Fibromyalgia/CFS

[Celeste88]

Malia, my heart goes out to you because I still remember those days when my DS was a wee little one and I was a walking zombie from lack of sleep. Just keep in mind this too shall pass (well maybe not totally ) but when your DD is done breastfeeding you can perhaps try something that will help you sleep better. I’ll keep you in my prayers and hope you get some rest this week end.

 

[Feanaro_s_Wife]

but when your DD is done breastfeeding you can perhaps try something that will help you sleep better.

Yeah, sleepovers at grammy and grampy’s house

malia

 

[Rockymom]

I have had CFS for 7 years. I got better by taking Armour thryroid and Cortef. Then, last summer I had severe stress in my life and I fell apart again. I have started something called Mickel Therapy and it is truly helping. I am amazed. I do phone sessions with my practitioner once a week. So far it is working for me. I just wanted to pass this along to all of you here who suffer so very much, so that someone might be helped in some way.

Keep looking for answers. They are out there!

 

[Feanaro_s_Wife]

**I am feeling very lonely at the moment. Hubby is going to be away for the next couple of days, leaving me to care for baby all alone for the first time. I am so tired and sore. I just want to sleep. Just typing this hurts. This always happens when the weather turns cold. I wish i could hibernate.

Would be so nice to have caring friends around to help. But I feel like this disease has cheated me in so many ways. Sorry to complain, but only a fellow sufferer could hope to understand how isolating this illness can be.

Malia**

 

[Pug]

I am so tired and sore. I just want to sleep. Just typing this hurts.

Hubbie gone is tough! I’m really down now, and dreading work tomorrow. I did too much today because I’m behind in every possible way in my life, so I overdid it to catch up and I’m still not caught up. Actually, I don’t try to catch up per se, I just try to get the bare minimum done. Sigh. I will pray for the two of us. I’m not up to much else.

 

[Feanaro_s_Wife]

Hubbie gone is tough! I’m really down now, and dreading work tomorrow. I did too much today because I’m behind in every possible way in my life, so I overdid it to catch up and I’m still not caught up. Actually, I don’t try to catch up per se, I just try to get the bare minimum done. Sigh. I will pray for the two of us. I’m not up to much else.

Thank you, that means a lot to me. I hope that work goes alright for you tomorrow and that you get some rest too!

 

[LittleDeb]

You’re both in my prayers. I just got an email asking how I was doing and I answered “tired and sore.” Then I came here. I forgot how that is a universal reply for us.

Malia I’m so sorry you are alone. I have no advice to offer. I’m not in your shoes, but I wish I could trade you to take some burden away. You have my deepest respect.

Pug, now as to overdoing it…that one I can advise…DON’T do it. Sure, right! I think the “falling behind all the time” is the thing I hate most about our illness. It speaks highly of you that you are still trying to catch up. I know one woman who just threw in the towel. God bless you! I hope it gets better soon.

 

[Sailor_Kenshin]

Hugs all round.

And I have to ask: does this count as corporeal mortification? Since we don’t actively choose to have this pain and fatigue?

 

[TraderTif]

Pug, now as to overdoing it…that one I can advise…DON’T do it. Sure, right! I think the “falling behind all the time” is the thing I hate most about our illness. It speaks highly of you that you are still trying to catch up. I know one woman who just threw in the towel. God bless you! I hope it gets better soon.

nodding in agreement Definitely! I tried overdoing it in high school, and I got so sick I ended up missing the last three years. So I started college only part-time, but I got so enthusiastic about my classes that I tried going full-time…and crashed again. Now I’ve spent the last 4 years waiting to get better again so I can finish!! (And I’m only 7 classes short!! Aaugh!!!)

This time, I’m NOT going to overdo things!!!

But tell me this people, do you ever have days where you feel semi-ok when you wake up, and so you decide to go somewhere. But by the time you actually arrive at your destination…you feel so lousy, that you end up going back home and collapsing into bed? I just had a day like that today! Blech!!! And it’s extra lousy, because my parents and I drove way out to visit some special stores. And we drove all through the mountains…which wouldn’t be so bad, except that by the time we got to the store, I felt awful and we just came back home…through the hilly, curvy mountains…and I tend to get carsick very easily, so you can just imagine how thrilled I was during that 2-hour return trip…:crying:

 

[Pug]

nodding in agreement Definitely! I tried overdoing it in high school, and I got so sick I ended up missing the last three years. So I started college only part-time, but I got so enthusiastic about my classes that I tried going full-time…and crashed again. Now I’ve spent the last 4 years waiting to get better again so I can finish!! (And I’m only 7 classes short!! Aaugh!!!)

How frustrating! Years ago schools weren’t really geared to handle students who wanted to go part time. I’m glad that is an option for people these days. But it takes forever. And with fatigue, something that is supposed to take forever anyway will take twice forever.
Sailor Kenshin:

And I have to ask: does this count as corporeal mortification? Since we don’t actively choose to have this pain and fatigue?

I’m not sure I remember where, but I’ve heard it said that what is best is the burden/mortification that we did not select for ourself, but were given. That one has the most benefit in it. I think it would be great if you could decide to willingly bear the fatigue. (I’m terrible at that myself, though) Maybe we are lucky and have the opportunity to help our relatives and friends by our willingness.

