Just not working

[HABS93]

I've been on here few months now and good bless all of us suffering from CFS /CFS like disease. I know it's difficult . Difficult doesn't even comprehend how we feel. I've tried all different types of supplements diets and nothing changes. I'm currently a line cook at a fancy restaurant and work like 44 hours a week. I get through it because I feel the energy behind the walls of my symptom's is fine but I've done every test with MD to figure out where the chronic fatigue and nuerological symptoms come from and they tell me im fine it's all in your head. I was on Lexapro for three months which stopped the panic attacks but made my energy levels low. I've tried piraceam and nothing. If I drink coffee it just makes me feel shitty. I'm so lost I have no hope anymore. It's been a year and maybe my drug use caused this(Wasn't alot though) . How could my blood test become normal but have PEM from work

 

[Judee]

Do you have to work so many hours? Can you work something out with your employer? Young people at the beginning of this disease have the best chance of spontaneous remission if they can rest enough. Just a thought.

Don't mean to make you feel more stuck if you can't change anything right now. I just feel your frustration.

 

[HABS93]

Honestly my parents won't allow me because I'm 25 and in my career. It's not that they are mean just in their perspective I would look like a lazy ass. I can't figure out if its from drug use. But I honestly didn't do it every night. I lived on my own from 17-24 and once month I'd do MDMA and I smoked weed everyday. When I quit smoking weed all these symptom's happened. I've done countless hours of MDMA damage and can't find anything on it causing chronic fatigue. It can cause anxiety problems but when I took medication for my anxiety attacks it solved that aspect but made my fatigue worse. I also worked around toxic metals so maybe that is causing these problems ? I just can't find anyone to get answer from. I've read alot about meth and heroin addicts who finally over came there addiction and in a year they started to feel good. Sorry for the long paragraph. I just want to figure out is it real chronic fatigue or is this some sort of brain damage ?

 

[valentinelynx]

Please stop blaming yourself for your illness. Plenty of people have partied longer and harder than you and don't come down with ME/CFS or related symptoms. Once a month MDMA—that's nothing, believe me. As for weed, it's interesting that your symptoms started after you stopped smoking. Maybe the cannabis was holding off your symptoms? I'm not suggesting you pick up the habit again, but you might look into medical marijuana if it's available where you are, and if not, maybe try CBD.

As for seeing MDs, that is likely to be frustrating unless you find a specialist. Unfortunately there are few and seeing them tends to require travel and payment out of pocket. If you have the opportunity, however, the right doctor could help you find out if you have ME/CFS or some other disorder. Do you meet the ICC or CCC ME/CFS criteria?

 

[crypt0cu1t]

I believe heavy adderall use played a role in mine.

 

[HABS93]

I know blaming yourself isn't going to help or fix anything. The fatigue started gradually a year before I quit . My job was always physically demanding so I stretched and excercise quite Abit I used weed to fall asleep at night. I tried weed again ten different times and it caused all my symptom's to be 10x worse. Makes eyes would glitch out and I couldn't focus on watching TV or stop moving because my eyes couldn't stay focused and it felt like I was on a stimulant. Had trouble sleeping. I do meet every single criteria for The Canadian CFS . Any stimulant makes my symptom's way worse and I pay for it the next day.

 

[HABS93]

I believe heavy adderall use played a role in mine.

Do your eyes have trouble focusing with your chronic fatigue ?

 

[i-lava-u]

Any stimulant makes my symptom's way worse and I pay for it the next day.

Have you been assessed for Dysautonomia (such as POTS)? Stimulants can make symptoms more enhanced.

 

[HABS93]

I believe my heart test can back as normal. Ectopy related palpitations which are nothing to worry about . But idk if that covers POTS ? What's the test required for this ?

 

[i-lava-u]

If you do a tilt table test, at the cardiologist, they can test for multiple types of Dysautonomia (including POTS), some types, do not show up until later in the test, so this can be useful to rule in/out different kinds.

POTS is an increase of at least 30 beats per minute within 10 minutes of standing (from lying down)

You may be interested in the "NASA 10 minute lean test"
Here is a link with a printout of detailed instructions a bit down the page
https://batemanhornecenter.org/nasa-10-minute-lean-test-2/

This is the kind of monitor that you need for this test (you need to track heart rate and blood pressure)

It is also helpful (but not necessary) to have a pulse oximeter to see if your oxygen levels drop

Don't know if Dysautonomia is a contributing factor in your case, but your descriptions sound similar to what I experience.

