a question

[Guest guest]

Hi Kiana,

Anything you read here is available, but keep in mind, none of us are

experts....we can only share our experiences. Anything you read here or

elsewhere on the net must be considered suspect.

Best to you,\

Marta

>From: Kiana Rossi <bornfree@...>

>

>Are posts copyrighted? Can I print off what someone says and show it to my

>doctor?

>

>Thank you, oh I gues that was 2 questions.

>

>

[Guest guest]

Hi

I guess PA has a mind of its own. I have great pain-free days and other

times the pain could last for a week. The idea is not to let it get to you

because I find that if I ponder over it too much I suffer more. I find that

moving and not remaining still for too long helps. Warm soaks in a tub with

some chamomile and lavender also helps.

Good luck

Soraya

[Guest guest]

Hello ,

Well, to be honest I don't think any of us knows what normal is in PA. We all

have good days and bad days. Yesterday I felt great and every joint worked, but

today both hands hurt and are swollen. Typing is tough and I make a lot of

mistakes. So hang in there. BUT on the plus side my feet aren't swollen and

hurting.

I've had psoriasis since 1976 and the arthritis was diagnosed about five years

ago. Some days I feel like taking the whole world on and others I feel like the

world beat me up during the night. I figure if I'm able to move on my own, then

I'm okay. We have to keep moving to even stay moving.

Do all that you can do, let your body tell you how much you can do. I clean a

little, sit and rest, do a little more, sit and rest. You have to learn to read

your body's signals. It is a daily surprise as to what I get to do. Ha Try to

stay positive in your thinking. Stress only makes it worse. I don't think I'm

much help here, but remember you are not alone in this any more...we are your

friends, sounding board, and support group. Plus some of us are walking books of

knowledge.

I've got black raspberries in the frig waiting to become jam...well maybe/maybe

not...depending on if my hands let up or not. PA just kind of takes over your

life. I try not to dwell on it...I just get up see what the body says for the

day and roll with it. That doesn't mean I don't have days of depression...I

do...we're allowed. It's when you become comfortable on the downside that isn't

good. So hang in there, stiff upper lip and mush on my friend, time's awastin'.

Donna

[Guest guest]

[ ] a question

A question for all of you who have been dealing withPA a lot longer than I have. In the short time that I've had PA (two months or sosince the first symptoms), I've noticed that my painis VERY variable. Just to give one example, oneminute (one hour anyway) my thumbs are so stiff andswollen that I can't hold a glass, and the nextthere's only a slight ache. It's like one day I feellike a 75 year old man who's just been beaten with abaseball bat, and I'd do anything to stop the pain,and the next day I feel almost completely normalexcept that one of my toes is twice its normal size.My question is, is this "normal," if there even issuch a thing with PA? Is it maybe normal for theearly stages of the disease? Also, is there any realway to figure out what my long term prognosis is, i.e.will it just be a nuisance in my life, or will iteventually cripple me?Any feedback would be greatly appreciated., Welcome to the group. I write for my husband who has the disease. He is not a computer weany like me and also his right hand is pretty much imobilized, fingers, wrist. We both read the emails that all of the group write together. From all the groups emails, I find that P and PA are very variable for each person. Some have it in a very severe form, my husband is one of those he never is totally out of pain some days worse than others. Other's seem to have other problems with skin complications. Waynes only P was on his scalp and the joint pain and scalp scales came on together. We never have seen a dermatologist as he washes his hair and we work the scale loose. I do reccomend that you get a doctor RA that you trust and who is up to date on the latest treatment for the disease. Also one who is willing to listen to your needs. If you get depressed find someone to talk to that understands. People who really care about you will be there for you. the rest don't matter. Sharon & Wayne Inman__________________________________________________

[Guest guest]

