Not sure there is a predictable path to this illness. I have been fairly high functioning for the past 5 years. Mi am still able to work but mostly from home. Over the period i have stesdily lost function, but this may be due to medical treatments and their side effects.

Others have reported functioning well for years then crashing and not recovering function.

I note though you mentioned a hysterectomy. Were your ovaries removed? Early menopause looks an awful lot like cfs and could probably exacerbate the condition. I hear that hormone replacement therapy helps with this...

I kept my ovaries. I am taking estrogen since I probably am entering into menopause, but it doesn't seem to be having any effect. (I'm 52)
I have heard from some that they know of people that have fully recovered, but haven't spoken to anyone directly that has - so not sure I believe it.
I hear so many different things from friends of friends, but not from CFCs suffers themselves except for this forum. I have tried to find a local support group, but can't find one.
I try to be as active as possible, but not too active because of the dreaded crash. Of course, active these days means going to dinner or taking the dog outside for a Very short walk around the yard:)
I appreciate your comment and thoughts.

I have had a partial hysterectomy as well. I'll be 55 next month. My hystie was in 1999, so it's been a while. I didn't find that the hystie made any difference for me, but it's possible menopause did. I've gotten steadily worse in the past 5 yrs and I started perimenopause about 8 yrs ago. Once my hormones leveled out last year I did find my symptoms leveled out as well. I imagine if I still had periods I'd be done now - at least my last hormone checks say so. Emotionally things are better now than for years.
Now to your question for the path. I agree with Max, there does not seem to be a roadmap with this illness. There are as many levels as there are patients. Understand that for every ao of us who can be up and typing, there are likely 10 who cannot at all, and 10 who are so highly functioning they don't feel the need to be here. I can say my own experience has been that it had ups and downs energy wise and there are even now still some periods where I can go for groceries or do laundry, go to a movie, join in on discussions here, see family nearby. Then there are others where I just can't do much at all but sleep for days. There was I suppose a progression, but it was not steady, or even stable... It varies with what the stressors are in life..... It's not the life I planned on, but it's my life and I accept it as such.

I read somewhere that with CFS the first few years are bad then people slowly head out of the woods. This was the case with me, being really sick for the first 3 years then gradually better, not well though.

Pacing really helps and I may not have been so sick initially if I hadn't tried to push myself to do the same normal things. I'm able to do quite a bit now but I do have to pace myself like resting prior to an energy expenditure and afterwards. I'm able to exercise quite a bit by working up to it slowly and I now don't have big crashes afterwards.

I caught this when I was about 44 but prior to that I believe I had a mild version I was able to shake off and recovered from. When I caught this at 44 I was really sick and had terrible headaches but now I don't have headaches, maybe the Klonopin helps.

In my case, high stress and an auto accident seemed to trigger it.

Thank you for your replies, they help me to understand a little more about what is happening. I'm starting to get a routine that seems to work for me, however I'm sure it will fluctuate depending on stress and such.
I find that limiting myself from to much activity helps and saving up for a dinner or movie out instead of going till I'm exhausted. I am trying to take time for myself and start the day off relaxing, resting till I feel stronger, then I work a little and then I rest again. Sounds like a "normal" persons dream life, but they just don't have a clue. I try to explain it to them, but I have never had these weird feelings in my muscles or the brain fog so it is hard to explain it. Sometimes I still can't believe that I have this FOREVER. I still thank God every night for my health and my life though. I just have to learn how to live with it and redefine who I am now and find joy in it. I am very fortunate to have a loving husband and family and all of you. Thanks again for your thoughts, I can't tell you how much it helps to hear from you all!

Hi TammyDiane!

Your life isn't over, as you said. You DO just have to redefine it. You have boundaries now, physical limitations. But if you follow what your body tells you to do, and rest, rest, rest as often as you can, you will learn to pace yourself through each day to avoid a lengthy crash.

I have had CFS for eight years now. The first three I was pretty much bedridden. After that, I think that you learn to live with it. You finally "get it" that doing too much will put you to bed. Nutrition is mega important, and you need to get tested for food allergies to be sure that what you're eating isn't making you sicker. I'd say the single biggest change I made, that made a HUGE difference for me was discovering that I was lactose intolerant!! I dumped the dairy, and things got better quickly.

Our lives do change. We do lose friends, and jobs......but those who walk away from us because we are sick, were probably not worth having around in the first place.

You will find support here on DS! You mentioned you have a supportive family. That is half the battle.

I've also found that there is no set pattern to this illness. We all have relapses, and crashes, but we also all have really good weeks where we feel almost whole again. It's a crazy illness.

Know that we are here for you. Pacing and listening to your body is a learned art. None of us have learned it yet! LOL! Seriously.....but do your best to eat right, rest, don't push yourself, ignore the negative people that don't "get" what CFS is, find a good supportive doctor and you will do ok. Honest. You will!!

God bless!

Hi Tammy,

I've given up trying to figure out patterns and predictability. Just going with the flow is the best way to deal. I've been sick for 6 years, the first 4 years I pushed and pushed and tried to keep a level of normalcy which had me alternating between being able to work a few afternoons a week and crashing for weeks at at time. I just kept getting progressively less able to do those things. I finally quit working almost 2 years ago and now just focus on giving my body what it needs so I can occasionally go out and enjoy a meal or light shopping with a friend, and family gatherings.