 

[YippeeKi YOW !!]

@HABS93

I'm so lost I have no hope anymore. It's been a year and maybe my drug use caused this(Wasn't alot though) . How could my blood test become normal but have PEM from work

DON'T GIVE UP!!! Some of us have been working on finding an answer for years, making little incremental improvements along the way, but not finding definitive answers.

You just hang in, HABS. Keep flogging along. The more you can research and read, the better the chances of your bumping into some info that really does help.

I agree with @Judee .... being a line cook is extremely stressful, draining, demanding, and difficult. Not exactly what you need now. If you could just cut one shift, or even half of one shift, it might help.

And pardon me, but screw what your parents think. I know that it's virtually impossible to get anyone who isn't deeply familiar with this illness to understand it, and even harder to overcome rock-hard pre-judgments. Would they rather go to your memorial service?

I just want to figure out is it real chronic fatigue or is this some sort of brain damage ?

If you have brain damage from your relatively light use of molly, it's temporary. It takes time for a brain battered by drugs as seductive as MDNA to rebalance, but it will happen. You need to give it whatever support you can, including selective supplements (start a thread here, or do a google on brain repair after MDNA, or both .... I don;t think you're the only person here with drug damage, either legal or otherwise), enough rest (!!!), less focus on negatives and self-blame ..... it'll happen.

I have a friend who did WAAAAAY more MDNA than you've done, and it took a while (I think about 18 months) but slowly and steadily, she got better. And she was hit pretty bad when she quit.

Please stop blaming yourself for your illness. Plenty of people have partied longer and harder than you and don't come down with ME/CFS or related symptoms. Once a month MDMA—that's nothing, believe me.

I absolutely agree.

I know blaming yourself isn't going to help or fix anything.

Worse, it'll make everything much harder and much worse, and much more of an uphill battle. You might need some light therapy to get you over this esteem hump, altho I've never met a therapist I'd bother blowing to hell, but I know that there's good ones out there.

Well, that's not entirely true. I had a therapist about 20 years ago who was really dedicated and decent.

Just possibly avoid Cognitive Behaviour Therapy. I've heard and read nothing good. I'm not sure it even requires a license. Not that a license changes anything, but it shakes out a lot of the opportunists looking for a quick buck.

I know this is hard HABS, and I know that not much anyone can say will make it better or easier. It's a little like clapping for Tinkerbell; you just have to believe.

 

[crypt0cu1t]

Do your eyes have trouble focusing with your chronic fatigue ?

Yeah, well that's a huge issue for me. Mine turned out to be autoimmune encephalitis and we are working on figuring other stuff out

I believe my heart test can back as normal. Ectopy related palpitations which are nothing to worry about . But idk if that covers POTS ? What's the test required for this ?

You can have dysautonomia without POTS. POTS is just one form of dysautonomia

 

[HABS93]

If you do a tilt table test, at the cardiologist, they can test for multiple types of Dysautonomia (including POTS), some types, do not show up until later in the test, so this can be useful to rule in/out different kinds.

POTS is an increase of at least 30 beats per minute within 10 minutes of standing (from lying down)

You may be interested in the "NASA 10 minute lean test"
Here is a link with a printout of detailed instructions a bit down the page
https://batemanhornecenter.org/nasa-10-minute-lean-test-2/

This is the kind of monitor that you need for this test (you need to track heart rate and blood pressure)View attachment 32828

It is also helpful (but not necessary) to have a pulse oximeter to see if your oxygen levels drop
View attachment 32829
Don't know if Dysautonomia is a contributing factor in your case, but your descriptions sound similar to what I experience.

Ohh okay so I should ask my MD to get reffered to a cardiologist to do these test or do the MD's do it ?

 

[HABS93]

@HABS93

DON'T GIVE UP!!! Some of us have been working on finding an answer for years, making little incremental improvements along the way, but not finding definitive answers.

You just hang in, HABS. Keep flogging along. The more you can research and read, the better the chances of your bumping into some info that really does help.

I agree with @Judee .... being a line cook is extremely stressful, draining, demanding, and difficult. Not exactly what you need now. If you could just cut one shift, or even half of one shift, it might help.

And pardon me, but screw what your parents think. I know that it's virtually impossible to get anyone who isn't deeply familiar with this illness to understand it, and even harder to overcome rock-hard pre-judgments. Would they rather go to your memorial service?