,

Normal for PA seems to be abnormal. I don't think anyone has the same

pattern of location, pain, flare and remission. I had my first real flare in

1981. It was almost all in the chest, toes and feet, put me in bed for a

while. Shots in the feet seemed to take care of the problem, although I now

think the PA just slowly went on its on course. In 1985-86 I again had

problems, and again the pain went away with various meds. Not really sure

that the drugs worked, but I did feel better after about 2 years. In 1995 I

started to feel bad all over, really hurting, chronic fatigue and pain that

just moved from one area of the body to another in a rather random manner. I

am now on disability. Various meds seem to work for a while, then the effect

seems to fade. I have been on MTX for three years or so, plus Celebrx and

Arava. The last two were added this year and other Meds dropped. The

fatigue is still there, but the intense pain has been reduced and the joints

do not appear to be getting any worse. For now that is like a remission for

me. I will be happy to take that. Bottom line is that what you read from

the group is the best you can get. PA changes for good and for bad. I

believe that you need doctors that understand that PA is PA not just

arthritis. You need meds to help with the pain and to try and halt or slow

down the joint degeneration. About 25 years ago I was also worried about

being a cripple, so far I have beat it back. It takes lots of help from

folks that care and you have to work at learning all you can to help yourself

understand what you are fighting. Truth is there are no easy answers.

[Guest guest]

I know exactly how you feel, but you know PA is very individual. I had an

absolutely terrible time for 2 months, about a month ago and I'm now almost

pain free. I am on a special diet, so maybe that's helping...I don't know.

However what I can say is some years I've been really bad some years I

haven't. A friend of mine had it for 15 years from the age of 15 and is

virtually in remission at present.....it's totally unpredictable!!!

Kate

[ ] a question

> A question for all of you who have been dealing with

> PA a lot longer than I have.

>

> In the short time that I've had PA (two months or so

> since the first symptoms), I've noticed that my pain

> is VERY variable. Just to give one example, one

> minute (one hour anyway) my thumbs are so stiff and

> swollen that I can't hold a glass, and the next

> there's only a slight ache. It's like one day I feel

> like a 75 year old man who's just been beaten with a

> baseball bat, and I'd do anything to stop the pain,

> and the next day I feel almost completely normal

> except that one of my toes is twice its normal size.

>

> My question is, is this " normal, " if there even is

> such a thing with PA? Is it maybe normal for the

> early stages of the disease? Also, is there any real

> way to figure out what my long term prognosis is, i.e.

> will it just be a nuisance in my life, or will it

> eventually cripple me?

>

> Any feedback would be greatly appreciated.

>

>

>

>

> __________________________________________________

>

[Guest guest]

Coleen-

Spirochetes.

They love the connective tissues /joints. The knees seem to be vulnerable as

well as the rib cage and sinus cavities. What alternative treatment are you

doing?

sue in nj

[Guest guest]

In a message dated 1/22/01 5:45:42 PM, NMcmu6937@... writes:

<< He

called me lard ass in the hospital because I was in excruciating pain and it

was soooo hard to get out of bed. >>

-

My mom and dad, ages 77 abd 76 respectively, BOTH had both knees replaced in

the last 2 yrs. Guess what? both had (and my mother still does) severe knee

pain. BOTH are infected with lyme, my dad has been bit many times since 1980.

So why are so many people having knee replacement surgery?? and what about

all the hip replacements???

makes one wonder what we are doing....

sue in nj

Give yourself time to heal. I am sorry for your pain.

sue in nj

[Guest guest]

> I was having knee problems and the arthroscopy showed the cartilage

to be

> almost all gone so had a knee replacement, only to have that knee be

> swollen, red, and painful the entire year and a half since. Now I

know it

> was and is lyme. I'm just surprised that my body didn't reject the

new

> knee. The dr has called me all sorts of names because of the pain

I've

> complained of. I am going to make an appt and tell him a thing or

two. He

> called me lard ass in the hospital because I was in excruciating

pain and it

> was soooo hard to get out of bed.

, wouldn't you like to make another appointment to see him, then

slap the taste right out of his mouth? I just can't believe how

insensitive some doctors can be. I've seen some that were just

wonderful, but this guy sounds like a loser.

