what are the chances of some sort of recovery???

[crosser]

ive had cfs for 7 years and was managing ok until 5 months ago when working on my house i was stupid to keep pushing myself to try and get it done for xmas.... i had a huge crash and went from doing work on house to bedbound in a matter of a week... after 5 months in bed im still no better, is that it for me now? have i blown it? just wanted to know what my chances are of some sort of recovery as the house is a building site.. thanks again

 

[helen1]

Hi Dave
Sorry to hear of your crash. Yes, people on this site have come back from being bedbound, some even functioning remarkably well. You might check out Idie, xrunner, howirecovered, skyline, stridor, Freddd, asklipia, Caledonia and ahmo for starters to see what they've done as treatments.

@crosser

 

[charles shepherd]

There is another discussion taking place on prognosis on this forum at the moment, which you might find helpful:

http://forums.phoenixrising.me/inde...s-according-to-cfs-me-working-group-uk.42743/

 

[minkeygirl]

I think you have to consider what was causing your ME/CFS in the first place. What issues you had, then that will help determine what course of action to take now. I had 2 serious crashes which felt like mono. I couldn't keep my eyes open, my head up, could barely move. I was wiped out all the time. I upped my Famvir and I was almost back to where I was within days. Not kidding.

There is no one size fits all for us so it's trial and error.

 

[crosser]

i dont know how it started.. just found things got harder to manage over a period of time, slept fine etc then since the crash sleep has been difficult... since the fatigue started ive never had a cold or illness etc.. i also dont suffer with any pain like most... not sure what mono is so will look it up.... thanks

 

[ahmo]

@crosser Sorry to hear of your situation. I was very fortunate to have had good results from diet (GAPS) and methylation protocol, + detox. Things to check out include thyroid, gluten intolerance. My ME is not cured, but I'm no longer plagued by many symptoms, I've learned to live within my energy envelope. good luck.

 

[panckage]

i had a huge crash and went from doing work on house to bedbound in a matter of a week... after 5 months in bed im still no better, is that it for me now?

I had a crash that greatly worsened my symptoms. As a result even things like doing the dishes or cleaning up my apartment became near impossible. Trying to pick anything off the floor pretty much meant I had to lie down right away. It only took a few short months for this deconditioning to occur

As it turned out though, at some point I had recovered from the crash and it was primarily muscle deconditioning contributing to my worsened condition.

After 6+ months of re-strengthing my body I am back to previous less severe CFS symptoms. Strength training is incredibly slow unfortunately even though I am just considered a 'mild' case

 

[*GG*]

i dont know how it started.. just found things got harder to manage over a period of time, slept fine etc then since the crash sleep has been difficult... since the fatigue started ive never had a cold or illness etc.. i also dont suffer with any pain like most... not sure what mono is so will look it up.... thanks

Might want to talk to a Dr about Trazadone or Remeron, I have been on both for sleep, currently Remeron and I wake up feeling more refreshed, not great, but better.

GG

Welcome to the forum, wish you better health!

 

[taniaaust1]

"I just wanted to know what my chances are of some sort of recovery"

Over time ME/CFS often does improve but seeing you've got bad again after 7 years, that may not be a good sign.

You may not have a lot of chance of improvement if you aren't slowly improving from the crash you had UNLESS you do something different. If you have stabilised at that level you are at, without change, a change for the better in your situation may be unlikely. So find something which does help you a bit (some treatment of some sort or treatment of symptoms) or eliminate things which trigger the ME/CFS off. Do something different.

 

[JPV]

since the fatigue started ive never had a cold or illness etc.

I rarely get colds or flu either. Sounds like your immune system is in overdrive.

I've gotten the most relief by modifying my diet and taking certain probiotics, such as Clostridium Butyricum.

I think Ken Lassesen's blog is a good place to start regarding diet and gut bacteria. He's recovered from ME/CFS 3 times...

CFS Remission

 

[PeterPositive]

not sure what mono is so will look it up.... thanks

I think she's referring to mononucleosis:
https://en.wikipedia.org/wiki/Infectious_mononucleosis

cheers

 

[alex3619]

The chances of some kind of improvement are good. Because ME and CFS fluctuate and are affected by many factors you can expect to have some improvement over time, but for many this does not eventuate, and for most its temporary.

Chance of a full recovery if you have been sick more than three years is low, and after five years is very low.

Chance of recovery in the first year is high, and declines after that. Claims of full recovery in the scientific literature are suspect. One such claim is very suspect, with recovery overlapping with severe disability. It pays to investigate such claims.

Its hard to say more about this because there is a dearth of good research. Full recovery rates can be 10% or 1% or even 0% depending on what you read.

 

[Kati]

i think our chances of improving over time will improve with good research and research breakthrough. i put my money on research and understanding mechanisms of illness, which will lead to treatments.

