is this the new baseline?

[hmnr asg]

hi there,
I have had CFS since 2010 and initially it was very bad but over time i went to around 50% of my functioning level (minus sports).
Around May 20th I crashed pretty hard. For a month before that i had been feeling super tired but i didnt back off my regular activities and on the 20th i went to a social gathering that took way too much out of me.
Since then i have been hovering around 10% functioning capacity. It has been more than a month now.
I guess im wondering, if this my new baseline? before this point when i would crash it would take maximum of 2 weeks but there was always a return to my usual baseline which hadnt changed in a while.
But this time feels different. The crash is much worse and there is no sign of improvement.

I guess its hard to answer this question and i just want to hope that maybe there is a chance i can go back to my old crappy self from this new much more crappier self


thank you!

H

 

[Wishful]

My baseline has been pretty stable over the 17 years, so by that I would guess that your crash is temporary.

For me, my symptoms abruptly get worse, and stay so until I take some T2 (3-5 diiodothyrone) or iodine (part of which the thyroid gland converts into T2), and that resets something and brings me back to my regular baseline. I have to do that every 21 days (pretty precise and consistent timing). T2 may not work for you, but this does show that it's possible to drop from baseline and return with the appropriate treatment. BTW, T3 and T4 don't have any effect, while T2 does.

If you have some supplemental iodine (a daily multivitamin/mineral tablet worked for me originally) or some tincture of iodine, you could give it a try. If you've already had a multivitamin/mineral tablet and it didn't work, T2 probably won't help either, but really I'm just guessing.

Also, my ME/CFS started with a type IV food sensitivity. Triggering on a food would cause a flare up of symptoms 48 hrs later, then fade again over an hour or so. A small basket of cherries triggered a particularly bad reaction, and made my symptoms flare up and stay there. I quickly went to my doctor, told him I was now stuck with maximum symptoms and that I'd probably treat it with suicide, because there was no point in staying alive with that. He gave me a prescription for prednisone, and after 5 days of no effect, it kicked in and gave what felt like full remission. It wore off, but I returned to my previous baseline and temporary flare-ups. Prednisone gave remission the second time I tried it, but then stopped having any effect after that. I consider prednisone a big hammer to get things unstuck. If you haven't had that before, I'd recommend trying that before giving up.

I'm not sure what else to recommend to try to reset things, but my experience is that it is possible.

 

[hmnr asg]

hi there,
Thank you so much for the reply. I do take iodine along with a lot of other stuff.
Prednisone would be a great idea but its very hard to get a doctor to prescribe it for me! I am being seeing by Dr Montoya's clinic and i just changed my family doctor. I really cant imagine either one giving me prednisone. I am willing to buy that stuff off the street if i could

I am also in a similar situation as you were. If this is my new norm, there is really not much of a point to it.
I just wish i had listened to my body I wouldnt have been in this situation.

Thank you

H

 

[lafarfelue]

Sorry to hear of your crash and relapse. It seems to be different for everyone.

For what it's worth, I had a mild relapse for a few months earlier this year and was petrified I wouldn't make it back to my previous baseline. It was awful every day until one day it kinda felt like it wasn't so bad anymore. And it took another 2wks of feeling not-so-awful for me to trust that I was improving ever so slightly.

I'm trying really hard to take it super easy now, for the exact reason of wanting to not slide backwards to never return.

Keep taking it easy, if you can find a good functional medicine doctor, perhaps they can help you figure out what supplements might help you improve small percentages at a time (rather than you guessing on your own).

 

[hmnr asg]

thank you @lafarfelue for the reply.
I would have a chance to recover but i have a job"ish" which is paying for my rent and the recent crash has piled on the unfinished tasks. So the longer i stay in the crash the more work i have to do and the more emotional stress. So its almost like once you crash a little it becomes a perpetuating cycle that you cant get out of and you are just forced to push yourself more.
I already told my boss i want to go on a short term disability and he told me no chance.
i know i shouldnt complain since most people here have lost their careers I'm very much underemployed but even this job seems to be slipping away from me.

