What is the course of your ME/CFS?

[Neunistiva]

If there was an option which described relapsing-remitting, but gradually improving, I would tick that.

At the beginning I was bed bound. Now I have short periods of being housebound, but mostly periods of being able to work a few hours a week, and periods of being able to work 3 days a week, lasting a few weeks at a time. A bad day now is much better than a bad day was at the start of my illness. I am gradually getting better. I have been sick for 14 months.

It was exactly like that for me for the first two years. First few months bedridden and then slowly improving. After 2 years passed I started to continously decline, with only tiny improvements that would soon turn to worsening again.

Take care of yourself! Make sure you don't crash.

in my head the most common pattern was relapsing-remitting and staying about the same (after the first few years of illness, anyway).

According to this poll majority get worse over time http://forums.phoenixrising.me/inde...t-slowly-worse-better-or-remain-stable.57646/

 

[PracticingAcceptance]

It was exactly like that for me for the first two years. First few months bedridden and then slowly improving. After 2 years passed I started to continously decline, with only tiny improvements that would soon turn to worsening again.

Take care of yourself! Make sure you don't crash.

Thanks... yeah... in October, I got much worse - thought it would improve but no. I've been like this for months now - not all that much improvement, though not getting worse. Suspect I need to rein in activity more, but it's so difficult to do that emotionally - until you realise you don't have a choice.

 

[jesse's mom]

i chose 2 my illness (i'm trying to make friends with it by calling it mine) came on suddenly with a high fever in 2011. I also had an immunization for meningitis a few months before I got the fever 104f. I call that the beginning of all this.

BUT and it's a big butt, I had mono as a teen and never gained back my endurance in sports and was an allstate singer... from the time I had mono my throat has been sore (40 years) in the morning and I never sang the same again. I do very much think it is all connected

. i also think the initial illness gives me the triggers from sugar and bread and MSG.But I was still doing hair, running the business and raising two kids as a single mom till the bottom fell out. and that was in the fall of 2011. every time I get really afraid or upset, i relapse. anytime I get drunk, I crash... It seems like being upset really makes me worse. i feel like i need to be rolled up in bubble wrap, but then i couldn't breathe. I was hospitalized for 11 days this past fall for the flu and pneumonia... talk about not being able to breathe! today i can breathe, it's a good day.
I think this poll is a great idea

 

[1gooddog]

These are questions and applications for MS. That had been my dx for a few years after first doc was derided for dx CFS.

First episodes minor and short with long periods of complete remission. Then 2007 and dx of CFS, which all my other docs derided. And of course they referred to Psyche. I was furious.

2012 Very severe episode, diagnosing MS, then not diagnosing MS and said there was no answer and we will never know. Still pushing psyche. 2012 severely involved my eyes. I had some recovery, but incomplete. In 2017 a severe relapse. More testing since with new physicians - KP who bought out Group Death and I have no choice in the matter - more MRIs led docs to dx old stroke, involving my eyes and "causing the weakness on the R side of my body". As I tried to explain the weakness is equal on both sides. One neuro said multi-symptom syndrome. The situation with my eyes, balance, dizziness has gotten worse. I blame it on muscle fatigue. I feel it has progressed, with very limited and incomplete periods of remission. I am anxious to see what degree of remission, if any, I will see this year. However, I have to remain positive.

 

[1gooddog]

Thanks... yeah... in October, I got much worse - thought it would improve but no. I've been like this for months now - not all that much improvement, though not getting worse. Suspect I need to rein in activity more, but it's so difficult to do that emotionally - until you realise you don't have a choice.

As a 70 yr old mother, grandmother, chief cook and all that, I find it so impossible to rein in activity. However, I do pay the price for simple household activities. To make things worse I have extensive facet joint hypertrophy in my back and neck, causing pain, which dampened my activity even further. Right now the severe relapse of CFS is actually over riding the back pain.
I had "glandular fever" in 1950's. Mono in 1967, which was the new name for glandular fever. My son had a very severe case of mono in 1994 that lasted at least 9 months. ( The school board was furious that he missed almost a year of school and still maintained a B+ average.) Now I worry about his future.

 

[PracticingAcceptance]

from the time I had mono my throat has been sore (40 years) in the morning and I never sang the same again.

This is interesting. I get a sore throat in the morning too. It often goes away as the day goes on.
I've always been susceptible to getting viruses, since I was a child.
Do you sneeze in the morning? I used to do that every day when I woke up, but not since I've had CFS.

As a 70 yr old mother, grandmother, chief cook and all that, I find it so impossible to rein in activity. However, I do pay the price for simple household activities.

It's very difficult to break out of the role we have been socially conditioned to play - what we expect from ourselves, what others expect of us. What kind of level of pain/fatigue would you have to experience for you to decide to do things differently?
I don't have dependants which is fortunate in my condition - it's gotta be difficult for you.
I had a business which has now collapsed, and people lost income because of my health. It was bad for them when I was still working, because I wasn't able to work well enough - and it was terrible for my health. At least now I'm not working, it's good for my health. Terrible for my bank balance, but my health absolutely has to come first now.

