ayone ever get better after being very sick?

[health_seeker]

Hi Hurting:
Sorry you are having such a rough time. A lot of us get to the point where we want to just give up on life with this illness. Ive certanly felt that way. Because I am also blind I began to wonder what point there would be to life with CFS in addition to my other disability. But I am very glad that I did not act on those thoughts.

Ive Been on a comprehensive treatment program this last year and have experienced HUGE improvements in my health. And aggressive rest therapy has been a really important part of that treatment. For me aggressive rest therapy means telling myself that my primary job in life right now is to spend my days and nights doing things that are most restful and relaxing for me and which cause me the least amount of stress.

For the last year, I put everything on hold and just did those things that I absolutely had to do to survive like eating, etc. Ive spent a lot of days sprawled on my couch listening to books on tape because I find that very relaxing. But something else might work better for you. Other days I just curled up under the covers with the electric blanket on and snuggled up with my cat. I allowed myself to really take pleasure in the warmth of the bed, the comfort of knowing my cat loved me whether I was sick or healthy, and of feeling him nestled against me, and the wonderful feeling of being still and doing absolutely nothing. At night I committed to spending at least 10 to eleven hours in bed and at least 9 of those hours sleeping. I took several measures to ensure that I got as much uninterrupted, deep sleep as possible. These included 4 mg melatonin half an hour before bedtime, plus 3 or 4 capsules of an herbal sleep formula, plus a low dose of Ambien. My problem has been waking up in the night. So, to ensure I got the most rest, if I was awake more than fifteen minutes I would dissolve a quarter of a 10 mg tablet under my tongue because I find it gets into my system more quickly that way and I need less of the medication to fall asleep. But again you might need something different. The important thing is to be resting and relaxing during the day and getting as much sleep at night as possible and telling yourself this is absolutely ok and really good for you.

Hope this helps and that you can find ways to be kind to yourself.

 

[Valentijn]

just wondering where the exercising part helps others?

It probably doesn't help anyone with ME, certainly not those who are in a stage where things are getting worse, or are very bad but otherwise stable.

I've read quite a few of the studies involving ME and exercise therapies, including counseling therapies designed to increase activity. These studies are usually of very low quality, and always include patients that do not have Post-Exertional Malaise (PEM), which is silly because PEM is the closest thing we have to a unique symptom.

These studies also specifically avoid reporting any PEM side effects from the treatment, and usually do not include any objective measurements, such as if people are really more active after these treatments. In fact, research where I live (the Netherlands) has repeatedly and deliberately left out the measurements of activity. Instead, they report their treatments as successful, based solely on the patients reporting that they think they feel better - which is basically what the therapy is telling them to do.

When they did finally mention those abysmal results several years later, they flipped the disease on its head, and claimed that their results meant that how people feel and think about their disease is more important than their ability to physically and cognitively function in reality!

Trust the signals your body is sending you, and err on the side of caution. Maybe try to read some of the exercise studies when you're feeling up to it and in need of a good laugh :-D

 

[Sparrow]

ive walked a few walks with my daughter since on stronger pain medication..i am sedated with it..i feel sore though and worse afterwards...just wondering where the exercising part helps others?

STOP! Please stop. I was also told to force myself to exercise (mine was due to an initial misdiagnosis). Taking a simple walk now and then is part of what led to my being in such an awful state now. Anything that makes you feel worse afterward really needs to be cut.

There was some research that is surrounded by controversy that some people felt showed that for some people who may have had CFS, exercising made them think that they felt a bit better. So a lot of doctors jumped on it, probably partly because they have so little else to offer us as it is (and because exercise is so good for so many other things). But specialist doctors in ME/CFS will tell you that if it's too much for your body, DON'T DO IT. If you feel worse, or it takes more than about a half hour to recover fully, it is probably hurting your progress greatly.

I know how hard it is to feel like you're not living up to your family responsibilities or expectations. I think we all go through that. But if you can come to terms with being less active temporarily, you will probably greatly increase your chances of being much more active for them in the future. So worse now but then better rather than pushing through now sometimes but never recovering. It's a good trade, and probably one that your family would be happy to make as well.

For me it helped to think that my job right now was to get better. So every time I pushed through my discomfort to try to do something, or did a small activity that left me feeling worse, I was being irresponsible and not doing my job. That helped a lot to realize, since normally my instinct was that I "should" be doing more even though I felt awful. But it's been better for everyone to have me completely out of commission for a while and then back much healthier and happier and able to contribute some. I've still got a ways to go, but keeping far away from things that strained me has made an incredible difference in my rate of improvement. Truly, night and day.

