Fatigue

[Guest guest]

I am SO HAPPY with LDN, and I think we can all agree that it is a great treatment that helps many! I hope for all to have positive outcomes from their LDN treatment, but always remember to be patient...it does take time for our bodies to adjust to actually working correctly again .

As far as the additional fatigue after starting LDN, I feel very strongly that the fatigue is created because we are DOING more. For some of us, it's actually physically doing more--I know for me, the extra energy that LDN gave me got me busier than before, thus a bit more tired and fatigued that before...that passed and I'm feeling great now, though. For others, it's not that there has been more physical activity immediately, but internally, our bodies are WORKING more than they did before---that's why the "vivid dreams"....we're having more "normal" brain activity---our body gets tired...it's OK. One thing that helped me also was to stop taking anything else that was unnecessary (I was on Provigil, but found that when taking both, I was extra tired in the afternoon and didn't sleep at night...once I went off it and stayed with LDN only, I still have to rest in the afternoon (remember, my body is WORKING for a change), but I feel great and sleep SO WONDERFULLY at night! I'm so grateful for LDN and hope that anyone out there who is worried about changes will remember to give it time and to remember that their body may be tired because of the extra work.

, Las Vegas

[Guest guest]

must be messing up. I can't see previous message below. Anywho

I just wanted to say that makes perfect sense . I hadn't

thought of it that way. Our bodies are busier healing and adjusting it

stands to reason it would be more fatigued. Thanks for sharing that.

What did you mean by the dreams? I didn't quite understand. I am

dreaming so much! Watch I'll probably dream about this post. Lol! I

wish all meds. had this as the only side effect. Very doable!

Take Care who can't see previous post but is doing some

upgrading.

[Guest guest]

note to fight fatigue.

Just an added note for people who take the dlph. Make

sure you

eat soon after you take your pill.(some people fail

to eat breakfast). I know with me it helps with the

energy boost, helping to fight the fatigue. The other

added help that has been posted in this room was the

teaspoon of cayanne pepper in 8 oz of water. That has

helped when in need a last minute boost. It also seems

to help to get rid of the riging in my ears for a

little while.....has anyone else had this experience?

> >

[Guest guest]

As I look back at my life, I realized that the fatigue I felt in my arms

while tying a bow tie was due to CMT, not frustration with the

instructions.

To paraphrase the immortal Dr. Suess, " Ah, the discoveries you'll make! "

Larry

[Guest guest]

Hi ,

I work full time for now, my RA hit me last January 2005. I tend to push my

way through the day at work, I have no energy, if I do its from the

Oxycodone...I'd love to just crawl under the covers and sleep until I wake

refreshed....yeah right....'

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[Guest guest]

I don't know if it will help, but this is my med list. Any ideas on what

might affect fatigue?

(*)- Breakfast and/or Dinner

Methotrexate 1.0 cc Weekly

injection Immune suppressant

Folic Acid* 5mg Daily

Replacement from MTX

Prednisone* 5mg Twice

Daily Pain/Steroid

Lodine XL* 500mg Twice Daily

Anti-inflammatory

Prilosec OTC 1 tab 36 hours

Indigestion

MS Contin* 30mg Twice

Daily Pain-Morphine

Enalapril* 20mg Twice

Daily Blood Pressure

{Diltiazem ER* (Cardizem) 20mg AM

Heart Regulation}

Sotalol HCL* 80mg Twice

Daily Heart Regulation

Temazipam (Restoril) 30mg Bedtime

NEW Sleep Aid)

Amitriptyline 75mg Bedtime

Relaxation/Sleep

Fosamax 70mg Sunday

AM Osteoporosis

Lorazepam 1mg As

needed Anti-anxiety

Soma 350mg As

Needed Muscle Relaxant

Evoxac 30mg As

Needed Dry Mouth- Sjogren's Syndrome

Dennis in Eastexas

" It's not Rocket Surgery "

[Guest guest]

Stacey

I take ProVigil for my CFS. It works very well and doesn't make my heart race.

I use it for the fibro fog that I get. It seems like it just clears away the

fog and I can think and function again. Before the provigil, I would catch

myself wandering around my house, knowing I had a ton of things to do, but was

not able to prioritize or get one thing done. I could barely hold my eyes open.

I am so thankful for the provigil!