Never give up hope!

 

[crosser]

full recovery i know is pretty much nil but anything above being bedbound is what i meant.. just being able to potter in the garden or put up a shelf would be better than this... the boredom and frustration of staring at the same 4 walls is so hard .... suicide thoughts get more frequent as you slowly realise theres no way out....

 

[Sushi]

full recovery i know is pretty much nil but anything above being bedbound is what i meant.. just being able to potter in the garden or put up a shelf would be better than this... the boredom and frustration of staring at the same 4 walls is so hard

Many of us have improved--not usually through one silver bullet but lots of little strategies. Trouble is that the same ones don't work for all, but I think it is possible for many of us to improve our functionality enough to make a big difference. It becomes a career though, implementing all the little protocols that help.

 

[cb2]

I think you have to consider what was causing your ME/CFS in the first place. What issues you had, then that will help determine what course of action to take now. I had 2 serious crashes which felt like mono. I couldn't keep my eyes open, my head up, could barely move. I was wiped out all the time. I upped my Famvir and I was almost back to where I was within days. Not kidding.

There is no one size fits all for us so it's trial and error.

Hi @minkey thanks for sharing how the famvir helped you.. do you mind if i ask how much you were taking and how much you increased and for how long? i just recently have had an epsiode like you both descriped..exhausted can barely move. thanks!

 

[Kati]

full recovery i know is pretty much nil but anything above being bedbound is what i meant.. just being able to potter in the garden or put up a shelf would be better than this... the boredom and frustration of staring at the same 4 walls is so hard .... suicide thoughts get more frequent as you slowly realise theres no way out....

Hi @crosser, for me it's been 7.5 years. My health is on a decline right now, it has been for a good 6months, if not more. I went from biking, running, and taking classes ( pre-illness) to being housebound and spending most of my time in bed. Keeping the brain busy is definitely a challenge especially when the brain is hurting so much doing so little. It is not impossible, regardless of your level of illness, @crosser .

You say you wish you could garden- could you make this a reality for this summer, with the help of a couple buddies, or volunteers? Could you have a place to lay down in the back yard, and where the garden is taking care of itself for the most part and all you have to do is water? Everything is into the planning and breaking it down in very small steps.

i don't like to hear the 'S' word, personally because it happened to a friend of mine- 18 mo ths ago and. It is so tough for me to hear people hurting so much that they want to check out. Please don't check out. The journey is not an easy one. But it doesn't mean it will be horrible.

As a group, there is so much to be done. If your heart is up to it Jennifer Brea is looking for footage of pts talkimg about the disease. Have you checked out MEAction? What can you do to move our cause to the next level?

Sending best wishes. Kati

 

[hellytheelephant]

@crosser crashes are so scarey.....and it you are like me, i waste a good amount of energy beating myself up about what I shouldn't have done.
I had severe ME/cfs for 9 years and was bedbound for 4. I then recovered enough to go backpacking, and work nearly full time.
Now I have been sick again for 2 years and am moderate to severe...so I know things can get better...and they can get worse. BUT who in this world does that not apply to?
Keep hanging in there- and keep checking in with PR- I find it is a brilliant tonic to shoot the breeze with folks here.

" It will all be all right in the end, and if it's not alright-then it's not the end."

 

[rebar]

Sorry to hear about your struggle, a couple of things. I've been there and I'm still very ill, but my life has improved.
I've tried most everything ever suggested on this site with little of it helping. Pacing and diet have helped, the perfect health diet is a good place to start. It's really important to alter the mental negative stuff- it can deplete the hell out of you. Pacing is crucial. Journalling can help determine patterns, and treatments, I've often gone back and benefited from reading entries made previously. If you truly have suicidal thoughts you must deal with that, I speak from experience. Working on my gut, I believe has help my feelings of despair. I also take Lamictal, (lamotrigine),
I've never seen it posted here on P.R. but it's been a constant for me for about 10 years. It's used for bipolar but at much a higher dose than what I take, I break a 25mg in half so 12.5.
Last, if you don't meditate, learn.

 

[minkeygirl]

@cb2 I am currently on 1000 mgs famvir. I had to start and stop several times before I could get to that dose. I would take 250 and the first few days I'd be in pain. Once the pain settled I'd up it. I waited for the pain to settle, usually about 2-3 days then I would go up. Pain for me was my back totally knotting up. Once I got to the 1000 it has not been a problem.

When I had my first "viral reactivation" I slammed the dose up, not worrying about the pain and almost immediately I felt better. The 2nd time I stopped the famvir for 2 days, then started back up to 1000. I don't remember that being too bad.

It was totally worth it, especially since I knew it would only be bad a few days, especially given the alternative