I suppose it can not be helped

H

 

[lafarfelue]

thank you @lafarfelue for the reply.
I would have a chance to recover but i have a job"ish" which is paying for my rent and the recent crash has piled on the unfinished tasks. So the longer i stay in the crash the more work i have to do and the more emotional stress. So its almost like once you crash a little it becomes a perpetuating cycle that you cant get out of and you are just forced to push yourself more.

I can understand this to an extent.

I work full time and have an agreement to work 2 days from home on alternating days. I also have an agreement with my manager where I can take days off on 1/2 leave pay rather than sick leave (unless I can get to a dr and/or need multiple days off in a row) so that I have days where I can just rest.

When I'm worse, it feels like I won't be able to drag myself back to a better baseline, but working from home helps and I try to employ my leave as strategically as possible for my health. I don't know if it'll be possible to keep this up in the long term, but so far it seems ok. Part time would be better but I need to figure out a longer term plan for that (moving out of a major city, finding a new job and place to live etc).

 

[hmnr asg]

I can understand this to an extent.

I work full time and have an agreement to work 2 days from home on alternating days. I also have an agreement with my manager where I can take days off on 1/2 leave pay rather than sick leave (unless I can get to a dr and/or need multiple days off in a row) so that I have days where I can just rest.

When I'm worse, it feels like I won't be able to drag myself back to a better baseline, but working from home helps and I try to employ my leave as strategically as possible for my health. I don't know if it'll be possible to keep this up in the long term, but so far it seems ok. Part time would be better but I need to figure out a longer term plan for that (moving out of a major city, finding a new job and place to live etc).

I think im really in denial. My goal is to just sit at my desk so my boss wont harass me about being late or leaving early. But in fact im really not doing anything.
I have to either come up with a new arrangement with my manager or quit my job. I feel guilty getting paid and just sitting here starring at my monitor

Thank you again for the advice! working from home will really be good if they agree but i doubt it.


H

 

[*GG*]

I already told my boss i want to go on a short term disability and he told me no chance.

i know i shouldnt complain since most people here have lost their careers I'm very much underemployed but even this job seems to be slipping away from me.

I suppose it can not be helped

H

That doesn't sound right to me, if you are disabled, you need to go to a Dr for documentation that you are in a crash, cannot work, and need to rest!

I was out of work for nearly 3 months on Short term disability. I pushed myself to go back, because I was not sure of the implications of being out longer, and then switching to LTD. My Dr was not likely going to be supportive of that

GG

 

[Wishful]

I don't know if it applies at all, but I was feeling much worse for a couple of weeks, and worried whether I'd set myself back to a lower baseline. Then my sprained arm stopped being inflamed, and I abruptly returned to feeling much better (Whew! Disaster avoided! ). Maybe your activities triggered an immune response, either autoimmune or to a dormant virus that reactivated when you depleted your resources. It wouldn't hurt to try some immune suppression or antiviral treatments. I'd try things that help the body fight a virus first, because immune suppression might slow the fight against a virus.

Altered microbiome is a possibility too. Going past your limits might have made it possible for bad bacteria to increase, causing immune activation, which depletes more resources... It might also make your diet worse if you don't feel like eating regularly, or don't feel like preparing something healthy. Think about whether you're eating less well since this started. Maybe a few extra-good meals will help.

The stress is also a downward spiral. Have less energy to do your job properly, worry about it, deplete more resources, have even less energy to do your job... Not sure what to suggest for that. Maybe do something you really enjoy, to take you mind off the worries for a bit?

 

[caledonia]

Hi - I can certainly relate to dragging yourself to work, and sitting and staring at the monitor, but accomplishing nothing.

I've always gone back to my baseline after crashes, even big ones, but it can take awhile.

