Progressive Insomnia before my crashes

[Valentijn]

Disagree Read the posts I gave

ME/CFS isn't chlamydia pneumonia. It also isn't a vitamin deficiency.

 

[gettinbetter]

Nutritional supplements and diet can help you when you have clear deficiencies (e.g. B12 folate etc), however if you routinely use more energy than you have they won't make a noticeable difference.

I think that is true

You are unlikely to find a self hacked cure using alternative therapies but you may be able to improve your quality of life ( by reducing the impact of crashes, improving cognitive stamina, gut problems etc) and perhaps slow the decline.

I posted two people that got better one with antibiotics and another with a B12 therapy
Yes agree on the second point though

I keep my heart rate below cardio and in the lightest zone (Fitbit call in the fat burn zone) if my heart rate goes above 100 I slow down, if it goes above 120 I stop and rest.

That is useful Thanks Do you swim or do yoga?

When you pace properly you still get things outside your control affecting you such as pollen count, temperature, unforeseen drains on your physical and cognitive energy, but it's miles better than the boom or bust.

Makes sense

Of the cases that spontaneously remit there is no understanding as to why some do and others do not.

Disagree One person on another site use antibiotics for a long standing bacterial infection the other used B12 therapy

I do agree that recovery seems to be rare wish that were different

 

[gettinbetter]

ME/CFS isn't chlamydia pneumonia. It also isn't a vitamin deficiency.

Do you know exactly what CFS is?
How do you know infection and vitamin deficiency is not part of the problem?

 

[gettinbetter]

you seem to want to fight Valetin I can't understand why
You have made your points I just don't fully agree with your positions (but you guys here do offer a lot of valuable information I am thankful for that)
I have also made my points So let's just leave it alone at this point That's what I will do
My understanding is CFS is symptom not a cause
Thanks

 

[Valentijn]

Do you know exactly what CFS is?
How do you know infection and vitamin deficiency is not part of the problem?

I know what ME/CFS isn't, by following all of the research. If it was a simple infection or deficiency, the cure would be widely known by now. Symptoms being caused by something else which is diagnosable would explicitly exclude a diagnosis of ME/CFS.

 

[arewenearlythereyet]

Disagree One person on another site use antibiotics for a long standing bacterial infection the other used B12 therapy

I think part of the problem is the fact that many other diseases can be misdiagnosed as CFS if the wrong criteria are used. The B12 story although interesting probably means the person has either been misdiagnosed in the first place or is overusing the word "recovery". We can only know whether the person genuinely recovered by following up in 10 years or so. The current research does not indicate that low b12 is the cause of CFS/ME although many have low levels and some kind of block in their B12 folate metabolism (hence the symptom relief by supplementing). It is likely that b12 deficiency is much further downstream of the problem and a consequence rather than cause. Therefore to say someone recovers fully by treating with B12 seems unlikely. I don't think people with pernicious anaemia ever recover fully despite being fully treated with supplements etc.

 

[gettinbetter]

I think part of the problem is the fact that many other diseases can be misdiagnosed as CFS

CFS seems to be a bucket in which a variety of conditions are dumped

We can only know whether the person genuinely recovered by following up in 10 years or so.

Yes that would be interesting to know

The current research does not indicate that low b12 is the cause of CFS/ME although many have low levels and some kind of block in their B12 folate metabolism

Yes it seems to be that way

I asked if you practiced yoga or swam if so do you use a heart monitor while doing that?

 

[Valentijn]

CFS seems to be a bucket in which a variety of conditions are dumped

Only when it's abused by lazy doctors. The core symptom should be post-exertional malaise, where relatively normal or small amounts of activity trigger a delayed reaction. This doesn't happen with infections or vitamin deficiencies, and someone with those problems, and no PEM, has been misdiagnosed if they claim to be an ME/CFS patient.

you seem to want to fight Valetin I can't understand why

You seem to think that exercise can help you, despite that you describe having something that sounds a lot like PEM. The one thing that is certain in ME/CFS is that exercise harms us. That is the very definition of ME/CFS. Attempting to exercise your way out of exercise intolerance is a form of self-harm, even if that's not what is intended. And promoting exercise as a possible cure or treatment might encourage other patients to engage in the same self-harm. I know it's hard to break out of the mind-set that exercise is a cure-all, or at least beneficial and harmless, but biomedical exercise intolerance is the hard and fast exception to situations where exercise is good.

My understanding is CFS is symptom not a cause

No, ME/CFS is a disease which features many symptoms. Chronic fatigue is a single symptom. The cause is unknown.

 

[arewenearlythereyet]

CFS seems to be a bucket in which a variety of conditions are dumped


Yes that would be interesting to know


Yes it seems to be that way

I asked if you practiced yoga or swam if so do you use a heart monitor while doing that?

No I don't practice yoga or swimming. Yoga is just painful on my joints and I find it difficult getting up off of the floor once I'm down. Swimming I avoid, mainly because I don't like it or the risk of infection ( I am plagued by skin infections and these take 8-12 weeks to clear so not worth it for me). The Fitbit isn't water resistant but other makes are I belive.

My best exercise is gentle walking or just doing the things I need to ( mowing lawn etc). My energy envelope allows me to do between 1-2 hrs of low heart rate activity a day. Yours may be different. I generally have a low resting heart rate 48-55. I also suffer from OI so sometimes my heart rate can wander a bit when I'm not doing anything or start racing when I've got an infection etc. On these days my activity needs to be lower to keep within my envelope.

When I was working, I saved up all my energy for my tasks at work and managed a 20 min walk at lunchtime. My weekends were a total blowout though to do this.

I guess you need to find your level.

 

[gettinbetter]

Seems like a heart monitor would be a good tool when doing yoga or swimming or anything

When you pace properly you still get things outside your control affecting you such as pollen count, temperature, unforeseen drains on your physical and cognitive energy, but it's miles better than the boom or bust.

Yes which is partly why I originally posted
Life happens no matter how careful you are you will get stressed sooner or later and in my case
insomnia ensues when that happens I need to control it so I can stay on a consistent sleep schedule
I am still open to suggestions on that


Finding ones level on exercise and work is hard to do

Can you tell me how you think your illness began and what you think caused it?
What have you tried and what has helped the most?

 

[clarab]

Yes, this has happened to me too a lot in the past so now I have learned to avoid it as much as possible. You cannot recover when you keep crashing.

Easy to say but work and life prevent this for me and I'm sure many people

 

[gettinbetter]

Easy to say but work and life prevent this for me and I'm sure many people

I agree