Jim

[Guest guest]

Endless marvelling at the way women allow such things to be thrown at them

without lashing out at the offender (verbally if doing it physically likely

to get you into dire troubles). I always do. It makes my life even more

complicated as I have to bang a few doors, cross a few names out of my

diary, but nothing is as bad as allowing friends, family or doctors to abuse

you because they feel they can get away with it. Please, all you sick Lymies

out there, don't let them talk to you like you're less of a person just bec

THEY can't understand your problem. Become FIERCE, REBEL, GROWL at them,

show some teeth, they might try and write you off as a loony but I'm sure

they'll think of you when the next " mad " Lymie comes along.

Also, you UK Lymies, couldn't you organise to go and see the same infectious

disease doctor one after the other and see how many times he can say he's

never seen such a case of chronic lyme.

Nelly

Re: [ ] a Question

> I was having knee problems and the arthroscopy showed the cartilage to be

> almost all gone so had a knee replacement, only to have that knee be

> swollen, red, and painful the entire year and a half since. Now I know it

> was and is lyme. I'm just surprised that my body didn't reject the new

> knee. The dr has called me all sorts of names because of the pain I've

> complained of. I am going to make an appt and tell him a thing or two.

He

> called me lard ass in the hospital because I was in excruciating pain and

it

> was soooo hard to get out of bed. Compared me to a woman that was about

20

> years older who was walking about. Anyway....

>

>

>

> The human spirit is stronger than anything that can

> happen to it.

>

> C.

>

>

>

> HAPPY NEW YEAR!!!

>

> Easy Reference:

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> Archives can be accessed at lyme-aid

>

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> This is the primary chat site for .

>

>

>

[Guest guest]

,

You go girl! Let that sad excuse for a physician have it where it

really hurts! You are my hero today.

Carol Ann

[Guest guest]

Another suggestion to those that are having difficulties with drs.......

PRINT info about lyme, the facts (I have tons of references) and THEN face

these drs. Take a copy of the article of the boy whom was just awarded $1.7

million because a dr. wouldn't believe it was lyme. THAT should scare them.

TAKE FACTS!!!

sue in nj

[Guest guest]

-

Do you know Tom's story, he's from Bend, OR? What a sweetheart, what a

wonderful story (he was written up in your local newspapers/TV and all) I got

to know him because of the internet, we became friends. He was dxd with MS,

of course found out it was lyme. Wheelchair bound, now walking.

Sue in nj

What about the knee? what treatments are you doing? maybe I can help w/ some

suggestions.

[Guest guest]

I was having knee problems and the arthroscopy showed the cartilage to be

almost all gone so had a knee replacement, only to have that knee be

swollen, red, and painful the entire year and a half since. Now I know it

was and is lyme. I'm just surprised that my body didn't reject the new

knee. The dr has called me all sorts of names because of the pain I've

complained of. I am going to make an appt and tell him a thing or two. He

called me lard ass in the hospital because I was in excruciating pain and it

was soooo hard to get out of bed. Compared me to a woman that was about 20

years older who was walking about. Anyway....

The human spirit is stronger than anything that can

happen to it.

C.

[Guest guest]

Thanks, Sue. It's been a year and a half, and I still have a fat knee

that's hot. But there IS no lyme disease in Oregon, doncha know? HAHA

The human spirit is stronger than anything that can

happen to it.

C.

[Guest guest]

Sue,

I have not heard Toms's story. Is there some place that I could read about

it online?

As far as my knee goes, I'm not doing much of anything at this point. I

have exercises, but the ROM and strength are good. I try to get ice on it

at least when it's at its worst, elevate the leg, take NSAIDs. Do you have

anything else you would recommend?

The human spirit is stronger than anything that can

happen to it.

C.

[Guest guest]

Robbin

My daughter was having headaches from front toback and her ped. ordered a cat

scan to make sure everything was alright. What it ended up being for her was

a really bad sinus infection. Can't her regular ped order the cat scan

instead of waiting until the 14th?