 

[Sushi]

STOP! Please stop. I was also told to force myself to exercise (mine was due to an initial misdiagnosis). Taking a simple walk now and then is part of what led to my being in such an awful state now. Anything that makes you feel worse afterward really needs to be cut....

Hurting,

I really second this. Anything that makes you feel worse afterwards (often it is the next day) is doing you harm not good.

As far as exercise & ME in general, I think the same rule applies. If you can exercise a bit without having to pay later, the exercise is probably helpful to prevent deconditioning. But for many or most, even a little exercise means feeling worse later. You are adding to the stress on your body.

I have improved enough to be able to do an hour's anaerobic exercise each week and feel better afterwards. But I can't do aerobic exercise--walking is aerobic (this is typical) without paying for it.

Best wishes in this confusing world of ME!
Sushi

 

[Sushi]

Another note from a noted ME/CFS doctor--Dr. Charles Lapp--http://drlapp.com/ask-the-doctor/what-are-the-most-important-things-to-remember-about-cfs-fm/:

"I have had many patients who could not accept CFS, so they would push until they crashed, exercise beyond limits, try to keep up their activities, and pretend that they werent limited. As a result, they all got sicker and sicker. Many have never recovered. They crossed that invisible line beyond which modern medicine can no longer help, and they have remained broken and miserable as a result."

Don't mean to cast a pall over this thread, but this doctor has seen a lot of patients and his cautions come from experience.

Sushi

 

[taniaaust1]

Ask yourself, If you had a broken leg, would you keep walking on it and just take more and more meds for the pain so you can?

 

[taniaaust1]

i just feel so guilty i dont want my kids memorys of me to be of me laying on couch or bed and i hate that...i want to provide and do for them not have them doing chores for me : (

Unfortunately if you keep pushing yourself, that is exactly how your children will remember you. I myself pushed myself too hard and I then could no longer look after not just my children, but then COULDNT LOOK AFTER MYSELF EITHER. My poor child who was only 9 or 10 years old, then had to became MY CARER and also the care provider of my other child. The fact I had overly pushed myself too much, ended up completely taking away my choice.

This illness will end up leaving you with NO CHOICE.. unless you start trying to look after yourself better. You are ill.. right now, you need to be looking after yourself so you have the most hope of improving.

Please please please.. look after YOURSELF


I pray you dont make yourself far worst.

 

[hurtingallthetimet]

thanks for all the great advice...i had to go pick up some grocerys and prescription for daughter and i thought about hte advice id gotten and i told myself to walk slower...buy less...let my daughter and son do the carrying in of stuff...i hurt as always even thgouh i took it easier...today the dog has upset stomach though wears a diaper hes older...he messed on floor...i didnt have nayone to clean it up..i know if hubby had been home he would have but he was gone...i had to clean up and now my back is killing me..just from cleaning up dog mess...its crazy..

i am going to talk to my doctor about the aggressive rest therapy...they may have menitioned it to me and i forgot...but if its helped others i do want to try it...

healthseer i have insmnia and wake up alot also...and not sleep well for days until so exhuasted i sleep a few hours..very tired all day though..nodding off....i cant take ambien it caused me to go mad...i would walk outside talk etc. and never remebmer it...eat at night find the wrappers etc..never remember it...it made me angry and aggressive...and id find angry emails id written etc..not remembering it and id forget who family memebers were and hear stories on tv or something confuse with it happening to someone i knew..it made me crazy..so i cant tak it..wish i could...

as far as the exericse im glad to know im not the only one who has had a doctor to tell them to but it sound crazy becuase of the flares and crash afterwards...at first years ago when i was diagnosied i didnt know any better hadnt found first support group or knew anyone wiht it and i did over exercise becuase thats what i was told to do...i kept getting worse and worse..id even cry to one doctor of the pain while they kept telling me to push myself harder...now the most i do is a walk after morphine...but its alsways soreness afterwards...so im thinking i wont even do that..but i enjoy the time with my dauthger main reason i do it..but i need to get better..

its just crazy that they keep pushing exercise...