Trying to say... there's a value choice here, and a practicality choice depending on how bad your health is.
You're damned either way.

 

[1gooddog]

This is interesting. I get a sore throat in the morning too. It often goes away as the day goes on.
I've always been susceptible to getting viruses, since I was a child.
Do you sneeze in the morning? I used to do that every day when I woke up, but not since I've had CFS.



"It's very difficult to break out of the role we have been socially conditioned to play - what we expect from ourselves, what others expect of us. What kind of level of pain/fatigue would you have to experience for you to decide to do things differently?"
I don't have dependants which is fortunate in my condition - it's gotta be difficult for you.
I had a business which has now collapsed, and people lost income because of my health. It was bad for them when I was still working, because I wasn't able to work well enough - and it was terrible for my health. At least now I'm not working, it's good for my health. Terrible for my bank balance, but my health absolutely has to come first now.

Trying to say... there's a value choice here, and a practicality choice depending on how bad your health is.
You're damned either way.

 

[1gooddog]

I must correct you in that i have never played role because society expected it. I have held many jobs however, being wife, mother, grandmother and pet owner were my first loves. I am all that. I cook, i knit, i sew, and love it all. I also garden and paint the house. That is my identity. Al8ng with a past life of breeding training and riding horses, bicycli g, swimming travel and hiking. Just to name a few. My husband of 2 years can and willingly does the cooking, shopping and housework, but i am better at some of it. My children and grands, Iive 2000 miles away. And we do manage, even though I miss my own cooking. I have all but given up driving and all my life I was fiercely independant. Just because i have handed over the reins and become dependant in no way means i dont m8ss it. Many, like me have done it.

Everyday I try to do one small chore. It isn't in me to not try. My PCP in NE was always amazed at what I manage. This isn' my first or last rodeo. I may be bed ridden now, but i still keep fighting.
What is the question about sneezing? Everybody sneezes. I do several times a day. My sore throats are like a headache in my throat and short lived.
I think we are so in tune to our bodies we tend to worry about every little thing

 

[1gooddog]

I must correct you in that i have never played role because society expected it. I have held many jobs however, being wife, mother, grandmother and pet owner were my first loves. I am all that. I cook, i knit, i sew, and love it all. I also garden and paint the house. That is my identity. Al8ng with a past life of breeding training and riding horses, bicycli g, swimming travel and hiking. Just to name a few. My husband of 2 years can and willingly does the cooking, shopping and housework, but i am better at some of it. My children and grands, Iive 2000 miles away. And we do manage, even though I miss my own cooking. I have all but given up driving and all my life I was fiercely independant. Just because i have handed over the reins and become dependant in no way means i dont m8ss it. Many, like me have done it.

Everyday I try to do one small chore. It isn't in me to not try. My PCP in NE was always amazed at what I manage. This isn' my first or last rodeo. I may be bed ridden now, but i still keep fighting.
What is the question about sneezing? Everybody sneezes. I do several times a day. My sore throats are like a headache in my throat and short lived.
I think we are so in tune to our bodies we tend to worry about every little thing

 

[1gooddog]

My experiences have been remitting and relapsing for 11 years. When I felt up to it I exercised a lot til a day would come when I couldn't. Several times I thought the exercise helped and after the relapse I realized I was wrong. Just part of the R & R pattern. Even stretchi g in bed sets off jello muscles in my leg and heart. Are we having fun yet?

 

[jesse's mom]

This is interesting. I get a sore throat in the morning too. It often goes away as the day goes on.
I've always been susceptible to getting viruses, since I was a child.
Do you sneeze in the morning? I used to do that every day when I woke up, but not since I've had CFS.

If I sleep more than 4 hours I seem to sneeze for a while in the morning, wake up with swollen eyes like an allergy. I just finished the book Through the Shadowlands and I am so afraid I have this mold allergy she describes...
We had to turn on the air conditioner at my house a few days ago; spring is here in the deep south in the US. I felt better, did way too much and am suffering so badly today. Slept 4 hours last night now I feel like tremors in my core and pain in my joints.

 

[PracticingAcceptance]

Sorry @1gooddog if my post came over as accusatory. That wasn't my intention. You don't need to defend yourself or your choices.

It's my identity to be a designer and entrepreneur. I'm currently mostly stopped from living out my identity - just the occasional conversation with friends about those things, and being creative and inventive in the everyday helps me retain that identity. It tore out my heart to stop working.

I'm also a fiercely independent sort. My therapist keeps saying that I need to stop fighting - I'm still booming and busting, and the CFS clinic said I need to rein in activity until I stop boom and busting. It's so hard to do less when I've been so driven my whole life.

The sneezing thing - I don't mean one sneeze - I mean about 10 successive sneezes, uncontrollable. I put it down to allergies. The doctors could never satisfactorily explain why that happened every day when I woke up. Something about dust in my room... but then why would it be the only time of day that I sneeze like that? I'm not worried, just curious to see if anyone else also experienced that.

I'm a bit confused why entire posts are being quoted as their own post - is that a 'thing'? What does it mean?

 

[jesse's mom]

@lior right???