HTH

hugs

PS I take 200mg a day, but not every day.....only on the days when the CFS is

really bad.

[Guest guest]

Hi, Stacey!

Ritalin is a central nervous system stimulant. Folks with ADD or

ADHD use it to help them focus more on one thing at a time than

trying to think about thirty things at once. It sort of gives them

enough mental 'energy' to be able to sort things out instead of just

being jumbled thoughtwise. Since it's a stimulant, it can also be

used to help sometimes with fatigue.

I've used provigil for the fatigue. It works really well for me,

but I got elevated blood pressure from it so had to discontinue

taking it. Not very many people get this side effect from it, but

it does bear checking if you start taking it. It wasn't a huge rise

in BP, but I have a clotting problem that makes me prone to

strokes. The combination of clotting and elevated BP was a bit too

much of a risk for me. Bummer. It worked pretty well, and I miss

it.

LCB

>

> Hi All!

> I saw in an earlier post that ritalin is used for

> fatigue? (I thought that was a depressant used for

> people w/ADD etc)

> Does anyone take anything for the fatigue

[Guest guest]

:

I also read the post about taking Ritalin and was honestly shocked. I have

two sons with ADD/ADHD and Ritalin is NOT a depressant! It is a stimulant.

Basically, this person is taking a drug that has effects similar to, but more

potent than, caffeine and less potent than amphetamines. It is a controlled

substance (which is why you have to go through ten tons of red tape to get it

for kids who actually need it). It surprised me that anyone would be taking it

for fatigue.

On ADHD kids, whose chemical make-up is imbalanced, Ritalin does not act as a

stimulant, but actually calms them down and helps kids to focus. On " normal "

people, it could be like the equivalent of 10 cups of coffee or snorting

cocaine. It could certainly boost a person's energy level, but I'm not sure I

would want to face the " down " side of it. I'd be concerned that it would keep

me from getting some much needed rest.

Here's some web info. I found: " Ritalin (methylphenidate) is a central

nervous system stimulant, similar to amphetamines in the nature and duration of

its effects. It is believed that it works by activating the brain stem arousal

system and cortex. Pharmacologically, it works on the neurotransmitter dopamine,

and in that respect resembles the stimulant characteristics of cocaine.

Short-term effects can include nervousness and insomnia, loss of appetite,

nausea and vomiting, dizziness, palpitations, headaches, changes in heart rate

and blood pressure (usually elevation of both, but occasionally depression),

skin rashes and itching, abdominal pain, weight loss, and digestive problems,

toxic psychosis, psychotic episodes, drug dependence syndrome, and severe

depression upon withdrawal.

What are its long-term effects? High doses of stimulants produce

a predictable set of symptoms that include loss of appetite (may cause serious

malnutrition), tremors and muscle twitching, fevers, convulsions, and headaches

(may be severe), irregular heartbeat and respirations (may be profound and life

threatening), anxiety, restlessness, paranoia, hallucinations, and delusions,

excessive repetition of movements and meaningless tasks, and formicaton

(sensation of bugs or worms crawling under the skin). "

I have major fatigue issues, also. I think most of us in this group do.

Every time I complain to my rheumy about how terrible the fatigue is, she ups my

meds or puts me on more meds, but nothing has made a major difference in my

level of fatigue so far. I feel bad for the person who is taking it, because it

means the fatigue must be unbearable. I just hope that it is helping.

in Texas

<kyrik@...> wrote:

Hi All!

> I saw in an earlier post that ritalin is used for

> fatigue? (I thought that was a depressant used for

> people w/ADD etc)

> Does anyone take anything for the fatigue-I thought

> that there was nothing for this. Fatigue is a MAJOR

> problem for me-as I have a 1 yr old to chase around!

Before I was DXd I was just exhausted, would wake up on some

days and have no idea how I was gong to cope. (And my kids are

teens, not babies, that must be so hard!)

Anyway, my father, who lives in Canada, sent me an aspirin

combo that's legal up there. It includes a very small amount

of Codeine, some caffeine and aspirin. It was all that got me

thru the day sometimes.

Unfortunately, eventually I developed an ulcer from all the

aspirin (and I have a cast iron stomach) so I can't really

recommend it, but oh, it was lovely

So, I'm interested in fatigue fighters, too. I just lose it

toward evening on most days. Although then I do find myself

up at 1:19 am on some nights, as well Not that I'm good for

anything other than typing...

