Re: fibromyalgia & LDN

May 7, 2004

I hope you have success using LDN for fibromyalgia. I hope your

compounding pharmacy is familiar with LDN. First off it is necessary for

it to have a fast release filler. If it is fast release and properly

compounded it should help.

B.

PS. I do not have fibromyalgia, I am another MSer.

Original Message:

-----------------

From: lilndot1 lilndot1@...

Date: Fri, 07 May 2004 15:31:46 -0000

low dose naltrexone

Subject: [low dose naltrexone] fibromyalgia & LDN

<tt>

Hi Everyone! I have been following the group now for about 6 weeks,

and I notice that almost everyone here has MS. I had requested some

info a couple times and recieved 0 responses, was very disapointed.

However, I have gotten all the info I needed from my good friend

Zillba. My Doc has agreed to let me try LDN for Fibromyalgia, which I

have had for nearly 20 years. My Doc really didn't need very much

convincing, even tho she was not familiar with the 'off label' use of

this drug. She asked around her clinic network and no one else there

knew much about it either. Never the less she agreed after a short

time to let me give it a shot. As luck would have it there is a

compounding Pharmacy in the small town that I live in. She called in

my Rx yesterday, and I took my 1st 3mg dose last night. I wish that

you all could have such an easy time as I did persuading your doctors

to let you try this. So far I just woke up with a 'mild' headache

which is not unusual in any case, so I don't know if it is LDN

related. I am soooo excited to see if this works for FMS. In all the

years since I was Dx nothing has brought much relief from the many

symptoms. I can't wait to see if this works for me. Is there anyone

out there that has been using LDN for FMS? I would love to compare

notes! Many blessings, Lil

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May 8, 2004

That's not true! I responded, but the moderator thought I was new and

replaced the subject which you wrote in with " Hey, I'm a Newbie "

which I am not. I have had fibromyalgia for almost my whole life--I'm

62 years old. 10 months ago, I got chronic EBV, and that is the main

reason why I am taking LDN, and on this list. I have been on LDN now

for 11 days now, and have noticed a decrease in muscle pain, except

for the first few days on 4.5 mg when I had bad muscle tightness, but

I've been on 3 mg now for 5 days, and feeling a bit better. Hang in

there. I also have IBS and chronic pain from a spinal cord injury, so

I have several things wrong with me that LDN can help. God bless. E-

mail me privately if you want.--ette from

CA

> Hi Everyone! I have been following the group now for about 6 weeks,

> and I notice that almost everyone here has MS. I had requested some

> info a couple times and recieved 0 responses, was very disapointed.

> However, I have gotten all the info I needed from my good friend

> Zillba. My Doc has agreed to let me try LDN for Fibromyalgia, which

I

> have had for nearly 20 years. My Doc really didn't need very much

> convincing, even tho she was not familiar with the 'off label' use

of

> this drug. She asked around her clinic network and no one else

there

> knew much about it either. Never the less she agreed after a short

> time to let me give it a shot. As luck would have it there is a

> compounding Pharmacy in the small town that I live in. She called

in

> my Rx yesterday, and I took my 1st 3mg dose last night. I wish that

> you all could have such an easy time as I did persuading your

doctors

> to let you try this. So far I just woke up with a 'mild' headache

> which is not unusual in any case, so I don't know if it is LDN

> related. I am soooo excited to see if this works for FMS. In all

the

> years since I was Dx nothing has brought much relief from the many

> symptoms. I can't wait to see if this works for me. Is there

anyone

> out there that has been using LDN for FMS? I would love to compare

> notes! Many blessings, Lil

May 8, 2004

Hi, those of you with fibromyalgia that are taking LDN. I am very

interested in your progress as our daughter has suffered from it much of

her life. My husband is trying to get it for his MS but it would be

wonderful if it would work for our daughter too, if we can get someone to

prescribe it for us!!!

Hope it works for you, Lil. I know how much my daughter suffers, that's

terrible that you've had to endure it for 20 years!

