Starting With Fibromyalgia/cfs/post Polio Syn

[chris]

Birdie - Yes I did try a few times. Many of the times I woke up without the tape on my mouth with no recollection of removing it. When I haven't had a shave in a while the tape never sticks properly. I'll have a shave and give it another go tonight.

Oh, that makes sense. A problem I hadn't thought of. And what about mustaches? I can see you wouldn't want to do this too often. Maybe your body will get the hang of it soon.

And if you don't sleep on your back that might do it like Charlie says.

I don't understand your question about mustaches.

I tried a night with the tape and wrapping a soft belt around me, creating a lump at my back so I wouldn't sleep on my back. I slept fine but woke up extremely unrested so haven't done that since.

 

[Birdie]

Birdie - Yes I did try a few times. Many of the times I woke up without the tape on my mouth with no recollection of removing it. When I haven't had a shave in a while the tape never sticks properly. I'll have a shave and give it another go tonight.

Oh, that makes sense. A problem I hadn't thought of. And what about mustaches? I can see you wouldn't want to do this too often. Maybe your body will get the hang of it soon.

And if you don't sleep on your back that might do it like Charlie says.

I don't understand your question about mustaches.

I tried a night with the tape and wrapping a soft belt around me, creating a lump at my back so I wouldn't sleep on my back. I slept fine but woke up extremely unrested so haven't done that since.

Not a question really about the mustaches, but I did put it that way. I was thinking tape over a mustache could be awful!
I read about the lump on the back on the forums. Good that you tried it.

I put the mirror up on my desk for a week also. That was another idea on the forums. Watching yourself while you work. I think it helped.

 

[chris]

The medical tape I have is not particularly sticky, it doesn't hurt to remove the tape but irritating as it sometimes falls off. I guess I need to be less lazy with my facial grooming, lol.

Could you explain the mirror thing please, I don't quite understand it?

 

[charlie]

Yeh I was wondering about the mirror too.

 

[Birdie]

The Mirror:

In one of the breathing forums it said to help stop breathing through the mouth, put a mirror on your desk.
When you look up from the computer, you see your face.

I recommend it!

 

[charlie]

Interesting. Did they also say why its better to move a lot in your sleep?

 

[Birdie]

Interesting. Did they also say why its better to move a lot in your sleep?

No, sorry, Charlie. It just made sense to me. Sleeping in one position without turning seems like it would cause muscle stiffness though.... But they were relating it to breathing and carbon dioxide.

I finally listened to Rays talk to the BUteyko group. It is excellent. I couldn't get the video to go. I use robs site for the interviews. Not sure if it's my old MacBook Pro or what. Some interviews won't work either. But there are enough that do work to keep me busy.

I'm back to 3mg LDN at bedtime. Awakened more alert today. Yesterday was a down day. Did too much the day before so total crash yesterday.

That's how it goes with ME/fibro... Any little improvement seems a miracle but sometimes for what seems to be no reason, you get a flareup.

best wishes and good night.
Birdie

 

[charlie]

Thanks Birdie. That moving around a lot at night stuff has me curious.

How is your temps and pulse? IIRC you are on thyroid, but maybe if your temps and pulse are not what they should be then maybe try raising thyroid?

 

[Birdie]

Thanks Birdie. That moving around a lot at night stuff has me curious.

How is your temps and pulse? IIRC you are on thyroid, but maybe if your temps and pulse are not what they should be then maybe try raising thyroid?

That's sweet of you, Charlie. Moving around during sleep is a good thing. Thrashing, of course, would not be!!

 

[charlie]

Thanks for noticing Birdie. Just want to see people feeling well.

It seems like the nights that I am out like a light and sleeping really deep, I don't turn much during my sleep. But, I am totally out like a light, so just might not be noticing the turning.

 

[Birdie]

I am using 3.0mg of LDN now. I'll go the recommended low and slow way, keeping it at this dose for a couple of week. Then, I'll move it up by .2mg to test. It's normal for a rise to give a flarup of a few days, but, 3.0 may be my maximum dose.

I rinsed some Daisy cottage cheese this morning so the next step will be making it into Cottage Cheese Cream to use on jello or ice cream. My husband is still not using a lot of milk, so this is one way to help with that. Plus, it tastes good.

I am still using Armour. As I mentioned before, I tried the Cynoplus but it was too strong even when I tried smaller amounts, taking it with food, sublingual, taking it bit by bit.... So, back to my old Armour. For a while it was being manufactured with a tough coating, but Armour responded to customer demand and began using the former lighter coating last June. So, when I switched back, it was dissolvable. I usually chew it a bit. I find it's a more even effect when I take it with food and in smaller doses. For 20 years I just took it on arising with no problem, but, now, that doesn't work.

I wonder if anyone else here has ME or CFS. Two names, one used in the rest of the world, the latter used in the US. Or fibromyalgia? I think Ray pretty much says these are all thyroid related. That is what I found in my early study when I was dxd with this stuff 20 years ago. Still, it has not been a complete answer or cure. Perhaps, as a lot of people say, there is no cure. But, I've gone from being bedridden to leading a possible life out of bed. Big progress.

I think the hugest progress for me has been that of healing injuries. Years ago, any musculoskeletal injury would take 6 months to heal. Now, it can vary but is usually less than a week for the same degree of injury. Eating according to Peat suggestions, had made a significant advance in this faster healing.

Hoot, hoot for that! This holistic approach which targets the whole body rather than hitting only limited symptoms is the way to go.

 

[Birdie]

I've got another little bit of improvement and I'd better tell you before I forget it.

I am now able to take 2/3 of a benadryl at bedtime without getting dry mouth. About a month ago, even a half a tab would cause terrible dry mouth by the time I awakened in the morning.

