Re: Hi again list - more adventures in Rhemuy land, cottage cheese and the hots?????

[Guest guest]

Hi OKD:

I am glad to read that the Enbrel is starting to work for you. I know

you are still in pain, and I hope that subsides in the near future.

I have never associated any foods with my RA flares. I also don't know

if cottage cheese is an aggrivant or not. It will be interesting to see

what our members have to say.

I know you have been in lots of pain for a long time, and I hope that

changes soon for you.

Wishing you many pain free days ahead. Take care of yourself, and rest

as much as you can. It does help.

Hugs,

Barbara

--- In , " cofade_2000 " <Cofade_2000@...>

wrote:

>

> Hi everyone:

>

> I havent written lately, just been reading, been feeling blech lately.

Started Enbrel one month ago, dropped prednisone, kept the MTX (6 pills

a week), and upped the pain patch to 50. I gotta say that the hot flares

are not bothering me so much. I only am getting inflammed in my ankles

and back of neck and fingers, the stiffness in the AM and when I am

still remains (I cant shake that) but I never know still how i am going

to wake up. Everyday is a Rheumy adventure. If I take off the pain patch

a day later, I regret it (like today), so I have learned no pain, put a

smaller dose one on...

>

> So last night I had a craving for cottage cheese (oh yeah, I lost my

apetite which is good for me, because i am too fat) so i got one. About

an hour after I ate it I got the worst hot flare i had in recent memory.

I literally had to take ice packs and place it all over my body to the

point where I should have been freezing, and I wasnt. I couldnt shake

the flare until 2AM then I finally went to sleep and then i kept waking

up. Today my neck is killing me.

>

> I hate the hot flares worse than anything, today I still feel the heat

in my body. It has been in the 90's weather-wise and the humidity is

stiffling also....

>

> Could the cottage cheese be a trigger? I am laying off the nightshades

a lot more, I though THOSE were triggers?

>

> Please advise, me being able to read here has been a godsend.

>

> Thanks

>

> OKD

>

[Guest guest]

Do you have disc degenerative disease? I have terrible pain in my neck,

and that is my problem. I take flexeril for it, and it helps me a lot.

It sounds like your doctor has you on a good plan of meds, I hope they

continue to make you feel better. I know it's hard dealing with the

diease 24/7.

I'm not sure if cottage cheese would put you in a flare. I eat cottage

cheese quite often, and I never have a problem. You just never know,

were all different.

I am sending wishes for you to feel better soon,

Tawny

--- In , " cofade_2000 " <Cofade_2000@...>

wrote:

>

> Hi everyone:

>

> I havent written lately, just been reading, been feeling blech lately.

Started Enbrel one month ago, dropped prednisone, kept the MTX (6 pills

a week), and upped the pain patch to 50. I gotta say that the hot flares

are not bothering me so much. I only am getting inflammed in my ankles

and back of neck and fingers, the stiffness in the AM and when I am

still remains (I cant shake that) but I never know still how i am going

to wake up. Everyday is a Rheumy adventure. If I take off the pain patch

a day later, I regret it (like today), so I have learned no pain, put a

smaller dose one on...

>

> So last night I had a craving for cottage cheese (oh yeah, I lost my

apetite which is good for me, because i am too fat) so i got one. About

an hour after I ate it I got the worst hot flare i had in recent memory.

I literally had to take ice packs and place it all over my body to the

point where I should have been freezing, and I wasnt. I couldnt shake

the flare until 2AM then I finally went to sleep and then i kept waking

up. Today my neck is killing me.

>

> I hate the hot flares worse than anything, today I still feel the heat

in my body. It has been in the 90's weather-wise and the humidity is

stiffling also....

>

> Could the cottage cheese be a trigger? I am laying off the nightshades

a lot more, I though THOSE were triggers?

>

> Please advise, me being able to read here has been a godsend.

>

> Thanks

>

> OKD

>

[Guest guest]

Hi OKD! Good to hear from you again, but so sorry to hear you aren't feeling

well. I don't know what the association between the cottage cheese and your hot

flare is. Was the cottage cheese plain or did you have fruit in it? I think

what triggers our RA is going to be a trial and error type of thing. You know -

if you eat this and feel like that, then you probably shouldn't eat that. Pizza

has been affecting me negatively lately which is a MAJOR bummer because it is my

favorite food. I don't know if its the tomato sauce or the yeast in the dough

because I do have an allergy to yeast. <sigh> Trial and error - that's about all

we can do.

