Fatigue

[Guest guest]

When I get in a bad flare it is almost like I took a sleeping pill or something.

I have even fallen asleep right in the middle of singing in the choir!

Semalee

[ ] fatigue

Anyone have a problem with fatigue that they were able to overcome?

I wish I could accomplish more, but fatigue holds me back. I'll be

seeing my rheumy in a few weeks.

Sierra

[Guest guest]

> I have CFS/MCS/Fibro & have had severe fatigue for the last few weeks.

For my, fatigue is phenol intolerance and/or yeast

http://www.danasview.net/phenol.htm

http://www.danasview.net/yeast.htm

> I take vit C to bowel tolerance, B complex, EFAs (fish & flax),

calcium &

> magnesium, and NAC daily.

At first, I had REAL trouble with B vitamins. I became almost

narcoleptic. Try reducing the dose for quite a while, at least a

month, then work up.

I don't tolerate EFAs, altho they don't make me fatigued.

I use HNI enzymes, they help quite a bit

http://www.houstonni.com/

GSE when I have yeast.

Good luck.

Dana

[Guest guest]

Thank you Dana! I had not considered yeast but it may vey well be the

culprit. I've been taking that supplement regimen for quite awhile & have

not had problems with it...notice a negative difference for each thing if I

go off it.

-Sara.

[Guest guest]

> I have CFS/MCS/Fibro & have had severe fatigue for the last few

weeks. My

> stress level has been through the roof and I am not eating or

sleeping

> properly, but I feel this level of fatigue goes beyond all that.

>

> I take vit C to bowel tolerance, B complex, EFAs (fish & flax),

calcium &

> magnesium, and NAC daily. We have a scent-free/chemical-free

home. I eat a

> low carb diet with much of it being organic, and largely GFCF

though I am

> not 100% with that.

>

> I have long had symptoms of hypothyroid and lately have more,

darker body

> hair growing in. I have a low body temp, often my basal temp is

around

> 96.5, pre-ovulatory. My menstrual cycles have been very disrupted

since

> they returned after giving birth; I have had a complete lack of

luteal phase

> and I don't believe I'm ovulating. Could that be caused by

thyroid as well?

> Multiple drs have run multiple thyroid tests & all comes back

normal. I

> have not seen an endocrinologist. Are there natural things for

thyroid

> support that I could try to see if they help?

>

> I have one small amalgam filling so an unable to chelate myself as

of yet.

>

> Thanks very much for any suggestions.

>

> -Sara.

There are times when people have a hard time doing more to care

for themselves, and your post sounds to me like this may be your

situation. Fatigue is hard to DO a lot about, you may not have

the energy.

My suggestion is to go see a local practitioner that appeals to

you--- such as an acupunturist, homeopath, naturopath, or

general practioner of any other sort. See what they can suggest

to get you some more energy. I would not try this endlessly

if it doesn't help, but I think it might be worth a couple of

visits to try out (longer if it helps).

I don't know herbs for thyroid...but no doubt there are some.

good wishes,

Moria

[Guest guest]

Dear Susie, I’m on Arava as well. I thought it helped my fatigue but I

still have it from time to time. Sometimes I just give in and sleep, it

seems the easiest way at times and it also seems like my body actually

requires the sleep.

Of course, there are times when sleep is impossible. My pain management

doctor gave me a pill called Provigil. It does seem to help pick you up and

was originally made for people who have daytime sleepiness. You might ask

your doctor about it since it’s not supposed to be habit forming. I’ve also

found that vitamin B12, B6 and a mult B complex seems to help me almost as

much.

