Hi there ML. I have been ill with CFS for 35 yrs. I almost think I'm having a bad crazy dream when I look at that figure. I still remember when I was bedridden with glandular fever for six weeks in the early eighties. It was actually 1982. I felt extremely weak continually and after a year passing by, I was really freaked out that I had been ill for so long. A whole year!! I thought I was dying for sure.
Now 35 yrs later I am still ill. It does my head in totally.I want to believe that I will recover but if I'm truthful, I don't believe I will. I am frequently bedbound. I am lying in bed as I type this.
There are numerous treatment plans out there today and of course a big money making business for many practitioners. I have had my fair share of disappointments for sure. Sleep deprivation is a huge problem for me along with family stress , so I believe these obstacles have definitely contributed to my lack of healing to a large degree. I do believe that some people can recover if they have the right healing environment. I'm sorry to hear that you have suffered for so long and can certainly relate to your fears. I believe that the research is more solid now with increased optimism. The Griffith Uni research centre on the Gold Coast in Qld here in Australia , has made some significant break throughs with biomarkers etc. They are working on a blood test to identify CFS. Of course we don't really know if it will eventuate. Perhaps just after I die. Lol!. Oh dear.
Welcome to DS. Hugs

I started having symptoms in the mid 80's and finally read some symptoms for CFS in about 1990 that fit like a T so I started following the recommended diet and life changes. Started seeing a Chinese medicine practitioner in 1993 who has helped a lot and I still still but less often. I've gotten much better with pain, and fatigue much better but now have host of other weird things that are worse. I started having major back trouble in 90's also and now I can't sit or stand much so I spend better part of my day in bed. Fortunately I work for myself so can work from home but can't do many hours anymore. Never did get on Disability and wish I had years earlier. But couldn't afford the string of doctors one has to go through and all the testing to get enough documentation for diagnoses. I'm already drawing what small amount of social security I can ...it barely covers my health insurance premiums. They say great strides have been made in the field, but I can't tell from anything available by the medical system here. The GP doesn't know anything about anything, and the specialists are do fragmented and they won't coordinate with each other so wind up giving me contradictory diagnoses and treatments. So there still is no real treatment other than symptom management with diet and lifestyle. My GP gives me enough Meds to barely manage but I can't tolerate the meds they typically prescribe for fibro. So I make do on Gabapentin, Valium for sleep and anxiety, something for my tremors, NSAIDS, Benadryl to help with sleep, and occasional hydrocodone and percacette which barely work for the pain but make me itch like heck. Nothing much left of the life I had...family all dead, relatives unknown, friends not interested in spending time with someone who can't do anything, unable to travel or do my favorite activities
or volunteer work. I'm ready to move onto next lifetime...I'm 63 but have the quality of life of a 90 yr old in a nursing home..but without any family to visit me. But I still have hope I can get my back strengthened enough to do more things, and my CFS and fibro symptoms will ease off, and I will accidentally walk into a Drs office who cares about finding answers for me. I've mourned my past life but I'm hoping to find some way to still be of service to the world in a new way. On my good mental health days, I still believe there is purpose and gifts in everything and I just need to keep my heart open. Just keep hanging in there. Getting support and companionship from this group is a great start...I just found it 2 months ago and my depression and hopelessness is better. And there is a website, discussion and support just for CFS that I have found invaluable for medical advice. It is called Phoenix Rising, so you might check that out. Most of what I can to is stretch and and read or type on my iPad from reclining position. I figure if I can't do anything else, at least I can be learning something new, and find others going through same things so I know I'm not crazy or alone. Take care!

I'm going to be 50 later this year and I've just reached the 30 year mark of suffering from CFS myself. Like you, I had a bad patch, then recovered enough to live an almost normal life for some years. My big crash came about 6 years ago when a severely stressful situation tipped me over the edge. Things became progressively worse until last year. That was when I hit rock bottom becoming almost completely housebound and not far off bed bound. I did manage to feed myself, but that was about it. Keeping myself occupied during those times when I could not concentrate or do anything physical was a real struggle for me too.

