I have improved to the point that I can feed myself, use a computer in a limited manner, etc. But my doctor told me this is my new baseline. My previous baseline was 50%, now my baseline is
15%. So I don't know what would have happened had I not pushed myself. Maybe I would not have gotten worse. I only know the reality of now.
Coxy, I'm in the catch nothing stage too, still. Someone explained that it's not that we don't harbour the cold or flu viruses, it's that our immune systems don't mount a reaction to them, which is depressing. Anyone know if I've got that right?
My daughter and I had a weirdly sudden onset flu-like illness but seemed to have periods of "remission" (for lack of a better word). Not knowing what was wrong, and being told by our PCP that there was nothing wrong with us, we tried to continue life as usual.
My flares became more and more frequent over 2 or 3 years until I was almost always in a flare. In other words, "flare" became the normal state. During this time I has major muscle and join aches, sleep dysfunction, focus, memory and concentration issues and PEM.
Once I learned to pace myself and got some medications for sleep and pain, I managed to feel better (not in pain or constantly running on empty), but in order to do that I had to substantially reduce my activity.
Since then, I've mostly degraded very slowly. When I wasn't pacing and resting (big time), I was driving myself deeper and deeper into pain, massive fatigue, sensitivities and the like, so I see degrading slowly as an improvement.
I've developed more immune type symptoms over time -- I catch everything under the sun, I get sore throats and swollen lymph nodes for months on end.
I'm doing a lot better the last few weeks -- definite improvement in fatigue and cognitive issues [crossing fingers]
My daughter stayed mostly in remission for about 4.5 years. A bad flu plus stress could put her into a bad flare (4-6 weeks), but still able to stay in school with some difficulty. She had a live virus chicken pox booster (HHV-5?), which threw her into a flare from which she has not recovered. :sad:
She is still a lot better than I am -- she can work a sedentary job or go to school half-time. For her, the post-booster shot difficult symptoms are primarily fatigue and PEM, cognitive problems, and autonomic nervous system dysfunction (body temperature and blood pressure control problems). I'd say her ability to fight off infections is reduced, too.
It looks to me like our path went from hyper immune system to poor immune function. But that's sheer speculation on my part.
I have had pretty much the same symptoms since I got sick 33 years ago. I go through periods of remission during which I am at somewhat functional (able to take care of my daily needs), but now I am totally bedridden. Things haven't gotten worse. They just see-saw back and forth. When my children were little, I would never catch their colds and flus.
Coxy - Dr Cheney had that theory about the different cycles (catch nothing, catch everything). He also theorised that recovery could come when we started reacting to different pathogens. To do with the TH1/TH2 imblance. Sadly that didn't happen for me.
I'm XMRV+ so not sure how to think this through. I certainly have not improved as my reactions to viri increases.
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.
The one's amongst you who have mentioned the "not catching anything" followed by "catching everything", how many years down the line of being ill did it seem to turn the other way i.e "catching everything"?
Yes. At first I had periods where I would have swollen lymph nodes (all over-neck, armpits, behind knees, groin area), stinging headaches and low grade fever. (These would last anywhere from a month to three months). Then several years later I got the sickest I have ever been. I had lymph nodes that were so swollen, you could see them sticking out. (The endocrinologist I was seeing sent me in for an ultrasound because she thought one of the swollen lymph nodes might be a large tumor.) I also got a high fever and I had so much mucus coming from my sinuses and lungs that I was vomitting. It was during this time that the fibro type pain (nerve) and joint pain started happening. The brain fog started at this point also. It was several months later that I noticed the balance problems, dizziness and nausea; and a few years after that I started to get the muscle twitching and jerking. Somewhere in between those times I developed what the doctor called Reynaud's effect--poor circulation to limbs, especially hands and feet.
Currently, the fatigue has come back full force and I am having difficulty dealing with that. I was granted a reprieve from that for some years. It seemed that when the pain came, the fatigue was less, but now I have both.
Definitely yes. Just when you think you've worked out a modus vivendi it begins to come apart, and new problems arise. Tinnitus began with a minor infection 18 years ago and never went away. Though I didn't realize it at the time, this was the point where I began the slide into full disability. That infection was the last time I'm sure I was running a fever.
Hard to say what to judge better and worst by.. whether that means that one is able to do more, but what if one can do more but have more serious symptoms which could be dangerous? (but which one dont really notice eg my BP nowdays skyrockets at times but im actually feel much better and doing much more).
CFS is like some sadist entity which enjoys playing with your mind... just as you think you understand your symptoms or have got used to them.... they all go and change on you.
If you are lucky they change for the better but one never knows what one will get next. The symptom list for this illness is HUGE.
You can be almost guarenteed it wont forever stay the same.
I learnt quite quickly with the children never to bother with doctors over every new symptom that came along, they'll put you on this drug or try to send you for physio etc to solve the problem, most of the time the symptom had moved on to something else by the time the follow up appointment came along. Nothing we ever tried really worked, the symptoms just seemed to resolve on their own most of the time, other symptoms we've just learned to live with. We've had the odd symptom that just won't shift for a few months, then it really gets you down, like constant nausea that my daughter has been suffering with for at least 6 mths now.
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. After a really bad experience with my daughter and H1N1 last fall, I don't take her to the doc when she's sick because he says if her temp is 99 F she doesn't have a fever and therefore can't be sick. Our latest workaround is to call in to the nurse, describe the symptoms say the her temp is 100 or 101F. 8 times out of 10 they don't want her to come in and either prescribe over the phone or say "wait it out".
I suspect, and I want to be clear it's just a suspicion, that in the early stages of ME/CFS our immune systems are trying to fight infections, either XMRV or other infections we run into in everyday life, but because something (XMRV?) is screwing up our immune function, that's not working well (low NK cell function?), so our bodies keep cranking up the immune system and we get muscle aches, fatigue, sensitivities, etc, which are immune reactions.
Maybe in the early days the symptoms come and go as our bodies manage to fight some infections down. During this stage we seem to not catch anything because our immune system is cranked up, but we also have symptoms of hyper-active immune systems.
Eventually our immune system either degrade too much (from XMRV?) or just flat wear out (immune exhaustion) and we start catching everything under the sun. We also might start seeing symptoms of latent infections reactivating or infections that people would ordinarily handle with no difficulty.
We still have some immune function (unlike HIV-AIDS) patients, so maybe some infections come and go. Shingles is a lovely example of that. Perhaps our symptoms are changing depending on which infection is out of controll at any particular time.
I suspect that most long-term more disabled patients have undetected/undetectable infections (mostly herpesvirus or maybe enterovirus, I'd guess) that have, over time, invaded cardiac and central nervous system tissue. They may be undetected because they've retreated to tissue and there isn't a lot in the blood, or perhaps the immune system is so exhausted it's not producing antibodies for the tests to detect.
By this thinking, any given treatment might help (temporarily) get rid of some infection that's giving you trouble, but because your immune system is a mess, you just get something else with different symptoms. Or you get the same thing back again before long. So it's a never-ending battle against an army of infections with an arsenal of different symptoms. :headache:
Just my current theory, subject to change as more info becomes available....