 

[jesse's mom]

yes, uncontrollable sneezing. for like 10 minutes. You should have seen me trying to drive my daughter to school driving into the sun sneezing my head off with a box of tissue in my lap. I am mostly unable to drive her this year:/

 

[1gooddog]

Sorry @1gooddog if my post came over as accusatory. That wasn't my intention. You don't need to defend yourself or your choices.

It's my identity to be a designer and entrepreneur. I'm currently mostly stopped from living out my identity - just the occasional conversation with friends about those things, and being creative and inventive in the everyday helps me retain that identity. It tore out my heart to stop working.

I'm also a fiercely independent sort. My therapist keeps saying that I need to stop fighting - I'm still booming and busting, and the CFS clinic said I need to rein in activity until I stop boom and busting. It's so hard to do less when I've been so driven my whole life.

The sneezing thing - I don't mean one sneeze - I mean about 10 successive sneezes, uncontrollable. I put it down to allergies. The doctors could never satisfactorily explain why that happened every day when I woke up. Something about dust in my room... but then why would it be the only time of day that I sneeze like that? I'm not worried, just curious to see if anyone else also experienced that.

I'm a bit confused why entire posts are being quoted as their own post - is that a 'thing'? What does it mean?

 

[1gooddog]

I apologize for over reacting and after giving it further thought I did unedrstand your point.
I am defensive in that nobody gets it. As you well know. I have yelled at doctors. Lol
I know what it is like for you. I was forced into retirement in 2008, I had been an insurance agent for many years Two hrs a day commute when i was too fatugued to use the pedals. Fallung asleep at work, taking nap breaks then the ensui g depression and anxiety. I still have it when I feel so useless and unable to enjoy life.

Since a very severe episode in 2012 I have had eye and heart involvement. Hypersensitivity in all senses.

No social life, no linger wanting one. Too much effort. Turning down visits from family. But at keast I have my knitting, which severely fatigues my eyes. Also now watching Amazon videos. Currently addicted to Downton Abbey.

Re sneezing: I have always been a sneezer. 10, 12 in a row is exhausting. Docs once said allergic rhinitis. At 19 tested positive for molds and house dust. Hard to avoid especially where I live.

Researching mast cells, cytokines, phages,. One leads to another. We have to be our own advocates. Husband picki g up Zyrtec today.

 

[hamsterman]

Like a lot of people here... I was just spiraling downwards, getting worse and worse... .for about 15 years. But once I understood everything... I've been able to be back in the first category. I sorta feel like I am getting better... because I've been Pemming less and less, but I know I've just really stabalized. I just had my first pem in over 3 months, and I forgot what a 'hell on earth' experience it is.

 

[Stretched]

Like a lot of people here... I was just spiraling downwards, getting worse and worse... .for about 15 years. But once I understood everything... I've been able to be back in the first category. I sorta feel like I am getting better... because I've been Pemming less and less, but I know I've just really stabalized. I just had my first pem in over 3 months, and I forgot what a 'hell on earth' experience it is.

Sorry you’ve got the dreaded Plague. Yes it is terrible. Did it sneak up on you or did you know you pushed too hard, somewhere?

 

[hamsterman]

Sorry you’ve got the dreaded Plague. Yes it is terrible. Did it sneak up on you or did you know you pushed too hard, somewhere?

I knew exactly when I caused it. It was as obvious as PEM triggers come. It was 90% stress, and 10% physical... I was trying to do something with a deadline, and everything was failing. With each fail, I could feel more of the 'fight-or-flight' adrenal response. After about 25 minutes of this... I could feel my head ringing. I tried to hibernate afterwards... and took lots of BCAA and CoQ10 (wishfull thinking), and 25 hours later... I was in a catastrophe of my own making.

I havent had a traditional 'physical exertion' PEM in about 8 months. I've really sorta 'mastered' that now. But I continue to do stupid things that cause stress, or conversational engagement... and those always end bad.

 

[Stretched]

I knew exactly when I caused it. It was as obvious as PEM triggers come. It was 90% stress, and 10% physical... I was trying to do something with a deadline, and everything was failing. With each fail, I could feel more of the 'fight-or-flight' adrenal response. After about 25 minutes of this... I could feel my head ringing. I tried to hibernate afterwards... and took lots of BCAA and CoQ10 (wishfull thinking), and 25 hours later... I was in a catastrophe of my own making.

I havent had a traditional 'physical exertion' PEM in about 8 months. I've really sorta 'mastered' that now. But I continue to do stupid things that cause stress, or conversational engagement... and those always end bad.

Sounds like a little wisdom serves you well but not quite enough. Haven’t we all pushed past that line of no return? I have long held that mental stress is behind, if not the cause for a great deal of CFS (symptoms and etiology). It’s hard to define, like art but you know it when it’s around.

Regarding PEM, I’ve seen several threads on what to take to ward off PEM. I don’t recall the specifics of any successes but your post is prompting me to again search here and the other 3 major sites. Maybe there’s also a tonic some hard driving PWCs have found that works to minimize the ‘hangover’ effects. ‘Hope yours dissipates soon.