Is it possible to get your life back? Has anyone here done it?

[Woolie]

@silky, after only 9 months, you have the best possible chance of improving and even going into remission.

There are lots of recovery stories out there, but bear in mind as you read them that we humans tend to be good at overattributing our successes to our own efforts. So whatever we were doing at the time, we will pick on that as the thing that helped, when it could be something entirely unrelated - or nothing at all (spontaneous remission has happened to a lot of CFSers).

Its good to have a little hope, and to try some stuff. But bear in mind it can also be devastating when you try something that "cured" someone else, believing it will work for you, and it doesn't. So take it all with a huge pinch of salt.

 

[JayneM]

@aquariusgirl Found a Rheumatologist that's been understanding and helpful, also willing to try treatments such as LDN - which didn't work for me. He's also going to try Dr Pridgen's antiviral/Celebrex combo since I responded well to high dose L-lysine + other herbal antivirals (EBV is the cause of this for me). A bit of research on his part and some diagnostics - autoimmune blood work etc.

Amino acids and micronutrient supplements, antibiotics, antiparasitics - Ivermectin (has immunomodulatory effects apparently), FMT, high dose probiotics, far infrared sauna, beta blockers (on occasion), meditation, massage therapy, and pacing has helped me and probably other things that I just can't remember right now.

Lots of other stuff hasn't helped and lots of $ wasted on trying things but I don't regret it. Nobody cares as much about your health and wellbeing as you do, and yes a lot of us are left to our own devices, which is a disgrace but I think it's a testament to how strong we all are to keep searching for answers and trying to help our bodies overcome this illness (or at least improve our situation). I think the tide is slowly changing and it looks like there will be more help in the form of research, diagnostics etc in the future.

 

[TreePerson]

I have had a few remissions and I am about a 70% now (not this week, but the past few months). Going up everyday. I know a few people who are ok not longer around much. They all have had different things to make them well: Literally all different: antibiotic, antivirals, supplement and natural stuff, another with peptides, another with gcmaf...
I was trying to learn from the people that got better and I am having success with analyzing my own issues, and removing physical triggers and body stress (physical things that trigger my body to feel worst). And doing more of the things that work and make me feel good. Took me a while to get where I am.
But to be honest if you understand 2 things:
1) Inmune system: do you do better on modulators, boosters or suppressors?
2) OI: does your body likes vasodilation or vasoconstriction ?
3) If food intolerance are present then a whole process for that.

Once I understood this, and every food and every tea I took would make me react bad or good, then I started to see progress. At first I would google each food and each drink with both (example: is green tea inmune booster or is green tea vasodilator or vasoconstriction?) at first I didn't know any of it. But as I learn: I do well on inmune modulator and on vasoconstriction (vasodilators made me very sick). I take meds of each now and works great in my case.
Hint: I knew the sun made me feel awful, alcohol, hot showers....... That was my hint on vasodilators issues. Felt good: cold showers, some other teas...
Hint: I felt horrible on echinacea tea, zinc, and high of anything that was supposed to be "healthy that would increase the inmune system. Felt great on acai tea (inmune modulator)

Hi @Inester7 do you have other immune modulators that have helped you?

 

[Seven7]

Hi @Inester7 do you have other immune modulators that have helped you?

I guess depends what your individual issue is (you can have a lymphocyte subset test and cytokine profile).
My issue is low NK cell number and activity: so to raise NKs:
LDN (prescription), cicloferon (?), Immunovir (prescription), NK cell activator (OTC), inosine (OTC), AHCC (OTC), shiitake/maitake mushroom (food or OTC). IP6.....

 

[jstefl]

@silky I have been ill since January 1991. My illness started with a cold that never seemed to go away, and continually got worse until 2008. At that time my blood pressure had dropped to 80/50 and my pulse slowed to 50. I was afraid to drive and spent most of my day in bed.

Things turned around for me once I was able to convince my doctor to put me on Valcyte. It was not a cure, but it led to major improvements in my quality of life. My blood pressure and pulse recovered to an almost normal level and the severe headaches that I had been suffering became much more mild.

About this time I discovered Phoenix Rising and tried almost every supplement that was ever mentioned. Some helped a little and others not so much. I found that for the majority of supplements that helped me, I needed to start very slowly and work my way up. Even the vitamins that were a part of the methylation process were very difficult for me at first. When I started LDN, I had to start with a .1 mg dose every other day. If something made me feel worse when I started it, I found that it would probably have a positive effect later on.

