Re: Nightly Pains

January 25, 2008

Ken,

My circadian rhythm was a bit different from what you described, but I had

all of those symtoms you mentioned, often like clockwork, other times suddenly.

I just want you to know that it does go away when you reach remission. All of

that is a distant memory for me. I've only been on AP 9 months, and things are

spectacular compared to 2 years ago and even 1 year ago. It does get better,

hang in there.

Emma

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January 25, 2008

I sure do get this... and I too believe in the circadian rhythm factor.

My timing is a bit different from yours.

My flare is usually highest about 5am. It's odd because I can wake at

3 am & won't feel the flare that I usually comes at 5-6am. I told this

to my rheumy doc & got a shoulder shrug - as if she hadn't heard this

before.

I also get the freezing bit that you're talking about, & mine don't seem

to synchronize with the flares. It's a deep inside ICY feeling. I

usually feel it about 7-8ish AM. Then sometimes again about 10ish.

Do you ever take your temperature? I used to do that & I tend to run

about 95 to low 96 degrees. I had thought this coldness was related to

hypothyroid, but now I think it's more than that. Perhaps it's the

hypothalamus (?) as that controls body temperature: 1)

http://www.wayfinding.net/hypothal.htm 2)

http://health.howstuffworks.com/question45.htm

Amy

Ken wrote:

>

> The Circadian Rhythm of Rheumatoid Arthritis

>

> It seems with most of us, RAers, that the pain and joint stiff are at

> their height between 2 and 4 am. In this recent flair, I , like the

> protagonist in " The Amityville Horror " , wake up at 2 am every night

> with severe pain and stiffness in most joints. I usually, with great

> difficulty, hobble to the toilet, like an extra from " The Robe " and by

> the time I get back into my bunk, I am shivering and shaking and

> freezing, like the African explorer, Mungo Park, in the swamps of the

> Gambia.

>

> My Question is: Does anything else suffer this nightly terror of

> shivering and feeling very cold when in a flair? Please let me know.

>

> Ken.

>

January 25, 2008

It's weird how that pressure affects me. I hope you're doing better.

Have you tried AP? Did AP change anything for you?

Amy

O' Conchubair wrote:

>

> The evening of the day after Hurricane Fran, Sept. 6, 1996, I felt I

> had turned to ice, had chills, and pain to the point I almost called

> for the EMTs. I have always blamed it on the plunging of the

> barometric pressure.

> I was diagnosed with severe aggressive RA in 1988, which I had since 1983.

>

January 25, 2008

aww YES indeed,, i have frond the ONLY way to get around that in the middle of the night flare...is 10 mg oxy in am and 12 hours later another 10 mg oxy,,i did that for 1.5 yrs and it allowed me past that point of middle of the night freezing and pain in elbows and feet so bad - but then it kinda wore off and i stopped taking oxy,its too expensive anyhow. i do without now and Im freeeezing alll the time,,even when others are in short sleeves,, i awake to that pain and cold every morning now - debi m.(Ra 5-6 yrs) Ken <maputo95@...> wrote: The Circadian Rhythm of Rheumatoid ArthritisIt seems with most of us, RAers, that the pain and joint stiff are attheir height between 2 and 4 am. In this recent flair, I , like theprotagonist in "The Amityville Horror", wake up at 2 am every nightwith severe pain and stiffness in most joints. I usually, with greatdifficulty, hobble to the toilet, like an extra from "The Robe" and bythe time I get back into my bunk, I am shivering and shaking andfreezing, like the African explorer, Mungo Park, in the swamps of theGambia.My Question is: Does anything else suffer this nightly terror ofshivering and feeling very cold when in a flair? Please let me know.Ken.

January 25, 2008

Dear Debi Thank you for your identification but what is 'oxy' short for? AT what times are 'am' and 12 hours later. I hope you are having a good day. ken.Debra Maddox <debramaddox@...> wrote: aww YES indeed,, i have frond the ONLY way to get around that in the middle of the night flare...is 10 mg oxy in am and 12 hours later another 10 mg oxy,,i did that for 1.5 yrs and it allowed me past that point of middle of the night freezing and pain in elbows and

feet so bad - but then it kinda wore off and i stopped taking oxy,its too expensive anyhow. i do without now and Im freeeezing alll the time,,even when others are in short sleeves,, i awake to that pain and cold every morning now - debi m.(Ra 5-6 yrs) Ken <maputo95 > wrote: The Circadian Rhythm of Rheumatoid ArthritisIt seems with most of us, RAers, that the pain and joint stiff are attheir height between 2 and 4 am. In this recent flair, I , like theprotagonist in "The Amityville Horror", wake up at 2 am every nightwith severe pain and stiffness in most joints. I usually, with greatdifficulty, hobble to the toilet, like an extra from "The Robe" and bythe time I get back into my bunk, I am shivering and shaking

andfreezing, like the African explorer, Mungo Park, in the swamps of theGambia.My Question is: Does anything else suffer this nightly terror ofshivering and feeling very cold when in a flair? Please let me know.Ken.