I have fibromyalgia as well and I do think we either don’t process our

vitamins correctly or somehow just deplete them from our body sooner than

most people. I know there are days that the fatigue is a rough as the pain;

at least I normally think that until the pain hits. Then of course I change

my mind again…lol. Either way having both is a rough thing to deal with and

I think we need all the help we can get. I hope one of these things can

help you. Love, Fran

*

I am on arava for pa. it does help with the pain in my knee, hips and

elbows. I was wondering about something to help fatigue? How does

everyone deal with it or do you just take it as it comes? It seems

like i am in either a pain cycle or a fatigue cycle. I also have

fibro,and just started wondering if the fatigue comes on after the

pain so badly because i am recovering from the pain and maybe taking

more pain medication? Thanks for your advice, Susie

..

[Guest guest]

Hi Susie,

Your body has to work extremely hard to cope with your disease and even the

medication you take to fight it. Chronic diseases can certainly cause

chronic fatigue. Although it sounds absurd, one of the best ways to deal with

chronic fatigue is to do some physical activity like yoga, exercise in a warm

pool, tai chi, etc. Exercise stimulates endorphins in the brain which can help

re-invigorate you. I know it can be extremely hard to exercise when in pain,

so my personal exercise of choice is taking an aquatics for arthritics class

at the YMCA.

Wishing you wellness,

Kathy F.

In a message dated 1/18/2005 6:10:08 AM Eastern Standard Time,

fran@... writes:

I am on arava for pa. it does help with the pain in my knee, hips and

elbows. I was wondering about something to help fatigue? How does

everyone deal with it or do you just take it as it comes? It seems

like i am in either a pain cycle or a fatigue cycle. I also have

fibro,and just started wondering if the fatigue comes on after the

pain so badly because i am recovering from the pain and maybe taking

more pain medication? Thanks for your advice, Susie

[Guest guest]

Fran thanks for writing, I will ask about the provigil. Thanks. I

usually do take a multi B viti. I have however gotten out of taking

my supplements. I need to get started back on them. I do really well

for awhile and when everything gets to hurting so much it seems I

forget about everything. Susie

>

> Dear Susie, I'm on Arava as well. I thought it helped my fatigue

but I

> still have it from time to time. Sometimes I just give in and

sleep, it

> seems the easiest way at times and it also seems like my body

actually

> requires the sleep.

>

> Of course, there are times when sleep is impossible. My pain

management

> doctor gave me a pill called Provigil. It does seem to help pick

you up and

> was originally made for people who have daytime sleepiness. You

might ask

> your doctor about it since it's not supposed to be habit forming.

I've also

> found that vitamin B12, B6 and a mult B complex seems to help me

almost as

> much.

>

> I have fibromyalgia as well and I do think we either don't process

our

> vitamins correctly or somehow just deplete them from our body

sooner than

> most people. I know there are days that the fatigue is a rough as

the pain;

> at least I normally think that until the pain hits. Then of course

I change

> my mind again…lol. Either way having both is a rough thing to deal

with and

> I think we need all the help we can get. I hope one of these

things can

> help you. Love, Fran

>

> *

>

> I am on arava for pa. it does help with the pain in my knee, hips

and

> elbows. I was wondering about something to help fatigue? How does

> everyone deal with it or do you just take it as it comes? It seems

> like i am in either a pain cycle or a fatigue cycle. I also have

> fibro,and just started wondering if the fatigue comes on after the

> pain so badly because i am recovering from the pain and maybe taking

> more pain medication? Thanks for your advice, Susie

>

>

>

>

>

>

>

>

> .

>

>

>

[Guest guest]

--- Hi Kathy, I have read different things about exercise and know

that it makes you feel good. When I was well I really loved to walk,

but now it always seems like the days I feel good enough to do

something, like go to the store or do something around the house,

that is all the energy I have. I don't have the stamina to do

anything, it totally sucks!! I feel like I am stuck in a really bad

situation. I also used to go to curves and really liked it and would

like to do that again but my days of feeling well enought to go are

so few. I so appreciate any suggestions. Thank you. Susie In

, Pugnfriend@a... wrote:

>

>

> Hi Susie,

> Your body has to work extremely hard to cope with your disease and

even the

> medication you take to fight it. Chronic diseases can certainly

cause

> chronic fatigue. Although it sounds absurd, one of the best ways

to deal with

> chronic fatigue is to do some physical activity like yoga, exercise

in a warm

> pool, tai chi, etc. Exercise stimulates endorphins in the brain

which can help

> re-invigorate you. I know it can be extremely hard to exercise

when in pain,

> so my personal exercise of choice is taking an aquatics for

arthritics class

> at the YMCA.