You are fortunate that there is a lot more information today than there was back in 1991 when I became ill. Even though we still don't have many answers we know a lot more about this illness. There have been some ideas that haven't worked out, such as XMRV, but we have some, such as Rituximab, that are showing promise and helping some.

I have stopped taking most of the supplements as I have found that after a while they stopped helping. I don't seem to have regressed after stopping any of the supplements except that I am still taking Equilibrant.

I am definitely not cured, but I have a much improved quality of life. I have pretty good mornings and am able to be reasonably active during the mornings. I still need to nap after lunch, but that nap will allow another six to eight hours of activity.

I was very fortunate that I was able to take the Valcyte without major complications. I don't have any proof of this, but it is my belief that the best treatment available today is to start Valcyte immediately upon becoming ill. If you wait too long it will become more difficult to tolerate. Valcyte is a potentially dangerous drug and only should be used under a doctors supervision with the appropriate blood tests. It will probably be difficult to find a doctor to prescribe it and it is quite expensive, but I feel that it saved my life.

John

 

[Tammy]

Yes.............I am slowly getting my life back with EBV protocol after 20 yrs of feeling deathly ill. (taking herbal anti-virals and other supps and clean diet). I could definitely handle how I feel now for the rest of my life. I couldn't say that 2 yrs ago. With the way things have been going.........I expect to gain even more!

 

[silky]

Thank you @TiredBill that means a lot to me

 

[silky]

@TiredBill how bad were you at your worst and how long until you became functional?

And how were you able to meet your wife and start a family while you were sick?

 

[TiredBill]

@silky

At the worst, I felt like the oldest man in the world (despite being 26) and not a very healthy old man at that. I still have memories of being so tired that when it was necessary to get up to go to the bathroom that I'd have to negotiate with myself for the expenditure of energy. So tired. Completely wiped. Utterly exhausted.

As I said, the time came when I felt just staying in bed wasn't helping. So I got up and did what I could. At times that was more than other times. I started working again. Pretty high demand jobs in the television business (editing). I didn't have a lot of extra energy outside work. I had to cut my social world to close friends.

Doing things (within reason) made me feel better. Eventually, I fell into a general equilibrium that I could manage. At times I could "push" pretty hard. Sometimes I pushed too hard and would pay. But mostly I learned to manage my limits.

I met my wife on the job. I was editing material for the Academy Awards show, and attending the Oscars was our first date. Feeling loved (especially by a highly intelligent and beautiful woman) didn't hurt my spirits and motivates me still. And by boy brings me joy every day. Currently, he's playing water polo (a sport I threw him into this summer w/o him having any real swim background, and he is going great).

Sometimes I do feel guilt. Sometimes I feel they deserve more. Especially when bad days hit and I need to protect my energies. But I love these two and try to show them as best as I'm able every day.

Bill

 

[silky]

That is beautiful and very hopeful, thank you @TiredBill

 

[TiredBill]

@silky

One thing I did that was sort of funny when I first reemerged, was to join the Lawn Bowling club in Santa Monica near where I was living. Since I felt like an old man, being in a sport where many in the club were octogenarians seemed perfect.

And it was good. I got out and got sun and fresh air. The game appealed to my WASPy nature and my Anglophilia. I liked dressing in "whites" and having tea. LOL. My first coach was a Cricket player of some renown (from Australia) and later I became one of the few native born American cricketers.

The Lawn Bowls got me out. I could keep pace with the seniors. I felt like I had a peer group.

The point is that with me, little things helped. Getting to the beach. Things like that.

Just find your own pace.

Bill

 

[silky]

@TiredBill hahaha, I think I would enjoy lawn bowling as well. Glad they've didn't mind that you were only 26

How long before you decided to get back out there?

 

[TiredBill]

@TiredBill hahaha, I think I would enjoy lawn bowling as well. Glad they've didn't mind that you were only 26

How long before you decided to get back out there?

@silky The oldsters mostly thought it was pretty cute to have a nice young man in the club (as long as it didn't become a trend) so I was pretty much welcomed as a "novelty."