God bless,

Terria

Oregon, USA

My Doc has agreed to let me try LDN for Fibromyalgia,

> which

> I

> > have had for nearly 20 years. My Doc really didn't need very much

> > convincing, even tho she was not familiar with the 'off label' use

>

> of

> > this drug. She asked around her clinic network and no one else

> > years since I was Dx nothing has brought much relief from the many

>

> > symptoms. I can't wait to see if this works for me. Is there

> anyone

> > out there that has been using LDN for FMS? I would love to compare

>

> > notes! Many blessings, Lil

>

May 8, 2004

Heaven knows I am not shy, and I would have responded if I had any thing much to tell you. Yes my wife tried ldn. for what we "think" were fms symptoms but unlike me with my m.s. she had no immediate results. So I felt it was best not to say anything as she maybe has something other than Fibro.

She definetly has degenerative osteoarthritis and so far is realy enjoying the relief that shark cartilage extract is providing. It doesn't seem to work for me though.

I don't have any trouble getting a prescription for ldn but then I have known my G.P. for about twenty years both as a Dr. and also as a friend. This may make a large difference in how fast you can get a prescription, but we also have a compouding pharmacist in the nearest city and his say pulls a lot of wieght with my Dr.

Congrtulations on taking control of your life.

Reg.

050804 14:53hrs

-------Original Message-------

From: low dose naltrexone

Date: 05/08/04 14:20:09

low dose naltrexone

Subject: [low dose naltrexone] Re: fibromyalgia & LDN

That's not true! I responded, but the moderator thought I was new and replaced the subject which you wrote in with "Hey, I'm a Newbie" which I am not. I have had fibromyalgia for almost my whole life--I'm 62 years old. 10 months ago, I got chronic EBV, and that is the main reason why I am taking LDN, and on this list. I have been on LDN now for 11 days now, and have noticed a decrease in muscle pain, except for the first few days on 4.5 mg when I had bad muscle tightness, but I've been on 3 mg now for 5 days, and feeling a bit better. Hang in there. I also have IBS and chronic pain from a spinal cord injury, so I have several things wrong with me that LDN can help. God bless. E-mail me privately if you want.--ette from CA > Hi Everyone! I have been following the group now for about 6 weeks, > and I notice that almost everyone here has MS. I had requested some > info a couple times and recieved 0 responses, was very disapointed. > However, I have gotten all the info I needed from my good friend > Zillba. My Doc has agreed to let me try LDN for Fibromyalgia, which I > have had for nearly 20 years. My Doc really didn't need very much > convincing, even tho she was not familiar with the 'off label' use of > this drug. She asked around her clinic network and no one else there > knew much about it either. Never the less she agreed after a short > time to let me give it a shot. As luck would have it there is a > compounding Pharmacy in the small town that I live in. She called in > my Rx yesterday, and I took my 1st 3mg dose last night. I wish that > you all could have such an easy time as I did persuading your doctors > to let you try this. So far I just woke up with a 'mild' headache > which is not unusual in any case, so I don't know if it is LDN > related. I am soooo excited to see if this works for FMS. In all the > years since I was Dx nothing has brought much relief from the many > symptoms. I can't wait to see if this works for me. Is there anyone > out there that has been using LDN for FMS? I would love to compare > notes! Many blessings, Lil

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May 13, 2004

MAYBE MOST OF THE PEOPLE IN THIS GROUP HAVE MS. I BEING ONE AND ENJOY THIS GROUP OF PEOPLE IF SOMETHING DOESN'T PERTAIN TO ME I JUST DELETE. HOPE YOU FIND YOUR ANSWERS.

May 13, 2004

Lil, I hesitated to reply to your post because I do happen to have

MS and not Fibromyalgia, and you seemed rather testy about MSers.

But since I do have a couple of comments on what you said in regards

to LDN, I decided to go ahead and reply. I am guessing that although

MS and Fibromyalgia are different, some of the side-effects of

taking LDN are probably similar - so here goes.

I too had headaches in the first few days on 3.0 but they did go

away, and did not return. That is until after a month when I decided

I wanted to try 4.5 (for additional symptom relief) and again, with

the new higher dose am experiencing the same headache. It has only

been one day, and I expect that in a day or so it will go away. I am

also noticing that this second time around, it's milder.

I take my dose at 9:00 - 9:15 p.m., and I wake up every night

between 12 - and 12:30 a.m. like clockwork. I don't notice any hot

flash, and return to sleep immediately, but have been wonderning

about the nightly wake up.

I do not know if you can expect additional improvement, but

sincerely hope you do and that someone with fibromyalgia replys to

your post.