I attribute this to the Buteyko breathing. I am no expert and only try to breathe from the diaphragm and I've been taping my mouth at night. As soon as I began the tape, the improvement came.

I've known I was a mouth breather for 30 plus years but didn't know I could fix it.

Very glad to be able to tolerate some benadryl now.

 

[HDD]

Birdie, are you taking the Benadryl for sleep, allergies, or other reasons? I have been using a 25 mg tab at bedtime almost every night for the last month and have had the best sleep. I sleep heavier and later. I have had a few nights of insomnia after taking it but overall it has been good.

 

[Birdie]

Birdie, are you taking the Benadryl for sleep, allergies, or other reasons? I have been using a 25 mg tab at bedtime almost every night for the last month and have had the best sleep. I sleep heavier and later. I have had a few nights of insomnia after taking it but overall it has been good.

Hi diane,
Ray says benadryl helps lower histamine and serotonin.

That's mainly why I was wanting to be able to take it.

I wasn't able to take it in the past because of the dry mouth caused by mouth breathing when the benadryl would knock me out.

Thanks so much for asking. It is hard for me to write clearly and this helped get it straighter...

 

[chris]

Birdie - Mouth taped last night. Woke up after about 4-5 hours and found the mouth tape neatly folded and thrown on my floor, don't remember taking it off. Went to the toilet and put some more tape on, woke again normally around 3 hours later and tape was on the floor again... Not sure this mouth taping is for me.

 

[Birdie]

Birdie - Mouth taped last night. Woke up after about 4-5 hours and found the mouth tape neatly folded and thrown on my floor, don't remember taking it off. Went to the toilet and put some more tape on, woke again normally around 3 hours later and tape was on the floor again... Not sure this mouth taping is for me.

Chris-
That's so funny. Maybe you're right!!

Did you use the tape up and down, vertically over the mouth? Oh, I can't stop laughing...
I wonder how long it stayed on. Maybe you'll have to tape in the evening or some other time to get your body used to it??

Do you have any ideas?

There is someone coming in and taking it off who wants to hear you talking in your sleep.

 

[chris]

Birdie - First time I used two strips creating an X shape across my mouth. I was really surprised how neatly I folded this up in my sleep haha. Second time I used a single small strip down the centre of my mouth.

Woke up very groggy and brain fogged today, I think I will sleep without tape tonight and try again tomorrow night.

I would try doing it in the evening but I am student living in a house with lots of friends and the only alone time I get is when I go to bed. Wouldn't really be able to sit around my house with tape on.

 

[Birdie]

I was on 3.0 of LDN for a week and upped it to 3.2mg last night. I did awaken more alert today. Actually, thought of things I wanted to accomplish. Not in a stressed way either. I take this as a good sign that LDN is helping. So, I will continue.

Today, I found out I'm taking too much Vit A. I was taking Ray's summer dose which is not at all appropriate in this dark winter. So, I'll reduce it. I hope that will be a key to improving symptoms.

A symptom I'm concerned with is that in the last 6 months my nails have developed ridges. I think this is connected to B12 maybe. I stopped my betaine HCl a few months back and it's needed for intrinsic factor. That's needed for B12... I have used injections in the past but have gotten very lax in the last few months.

In a rush.

 

[Birdie]

Decided I'm not ready to lower my vit A after all. I'd started my high dose in response to an acne outbreak on my back. It worked well.

I had another bad reaction* after eating breakfast today. I'm tired of it and discouraged. Yesterday, we ate out. I felt great. So, I am analyzing it. Very similar breakfasts... Mr Birdie says the answer would be to hire a butler.

*Breathlessness, brain fog, head pressure.

Possibilities: gelatin in egg at home, not at restaurant
Problem with that: I eat jello with no reaction.

Possibilities: Different coffee? Cream + milk in it at restaurant. About the same at home today.
Two eggs at restaurant. One at home. Doesn't sound credible.
3 pieces of bacon at restaurant, 2 at home....

Maybe I just need to eat out!!!

Still time to edit so I just remembered that we had oysters with our eggs this morning. I don't remember their causing trouble in the past. I'm not going to have them with breakie again.

I'll see how I do tomorrow before going into a huge worry about this morning. It seems I react every day to breakie but since I'm still having a reaction, perhaps it will be better to re-evaluate later when this has passed.

 

[Birdie]

Today was a good day.

Last night I heard Ray Peat's latest interview on Weight Gain. I listened again this morning. I played a part of it for Mr Birdie.

When I listened, I found that I was doing a great deal of the good stuff. :)
I am eating as he recommends. I have been doing the free weights, squats and yoga for many years. I've modified my walks so they are shorter now. More peat compatible.

So, the part I want to work on is the warm feet!
I always want to trot around in flip flops. My feet are cold. My whole body gets cold. I persevere with the bare feet.
Today, I kept the feet warm. Tonight I'll even put on the socks after my bath.

I seem to have adjusted to my 3.5mg LDN dose. Probably should leave it there for a week more. This was my first day of better mood. Also, when I awakened (at 3:30 am) my body felt stronger. I got up and worked for an hour or so.

When getting back in bed, I left on the bathroom light. I leave the shutters at the end of the bed open now. Our post light shines in on my feet. I've done this ever since early last year when Cliff was shining red light on his feet. (I think he still has that light on.)

It's wonderful to not have to make the room pitch black the way I always thought was needed for sleep. A freedom. And it feels good. No more sleep mask for me.

So, this is posted for the future. It's good to remember a day where you felt good. We ME/fibro folks look at one good day as very hopeful. It can mean we are on the right track. We have so many not good days. Sometimes they look never-ending. But when some of us get things right (for us) then, we hope there will be more good days than there have been.
I've seen a lot of people say so.