I started bowls very shortly after I decided to arise from bed. Maybe 6-7 months after I first got ill.

Bill

 

[Jenny TipsforME]

@silky I can't remember if there's any reliable information on this but catching it early does seem to lead to better prognosis (compared to being undiagnosed for the first few years). I've known people who seem to have it about a year and then go back to normal life. Of course it's hard to know whether they had the same biological abnormalities.

Getting good at Pacing and finding a way to rest properly while you're awake will help maximise your chances I think. I got to 95% before and I didn't do anything fancy.

You can improve symptoms with supplements and similar. Generally this is 5% at a time. Not a quick fix. Also you can waste a lot of money so make sure to use some sort of symptom tracker to measure what helps.

Being in California is an advantage (compared to Blighty anyway!). Have you been to OMI?

You have got ill at a time when the research appears to be getting somewhere so hopefully it's unlikely you'll be ill for decades like some of us. Hopefully that will soon be a thing of the past.

Building psychological resilience skills is important though because life with ME is very unpredictable (I also didn't do anything fancy to relapse, a badly timed virus on an overly busy week). I'm not keen on Rudyard Kipling in general but I often think of this in terms of ME:

If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise:

If you can dream—and not make dreams your master;
If you can think—and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’

At the end you won't be a man, as that poem suggests but you may keep some quality of life no matter how your health is currently doing.

 

[eric_gladiator]

I suppose that the improvement will depend a lot on the doctor that treats you and the treatment that you follow, this is very summed up in money and means that unfortunately we do not have

 

[lansbergen]

Getting good at Pacing and finding a way to rest properly while you're awake will help maximise your chances I think

I agree

 

[16bit]

I'm similar to @TiredBill, except that I am struggling to manage work with social life.

I went from stuck in bed and the house to working a physical job (30hrs, five days a week).

This is within a two-year time-frame.

I don't know when I developed CFS/ME. Sometime six years+ ago. My migraines increased to chronic levels, and I now believe this is because of CFS/ME. I completely misinterpreted my symptoms for migraine or cold/flu-related things.

Funnily enough, seeing the doctor and taking their advice [for stress/depression] led me to my first ever relapse. I had had some hard periods before, but this was a level above the rest.

But it led to the fortune of identifying that I had a chronic illness rather than just stress issues.

A combination of things has helped over time, but pacing was my start from that relapse point.

I had to take it step by step. Doing what Bill said, just doing what I could. I would say I kept falling into flares again and again and again when trying to get better. I also fell into situational depression for the first time, so it was tough.

However!! I did not know I had CFS at this time. I did not have a clue what was happening, nor did my doctor.

But persistence was key. That and learning how not to push too far, yet still challenge myself.

It is possible to get better! My specialist said to look at yearly improvement, which (as a highly impatient person) I find horrifying. However, when I do look back, I am improving each year. So that's good.

You know various tools people with CFS/ME use to help. You have access to information about CFS/ME to identify your symptoms, triggers, and so you can learn about yourself. Therefore, you can implement all of that to progress forward with time.

Once I feel I'm relatively stable, I make a change. I did this with my sleep most recently (goal: zero naps, awake for 16hrs per day). I admit, I thought it was a big mistake once I begun. Two weeks in, I felt like death.

In my experience, I feel worse before I begin to feel better. But I worried about work, as I got slower. Thankfully my workload also lowered, so it didn't make a big effect. I could get away with continuing.

A few months later and my body has adjusted. I don't feel more rested, of course. But my aim is to do the best for my body whilst it goes through this. So at every chance I can, I try to do something to help it be at its best.

Not everything has been available to me, but as I go along.. more opportunities come up and I take them.

Someday, I hope to get to a point where I can socialise and work together without flaring up. So that is what I am actively heading towards now. Not purposefully, I am just trying things out and hoping it leads me there.

Definitely don't allow your current self to limit your imagination of your potential self.

 

[JaimeS]

At the end you won't be a man, as that poem suggests

Jenny, I gave that poem, framed, to my nephew this past Christmas. It's marvelous: so eloquent!

@silky -- don't give up hope.

My case wasn't 'very severe' but I was housebound a great deal of the time in the first year of my illness, and spent days at a time in bed. It was misery-inducing: the worst. I don't need to go into it here, because everyone here already knows.