>

> Wishing you wellness,

> Kathy F.

>

> In a message dated 1/18/2005 6:10:08 AM Eastern Standard Time,

> fran@m... writes:

>

> I am on arava for pa. it does help with the pain in my knee, hips

and

> elbows. I was wondering about something to help fatigue? How does

> everyone deal with it or do you just take it as it comes? It seems

> like i am in either a pain cycle or a fatigue cycle. I also have

> fibro,and just started wondering if the fatigue comes on after the

> pain so badly because i am recovering from the pain and maybe

taking

> more pain medication? Thanks for your advice, Susie

>

>

>

>

>

>

>

[Guest guest]

In a message dated 1/17/2005 10:29:18 P.M. Eastern Standard Time,

quirkygirl98815@... writes:

I was wondering about something to help fatigue? How does

everyone deal with it or do you just take it as it comes?

Hi Susie,

There is some evidence that people with autoimmune disease have

mineral/vitamin absorption issues, and that may be part of what causes fatigue.

I would

ask your doctor to test your red blood cell count/hematocrit, as well as B12

and folic acid levels. For me, the biggest relief to the fatigue came from

adding 800 mcg daily of folic acid.

I don't think there are any negatives to taking folic acid; I have also read

that in general, women of childbearing age in the US tend to be folate

deficient, and then I've also read that people with PA are folate deficient...my

rheumy has actually just recommended that I double the dose to counteract some

of the potential long term effects of taking Bextra (which will probably soon

be proven to have the same issues as Vioxx and Celebrex).

I think you also have to accept that you will probably be more fatigued than

the average person, and build extra rest time into your schedule. I find

that when I wake up in a lot of pain, sleeping for an extra hour or two can

really help diminish the pain...

Good Luck,

[Guest guest]

In a message dated 1/18/2005 12:52:02 P.M. Eastern Standard Time,

Pugnfriend@... writes:

Chronic diseases can certainly cause

chronic fatigue.

Hi Susie,

To build on what Kathy said...my rheumy gave me a great explanation for the

fatigue. She said that because our body is constantly attacking itself, it's

like having the never-ending flu...your body is always expending energy

fighting what it thinks is a foreign invader. This is what causes the immense

fatigue, just like you get fatigued if you have a cold, flu or other infection.

I know it doesn't help with the fatigue to know this, but somehow I feel

better understanding what causes the fatigue!

To Kathy's point about exercise, even when I absolutely don't feel like it,

I always feel better afterward...it is so important to keep the joints limber

and lubricated, and exercise (gentle of course) really helps...:-)

[Guest guest]

In a message dated 1/18/2005 7:18:37 P.M. Eastern Standard Time,

quirkygirl98815@... writes:

.. I have however gotten out of taking

my supplements. I need to get started back on them. I do really well

for awhile and when everything gets to hurting so much it seems I

forget about everything. Susie

Hi Susie, forgive me for replying so many times but you sound so much like

me! I complained to my doctor about having to take one more pill (vitamin)

and that it was so big and made me burp, etc. She said she understood and told

me to buy children's chewables. So I did and I am much more disciplined

about taking them:-) Many of us on this site have trouble remembering all the

meds, supplements, etc...for me, I had to get one of those daily pillboxes

and set it up in advance so that I know which pills I have taken and which ones

are still left to take.