I don't know if any of us can totally get away from the AM stiffness. I think it

just comes in varying degrees depending on the activity levels of the RA.

Praying this finds you feeling better today.....Doreen

Hi everyone:

I havent written lately, just been reading, been feeling blech lately. Started

Enbrel one month ago, dropped prednisone, kept the MTX (6 pills a week), and

upped the pain patch to 50. I gotta say that the hot flares are not bothering

me so much. I only am getting inflammed in my ankles and back of neck and

fingers, the stiffness in the AM and when I am still remains (I cant shake that)

but I never know still how i am going to wake up. Everyday is a Rheumy

adventure. If I take off the pain patch a day later, I regret it (like today),

so I have learned no pain, put a smaller dose one on...

So last night I had a craving for cottage cheese (oh yeah, I lost my apetite

which is good for me, because i am too fat) so i got one. About an hour after

I ate it I got the worst hot flare i had in recent memory. I literally had to

take ice packs and place it all over my body to the point where I should have

been freezing, and I wasnt. I couldnt shake the flare until 2AM then I finally

went to sleep and then i kept waking up. Today my neck is killing me.

I hate the hot flares worse than anything, today I still feel the heat in my

body. It has been in the 90's weather-wise and the humidity is stiffling

also....

Could the cottage cheese be a trigger? I am laying off the nightshades a lot

more, I though THOSE were triggers?

Please advise, me being able to read here has been a godsend.

Thanks

OKD

[Guest guest]

Hi, OKD. Nice to hear from you.

Sorry that you haven't been feeling well lately and about your flare.

It's hard to say if it was the cottage cheese or just a coincidence.

Not an MD

On Thu, Aug 13, 2009 at 10:32 AM, cofade_2000<Cofade_2000@...> wrote:

> Hi everyone:

>

> I havent written lately, just been reading, been feeling blech lately.

 Started Enbrel one month ago, dropped prednisone, kept the MTX (6 pills a

week), and upped the pain patch to 50.  I gotta say that the hot flares are not

bothering me so much.  I only am getting inflammed in my ankles and back of neck

and fingers, the stiffness in the AM and when I am still remains (I cant shake

that) but I never know still how i am going to wake up.  Everyday is a Rheumy

adventure.  If I take off the pain patch a day later, I regret it (like today),

so I have learned no pain, put a smaller dose one on...

>

> So last night I had a craving for cottage cheese (oh yeah, I lost my apetite

which is good for me, because i am too fat) so i got one.   About an hour after

I ate it I got the worst hot flare i had in recent memory. I literally had to

take ice packs and place it all over my body to the point where I should have

been freezing, and I wasnt.  I couldnt shake the flare until 2AM then I finally

went to sleep and then i kept waking up.  Today my neck is killing me.

>

> I hate the hot flares worse than anything, today I still feel the heat in my

body.  It has been in the 90's weather-wise and the humidity is stiffling

also....

>

> Could the cottage cheese be a trigger?  I am laying off the nightshades a lot

more, I though THOSE were triggers?

>

> Please advise, me being able to read here has been a godsend.

>

> Thanks

>

> OKD

[Guest guest]

Hi Mimi and and Group:

It might be just pure coincidence, because reading all these posts on the

weather, I live in NYC and it has been ungodly humid, rainy and it got very hot

for a few days. My A/C broke in the living room (thank the lord I have one in

the bedroom), so we are using this high powered fan, but of course, there is a

big difference in blowing around hit air.

I have been on the Enbrel for a month now (plus MTX and Leucovin). I notice I

have less swelling, and infrequent flares, but when the hots do arrive, they are

murder and the stiffies remain. Plus, I get WEIRD things that happen to me,

like last night, I had the worst case of trapped gas in my chest and back, I

felt like I was gonna have a heart attack, it was really stuck in my chest and

back, I felt it, I drank warm chamomile tea (still feeling the hot flares, that

was fun), I walked, I took shower, finally. my husband (after hours of

suffering) began to cup me with his hands and hit my back all over, for about 5

minutes and then I felt better and was able to bring it up (that was a first for

me I actually turned grey from the pain of it), I wonder if one of the meds all

of a sudden did that to me, because i hadnt eaten anything suspect, I didnt eat

much yesterday at all. My ehart is fine by the way, so I know what it wasnt.