It has taken a lot of patient self-hacking and insistence on being scientifically rigorous regarding whether certain things made me worse or better for me to 'improve'. And as I said to another patient very recently, I haven't really improved: I've just plugged the dam in a bunch of places. If I stop taking any of my core supplements, I revert to my original horrible, horrible baseline in three missed doses or so. But the point is that I'm successfully managing my condition.

(Which reminds me... *takes afternoon pills*.)

I went from not working at all, to working part-time from home, and now I'm working in-person full-time in a laboratory job at Stanford. Improvement is possible for many / most. However, as I always feel compelled to add, there are those who do everything 'right' and don't see improvement. I don't want us to ever edge towards what the BPS "scholars" do to us and imply there's some sort of righteousness in improvement. I worked very hard to get here but I know others who have worked just as hard but their illness or their genetics places them in a worse starting position, or holds them back with a more insistent grip.

 

[TiredBill]

I'm similar to @TiredBill, except that I am struggling to manage work with social life.

I went from stuck in bed and the house to working a physical job (30hrs, five days a week).

This is within a two-year time-frame.

I don't know when I developed CFS/ME. Sometime six years+ ago. My migraines increased to chronic levels, and I now believe this is because of CFS/ME. I completely misinterpreted my symptoms for migraine or cold/flu-related things.

Funnily enough, seeing the doctor and taking their advice [for stress/depression] led me to my first ever relapse. I had had some hard periods before, but this was a level above the rest.

But it led to the fortune of identifying that I had a chronic illness rather than just stress issues.

A combination of things has helped over time, but pacing was my start from that relapse point.

I had to take it step by step. Doing what Bill said, just doing what I could. I would say I kept falling into flares again and again and again when trying to get better. I also fell into situational depression for the first time, so it was tough.

However!! I did not know I had CFS at this time. I did not have a clue what was happening, nor did my doctor.

But persistence was key. That and learning how not to push too far, yet still challenge myself.

It is possible to get better! My specialist said to look at yearly improvement, which (as a highly impatient person) I find horrifying. However, when I do look back, I am improving each year. So that's good.

You know various tools people with CFS/ME use to help. You have access to information about CFS/ME to identify your symptoms, triggers, and so you can learn about yourself. Therefore, you can implement all of that to progress forward with time.

Once I feel I'm relatively stable, I make a change. I did this with my sleep most recently (goal: zero naps, awake for 16hrs per day). I admit, I thought it was a big mistake once I begun. Two weeks in, I felt like death.

In my experience, I feel worse before I begin to feel better. But I worried about work, as I got slower. Thankfully my workload also lowered, so it didn't make a big effect. I could get away with continuing.

A few months later and my body has adjusted. I don't feel more rested, of course. But my aim is to do the best for my body whilst it goes through this. So at every chance I can, I try to do something to help it be at its best.

Not everything has been available to me, but as I go along.. more opportunities come up and I take them.

Someday, I hope to get to a point where I can socialise and work together without flaring up. So that is what I am actively heading towards now. Not purposefully, I am just trying things out and hoping it leads me there.

Definitely don't allow your current self to limit your imagination of your potential self.

I just want you @16bit to know I too struggled to manage a social life with work. I've tended in life to be an extrovert (of the milder sort), but I needed to trim my social world way back to very close friends and family. And sometimes not even that when things were really bad.

Like you, what's worked for me its trying to find that balance point where I push myself enough to improve my life, but not so hard that I provoke relapses, crashes, and setbacks. And that balancing point has been anything but a static one over the years.

For me, it has been almost like a conversation with myself where I access where I am that day, and determining what will be good for me and what won't be. In the early stages of this disease, there were drastically more limitations than later. But the "conversation" with myself has never ended.

If I had a single word of wisdom to offer a person with CFS/ME it would be to know yourself, listen to your body, don't do more than what is good for you, but also try to extend yourself when you feel it will be of benefit. We need to be masters of our "energy levels," honoring those times when pushing through and exerting oneself is the worst possible mistake one could make (and one that will provoke a heavy price), and when getting out a doing something is a positive.

It is a tricky balance, one that only CFS sufferers themselves can ascertain, and until we have a cure or better treatments is the path that has helped me.

Bill

 

[silky]

@JaimeS what an incredible story! Are you able to have a social life as well now?