 

[TexCatholic4JMJ]

Maybe this will be a help to some of you who have the above
illnesses (or syndromes). Heard or read recently that a woman
who had been diagnosed with CFS had a sleep study done and
she also had sleep apnea. Treating the apnea helped the CFS
tremendously and her doctor told her that he felt it might solve
the problem completely since SA might have caused it in the
first place. I don’t know if this has been mentioned or if it has
already been tried, but I know that sleep apnea is not readily
looked at as a source of problems. My brother is a sleep
specialist (Doctor) and he says that for some reason people
are reluctant to do sleep studies until they are desperate.
A relative of mine finally went and found out he had minutes
of sleep when he thought he had slept hours!!! He was depressed
most of the time and had developed a heart problem before
he finally went for the sleep study. He hid the problem well
with strangers, business associates, etc. At home though,
it was a different situation.
hope this might help someone.

 

[Feanaro_s_Wife]

Maybe this will be a help to some of you who have the above
illnesses (or syndromes). Heard or read recently that a woman
who had been diagnosed with CFS had a sleep study done and
she also had sleep apnea. Treating the apnea helped the CFS
tremendously and her doctor told her that he felt it might solve
the problem completely since SA might have caused it in the
first place. I don’t know if this has been mentioned or if it has
already been tried, but I know that sleep apnea is not readily
looked at as a source of problems. My brother is a sleep
specialist (Doctor) and he says that for some reason people
are reluctant to do sleep studies until they are desperate.
A relative of mine finally went and found out he had minutes
of sleep when he thought he had slept hours!!! He was depressed
most of the time and had developed a heart problem before
he finally went for the sleep study. He hid the problem well
with strangers, business associates, etc. At home though,
it was a different situation.
hope this might help someone.

**Thanks for passing that along. Personally I have had a sleep study done with nothing abnormal showing. But there seem to be as many potential causes as there are people who suffer…

hopefully your post can help at least one person!

Malia**

 

[TraderTif]

Thank you!

Sleep apnea does run in my family, and my primary doctor did suggest a sleep study. I think I will get one fairly soon, but I’m working on some of my other medical problems, and I’m trying to space everything out. (Since my health insurance doesn’t cover tests at all)

 

[Belle10]

I don’t have fibromyalgia but as I understand it (and from all the posts here!) it’s extremely difficult to deal with. I would encourage all of you to look into glyconutrition. It’s not a cure or anything (obviously, or you would know about it! ) but it can help the body’s immune system function the way it was meant to. Since it’s an auto-immune disorder (right? like rheumatoid arthritis or other rheumatic diseases?) the body essentially attacks itself (attacks healthy cells because it isn’t functioning properly and can’t see that those cells are healthy). If the immune system could “see” properly, it would know not to attack the healthy cells.

Anyway, if anyone wants to PM me I’d be happy to tell you about my Dad (56 years old, chronic lymphocytic leukemia) and a family friend (29 years old, brain tumors/hormone issues) who have seen vast improvements in their health since beginning glyconutrition. (They’re also Catholics with strong faith, and we attribute their health to God of course, and the tools we believe He has helped us to find.)

God bless you guys – I don’t know how you deal with this every day. :hug1:

 

[Zelie_Louis]

Let’s please remember not to share anything that can be considered medical advice. Thanks!

 

[Feanaro_s_Wife]

**Yes, let’s please not get this thread shut down! We need eachother’s support

But there is such a fine line between “medical” advice and suggestions. Most of us have been to umpteen doctors and specialists and have exhausted the possibilities of conventional treatments/therapies. So i do appreciate hearing about new products/therapies so that I can then take that suggestion to my docs.

So if anyone has any other recommendations, please word them carefully so that we don’t get shut down!!!

Malia**

 

[Sailor_Kenshin]

Are we allowed to mention chocolate?

 

[Belle10]

Let’s please remember not to share anything that can be considered medical advice. Thanks!

I assume this was directed to me since it was right after my post

I wasn’t trying to give medical advice, I was just trying to share some hope and share my own experiences just like everyone else – and that’s why I suggested anyone who wanted to could private message me. Please don’t shut down the thread.

 

[TraderTif]

Are we allowed to mention chocolate?

lol, it’s funny you should mention that, as I remember hearing about some study or other about dark chocolate and CFS.

But no, really, I have found a little benefit to eating 3 dark-chocolate-covered brazil nuts every day. It really helped me with my anxiety symptoms. Although…I don’t know if candy really counts as “medical treatment”…

After having CFS for so many years, I sometimes get a little tired (lol) of people offering suggestions of things to try. You know, “take this vitamin”, “wave magnets around”, “change your diet so you only eat foods that begin with the letter G”, etc. There’s a million-jillion different things out there that people can try, and everyone is so different…it’s almost impossible to say what might or might not help someone!

(And yet, if you don’t dash right out and try everyone’s suggestions right-this-second, then they assume that you don’t *want *to get better.)

 

[Feanaro_s_Wife]

After having CFS for so many years, I sometimes get a little tired (lol) of people offering suggestions of things to try. You know, “take this vitamin”, “wave magnets around”, “change your diet so you only eat foods that begin with the letter G”, etc. There’s a million-jillion different things out there that people can try, and everyone is so different…it’s almost impossible to say what might or might not help someone!

(And yet, if you don’t dash right out and try everyone’s suggestions right-this-second, then they assume that you don’t *want *to get better.)

**LOL, God in His infinite wisdom must have used this disease to prep me for being mommy to a high needs baby…

Breastfeeding trouble? Must be something you ate. No, it can’t be something you ate. Stop breastfeeding and feed formula, your milk isn’t good. No, whatever you do, don’t stop.

Baby can’t sleep? Rub some whiskey on her gums. Drink some beer. Let her cry it out. Never let her cry it out. Calm down, she’s picking up on your stress. No, it has nothing to do with you…

I could literally go on and on, lol but I’m sure you get the point. The similarities are eerie. So I have learned (just barely) to remember that most people really are just trying to help (either me being sick or having a difficult baby) and to graciously listen to their “advice” and then do what I need to anyways.

Malia
**