I assume you're in the US. There are different disability rules for different countries, so if you're not in the US, this may not apply.

1) Do not quit your job. Let them fire you (if it comes to that).

2) Do you actually have short term disability coverage? You can look at your pay stub to see if you've been paying into STD and LTD. In which case, you're covered.

3) You can get a copy of your plan documents for short term and long term disability from HR. It would be good to see what is and isn't covered, and the time limits for things.

So assuming the worst and you don't recover enough to work, you would first apply for short term disability. Then long term disability. You could get denied for either of those because insurance companies are evil.

At the time that you would apply for long term disability (probably 6 months in), you should also apply for Social Security Disability (SSDI). You would need support from your doc that your illness is expected to last at least a year.

Your boss shouldn't have anything to do with if you get approved for STD. This is insurance that you have paid for in case you become too sick to work.

If your company is too small to have disability insurance, it would be different. You would likely have to take unpaid leave. In that case, it may very well be up to your boss. I don't know if you could get something via the Family Medical Leave Act or not.

There are also five states, like California, who have state disability.

You can still apply for SSDI which is a federal program.

 

[hmnr asg]

hi everyone and thanks for the suggestion.
I just had the most awkward conversation with my boss and he agreed to let me work one day from home and only 6.5 hours on other days, but just for a month.
Also i have to write an email to the rest of the team and explain why i will be working on irregular hours. Fun!

If things dont get better in a month i have no idea what will happen.
Also im an immigrant in the US (*legal*! please dont call ICE on my lol) and I work in a big tech company in silicon valley. So the day i lose my job I have only two days to leave and go back to Canada (which is where i'm from). So not sure if I have any disability rights though.

My boss wanted to be helpful and so he told me in the end: "you think I wanna get up in the morning? NO! but i force myself! "
Great advice !

Thank you all here for giving me the courage and the guidance to ask for what I needed to ask for. I got a month, lets see what happens.

H

 

[lafarfelue]

@hmnr asg I'm glad you spoke with your manager, but sorry to hear they're being dick-ish about it.

I hope you can have further discussions with your manager/employer down the track that will be beneficial to you.

While the idea of going to Canada probably feels bad/scary/too big, perhaps it might be worth figuring out how that might look for you if this level of health continues for you. ? :/ Do you have any people in your life who are supportive of you/ that you need to consider when it comes to Life Things?

 

[CFS_for_19_years]

I have had CFS since 2010 and initially it was very bad but over time i went to around 50% of my functioning level (minus sports).
Around May 20th I crashed pretty hard. For a month before that i had been feeling super tired but i didnt back off my regular activities and on the 20th i went to a social gathering that took way too much out of me.
Since then i have been hovering around 10% functioning capacity. It has been more than a month now.
I guess im wondering, if this my new baseline? before this point when i would crash it would take maximum of 2 weeks but there was always a return to my usual baseline which hadnt changed in a while.
But this time feels different. The crash is much worse and there is no sign of improvement.

I think it would be a good idea to see your doctor to be screened for any other conditions that can cause fatigue such as anemia or hypothyroidism.

I became hypothyroid about two years ago and it took away a lot of my energy - even worse than ME/CFS.

 

[hmnr asg]

hi everyone ,
Thank you again for the support and the replies.
@CFS_for_19_years I will see my doctor tomorrow actually, but I have done every test in the books.

@lafarfelue going back to canada is not so scary. I mean i would have to give up living in california where the weather is 10000 times nicer than the north pole AKA Canada lol. But the worst part is that I am admitting defeat to CFS for the first time, this is the first step i am taking backwards. I have been on my heel since the CFS started and i have made little progress in life, but i havnt had to take such an obvious backward step. This would be the first time. Also my partner is here in california and if i am ever going to have a job i have to come back to the bay area.
But i am getting worse and worse and now i have a new symptoms where talking makes me feel like im being oxygen deprived. I get dizzy and have to sit down. I had an argument with my partner that made me so dizzy and since then i have gotten a lot worse. I wonder if i need to resign from my relationship as well as my job.
Anyways, seems im heading straight for am abyss. Oh well, I had a good run. In fact last year I had gotten so much better that I traveled to japan twice and went all around and i went to italy and hawaii. I really thought this whole CFS nightmare is behind me.
Guess it was just lurking in the shadows this whole time waiting for me to just push myself a little too much.