[Guest guest]

I take Ritalin for fatigue. I have been taking it for about 2 months now. I

can definitely tell a difference with the energy level and ability to focus on

things that need to be done. I would recommend it.

<kyrik@...> wrote:

Hi All!

> I saw in an earlier post that ritalin is used for

> fatigue? (I thought that was a depressant used for

> people w/ADD etc)

> Does anyone take anything for the fatigue-I thought

> that there was nothing for this. Fatigue is a MAJOR

> problem for me-as I have a 1 yr old to chase around!

Before I was DXd I was just exhausted, would wake up on some

days and have no idea how I was gong to cope. (And my kids are

teens, not babies, that must be so hard!)

Anyway, my father, who lives in Canada, sent me an aspirin

combo that's legal up there. It includes a very small amount

of Codeine, some caffeine and aspirin. It was all that got me

thru the day sometimes.

Unfortunately, eventually I developed an ulcer from all the

aspirin (and I have a cast iron stomach) so I can't really

recommend it, but oh, it was lovely

So, I'm interested in fatigue fighters, too. I just lose it

toward evening on most days. Although then I do find myself

up at 1:19 am on some nights, as well Not that I'm good for

anything other than typing...

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[Guest guest]

I'm glad to hear that ritalin has worked for some with the fatigue. Do you have

the " backlash " effect when it wears off in the evening. i.e. are you even more

exhausted, irritated when the effects of ritalin wear off? My son was on

ritalin for years and we had his meds switched b/c of the backlash effect.

Re: [ ] fatigue

I take Ritalin for fatigue. I have been taking it for about 2 months now. I

can definitely tell a difference with the energy level and ability to focus on

things that need to be done. I would recommend it.

<kyrik@...> wrote:

Hi All!

> I saw in an earlier post that ritalin is used for

> fatigue? (I thought that was a depressant used for

> people w/ADD etc)

> Does anyone take anything for the fatigue-I thought

> that there was nothing for this. Fatigue is a MAJOR

> problem for me-as I have a 1 yr old to chase around!

Before I was DXd I was just exhausted, would wake up on some

days and have no idea how I was gong to cope. (And my kids are

teens, not babies, that must be so hard!)

Anyway, my father, who lives in Canada, sent me an aspirin

combo that's legal up there. It includes a very small amount

of Codeine, some caffeine and aspirin. It was all that got me

thru the day sometimes.

Unfortunately, eventually I developed an ulcer from all the

aspirin (and I have a cast iron stomach) so I can't really

recommend it, but oh, it was lovely

So, I'm interested in fatigue fighters, too. I just lose it

toward evening on most days. Although then I do find myself

up at 1:19 am on some nights, as well Not that I'm good for

anything other than typing...

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things done faster.

[Guest guest]

I have been taking it twice a day - the last one around noon. I have not

noticed being more exhausted or irritable when it wears off. Although, I do

also take Ativan which has a calming effect on me. So it is kind of hard to

say.

Ritalin has been good for me so far.

Let me know if you have any other questions.

Miny

JULIE LALIS <drack2@...> wrote:

I'm glad to hear that ritalin has worked for some with the fatigue. Do

you have the " backlash " effect when it wears off in the evening. i.e. are you

even more exhausted, irritated when the effects of ritalin wear off? My son was

on ritalin for years and we had his meds switched b/c of the backlash effect.

Re: [ ] fatigue

I take Ritalin for fatigue. I have been taking it for about 2 months now. I can

definitely tell a difference with the energy level and ability to focus on

things that need to be done. I would recommend it.

<kyrik@...> wrote:

Hi All!

> I saw in an earlier post that ritalin is used for

> fatigue? (I thought that was a depressant used for

> people w/ADD etc)

> Does anyone take anything for the fatigue-I thought

> that there was nothing for this. Fatigue is a MAJOR

> problem for me-as I have a 1 yr old to chase around!

Before I was DXd I was just exhausted, would wake up on some

days and have no idea how I was gong to cope. (And my kids are

teens, not babies, that must be so hard!)

Anyway, my father, who lives in Canada, sent me an aspirin

combo that's legal up there. It includes a very small amount

of Codeine, some caffeine and aspirin. It was all that got me

thru the day sometimes.