Cinders

May 13, 2004

For Lil, Dr. B feels that 4.5 mg is the magic # for HIV, Cancer, and many other diseases. MSers must be tweaked because of stiffness. If you do not have the stiffness, I would try the 4.5mgs . You can pour half of one capsule out and take one and a half capsules. This can be done to see if you get stiff . If after 3 days you are not stiff, stick with it and renew script. This is what he told me when he upped my dose. I do have MS not Fibro.

Hot Flashes...yes, and night sweats.... If they are due to menopause, evening primrose oil(capsules) and B vit. put an end to mine. Can begin up to 10 yrs before menopause.

I agree that this is an LDN info site and can turn people off if the chit chat gets in the way.

In the beginning it was very informative and less repetative because a bunch of us started LDN at the same time. We had an agreement to stick to the task at hand and to direct chit chat to the person directly and not to the group.

If we can get back on track or join Larry's chat room it would benefit more people and more diseases. I know there is a delete button we are afraid we will miss something of importance. I know many old-timers dropped out because of the many postings,and their input is needed. Just my 2cents.

May 14, 2004

Hi Lil,

I had been having a few menopausal hot flashes, but mostly in the daytime.

After a short time on LDN I started having nasty hot flashes intermittently

throughout the night as well. My doctor suggested a low dose of Effexor,

which did help, but it also caused me to be depressed ( depression from an

anti- depressant, well, what can I say ), and caused a return of bladder

problems. So I quit taking it and started taking 2000 mg of evening

primrose oil each morning and evening. No more hot flashes, day or night!

I missed the primrose oil one morning, and was having mild hot flashes by

bedtime.

I don't know if it would help you or not, but is sure worth a try!

(another MSer...)

Also, I have been waking up at 12:30 with what I

> think is a " hot flash " but very intense. (taking the LDN around

> 9:00pm)I'm wondering if anyone else has had these " flashes "

> or " flushes " or whatever they are? Do they go away? Can I expect

> continued improvement as time goes by? Also, for those with

> headaches, I had bad headaches the first 4 days, but now they seem to

> have gone. Anyone have any thoughts on any of this? Thanks, Lil

>

May 16, 2004

Hi Lil,

I don't think it's because people are only interested in MS, more the fact that a lot less is known or experienced with ldn and fibromyalgia. I don't think there is many people at all trying ldn for fibro and it is very early days. It's great that you are experiencing some relief. Really with dosage everyone is different, all you can do is try 4.5 for a couple of weeks and see.

You don't say how old you are so could the hot flushes be menopause? A lot of women on ldn for MS, me included, have said possibly it's an MS thing, who knows. I have heard Sepia - Homeopathic - works well. I just recently had sent over from America a native remedy called Mellow Pause and it certainly seems to be working for me. They have a toll free no. 1-877-289-1235 or their website is www.nativeremedies.com They have all sorts of stuff including and immune system booster. All the best with trying ldn and please keep everyone updated, as I'm sure it will help others.

Best wishes from Australia

-------Original Message-------

From: low dose naltrexone

Date: 05/14/04 02:13:13

low dose naltrexone

Subject: [low dose naltrexone] fibromyalgia & LDN

I thought this group was for everyone that is interested in LDN for

various medical conditions. One of my best friends in the world has

MS and so I am QUITE insterested in that. However, I have

Fibromyalgia, and had to post several times in the begining to get

even one response. I did eventually get several, but nowhere near the

numbers of posts re: Dating w/MS. As it happens, I have daily

questions re: LDN, but have become somewhat discouraged at getting

answers from this group as it seems that most of the members really

don't have input for anyone that dosen't have MS. (A few exceptions!)

I have been on 3 mg LDN for just 6 days. Have noticed a great

improvement in my energy level and pain levels. I'm wondering if I

will need to go to 4.5mg eventually or do you stay with 3mg if that

is working well. Also, I have been waking up at 12:30 with what I

think is a "hot flash" but very intense. (taking the LDN around

9:00pm)I'm wondering if anyone else has had these "flashes"

or "flushes" or whatever they are? Do they go away? Can I expect

continued improvement as time goes by? Also, for those with

headaches, I had bad headaches the first 4 days, but now they seem to

have gone. Anyone have any thoughts on any of this? Thanks, Lil

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