H

 

[Wishful]

@lafarfelue going back to canada is not so scary. I mean i would have to give up living in california where the weather is 10000 times nicer than the north pole AKA Canada lol.

Hey, I live in Alberta (54th parallel) and I think the weather here is great! It avoids the heat other places get. I hate hot weather. It's 10C outside right now. I had frost a few mornings ago. I'd hate to move somewhere that's hot.

I hope you recover from your crash. maybe a period of complete rest will help.

I don't feel oxygen deprived when I talk to people for a while, but I think my vocal chords are out-of-shape from lack of practice, because after a while, they seem to seize up and I have to stop.

 

[hmnr asg]

Hey, I live in Alberta (54th parallel) and I think the weather here is great! It avoids the heat other places get. I hate hot weather. It's 10C outside right now. I had frost a few mornings ago. I'd hate to move somewhere that's hot.

I hope you recover from your crash. maybe a period of complete rest will help.

I don't feel oxygen deprived when I talk to people for a while, but I think my vocal chords are out-of-shape from lack of practice, because after a while, they seem to seize up and I have to stop.

Oh hello there fellow Canadian!
What is good about California is that the weather is constant. It barely changes. I remember in canada the extreme weather changes from season to season would take a toll on me.
Another good thing about california is that if you are employed you can get the type of insurance where you can go visit any doctor any time, including specialists. In canada getting seen by a specialist is harder than getting an audience with the pope.
But since my visa is only valid as long as im employed, im already looking for housing back in canada. I am checking where can i live so that i can stretch out my savings as much as possible. Alberta was one of my choices but i found out its actually not cheap! So now im looking as Nova Scotia area (east coast seems to be much cheaper).

Getting a period of rest in my job is not possible. I can totally see that im going to have to push myself until im in a wheel chair and then i will have to somehow haul my butt out of here and resign my job. Its a depressing thought to say goodbye to my career but im sure many others have gone through the same thing because of CFS.
What a curse this is.
And unfortunately these days i keep thinking about suicide. My career is everything to me and i really dont even know what reason i would have to live for if i lose it. I am no use to society or myself if im just withering away unemployed in some cheap basement rental somewhere. I mean i know i wont commit suicide because as long as there is a possibility that my life can be useful for someone else i dont think it makes sense to commit suicide. Maybe there will be a cure and i can go back and enjoy my life.
But i cant help the thoughts keep popping in my head

H

 

[lafarfelue]

And unfortunately these days i keep thinking about suicide. My career is everything to me and i really dont even know what reason i would have to live for if i lose it. I am no use to society or myself if im just withering away unemployed in some cheap basement rental somewhere. I mean i know i wont commit suicide because as long as there is a possibility that my life can be useful for someone else i dont think it makes sense to commit suicide. Maybe there will be a cure and i can go back and enjoy my life.
But i cant help the thoughts keep popping in my head

i'm really sorry to hear this. If this keeps going, please keep talking and let us know with a separate post so that we can hear you and hopefully provide some solace and help

It really is difficult to adjust to the idea that we don't fit into this crazily capitalist society where everyone must serve a purpose or be 'productive' in some capacity. Perhaps it'd be worth scaling your idea of what 'useful' is back a bit and focus on how your health and wellbeing (mental as well as physical) is important to those immediately around you. Also, just because a person is on welfare/a pension/dependent on someone else doesn't mean that they're not a useful member of society... it just means the goal posts and objectives have changed.