Then sometimes, I get so tired, I cant get up at all, I mean ALL DAY I will

sleep and get up tired still (it makes no sense to me that you rest 12-14 hours

and you are still tired, and cant shake it).

Anyways, during the hots I feel like jumping out of my body, not even a cold

shower, or being in the freezing A/C works, even ice packs, drinking water

doesnt work. What more can we do than all that?

I get so blue sometimes, because my mind says ok girl lets jump up and GO, and

my body says NO! I try to fight past it, to ignore it, to do my walking

anyways, but it hurts alot, even with the pain patches. Like today, I have, of

course, to work, but I also have errands that need to be run, within my

neighborhood, so this AM, I get up early, my brain is raring to go, body stiff,

but I walk my dog fast as I could (to sweat a little), take my shower, I am

feeling ok, pretty good as a matter of a fact. I step outside and BOOM my knee

and heel start hurting and I limp all the way to work (go figure).

Trying to keep my sense of humor (maybe I should get a 'wilson' stan - L0L:))

OKD

[Guest guest]

OKD, your description of your hot flares sound exactly like what started

happening to me years ago if I had anything with alcohol in it to drink. The

last time I attempted any kind of alcoholic drink was about 8+ years ago, it was

winter time and temps were in the 30's. I got one of those hot flares you

describe and was sitting outside by the pool barefoot in only shorts and a

sleeveless shirt and I was STILL sweating! I couldn't cool off - it was so

horrible!! So, I don't drink at all any more - we shouldn't with our RA meds

anyway. Not that I'm saying you drink - just that your hot flares were just like

when I did.

Plan out those spoons, OKD. You might be shooting yourself in the foot by

walking your dog fast - you're using too many spoons at once. Take it easy - be

kind to yourself. Hang in there.....Doreen

Hi Mimi and and Group:

It might be just pure coincidence, because reading all these posts on the

weather, I live in NYC and it has been ungodly humid, rainy and it got very hot

for a few days. My A/C broke in the living room (thank the lord I have one in

the bedroom), so we are using this high powered fan, but of course, there is a

big difference in blowing around hit air.

I have been on the Enbrel for a month now (plus MTX and Leucovin). I notice I

have less swelling, and infrequent flares, but when the hots do arrive, they are

murder and the stiffies remain. Plus, I get WEIRD things that happen to me,

like last night, I had the worst case of trapped gas in my chest and back, I

felt like I was gonna have a heart attack, it was really stuck in my chest and

back, I felt it, I drank warm chamomile tea (still feeling the hot flares, that

was fun), I walked, I took shower, finally. my husband (after hours of

suffering) began to cup me with his hands and hit my back all over, for about 5

minutes and then I felt better and was able to bring it up (that was a first for

me I actually turned grey from the pain of it), I wonder if one of the meds all

of a sudden did that to me, because i hadnt eaten anything suspect, I didnt eat

much yesterday at all. My ehart is fine by the way, so I know what it wasnt.

Then sometimes, I get so tired, I cant get up at all, I mean ALL DAY I will

sleep and get up tired still (it makes no sense to me that you rest 12-14 hours

and you are still tired, and cant shake it).

Anyways, during the hots I feel like jumping out of my body, not even a cold

shower, or being in the freezing A/C works, even ice packs, drinking water

doesnt work. What more can we do than all that?

I get so blue sometimes, because my mind says ok girl lets jump up and GO, and

my body says NO! I try to fight past it, to ignore it, to do my walking

anyways, but it hurts alot, even with the pain patches. Like today, I have, of

course, to work, but I also have errands that need to be run, within my

neighborhood, so this AM, I get up early, my brain is raring to go, body stiff,

but I walk my dog fast as I could (to sweat a little), take my shower, I am

feeling ok, pretty good as a matter of a fact. I step outside and BOOM my knee

and heel start hurting and I limp all the way to work (go figure).

Trying to keep my sense of humor (maybe I should get a 'wilson' stan - L0L:))

OKD

[Guest guest]

Thanks for responding. No, I dont drink at all. I cant even remember the last

time I did, I think it might have been like 3 months ao I had a rum, ice, lemon,

basil, honey concotion, that come to think of it was DELISH - L0L:))

Yes, my spoon 'ran-ith " over on the power walking when I got up this morning

stiff as a board, plantar fascitis (which hasnt gone away in or ethan 7 months

now) flaring. It did tske me 15 minutes of walking slowly to un-bend, but I

didnt get above a slow walk. It is murder-hot here today, so I am staying

inside, MTX has me dopey and sleepy, and there are only 5 dwarfs left!