 

[Ocean]

thanks for all the great advice...i had to go pick up some grocerys and prescription for daughter and i thought about hte advice id gotten and i told myself to walk slower...buy less...let my daughter and son do the carrying in of stuff...i hurt as always even thgouh i took it easier...today the dog has upset stomach though wears a diaper hes older...he messed on floor...i didnt have nayone to clean it up..i know if hubby had been home he would have but he was gone...i had to clean up and now my back is killing me..just from cleaning up dog mess...its crazy..

i am going to talk to my doctor about the aggressive rest therapy...they may have menitioned it to me and i forgot...but if its helped others i do want to try it...

healthseer i have insmnia and wake up alot also..i cant take ambien it caused me to go mad...i would walk outside talk etc. and never remebmer it...eat at night find the wrappers etc..never remember it...it made me angry and aggressive...and id find angry emails id written etc..not remembering it and id forget who family memebers were and here stories on tv or something confuse with it happening to someone i knew..it made me crazy..so i cant tak it..wish i could...

as far as the exericse im glad to know im not the only one who has had a doctor to tell them to but it sound crazy becuase of the flares and crash afterwards...at first years ago when i was diagnosied i didnt know any better had found first support group or knew anyone wiht it and i did over exercise becuase thats what i was told to do...i kept getting worse and worse..id even cry to one doctor of the pain while they kept telling me to push myself harder...now the most i do is a walk after morphine...but its alsways soreness afterwards...so im thinking i wont even do that..but i enjoy the time with my dauthger main reason i do it..but i need to get better..

its just crazy that they keep pushing exercise...

Maybe try another outdoor activity with your daughter that is not so hard on your body. Like sitting on swings together or on a park bench. Is there anything like that in your neighborhood? Even just putting some in your yard if you have one. I usually can't walk to anything and I can't drive these days and we don't have our own private yard but just sitting outside of our building with my husband is something we can do together while enjoying the fresh air. You just have to come up with a different way of doing things and find different things to do that work WITH your situation not AGAINST it. The rest therapy is something you can do yourself even if your doctor disagrees with it, but of course it would be better if he agreed and saw the value in it too.

 

[taniaaust1]

let my daughter and son do the carrying in of stuff...i hurt as always even thgouh i took it easier

It sometimes does take some time before one sees the benefits of not pushing yourself so hard. Glad to hear that you got them to help you

today the dog has upset stomach though wears a diaper hes older...he messed on floor...i didnt have nayone to clean it up..i know if hubby had been home he would have but he was gone...i had to clean up and now my back is killing me..just from cleaning up dog mess...its crazy..

Sorry to hear about your poor doggy.

i am going to talk to my doctor about the aggressive rest therapy...they may have menitioned it to me and i forgot...but if its helped others i do want to try it...

Most doctors arent even aware of it and how many ME/CFS people do find that it helps.

i did over exercise becuase thats what i was told to do...i kept getting worse and worse..id even cry to one doctor of the pain while they kept telling me to push myself harder...now the most i do is a walk after morphine

Its sad that so many doctors give people bad advice and worsens their condition. Bad advice can be very hard to recover from.. both physically and mentally... It can be like you have been brainwashed and doesnt help the thinking pattern people often need to actually improve some. You may need to like deprogram yourself from poor advice from those who dont understand this illness.

but its alsways soreness afterwards...so im thinking i wont even do that..but i enjoy the time with my dauthger main reason i do it..but i need to get better..

Maybe write yourself a list of things you could enjoy with your daughter which wouldnt end up giving you pain... eg reading or singing together, maybe she'd like you to teach her to cook and plan meals together etc etc. Dealing with this illness involves a whole lifestyle change.

i thought about hte advice id gotten and i told myself to walk slower

I do rush thou the shopping myself as due to the OI I have, the less time Im on my feet the better things will be for me. (I dont know if OI is one of your issues or not). One thing I do do thou IF I need it, is to rest mid shopping on a bench, legs up. I shop twice per week so i dont have to get too much on one trip (for some.. maybe a once weekly shop is better for them).

You just need to trial different ways of doing things to try to work out what is the best way for you to be doing things. What gives YOU less pain, less post excertional symptoms etc. All this isnt something a doctor can tell you. Dont be afraid to experiement to work out what is best for you.

i have insmnia and wake up alot also...and not sleep well for days until so exhuasted i sleep a few hours..very tired all day though..nodding off

Quite possibly you needed to be sleeping more then just those few hours to try to catch up on missed sleep. At times I sleep 19hrs straight, to catch up on missed sleep. If you are nodding off and very tired, you probably need to be in bed getting more sleep. You shouldnt feel guilty or lazy if you need to do this.

Possibly you can trial some more things for sleep. There are many different things we can try. One thing I find thou is the more that i do, the more sleep I need to be getting. Do too much and you may also need to be having regular afternoon sleeps as well. Do not compare how much you need to sleep with a healthy person.


Keep hope that things can improve.

 

[Ocean]

Also, hurtingallthe time, I'm not sure where you live but some grocery stores in certain areas will deliver if you order above a certain dollar amount. If you had that option it would save you a trip to the store if you ordered enough at one time.