I guess... what are you seeking at the moment? Do you want us to listen to your worries and validate how you are feeling? Would you like suggestions or thoughts about how you could maybe move forwards from here? (I ask because I'm a 'solver' and have a bad habit of jumping into questions and brainstorming mode when sometimes all people want is to talk things out!) Please let us know

 

[Mel9]

Oh hello there fellow Canadian!
What is good about California is that the weather is constant. It barely changes. I remember in canada the extreme weather changes from season to season would take a toll on me.
Another good thing about california is that if you are employed you can get the type of insurance where you can go visit any doctor any time, including specialists. In canada getting seen by a specialist is harder than getting an audience with the pope.
But since my visa is only valid as long as im employed, im already looking for housing back in canada. I am checking where can i live so that i can stretch out my savings as much as possible. Alberta was one of my choices but i found out its actually not cheap! So now im looking as Nova Scotia area (east coast seems to be much cheaper).

Getting a period of rest in my job is not possible. I can totally see that im going to have to push myself until im in a wheel chair and then i will have to somehow haul my butt out of here and resign my job. Its a depressing thought to say goodbye to my career but im sure many others have gone through the same thing because of CFS.
What a curse this is.
And unfortunately these days i keep thinking about suicide. My career is everything to me and i really dont even know what reason i would have to live for if i lose it. I am no use to society or myself if im just withering away unemployed in some cheap basement rental somewhere. I mean i know i wont commit suicide because as long as there is a possibility that my life can be useful for someone else i dont think it makes sense to commit suicide. Maybe there will be a cure and i can go back and enjoy my life.
But i cant help the thoughts keep popping in my head

H

We know how you feel but life without a constant well paid job can still be rewarding.

With your skills and heaps more time you might get that energy to produce the apps to help others you talked of earlier.

Please stay in touch because there are so many PR people here sympathise and want to help.

 

[hmnr asg]

@lafarfelue @Mel9 thank you for your reply! Hard to believe I get more empathy from complete strangers from a different continent on this site than all of my family put together!
I really dont know what im supposed to do. Tomorrow I will speak with my doctor about short term disability. I have been bargaining with myself these past two months but its very clear that I am not able to carry out my duties. I will stay home a month if they approve my short term leave. But here in America these things are not easy! but we will see.
As for being useful. I think you are right! I have lost a lot of cognitive sharpness in the last two months but i can still teach at a community college on a part time basis. I need to stop being stubborn but im exactly in that transition period where you have to give up your old life!

The issue with me was that i always felt very inadequate and my way of coping with it was by excelling in my studies and then working hard and making money. It was like a shield that protected me from my constant feelings of inadequacy (and this started long before CFS all the way back to my childhood). Now with CFS and losing my fuzzy warm blanket of socially accepted identity and fancy job, im back in square one

I will keep you guys posted. I am so grateful for your kind words and support. I know for a fact that I can be of use to the world even without this job.

H

 

[Wishful]

@hmnr asg , your suicidal thoughts may be directly caused by neurochemical imbalances from ME/CFS. Mine were. Once I learned that they were greatly increased by tryptophan and niacin, and modified my diet to avoid those as much as possible, the strong suicidal moods went away. It may not work for you, but you might consider experimenting with avoiding tryptophan and niacin...or testing a significant dose of either to see if they induce suicidal moods (obviously take appropriate precautions). B12 also induced strong suicidal moods at one time, but that sensitivity seems to have passed.

I like the changeable weather here in Alberta. I lived in Vancouver for long enough to yearn for actual seasons. The first frost of autumn, the first snow of winter: these things usually lift my spirits. Of course, so does the first clear patch of ground in spring, and the melting of ice on the creek, and the first blossoms and leaves. Yup, I like it here.

I haven't tried the east coast, but coastal weather should be less changeable, meaning cold and foggy except for a brief period of hot and muggy. Definitely cheaper than Alberta. My sister's friend recently moved to the east coast, found prices much lower, and really enjoys it there.