If you have brain damage from your relatively light use of molly, it's temporary. It takes time for a brain battered by drugs as seductive as MDNA to rebalance, but it will happen. You need to give it whatever support you can, including selective supplements (start a thread here, or do a google on brain repair after MDNA, or both .... I don;t think you're the only person here with drug damage, either legal or otherwise), enough rest (!!!), less focus on negatives and self-blame ..... it'll happen.

I have a friend who did WAAAAAY more MDNA than you've done, and it took a while (I think about 18 months) but slowly and steadily, she got better. And she was hit pretty bad when she quit.

I absolutely agree.

Worse, it'll make everything much harder and much worse, and much more of an uphill battle. You might need some light therapy to get you over this esteem hump, altho I've never met a therapist I'd bother blowing to hell, but I know that there's good ones out there.

Well, that's not entirely true. I had a therapist about 20 years ago who was really dedicated and decent.

Just possibly avoid Cognitive Behaviour Therapy. I've heard and read nothing good. I'm not sure it even requires a license. Not that a license changes anything, but it shakes out a lot of the opportunists looking for a quick buck.

I know this is hard HABS, and I know that not much anyone can say will make it better or easier. It's a little like clapping for Tinkerbell; you just have to believe.

I do agree. Tbh I'm living with my dad and step mom in Toronto which is expensive and working as a line cook. My parents act like if the doctor can't find anything then you have to grow up and I just say yes because what else am I going to do live on the street ? I can't live on my own right now because of my OSAP for school . Im still in the processing phase of figuring out exactly what is going on. I wish they did understand but they aren't very nice people . I love them but Italian parents are very hard when it comes to this nature

 

[Rufous McKinney]

I wish they did understand but they aren't very nice people . I love them but Italian parents are very hard when it comes to this nature

Very tough situation your in, and particularly so when one is not does not have support and understanding at home, and those we love. Life is tough, generally, and particularly so for young people at the moment.

And I think MOST parents these days, do worry about this...So , when we see the young person not taking on the world: well, somebody might send Jordan Peterson! (12 Rules for Life). But sounds like: you worked, studied, and accomplished alot so far. So you need: understanding, moral support.

How might you insinuate a different story to your parents? There has been SO MUCH News, for instance, on recent developments at Stanford, for instance. Every article says: poorly understood, misdiagnosed, missed by doctors...

What if you left an article about it, in large font, lying about on the coffee table? Might they notice? (several, even).

What if you just make calm statements about it to them. As if they are your friends, and your just being real, and yourself, and including them in your thoughts and machinations. " I am continuing to research that I don't feel well, that I may have ME." Just say it. Include them more in: your strategies. I am trying this Today, it is reported to help with X symptom. They see you: trying....

Have they seen the film Unrest? This really woke my husband up. I think it translated things in the body in a way that regular people can better understand. Maybe there is way for them to see that. And it could help you feel better, if your NOT as extreme as that..that is encouraging..so you continue to work on feeling better.

And we are now all feeling better knowing Jen B is feeling better. So they could be included in this shared experience, perhaps somehow.

Its a challenge. Its been placed there in your path. How to engage these people, who love you. But just don't quite understand.

 

[i-lava-u]

Ohh okay so I should ask my MD to get reffered to a cardiologist to do these test or do the MD's do it ?

For the tilt table test, a cardiologist would perform, usually at a hospital. There are lots of youtube videos if you want to see what they entail.

The other test I posted with a link, the "NASA lean test" you can do at home or ask your regular MD to do if they are willing.

 

[HABS93]

If you do a tilt table test, at the cardiologist, they can test for multiple types of Dysautonomia (including POTS), some types, do not show up until later in the test, so this can be useful to rule in/out different kinds.

POTS is an increase of at least 30 beats per minute within 10 minutes of standing (from lying down)

You may be interested in the "NASA 10 minute lean test"
Here is a link with a printout of detailed instructions a bit down the page
https://batemanhornecenter.org/nasa-10-minute-lean-test-2/

This is the kind of monitor that you need for this test (you need to track heart rate and blood pressure)View attachment 32828

It is also helpful (but not necessary) to have a pulse oximeter to see if your oxygen levels drop
View attachment 32829
Don't know if Dysautonomia is a contributing factor in your case, but your descriptions sound similar to what I experience.
So I'm still waiting for the test of the text but my fatigue doctor measured my blood pressure and said it was low and my oxygen levels did come back normal at 93% but not the best.