I have now improved again slightly. Part of that might be due to the olive leaf extract I've been taking for a bit over a year. I was told that it would be a slow recovery if it did prove effective and that seems to be what has happened. I'm still taking it, so that hopefully I'll keep improving.

The other part, I think, is because my situation has improved. I am no longer so financially stressed for one thing, and someone from the church I used to go to when I was still well enough gave me a mobility scooter she could no longer use herself. That has given me a lot more independence and I have been able to to things like shopping without getting anywhere near as worn out by it.

I have also had sleep problems for many years and was diagnosed with sleep apnea a few years ago. I have a CPAP machine and those nights when I am able to use it I wake feeling much better. Unfortunately, more often than not at the moment I can't use it, but that is a whole other subject.

I also fear that I will never actually recover any significant quality of life, though most days I am still positive enough to hope for it.

Interesting about the olive leaf extract cmiat. It is an antiviral. Also strengthens the immune system. I was taking it many years ago and can't remember if I improved at all. Probably didn't stick to it long enough. I heard about a guy who cured himself with golden seal. He was a friend of a DS member. Golden seal is also an antiviral and antibacterial. He took it in a fluid extract form for six months. I also started taking golden seal a few yrs back but it really upset my stomach so I stopped. I could have tried a capsule form. That's the thing with natural medicines, they do take time. Not a quick fix. I'm just starting on Ashwaghanda again for adrenal repair because I'm a total crashed out wreck at present. Hugs to all
I'm happy that things are looking up cmiat.

I'm glad You wrote that about olive leaf extract. I've got some in my cabinet from many years back but couldn't recall what it was for, I've tried so many things over the years that I lose track. It is dizzy making trying to keep all this info straight..my brain was not made to have to be my own doctor! But no choice, as I have yet to find a doctor who wants to actually use their brain to treat me.

Hello, ML! I've been sick with CFS/ME for eleven years now. After reading the above responses, I'd like to add a thought or two.

This illness is a life sucking, hideous thing. However, it seems the longer I have it, the better I do with It!

What I probably should say is the better I handle it. My crashes go in cycles. I have a certain number of days where I am functioning , then, like some sort of weird cLockwork, to the bed I go and remain there till my body says I am sufficiently rested enough to get up again! During this time ever I feel fluish, have disastrous stomach pains, I am dizzy, disoriented, fogged in the head, cannot communicate unless lying down. I am completely out of commission. Then, as I said, after somewhere between 5 and 14 days, I just begin to feel this whole "thing" lift and a week later, I'm driving the car.

The reason for explaining my experience with CFS is to show how different we all are. Some of my friends are much sicker than others. Some of them feel horrible every day, rather than the push/crash thing that my body does. In the beginning, I did try supplements and sought out medicall help. Honestly, I got SO much more help right here on DS from other sufferers, than I did from the medical community. I learned about pacing! I learned that I NEED salt and stopped avoiding it. I stopped being proud, and got into carts at shopping centers. I accepted my boundadies, with the help of God I tried to remain as positive as possible

I got on SSD rather quickly. There has been no horrific financial burden on me. I lost my husband two years ago and thought that surely I was done in now, without my helpmate, but no, I have learned to ask for help and have been blessed to find it.

I'm saying here, that I know that I truly believe that this illness will forever be ignored our MD's. CFS is a money maker for them and for Big Pharma. Why fix it?

If we have made it this long, we will continue to do so! I believe that. We are tender hearted towards other sufferers and we each have come to know our own experience with CFS. We're still here! We are STRONG! I thank God for giving me the strength to get through each day. I'm thankful that I don't have missing limbs or a terminal cancer. I am thankful for my daughter and church family, who help me. I am thankful for DS. Even though they've messed this site up horribly, and I find it very difficult to tolerate, I am still drawn here. I've made many friends over eight years. Thank you all.