Unfortunately, eventually I developed an ulcer from all the

aspirin (and I have a cast iron stomach) so I can't really

recommend it, but oh, it was lovely

So, I'm interested in fatigue fighters, too. I just lose it

toward evening on most days. Although then I do find myself

up at 1:19 am on some nights, as well Not that I'm good for

anything other than typing...

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things done faster.

[Guest guest]

I tried it but couldn't take it, it burned my skin too bad.

Jim

###

rasheedaas <rasheedaas@...> wrote:

Bunni,

I tried CoQ-10 for my fatigue, and it seemed to help.

Have you tried that?

Also elsewhere on here, people have talked about Eleutherou Ginseng (I

have not idea how to spell!) if you do a search under Ginseng you'll

turn it up.

Buhner recommends it and some peoplehave found it very effective.

ellen

[Guest guest]

Yes I get to where if I get to work and home I am doing good. If anything after

is a plus on some days. There are times I do not want to see anyone and they

tell me my voice is a tail tell sign when I am in pain.

Marsha

[ ] fatigue

Well I have another sinus infection... .big sigh.

Anyway, do any of you just feel so very fatigued? I just feel like I want to

stay at home

all the time and not venture out. My sisters always want to go shopping and that

is

something I dread. I just feel so old...

Joy

[Guest guest]

I feel the same way....I have to watch how many

errands i do at a time because I get too tired!

I hate it. I feel like Im about double my age

stacey

--- Joy <jhoorm01@...> wrote:

> Well I have another sinus infection....big sigh.

> Anyway, do any of you just feel so very fatigued?

> I just feel like I want to stay at home

> all the time and not venture out. My sisters

> always want to go shopping and that is

> something I dread. I just feel so old...

> Joy

>

>

> [Non-text portions of this message have been

> removed]

>

>

Don't be flakey. Get for Mobile and always stay connected to

friends. http://mobile./mail

[Guest guest]

I have started taking CoQ10 consistenly also. Years ago, an alternative doctor

I was

seeing at the time encouraged me to take it, 400 mgs a day. I thought that was

a

huge dose and never took that much. Now, I have tried it again and, yes, it

does

help my energy level. I am going to experiment with Rhodiola dosage too and see

if

a bigger dose is what I need. My cortisol output is out of sync. My LLMD

tested my

biorhythms and instead of being at a higher level in the am, it is lower. I

have a higher

level in the afternnoon instead. Indeed, we are all unique and differ one from

another.

I won't go overboard and take a megadose at the start, but start slowly and work

upwards.

Thanks for the tip.

ann

think@...

Hi Ann,

I have posted this before but will repeat - for me CO-Q10 has made an

enormous difference in my energy level. I have stopped taking it to

see, and it is definitely the one responsible for my high energy level.

I get the brand Natural Factors and for some reason it is cheaper than

most.

I take 100 mg once in the morning and sometimes once at night.

best,

ellen

[Guest guest]

Trudy,

Yes, lately I have been that way - I've slept for nearly 3 days straight - only

getting up to visit the bathroom, drink water, take meds and head back to bed...

I am just exhausted. I know it will pass - but it sure isn't fun while it

lasts...

Rose

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[Guest guest]

Thats how I have been for the last 24 hrs also... very warn down... I have been

up longer this evening than yesterday at least..

Kerry

---- Rose Paterson <mom2rkd@...> wrote:

> Trudy,

>

> Yes, lately I have been that way - I've slept for nearly 3 days straight -

only getting up to visit the bathroom, drink water, take meds and head back to

bed... I am just exhausted. I know it will pass - but it sure isn't fun while

it lasts...

>

> Rose

>

>

>

>

> ---------------------------------

> Be a better Globetrotter. Get better travel answers from someone who knows.

> Answers - Check it out.

>

>

[Guest guest]

Hi everyone, I am new to this site.

I can relate to the fatigue though, I work full time and I must say by

Thursday I am in a lot of pain and drained so by the weekend I am

really tired and spend a lot of time in bed which I would rather be

doing other things but too tired and drained to do anything else.

Mind you since having RA in the week do not seem to stay up past 8 to

9pm because at that point my body is in too much pain and no amount of

painkillers would help rather than lying down in bed.