I feel the hots creeping up my back, doeesnt the Enbrel stop this eventually I

am on week 5. Do you guys think I need something else? More MTX do the trick?

OKD

[Guest guest]

Hi G:

I pretty much dropped dairy entirely and am using SOY Milk and Lactaid. I

hanent given up my beloved pecorino romano or cheddar chesse, but its much much

less now.

Maybe the sudden dairy did it to me. i am being vigiliant thanks. Still geting

over trying to give my tomatoes and potatoes. I haven been cokking with tomatoe

sauce all my life, or cherry tomatoes, i pretty much throw them into everything,

but not I am cutting down to maybe once a week, to see if it makes a diff.

Thanks

OKD

>

[Guest guest]

Hi OKD: I feel badly that you are having a bad time of it all. I went

through hell with that Plantar Fascitis. Have you gone to a foot dr.?

I did, and had 3 shots into my heel over a 3 week course. I also bought

2 different types of shoe inserts, which has made a big difference in my

feet. My RA was the worst in my feet and ankles, plus I have a large RA

nodule on the outside of my right arch. It took a few months before I

felt better. One pair of inserts is when my feet aren't bothering me,

and they are comfortable and make my feet feel good. The other pair is

made of Temper-Pur material, and make my feet feel like they are in

heaven.

Have you called your Rheumy about these problems? It might be a good

idea as he might be able to help you.

Wishing you pain free days ahead.

Hugs,

Barbara

--- In , " cofade_2000 " <Cofade_2000@...>

wrote:

>

> Thanks for responding. No, I dont drink at all. I cant even remember

the last time I did, I think it might have been like 3 months ao I had a

rum, ice, lemon, basil, honey concotion, that come to think of it was

DELISH - L0L:))

>

> Yes, my spoon 'ran-ith " over on the power walking when I got up this

morning stiff as a board, plantar fascitis (which hasnt gone away in or

ethan 7 months now) flaring. It did tske me 15 minutes of walking slowly

to un-bend, but I didnt get above a slow walk. It is murder-hot here

today, so I am staying inside, MTX has me dopey and sleepy, and there

are only 5 dwarfs left!

>

> I feel the hots creeping up my back, doeesnt the Enbrel stop this

eventually I am on week 5. Do you guys think I need something else? More

MTX do the trick?

>

>

> OKD

>

[Guest guest]

Plantar fascitis is so weird for me, it comes and goes like a thief in the nite.

I had it 3 yrs ago, had the shots (which hurt like hell but worked like a chrm),

I have the inserts in my shoes, but the RA has really exacerbated it. Ugh, it

hurts so bad.....Now it is mack eith a vegenace nd I DREAD the cortisone shots,

they HURT.....

THanks, your words are comforting....

OKD

[Guest guest]

OKD - you might want to ask your Rheumy about those " hots " . They sound so

uncomfortable. Did you have this before starting the Enbrel? There's got to be

something to make you more comfortable. Have you seen a podiatrist about your

plantar fascitis? I wonder if there's some kind of brace or wrapping or even

shoe that might help with that. My SIL had it and I know how painful it was for

her.

I know how you feel with the MTX - I become sleepy and dopey with it, too. Are

you taking the pills or injections? I do injections and sleepy and dopey are

only around for 1-1½ days compared to 3-4 with the pills. I guess that is

something else you could speak with your Rheumy about.

Wishing you pain free and " hots " free days.....Doreen in HOT FL

Thanks for responding. No, I dont drink at all. I cant even remember the last

time I did, I think it might have been like 3 months ao I had a rum, ice, lemon,

basil, honey concotion, that come to think of it was DELISH - L0L:))

Yes, my spoon 'ran-ith " over on the power walking when I got up this morning

stiff as a board, plantar fascitis (which hasnt gone away in or ethan 7 months

now) flaring. It did tske me 15 minutes of walking slowly to un-bend, but I

didnt get above a slow walk. It is murder-hot here today, so I am staying

inside, MTX has me dopey and sleepy, and there are only 5 dwarfs left!

I feel the hots creeping up my back, doeesnt the Enbrel stop this eventually I

am on week 5. Do you guys think I need something else? More MTX do the trick?

OKD