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January 25, 2008

Dear Ken- It is below zero here in maine. My apartment is freezing as well. I use a heating pad and it helps alot. Use a foam mattress pad 2-4 inches thick on the bed, a firm foam pillow for your head, comfy flat pillow for between your knees and build up your pillow so your neck is supported to the maximum, so shoulders dont carry the weight of your spine. For pain in the nighttime, ibuprofen and a tiny bit of darvocet will help. I also highly recommend Soma which is a muscle relaxant in a small dose for starters and a small amount of valium or ativan for sleep. I use oxazepam. It will knock you out and you will sleep through the night. I would also get a sleep machine with white noise to help if there is back ground noise that keeps you awake.. Eliminating pain at night will help you sleep through it. Get a heated mattress pad or a heating pad and keep it on low under the covers. Talk to your doctor about combining low dose prednisone (2mg pm) with two 800mg ibuprofen (proffessional strength) and darvocet with a low dose oxazepam (15mg) lowest dose. I would buy a portable urinal like hospitals do so you dont have to get out of bed in the first place. Just keep a nightlight on so you can see what you are doing. LOL. Hugs, Deborah P.S. Dont forget to ask about a biologic like Remicade or at least cyclosporine.

On Jan 25, 2008 6:32 PM, Ken <maputo95@...> wrote:

The Circadian Rhythm of Rheumatoid ArthritisIt seems with most of us, RAers, that the pain and joint stiff are attheir height between 2 and 4 am. In this recent flair, I , like theprotagonist in " The Amityville Horror " , wake up at 2 am every night

with severe pain and stiffness in most joints. I usually, with greatdifficulty, hobble to the toilet, like an extra from " The Robe " and bythe time I get back into my bunk, I am shivering and shaking and

freezing, like the African explorer, Mungo Park, in the swamps of theGambia.My Question is: Does anything else suffer this nightly terror ofshivering and feeling very cold when in a flair? Please let me know.

Ken.

January 26, 2008

Hi Amy

AP worked great for me for 3 years but has seemed to stop doing so. I know

this sometime happens with many DMARDs, I am just worried that damage will

progress unless I tone down my immune system.

Ken.

Amy <Evanesce@...> wrote:

It's weird how that pressure affects me. I hope you're doing better.

Have you tried AP? Did AP change anything for you?

Amy

O' Conchubair wrote:

>

> The evening of the day after Hurricane Fran, Sept. 6, 1996, I felt I

> had turned to ice, had chills, and pain to the point I almost called

> for the EMTs. I have always blamed it on the plunging of the

> barometric pressure.

> I was diagnosed with severe aggressive RA in 1988, which I had since 1983.

>

January 26, 2008

>

> > The Circadian Rhythm of Rheumatoid Arthritis

> >

> > It seems with most of us, RAers, that the pain and joint stiff

are at

> > their height between 2 and 4 am. In this recent flair, I , like

the

> > protagonist in " The Amityville Horror " , wake up at 2 am every

night

> > with severe pain and stiffness in most joints. I usually, with

great

> > difficulty, hobble to the toilet, like an extra from " The Robe "

and by

> > the time I get back into my bunk, I am shivering and shaking and

> > freezing, like the African explorer, Mungo Park, in the swamps

of the

> > Gambia.

> >

> > My Question is: Does anything else suffer this nightly terror of

> > shivering and feeling very cold when in a flair? Please let me

know.

> >

> > Ken.

> >

> > I was using Ambien, this kept me asleep through the night. It

worked very good, except I walked in my sleep. On different occasions

I ate with my children, but was sound asleep. They thought I was

awake. They took me to bed, when they realized I was asleep. One

morning my husband came to wake me, I was fully dressed with a

jacket on, ready for church. I had dressed and climed back into bed

fully dressed under cover. I go get into bed as soon as I take the

pill, this helps on sleep walking.

I use an electric blanket year round. I keep in around 7 or 8 on my

control. I have neuropathy also, the heat does wonders for it.

I hope everyone starts to feeling better.

God Bless

Jo Nell

> >

>

January 26, 2008

....I'm just curious if you're on only zithromax or something else as

well. Thanks,

Judy

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January 26, 2008

Ken... I have been on AP since 2001. Every once in a while I will come out

of remission and have always gotten back on the following protocol.