[Guest guest]

,

Boy after reading your comment it should be signed " linda " , this is exactly

how i feel.

laurennsorh <laurennsorh@...> wrote:

Hi everyone, I am new to this site.

I can relate to the fatigue though, I work full time and I must say by

Thursday I am in a lot of pain and drained so by the weekend I am

really tired and spend a lot of time in bed which I would rather be

doing other things but too tired and drained to do anything else.

Mind you since having RA in the week do not seem to stay up past 8 to

9pm because at that point my body is in too much pain and no amount of

painkillers would help rather than lying down in bed.

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[Guest guest]

>

> Hello everyone, my name's Bridget, I'm 23 and I'm taking LDN (4.5mg,

> 2.5 months now) for Ankylosing Spondylitis. I've been quite

fatigued

> since I moved up to the 4.5mg dose (from 3mg) but I'm not sure if

this

> is a side-effect of the LDN or if I was always fatigued, and I'm

only

> noticing it more now because the pain's gone way down. Does that

make

> sense? I keep wanting to sit and rest now, and I only stay awake

about

> 12 hours a day (not cool for a working college student who also has

a

> small farm and tries to have friends, as well). I always did need

to

> sit and rest, but I always told myself it was because it hurt to

stand

> up. I'm quite confused by this. I asked my neuro (the only doc in

> town who prescribes LDN, it's the only reason I'm seeing him) and he

> says he doesn't have enough LDN patients to tell me whether this is

a

> side-effect.

> Thanks a bunch!

> -Bridget

>

=========

Ride with 4.5mg for a little while longer, your system may adjust as

time passes. If it does not pass by the end of the month lower it to

4mg and see what that does.

[Guest guest]

LDN can interfere with sleep, and that may be causing your fatigue. But this

effect can be

minimized or eradicated if you work your way up gradually to a full dose. If

your capsules

are 4.5 mg, try spilling them out and dividing them in 4 - don't worry about

getting them

precisely even - then take 1/4 for a week or so, then 2/4, then 3 and so on.

Also, for many people, a full dose is only 3 mg, and it is even less for some.

The minimum

effective dose is considered to be 1.75 mg, but I've seen a few people reporting

success

with only 1.5 mg. You should probably get as close to 4.5 as you can tolerate,

but don't

worry if you can't get there, especially if you're at 1.75 or above.

I started with 1.5 mg and took two months to work my way up to 3 mg. I now have

no

trouble sleeping at all - in fact I sleep better. I also take Wellbutrin

(non-time-release) and

seem to sleep best when I take my second daily dose of Wellbutrin with the LDN.

Some

people in this group take it with melatonin. But you'll probably be okay just

taking it alone

if you allow yourself to get used to it gradually.

After my experience, I was stunned to see people starting right in with 4.5 mg,

since my

early attempt to start right away with 3 mg just blew me away with sleep

disturbance &

fatigue!

>

> Hello everyone, my name's Bridget, I'm 23 and I'm taking LDN (4.5mg,

> 2.5 months now) for Ankylosing Spondylitis. I've been quite fatigued

> since I moved up to the 4.5mg dose (from 3mg) but I'm not sure if this

> is a side-effect of the LDN or if I was always fatigued, and I'm only

> noticing it more now because the pain's gone way down. Does that make

> sense? I keep wanting to sit and rest now, and I only stay awake about

> 12 hours a day (not cool for a working college student who also has a

> small farm and tries to have friends, as well). I always did need to

> sit and rest, but I always told myself it was because it hurt to stand

> up. I'm quite confused by this. I asked my neuro (the only doc in

> town who prescribes LDN, it's the only reason I'm seeing him) and he

> says he doesn't have enough LDN patients to tell me whether this is a

> side-effect.

> Thanks a bunch!