But as I mentioned before, when/if you have absorption issues, sometimes the

regular supplements don't cut it and they can give you alternatives...for

example I inject my B12 and take a form of prescription iron that is more

readily absorbed by the body...so it's worth asking your doctor to test your

levels to see if absorption is an issue for you.

It is so overwhelming when you are first dealing with this, every shortcut

you hear about can help...

[Guest guest]

The fatigue isstarting to drive me a bit crazy. I have been trying to deny,

ignore it. On the weekends I take naps when my husband can watch my kids. I

am now trying to solve my sleep problems cause I'm sure that adds much to my

fatigue. So I guess the answer is I take it as it comes. My friend with pa.

p, and fibro can't function without taking provagel in the morning. I am not

comfortable with it as it is a form of a stimulant I think and can affect your

blood pressure. Definately talk with your doc about extreme fatigue.\

hang in there,

[Guest guest]

When blood tests showed my Vitamin C to be severely low, I started taking

500 mg per day. The energy was dramatic. I felt like I had been living in

a fog that last few years.

Ks Di

Re: [ ] fatigue

>

>

>

> In a message dated 1/17/2005 10:29:18 P.M. Eastern Standard Time,

> quirkygirl98815@... writes:

>

> I was wondering about something to help fatigue? How does

> everyone deal with it or do you just take it as it comes?

>

>

> Hi Susie,

> There is some evidence that people with autoimmune disease have

> mineral/vitamin absorption issues, and that may be part of what causes

fatigue. I would

> ask your doctor to test your red blood cell count/hematocrit, as well as

B12

> and folic acid levels. For me, the biggest relief to the fatigue came

from

> adding 800 mcg daily of folic acid.

>

> I don't think there are any negatives to taking folic acid; I have also

read

> that in general, women of childbearing age in the US tend to be folate

> deficient, and then I've also read that people with PA are folate

deficient...my

> rheumy has actually just recommended that I double the dose to counteract

some

> of the potential long term effects of taking Bextra (which will probably

soon

> be proven to have the same issues as Vioxx and Celebrex).

>

> I think you also have to accept that you will probably be more fatigued

than

> the average person, and build extra rest time into your schedule. I find

> that when I wake up in a lot of pain, sleeping for an extra hour or two

can

> really help diminish the pain...

>

> Good Luck,

>

>

>

[Guest guest]

Try 3.0mg LDN and possibly a change in his energy expectations.

What can you tell us about his efforts and fatigue?

Before MS and for a few years...

I used to dance, ride a bike, walk through grass, walk without a walking stick, etc.

I used to mow the lawn and rest for a couple of hours.

- I do go shopping for groceries and get tired half way through but still drive home and try to help putting away the groceries.

Or if it is really bad, just flop on the easy chair for at least 1/2 an hour or more.

- I do help with my son, change his clothes, diapers, sit on the couch and work puzzles with him, sit on the floor and get tired because of it, as I play with him there.

- I do take care of him as my wife goes to a Mommies night out.

- I don't like to give him a bath because it is very hard to sit on a stool and get fatigued then dry him and then change him.

- I do like to read him bedtime storries though.

I am still trying to figure out an energy model that will work for me.

However, If you don't use it you lose it. So we have to keep stretching and exercising or we will decay into an energyless puddle of Whaa.. like my 19mo. old son who wants his strawberries NOW!

I think I felt a slight increase in energy with a change in diet, but I will try that out again at the end of the week.

Mostly, I hate the way that yellow sun saps my super powers!

And I live in California!

-

[Guest guest]

In a message dated 4/10/05 7:53:01 AM Pacific Daylight Time, nardi71@... writes:

Cordydeps mushroom extract for energy and endurance.

nardi71, what are your experiences with this?

This is what I find.

-

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[Guest guest]

glitter14k wrote: " My husband is on LDN 1.5mg. for M.S. his is always

so tired.... "

How long has he been on LDN? Most people who start at 1.5mg find

that it is too low, and move up to 3.0mg or 4.5mg. You might try

this.