Ywellen

[Guest guest]

Ywellen

the ped checks the sinuses everytime now and those were clear

and feb 9th she sees her again and she will order the CT scan

or sooner cause she told me if the headaches didnt stop with this med

to just bring her to the ER today the pain scale is 7 then 6

the med makes melissa loopy

as melissa said today she just wants the pain to stop in the head

and stop taking the med i can understand her point

Robbin

[Guest guest]

PLEASE check the headaches out

i am so fustrated right now melissa has been out of school for 9 days

and this headache is still there i have been in close contact with both her

pediatricain and the rhuemy and they keep bounceing it back and forth

we went from flexaril 2 times a day to nothing then i got so mad i took her

to another hospital and that dr said it was infected neck glands so they

started a strong antibotics this aint helping either and NOW the knot in

her neck has gotten bigger and theres 2 knots on her forehead tomorrow

Friday i carry her back to her dr

and i am going to demand xrays and labs theres got to be something not right

here

she is also having joint pain and hardly NO sleeping at night now unless i

give her a flexaril to make her sleep if this is a flare it sure is

puzzleing everyone

i am getting scared on this now cause a headache aint suppose to last this

long its been 2 weeks i think now and it all started in my opinion with that

field trip

she has not fell or hit her head the knots are worrying me

sometimes i think well its just her hormones acting up you know PMS

but then i think about her having had mennigitis and it took almost a week of

headaches and her becoming lathargic before any spinal tap was done

my sister said she would go with me if i wanted to travel to another hospital

i told her i need to let her dr recheck her before i do that

its making me think that when i say she has jra the drs just throw things off

i have had enough of this and that and really getting mad cause melissa

cant continue to stay out of school or continue to live with this headache

something just aint right please have the headaches checked out

Robbin

[Guest guest]

Robbin - I am going to call the doc and see what she thinks about his

headaches.I feel so bad for . I don't think its PMS with the knots

she has - you are right to get that checked immediately. I agree with you

about the drs just kind of blowing you off once you say jra, they tell you

it all is associated with it and the discussion doesn't seem to get any

farther. Or if you think its jra related they act like your blaming too much

on the disease. I will keep both of you in my prayers. Michele

Re: A Question

PLEASE check the headaches out

i am so fustrated right now melissa has been out of school for 9 days

and this headache is still there i have been in close contact with both her

pediatricain and the rhuemy and they keep bounceing it back and forth

we went from flexaril 2 times a day to nothing then i got so mad i took her

to another hospital and that dr said it was infected neck glands so they

started a strong antibotics this aint helping either and NOW the knot in

her neck has gotten bigger and theres 2 knots on her forehead tomorrow

Friday i carry her back to her dr

and i am going to demand xrays and labs theres got to be something not

right

here

she is also having joint pain and hardly NO sleeping at night now unless i

give her a flexaril to make her sleep if this is a flare it sure is

puzzleing everyone

i am getting scared on this now cause a headache aint suppose to last this

long its been 2 weeks i think now and it all started in my opinion with that

field trip

she has not fell or hit her head the knots are worrying me

sometimes i think well its just her hormones acting up you know PMS

but then i think about her having had mennigitis and it took almost a week

of

headaches and her becoming lathargic before any spinal tap was done

my sister said she would go with me if i wanted to travel to another

hospital

i told her i need to let her dr recheck her before i do that

its making me think that when i say she has jra the drs just throw things

off

i have had enough of this and that and really getting mad cause melissa

cant continue to stay out of school or continue to live with this headache

something just aint right please have the headaches checked out

Robbin

For links to websites with JRA info please visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

To manage your subscription settings, visit:

subscribe/

[Guest guest]

hi

just wanted to let you know i took melissa for her appointment yesterday

and the doctor is worried about these headaches she wanted to start her on

pred again but decided to go with tylenol 3 for a few days til wed when i

take melissa to see the nuerologist we have a CT scan planned for

and she said if melissa needed anything to let her know just call

she also wrote a letter to the school stating melissas absents is due to

complications from JRA and to allow melissa to do her work at home

and to help her if requested in any time slot

the dr said shes been melissas dr since birth and she will find out something

shes conferenceing with the other drs on staff

i did tell the dr my concerns about the headaches

she also said theres something going on and the knots are not gland related

from what she feels we will go one day at a time right now

crossing my fingers something will work

Robbin

[Guest guest]

Robbin,

I have been following your e-mails silently regarding your daughter's

headaches. My 4 year old also complains of severe headaches, the kind that

make her not want to even get up, turn the light on, etc. I also have some

Tylenol 3 for now. Luckily, her head has subsided over the last week, but

before that, it was an almost daily thing.