> -Bridget

>

[Guest guest]

I've been on LDN for nearly 4 years. Started at 4.5 mg, but last fall changed to 3 mg due to severe stiffness and back spasms. Although now I know LDN had nothing to do with the increase in symptoms I've stayed at the 3 mg dose. From time to time there has always been someone to recommend dividing capsules. Personally, I don't recommend this because 4.5 mg of Naltrexone is about the size of a grain of sand. Dr Skip explained this some time back. How could one know if they are dividing that grain of sand into four equal parts? Chances are there will be times that you get nothing but filler. You might try mixing the liquid method. It would be more accurate. JMHO, for what it's worth. Marcie judith

<j-silverstein@...> wrote: LDN can interfere with sleep, and that may be causing your fatigue. But this effect can be minimized or eradicated if you work your way up gradually to a full dose. If your capsules are 4.5 mg, try spilling them out and dividing them in 4 - don't worry about getting them precisely even - then take 1/4 for a week or so, then 2/4, then 3 and so on. Also, for many people, a full dose is only 3 mg, and it is even less for some. The minimum effective dose is considered to be 1.75

mg, but I've seen a few people reporting success with only 1.5 mg. You should probably get as close to 4.5 as you can tolerate, but don't worry if you can't get there, especially if you're at 1.75 or above. I started with 1.5 mg and took two months to work my way up to 3 mg. I now have no trouble sleeping at all - in fact I sleep better. I also take Wellbutrin (non-time-release) and seem to sleep best when I take my second daily dose of Wellbutrin with the LDN. Some people in this group take it with melatonin. But you'll probably be okay just taking it alone if you allow yourself to get used to it gradually.After my experience, I was stunned to see people starting right in with 4.5 mg, since my early attempt to start right away with 3 mg just blew me away with sleep disturbance & fatigue!>> Hello everyone, my name's Bridget, I'm 23 and I'm taking LDN (4.5mg, > 2.5 months now) for Ankylosing Spondylitis. I've been quite fatigued > since I moved up to the 4.5mg dose (from 3mg) but I'm not sure if this > is a side-effect of the LDN or if I was always fatigued, and I'm only > noticing it more now because the pain's gone way down. Does that make > sense? I keep wanting to sit and rest now, and I only stay awake about > 12 hours a day (not cool for a working college student who also has a > small farm and tries to have friends, as well). I always did need to > sit and rest, but I always told myself it was because it hurt to stand > up. I'm quite confused by this. I asked my neuro (the only doc in > town who prescribes LDN, it's the only reason I'm seeing him) and he > says he doesn't have enough LDN patients to tell me whether this is a

> side-effect.> Thanks a bunch!> -Bridget>

[Guest guest]

Bridget,

I too feel tired and sleepy during the day... especially mid afternoon... I feel like I've taken a narcotic pain killer but then I'm very sensitive to any medication... I'm on 1.5 mg. going to move up to 2mg. this week... see how that goes!

Wanda

-------------- Original message -------------- From: "Bren" <b63powell@...>

>> Hello everyone, my name's Bridget, I'm 23 and I'm taking LDN (4.5mg, > 2.5 months now) for Ankylosing Spondylitis. I've been quite fatigued > since I moved up to the 4.5mg dose (from 3mg) but I'm not sure if this > is a side-effect of the LDN or if I was always fatigued, and I'm only > noticing it more now because the pain's gone way down. Does that make > sense? I keep wanting to sit and rest now, and I only stay awake about > 12 hours a day (not cool for a working college student who also has a > small farm and tries to have friends, as well). I always did need to > sit and rest, but I always told myself it was because it hurt to stand > up. I'm quite confused by this. I asked my neuro (the only doc in &gt

; town who prescribes LDN, it's the only reason I'm seeing him) and he > says he doesn't have enough LDN patients to tell me whether this is a > side-effect.> Thanks a bunch!> -Bridget>=========Ride with 4.5mg for a little while longer, your system may adjust as time passes. If it does not pass by the end of the month lower it to 4mg and see what that does.

[Guest guest]

WANDA - i experienced the same effect; but only when taking the pain reliever - ULTRAM!! after 3 doses of it, along with the nightly LDN dosage of only 3.0 mg., i could not hold my eyes open the next day. literally went to sleep while my daughter drove me in the car. then, again, while at my gr'son's house!! JUST COULD NOT STAY AWAKE. did not take any more ultram for several days; then tried it again; with only 1 dose during the day, with 3.5 mg. of LDN that night!! had the same reaction, only on a lesser scale. but, extremely hard to hold eyes open!! each time, it felt as though i had taken an overdose of the pain killer, but i hadn't!! last night, i increased to the 4.5 mg. of transdermal cream/gel, with no ill effects at all! didn't take any pain medicine, as it was unnecessary!! hoping it stays that way!!

marshiris@...

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