 

[hurtingallthetimet]

thanks for the great ideas, me and kids watch tv together and i enjoy that also...
had to take son to doctor i stayed in car while he went in and doctor was great and printed out everything but hes old enough to go in by self and understand but needed me to drive..it was backed up to draw blood so that took awhile and i made myself as comfortable in car as could...i had bad night with little sleep and in very bad pain all over think from weather like alot are going through...it was great because we needed a few things at store and he went in and got while i stayed in car also...i appreciated it so much and thanked God...i was very wiped out though even though i stayed in car...thats what upsets and confuses me the most is the smallest of things can still cause pain flares and i stayed rest of day in bed...so hopefully the aggressive rest therapy will help...i still need to look it up and read up on it good...the kids are making dinner and i just but more muscle rub on and laying back down on heating pad...i wont see doctor for a little bit but very curious about what they think about the aggresive rest thearpy...i hope they have some info and knowledge on it..

thanks again for all the kind replies and advice...i do appreciate that alot

ocean there isnt a grocery store that delivers near me that i know of...i emailed walmart awhile back someone on other support group had mentinoed that they were either doing it in places or going to..but it wasnt in my area....would be wonderful and hopefully it will come to all areas...and hopefully be affordable..as ive said getting grocerys, cleaning up after a dog makes a mess, running an errand it is not normal to feel like dying afterwards, or even after weather changes...hopefully more doctors will do more research and we will find out what is wrong..

 

[Sparrow]

I commend you for trying to make changes. Once you pass a certain threshold (and it sounds like you're definitely past it), this illness seems to just get worse and worse so long as we push ourselves too far.

Unfortunately, I doubt your doctor knows much about aggressive rest therapy. But it is truly as simple as it sounds. And I have heard doctor after doctor say the same thing when it comes to this (the ones who treat ME/CFS patients regularly).

Doing things that leave you worn out = getting progressively worse
Doing things that leave you energy left over = healing

I forget who the doctor is, but I remember reading about one who made his patients promise to stay in bed pretty much entirely for a full year of their lives. Basically to sacrifice a year of life, for the chance at getting better after that. You may need more or less than that. But those are the types of trade offs that can be required to stop the downward progression of this illness.

I know this sounds awful, but if something makes you worn out, and you want to get better, truly I think you just can't do those things anymore (and yes, I know how impossible that probably sounds to you now). Even if the things that make you feel so miserable are tiny little things in relation to what you used to be able to do easily. If cleaning up after the dog takes a toll, you just can't do it anymore. If driving to the grocery store and staying in the car means you need lots of time to recover, you can't go anymore. Which I know is hard to live with. But it would be harder on your family and yourself if you continue to get worse to the point that you can no longer talk, or be in a room with lights, or have vertigo all the time, or can't get yourself to the bathroom, or any of the other awful places this slope seems to lead. And it really does seem that if we continue to push through and try to do things that strain us, inevitably we all keep getting worse and worse until it really does get that bad.

I know that it probably seems impossible to get away with not doing such basic things. But it's not impossible. Just really really really difficult. But it will be just as difficult later if you get so bad you no longer have a choice. Your family will still have to make other arrangements then, when you can no longer do things no matter how hard you're willing to push. Except then you'll be that much worse and it will be even more minor things that you don't want to give up. It is much, much better if you can to head things off sooner rather than later.

This is something I think we've all struggled with in coming to terms with this illness. It is really hard to give up basic activities or duties when you feel like people are relying on you or that you have no other choice. And I know that many of us have to hit "bottom" and have that choice taken away from us completely before it truly sinks in. But if you can learn anything from our experiences, please try to just focus on recovery as soon as you can. Truly, I believe that it will save you a huge amount of suffering and recovery time.

I thought that it things couldn't get much worse for me. But I was wrong. I kept pushing, and ended up so bad that I couldn't even roll over on my own. And I was like that for a very, very long time. Thankfully I backed off pretty quick and have recovered a little. Many people seem to get stuck like that for years if they push too hard. I do not think that I have ever heard of someone continuing to push themselves into crash after crash and still recovering eventually. But I have heard many stories of people doing that and landing in a place where they are truly completely incapacitated. And I really, really don't want to see you be one of those. Those of us who are very bad now were pretty much all "normal" people once, in situations similar to yours...

All the best. I wish you well, and know what a very difficult place it is that you're in. Hugs.

 

[justy]

This might help with understanding how much rest we need to heal

http://www.drmyhill.co.uk/wiki/Getting_enough_rest_-_an_essential_part_of_managing_CFS

Take care, Justy.