Hang in ML! We hear You! You are not alone. Seding you big hugs and lotsa love! ♡♡

Thanks to all replies; I belonged to a local support group years ago, but we all got too sick to keep meeting. So I was very happy to find this site and will also check out Phoenix rising.
I first got sick I think it was 1982/83. I was overcome with exhaustion which I was told was "sudden onset." From that time, I did the usual rounds from one doctor to the next, which we all have experienced. At that time, no one locally could find anything wrong with me, so I was diagnosed "depressed." (It's funny because today in my innerself I feel happy and love life) I pushed my way through it somehow and recovered enough to carry on almost as before. Then in 1992 I had surgery, and have been in full-mode M.E. since. But lately, in the last 12-18 months I have been much worse. I have used a Cpap for about 6 years now, so I sleep well enough, I think. I just have no energy and am in constant pain. And changes in weather make it worse.
I spent time today brainstorming (hah!) ideas to keep myself moving forward, and I have a question because I would like to know if I am the only person who has this problem. Does anyone else have trouble tolerating medicine, both OTC and prescribed drugs? If so, what do you do? Sometimes the side effects are just as bad or worse as my M.E., so I just suffer. But sometimes you have to take the meds, like Synthroid for low thyroid. One doctor told me I have beta adrenergic hyperesponsiveness (spelling?) Anyone else been diagnosed with this?
Today was a bad brain fog day, but it was a good day too because I got to read all the replies. So thanks for the love, support, and just for being there.

Hello. Yes, I have been ill for 25 years. I have tried so many meds -- steroids, heart meds, Pseudofed, beta blockers, antidepressants, pain meds. Nothing has helped me much. I am basically just trying to treat symptoms at this point. Some people here on DS have found some help in holistic medicine. I think one of the best things about some naturopaths is that they take you seriously and at least TRY to help. Most of my docs have been a disappointment. I feel your pain. It is a struggle to have gone on this long with these horrible symptoms. I'm glad you are here with us. Welcome and many blessings.

Hi again ML. I have a very high sensitivity also. I always end up suffering with side effects. Most chemical meds make me weaker. The other night I took a sedating antihistamine as my skin was itchy and I also couldn't sleep. It was just an over counter med and can be given to 12 yr olds also. I took half the recommended dosage and couldn't move off my bed the next day due to severe weakness. My body felt like concrete. Regarding local support groups. Many years ago we had CFS meetings every week but hardly anyone turned up ( including me).Infact I never made it to one because they were at night time. Anyway they closed the meetings down. Just a whole lot of empty chairs with no bottoms on them. Sad. Finding DS saved me . Hugs

I know I left this doctor on another post as well, but I can't sing my praises enough for this doctor. I am feeling SO much better! I am currently in physical therapy to recover muscles I haven't used in six years because I was largely bed bound.
KAUBISCH CHIROPRACTIC
Dr. Gus
207 6th St S Ste A
Walker, MN 56484
I highly recommend trying this doctor!

I've been sick for about 12 years now.. for most of my early adulthood. It has been extremely difficult. I've spent a lot of time researching the research. Right now there isn't a test for CFS. It is poorly understood and from what I understand, the root cause is unknown. I haven't come across a well-researched, peer-reviewed beneficial treatment or cure.
That's not to say there isn't hope. There is some remarkable work being done right now by The Open Medicine Institute, headed by Dr. Ron Davis. He has been doing some promising research, already finding some abnormalities in the cytric acid cycle. He is a very well-respected scientist and his own son is very ill with CFS, so I believe he will be able to help the community. He is also raising a lot of awareness for the condition. This raised awareness has put us in a better place than we were even a few years ago. I think there is reason to be hopeful.
Futhermore, some conditions labelled as CFS turn out to be something else. You can get tested for Lyme, different types of autoimmune conditions, thyroid problems.. there is a very extensive list. It's important to rule those things out.
Finally, autonomic problems are a very common co-morbid condition with CFS. It's important to be tested for those because they can be treated.

Hi Bluebonnet. I watch all the updated videos by Dr Ron Davis and he is undoubtedly a dedicated researcher. His son is a sad and serious case indeed. The worst one that I know of. I had the same doctor for 12 yrs and I was tested for so many things and then finally diagnosed with CFS. I also consulted endocrinologists, cardiologists, naturopaths , CFS specialists, and numerous other doctors along the way. Psychologists also. I had considered at one point that perhaps past trauma could be the cause. However, the severe physical fatigue was definitely triggered by the glandular fever. That point became conclusive.