There's just so much you have to let go, it does make life a bit easier once you decide what is worth it and what is not.

And as others have stated, everyone is so very different, other factors weigh in heavily on your particular level, stress, environmental exposures, food, medications, other medical issues.

I think we all have that fear of being bedridden one day. I feared that more in the beginning when I was pushing and crashing severely and didn't understand as much. Educate yourself as much as you can, pay attention to what makes you better and what makes you worse.

Make the things you do count, no matter what they are, no matter what anyone else thinks, make what you do count to you.

I wish you the best, hugs.
Genie

I'm beginning to think I'm lactose intolerant too. Did you guys go to your family doctor for testing or is there some specialist that does this? Also, I was reading some of you talk about anti anxiety drugs vs. anti depressant drugs. I didn't know there was a difference. I know that stress plays a Huge roll in my CFS. My husband and I run a fairly large heating and cooling company. I run the business/money and organizational side of it. I recently hired a business manager to help run it, but now we are acquiring another HVAC company tomorrow almost as large as ours. I feel like I have good people in place to help, but there is no way it will work without my involvement. I can work from home and part time, but I can already feel the anxiety coming on and I am afraid it will put me down/crash. Any suggestions. Normally I don't take meds, but am considering it to keep me calm till I get through the rough part.
I really don't know how I'm going to be able to do this, I pray every night The Lord will help me through each day. He is Great.

dear tammydiane, i'm sorry that you are struggling with this illness. i've been sick for almost 30 years and look back at the earliest years as some of the hardest. there is so much change and loss, grief and in time acceptance (not resignation). your posting has brought out many good and informative replies. i won't repeat what others have already said but i will emphasize something that i didn't take seriously until it was too late - pushing is so bad for us. if i have a drop of energy i still want to keep doing something until i run out of it but have finally learned that this is destructive and i will pay for it. so your pacing is very important and wise.

and regarding your question about medications, there is a big difference between anti-depressants and anti-anxiety meds. i never needed either until i got sick and am so very grateful for how they help me. illness is so very stressful in so many ways from life changes to brain chemistry changes that all help to develop depression and anxiety. i see a professional in this area - a psychiatrist who is very aware of the brain changes and cognitive issues associated with cfs. (i'm very lucky and grateful.) his treatment and choice of meds have made a huge difference in my life. i hope you can get some help if you're finding that your anxiety or whatever you're feeling is interfering with your life and functioning. my best to you.

Regarding your allergy testing. I have a CFS specialist I see in another state. I no longer need to see him on a regular basis. But his testing was what helped the most with diagnosis. He tested me for every conceivable allergy!!

If your regular doctor is not equipped to order the proper testing for food allergies, find an Allergist.

You also need to have other illnesses ruled out. You may have already done this to get a diagnosis, but things like Lyme disease, Lupus, Sjogrens.....quite a few illnesses have symptoms that overlap, and that makes diagnosis of CFS very difficult!

I have been tested for everything, but the allergies. so I think I will try that. I have noticed that there is something else bothering me in my diet, but not sure what. I think it's dairy. Does anyone have an intolerance with alcohol (mostly wine and especially beer) and coffee? Coffee is making my muscles feel weird even after one cup and after I drink beer or wine (one glass) I get extremely weak. My cousin with lupus and fibromyalgia told me that the only thing that takes her pain away is cognac. When I am really sick and hurting I will drink one ounce and It takes the feeling away and I feel better. It is the weirdest thing. I don't condone drinking your troubles or pain away, but if I do it on occasion for pain, maybe once a week, I feel it's okay. Better than pills I think.

Before I had chronic gastritis, I would have a shot of amaretto when I needed to be able to sleep, about twice or three times a month. As long as we don't become addicted, I can't see it's much different than taking rx painkillers.

I've been thinking about the progressive aspect the last couple days.

I don't know if I would say this is progressive...but it can feel it in certain ways.
I'm able to do about as much now as I could 21 yrs ago when this hit. During that time I've had 4 remission periods where I could do more and felt better, some as long as nearly a year. I've also had 6 or 7 periods of doing less and feeling much worse. 4 of those came immediately after the good periods, which is no surprise...we feel better, we do more, we burn out. The others were after no more physical energy but they were after much stress.
I'm going to be 55 this month. I'm just (finally) finishing menopause and I think the lessening of hormones may actually be helping me. It's less stressful on a woman's body to not have the usual monthly cycle, or at least less of it...perhaps...or maybe it's just that being older and more accepting and peaceful means my stress level is just not what it used to be. I don't know. I used to be flat out a whole week every month and now I don't see that...it's more level...
Anyway, my short point to the long story is that I think unless there is another medical issue, we get just so bad when things are bad but they can seem worse the next time because we had good times in between.....
your mileage may vary.....

I noticed that when I started eating more garlic that my appetite and energy improved. There is something called Glutothione that is produced from the Garlic which my have helped me. Isabelle1954