I use only Minocin pellatized. Global now makes one that is

pellatized (time release) that is generic. I take it at night before bed three

days a

week Monday, Wednesday and friday. This is just one minocin 100 mg. When I

think I am coming out of remission I up the minocin to 100 mg twice a day

everyday. Just one when I get up.... and one at night. Since this will

certainly stir things up ....(mycoplasmas go bonkers)... I am always pleased

when I

seem to get a bit worse. That means the meds are doing battle with the

infection and winning. Usually I will have a flair every six months or so, but

as time passes I notice they get fewer and farther apart, and the episodes are

much lighter in discomfort. I have not had a really bad flair in a couple

of years. Persistance and determination have kept the infection pretty quiet

and no joint damage has occurred since before 2001 when I first went on

Minocin.

Minocin should not lose its ability to work on the mycoplasmas ever.

They will not be able to become immune to it. They have no cell walls and

are simply destroyed by it. That does not mean they won't hide inside the

cell walls of healthy bone to avoid detection . That is why it takes years..and

a continuing use of minocin...to keep them dormant.

Recently I heard that Vanderbuilt hospital was doing studies using

minocin on MS...., because they found it had done so well on many with RA. In

the

future they may find that many chronic diseases are caused by infective

agents that we have somehow been exposed to.

Hoping you do better this year. Martha

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January 26, 2008

Just wanted to say that I have also had this problem - not at a

specific time, just at night whenever I was getting ready for bed.

I've been taking Zithromax for 3 months because I couldn't tolerate

the Mino anymore, and I'm starting to do a lot better. Swelling is

mostly gone, chills gone, and pain almost gone. I never post, but

I've been a part of this group for 8 years, and it has saved my

life. Thanks to all of you who share your experiences.

> >

> > The evening of the day after Hurricane Fran, Sept. 6, 1996, I

felt I

> > had turned to ice, had chills, and pain to the point I almost

called

> > for the EMTs. I have always blamed it on the plunging of the

> > barometric pressure.

> > I was diagnosed with severe aggressive RA in 1988, which I had

since 1983.

> >

January 26, 2008

Ken, check Section 13 of the FAQ on www.rheumatic.org.

Also, Dr. Lida Mattman, author of a textbook on stealth pathogens, says that

there may be times when the antibiotic you are using seemingly stops working

for you when in reality what has happened is that you've run into another

organisms that needs clearing with a different antibiotic or anti-fungal.

Once that organism is cleared, you can start back on the original antibiotic

and progress should resume.

Ethel

Re: rheumatic nightly pains

> Hi Amy

>

> AP worked great for me for 3 years but has seemed to stop doing so. I

> know this sometime happens with many DMARDs, I am just worried that damage

> will progress unless I tone down my immune system.

>

> Ken.

>

> Amy <Evanesce@...> wrote:

> It's weird how that pressure affects me. I hope you're doing

> better.

> Have you tried AP? Did AP change anything for you?

>

> Amy

>

> O' Conchubair wrote:

>>

>> The evening of the day after Hurricane Fran, Sept. 6, 1996, I felt I

>> had turned to ice, had chills, and pain to the point I almost called

>> for the EMTs. I have always blamed it on the plunging of the

>> barometric pressure.

>> I was diagnosed with severe aggressive RA in 1988, which I had since

>> 1983.

>>

January 26, 2008

I took Minocycline several years ago and achieved remission with it

for about 2 years. Then I had 2 children fairly close together so I

didn't take anything for awhile, and when I tried to take the Mino

again after the pregnancies for some reason I developed a

sensitivity to it. Now it makes me deathly ill and I cannot take it.

SO, for my long answer to your short question, through this group I

discovered that some people were taking Zithromax, and I felt like

it might work for me, so I tried it. I found a GP who would write

me a prescription for exactly what I wanted. I take 125mg (half a

pill) MWF, and that's it, except for probiotics and fish oil. I've

been doing that since November. I was also taking a Motrin once a

day, but have since stopped because I don't need it anymore. It

seems to be working for me. A couple of months ago my husband had

to help me into bed every night, and the pain was so bad I would

just lay there shaking. I'm 36 years old and I have 5 kids, 9

months to 11 years old, so I'm pretty determined to live my life the

best I can. Sorry to go on so long!!

>

> ....I'm just curious if you're on only zithromax or

something else as

> well. Thanks,

> Judy

>

> **************Biggest Grammy Award surprises of all time on AOL

Music.

> (http://music.aol.com/grammys/pictures/never-won-a-grammy?

NCID=aolcmp003000000025

> 48)

>

January 26, 2008

Jill Street- I saw your post about how you became sensitive to minocycline.

I've been on it for 11 months. I started out at 100 mg 2x per day and now I'm

only able to tolerate 25 mg 1 x per week. The three days after taking mino I'm

a mess and then I start to pull out of it.

Could you tell me what your symptoms were while you were having sensitivity to

it. I can't tell if this is just extreme herxing or a sensitivity. My entire

body hurts the days following when I take mino, every joint, and sometimes I get

chills and low grade fever, I feel like I'm in cement.

Thanks!

--

Angelia

angeliam88@...<mailto:angeliam88@...>

rheumatic Re: nightly pains