What a long unpredictable journey for us all. I guess one positive is that this illness doesn't kill us. However it seems it is a long term sentence. You lovely kind people here have eased my suffering and I am forever grateful.

Forgive me if I echo others I just tried to read them all and couldn't manage today. I'm marking 24 yrs this year but the last 6 have really been the worst since the initial illness struck in 93. I'm stuck home most of the time as well. I think part of why we end up getting worse (or many do) is that we feel guilty being non productive and we push too hard too often. I wish we could see this as a different kind of living, not as a defect in the life we thought we'd have. I'm having a really hard time emotionally right now but in general my best time was when I finally gained acceptance within myself that this is my life and there's nothing i can do about it. I tried to find things I can do that are not very physical to improve my life, such as meditation, learning reiki and small things like having a schedule each day. Feeling the need to get out of bed to do laundry, even if it takes hours, is still a way to contribute. Cooking dinner, even if it's warming something up. Searching the internet for something my husband wants to buy, doing his research for work and printing it. Keeping up with the kids on facebook even if it makes me cry because i can't be there. It's ok to mourn the life we wish we had, but acceptance of the life we do have goes a long way to peace.

Hello ML, Welcome here. I have been diagnosed with CFS since 2002. That's about 15 some
years. My life is somewhat similar to Darla C in that I cycle through periods of functioning and
having to be in bed. The difference is, I don't have all the same things she does when I have to
stay in. Mine is mainly weakness and fatigue. My down time is usually for three or four days and
then I"m 'ok' for three or four. The exception was this past winter when I was in for long extended
times. Now, I'm in my seventies. I'm grateful for the good days. I have also found understanding and help from alternative doctors. I don't take prescriptions except for thyroid and
my eye medicine. Of coarse, when I get throat or lung infections and so forth I do take antibiotics.
I take many supplements however because I also have chronic Lyme disease. They are
mainly herbal supplements. So. In my situation, even if they did find a cure for this illness, and
like everyone on here, I pray that this will happen soon, for the sake of everyone. I would still
stick with alternative, or complementary medicine. I have gained a high respect for
alternative doctors. This is mainly through my treatments for Lyme disease which is equally
as devalued and debunked as CFS. Plus, I do not feel that the homeopathics and herbs have
as severe effects on my body as pharmaceuticals do. That's been my experience.
For whatever reasons, I still maintain hope.
Like others have mentioned, I have come to acceptance that my life has been drastically
altered. I listen to spiritual tapes and go to groups at a local spiritual center. I read lots of
books of every kind. I watch many detective shows and still do painting and crafts.
The hardest part for me has been to do all of this on my own. My grown children truly
have their own lives and one of my adult children has serious challenges.
If you don't mind my asking, are you living on your own? Either way, I wish I could
give you some decent advice, but I hear good things in all of these posts. I too have gained
remarkable support from the people on this site. I feel for you having to deal with all of your
challenges and am glad you have come here. May it be a sorce of comfort and support for you too.

Hi Rosi,
I am 69 years old and am extremely fortunately to have a healthy, caring husband who supports me in every way. From belonging to a support group for many years, I know many women as well as men whose spouses left them when they became sick. I cannot imagine what it would be like to be on my own and facing this illness alone, but I know many do.

I have not had any success with alternative meds, either herbal or vitamins or anything like that. I think it is just me; I know many ME patients who do really well with alternative meds. Like everything else that is frustrating about this illness, each person has to find what works best for them. But all we can do is treat symptoms, which for me anyway are never the same over time. Today my main symptom is pain, yesterday it was fatigue and cognitive problems; last year I was in pain; a decade ago I had other problems.

Sometimes I feel like staying in bed and sometimes I do. However, I have always been a fighter; so I usually make myself get up and get dressed, even if that is the only thing I do all day. I am determined not to let this thing win. That is why I keep searching for ideas to move forward. I do know people with ME who have gotten better--not cured, but better--so I know it is possible.

I hope that you, like me, find comfort in knowing that there is a community of ME people who share our problems and hopes.