I guess you could say that we have been suffering with you. I hope all goes

well for you this week. It's very hard to see them suffer and feel that we

can't make it all better. Mom's feel guilty that way. Hang in there and

give butterfly kisses :-).

Angie

Re: A Question

>hi

>just wanted to let you know i took melissa for her appointment yesterday

>and the doctor is worried about these headaches she wanted to start her on

>pred again but decided to go with tylenol 3 for a few days til wed when i

>take melissa to see the nuerologist we have a CT scan planned for

>and she said if melissa needed anything to let her know just call

>she also wrote a letter to the school stating melissas absents is due to

>complications from JRA and to allow melissa to do her work at home

>and to help her if requested in any time slot

>the dr said shes been melissas dr since birth and she will find out

something

>shes conferenceing with the other drs on staff

>i did tell the dr my concerns about the headaches

>she also said theres something going on and the knots are not gland related

>from what she feels we will go one day at a time right now

>crossing my fingers something will work

>Robbin

>

>

>For links to websites with JRA info please visit:

>http://www.geocities.com/Heartland/Village/8414/Links.html

>

>To manage your subscription settings, visit:

>subscribe/

>

[Guest guest]

Good Luck, Robbin. Know that will be in our thoughts. I hope they can

figure out what's going on. Let us know how the testing goes, okay?

Aloha,

Georgina

Re: A Question

hi

just wanted to let you know i took melissa for her appointment yesterday

and the doctor is worried about these headaches she wanted to start her on

pred again but decided to go with tylenol 3 for a few days til wed when i

take melissa to see the nuerologist we have a CT scan planned for

and she said if melissa needed anything to let her know just call

she also wrote a letter to the school stating melissas absents is due to

complications from JRA and to allow melissa to do her work at home

and to help her if requested in any time slot

the dr said shes been melissas dr since birth and she will find out something

shes conferenceing with the other drs on staff

i did tell the dr my concerns about the headaches

she also said theres something going on and the knots are not gland related

from what she feels we will go one day at a time right now

crossing my fingers something will work

Robbin

[Guest guest]

Hi Robbin,

Haven't seen any messages from you in recent days. I just wanted you to know

that I'm concerned about how is doing. Hopefully, no news is good news?

When you have a chance, let us know, okay?

Aloha,

Georgina

From: Robbin40@...

Sent: Friday, February 09, 2001 03:06 AM

Subject: Re: A Question

i am so fustrated right now melissa has been out of school for 9 days

and this headache is still there i have been in close contact with both her

pediatricain and the rhuemy and they keep bounceing it back and forth

we went from flexaril 2 times a day to nothing then i got so mad i took her

to another hospital and that dr said it was infected neck glands so they

started a strong antibotics this aint helping either and NOW the knot in

her neck has gotten bigger and theres 2 knots on her forehead tomorrow

Friday i carry her back to her dr

and i am going to demand xrays and labs theres got to be something not right

here

she is also having joint pain and hardly NO sleeping at night

[Guest guest]

Sounds very much like low blood sugar.

You may have to eat carbs even if it is

not on your diet. Then eat protien to

keep you blood level from sinking again.

After that, eating small meal every 2 or

3 hours should help you feel maintained.

Look up information in regards to

Hypoglyceimia. I hope I spelt it right.

You must keep off sweets unless you need

it to normalize sugar levels.

Also see your doctor about this condition.

They do have fasting blood test to check out your

sugar levels.

I had a neighbor that seemed to get nervous

shakes and having anxiety attacks. I told

her she may want to see her doctor because

when a body begins developing a disease the

symptoms can take on anxiety and depression.

She did see her doctor and found out she was

a diabetic. Her symptoms were because her

blood sugar was too high.

LIZ D