Maureen

[Guest guest]

Cordydeps mushroom extract for energy and endurance.

[low dose naltrexone] Fatigue

>

>

> My husband is on LDN 1.5mg. for M.S. his is always so tired. We went to

> the health food store & spent a fortune on vitiams & powders for

> energy. Nothing has worked so far. Does anybody have any ideas other

> than B12. Thank you

>

>

>

>

>

>

>

>

[Guest guest]

1.5mg LDN will do nothing for MS. Up the dose to no less than 3.0mg. Disease

progression will not halt at doses below 3.0mg and some require 4.5mg. Get Milk

Thistle from healthfood store, not some combination of other supplements in with

the milk thistle, just milk thistle capsules alone. Have your husband take 1

capsule of milk thistle with his nightly LDN and maybe 1 capsule during the day.

This will help counteract any stiffness that may come with increasing the LDN

dose.

[Guest guest]

,

Thank you. We will try that. We have tryed increaseing his dose to 3mg. but

he gets so tried that he can not work, So we had to drop back down to 1.5mg.

We are doing the LDN on our own, no doctor, so we try to follow & lean from

the groups email. The only thing the doctors wanted to do was stick him on

copaxone for the rest of his life. Why do you say 1.5mg will not work?

[low dose naltrexone] Re: Fatigue

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> 1.5mg LDN will do nothing for MS. Up the dose to no less than 3.0mg.

Disease progression will not halt at doses below 3.0mg and some require

4.5mg. Get Milk Thistle from healthfood store, not some combination of

other supplements in with the milk thistle, just milk thistle capsules

alone. Have your husband take 1 capsule of milk thistle with his nightly

LDN and maybe 1 capsule during the day. This will help counteract any

stiffness that may come with increasing the LDN dose.

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I have mentioned this before but besides b-12 in the form of sublingual methylcobalamin- NADH 7.5mg , acetyl-l-carnitine and alpha lipoic acid on an empty stomach should increase energy alot. These items can be purchased through Swanson Vitamins mail order catalog. Otherwise they can be very expensive but usually work

[low dose naltrexone] Fatigue

Glitter--what a wonderful name, whether or not it's real!--I'm curious as to why your husband is taking 1.5 mg for MS. Dr. Bihari does not believe anything under 3 mg is effective. Have you see the website? If you haven't, it's an important source of information: www.low dose naltrexone.org.As for fatigue... I've found that to be the hardest one to deal with. I've been taking B12 shots since December--every few weeks and now once a month--and I've found them to be more effective than anything else I've tried. Since the Fall, I've also been taking cod liver oil (Carlson's Norwegian Cod Liver Oil--lemon-flavored--so not truly disgusting) and blueberry softgels. (I order both from Dr. Mercola's website, on the advice of Tom.) It's a distinct possibility that the cod liver oil has also caused my energy level to improve. I've also had a short spurts of improvement when I've taken Bragg's apple cider vinegar.Does your husband get enough sleep? That's crucial--at least for me. -- No virus found in this outgoing message.Checked by AVG Anti-Virus.Version: 7.0.308 / Virus Database: 266.9.5 - Release Date: 4/7/2005

[Guest guest]

> ,

> Thank you. We will try that. We have tryed increaseing his dose to 3mg. but

> he gets so tried that he can not work, So we had to drop back down to 1.5mg.

> We are doing the LDN on our own, no doctor, so we try to follow & lean from

> the groups email. The only thing the doctors wanted to do was stick him on

> copaxone for the rest of his life. Why do you say 1.5mg will not work?

========

The fatigue will probably only last a few days until his body gets adjusted to

the higher dose. Try upping his dose when he will be off work, his days off.

Try going to 2.0mg for a week, then 2.5mg for a week and then up to 3.0mg. Use

the milk thistle and if he has sleep disturbances use 15mg of melatonin from the

healthfood store.

With my conversation with Dr. Bihari he said for people with MS doses lower than

3.0mg will most likely not halt disease progression. I am on LDN for my MS and

my mom is on LDN for breast cancer.

[Guest guest]

> I know LDN is to halt progression and some get symptom relief but I

> wonder why we all don't get fatigue relief. Seems getting more

> endorphins would help that. I find it odd some get fatigue relief soon

> after taking LDN and others don't. I haven't been on the LDN a year

> yet so not giving up hope of fatigue releif. I may try the DL Phen.

> and see how if affects me now since I have the fatigue. I took it long

> ago to see if helps with pain and it really was too much for me. Felt

> like Speed and I couldn't sleep either. It was really strange but I'm

> willing to try to see now if it will help the fatigue.

>

> My fingernails still look unhealthy and some white spots. Never been

> like this before so I feel like it's from the LDN or the oil of oregano

> I'm taking. I hate it b/c my nails have always been healthy and grow

> fast. But I guess worth it to get rid of the pain and unbalance and

> halt progresion.

>

> Rhonda

=========

Rhonda,

Are you taking 3.0mg or 4.5mg? If you try the DL-Phenylalanine 500mg make sure

you read the cautionary warning on other conditions it will affect. Try taking

one 500mg DL-Phenyl along with your nightly LDN dose and 1 capsule around noon

time.

[Guest guest]

I'm taking 4.5 as close as I can get from a crushed pill. Actually,

I'm a little scared of the DL Phen. b/c I tried years ago and it

made me crazy and I ran straight into a curb like a wired woman on

drugs. I may have some reactions to it others don't so not sure and

If I take at night, may never sleep. It could react differently to

me know considering the fatigue. I can have an irregular heartbeat

also if take things to speedy and stress can trigger it also.

Rhonda

> > I know LDN is to halt progression and some get symptom relief

but I

> > wonder why we all don't get fatigue relief. Seems getting more

> > endorphins would help that. I find it odd some get fatigue

relief soon

> > after taking LDN and others don't. I haven't been on the LDN a

year

> > yet so not giving up hope of fatigue releif. I may try the DL

Phen.

> > and see how if affects me now since I have the fatigue. I took

it long

> > ago to see if helps with pain and it really was too much for

me. Felt

> > like Speed and I couldn't sleep either. It was really strange

but I'm

> > willing to try to see now if it will help the fatigue.

> >

> > My fingernails still look unhealthy and some white spots. Never

been

> > like this before so I feel like it's from the LDN or the oil of

oregano

> > I'm taking. I hate it b/c my nails have always been healthy and

grow

> > fast. But I guess worth it to get rid of the pain and unbalance

and

> > halt progresion.

> >

> > Rhonda

> =========

>

> Rhonda,

>

> Are you taking 3.0mg or 4.5mg? If you try the DL-Phenylalanine

500mg make sure you read the cautionary warning on other conditions

it will affect. Try taking one 500mg DL-Phenyl along with your

nightly LDN dose and 1 capsule around noon time.

>

>

[Guest guest]

Hi Ronda.

> My fingernails still look unhealthy and some white spots. Never

been

> like this before so I feel like it's from the LDN or the oil of

oregano

It seems that your body needs more zinc. I 'd suggest you get some

zinc supplements for a couple of weeks and see if it gets beter.

Steroids make zinc leave your body much faster, so this situation is

normal if you have recently taken steroids.

Stavros

[Guest guest]

--- In low dose naltrexone , Telsha Finlayson <gottogetmore@y...>

wrote:

>

> My wife Vicki is on her 4th week of LDN 4.5 . Every night at 9:30 . She is

doing great on it except for the tiredness . Any thoughts about what to do or

something to take ( non habit forming ) would be appreciated . Thanks Steve

>

>

=======

Steve if the tiredness lasts longer than two months she may only need 4.0mg or

3.5mg or 3.0mg of LDN. The higher dose may be too much for her system.