Joint Pain

July 20, 1999

Geri,

I know what you mean about this list....I have a really hard time keeping

up...especially when it is nice out and I can be outside working in the

garden...

Ty is the best he has been in 2 years.....He still gets joint pain,hip mainly

and knees, still gets rashes,still gets migraines, still gets very

tired.....but his appetite is pretty good for him....

Tyler is not a complainer....you have to study him or know him very well to

know what is going on....One of the worst things I can do is be constantly

asking how he is.....HES 16 .....HE JUST WANTS TO BE NORMAL....I can tell

just by the way he is being if there is something off.....If he is really bad

he will come to me and talk.....

About 5 yrs ago he was doing pretty good and we were at the hosp for his

older brothers check-up... is 21 yr old now and has had Ulcerative

Coletis since he was 3....They see the same docs....

In just conversation the doc asked Ty " how about you...how are you

feeling.... " Of course Ty said FINE but I add that I thought he was

different....Ty's a VERY up person....if you ask him to do something,

anything it was always 'sure'...His attitude was different,not bad, just

different and he seemed like the little old man from LAUGH - IN...Moving very

very slowly and when he climbed the stairs he would be out of breath. They

decided to do some labs on him....We live 2 hours away from the hosp....When

we got home there was a message on our machine from one of his docs to turn

around and come back....His labs were a mess...Very low white and his

hemaglobin was down to 6....Started him on iron infusion right

away...Continued that for the next 6 weeks.....From that point on I've

learned to listen to myself.....I had been thinking ...he's a TEEN now and

they always do strange things but he won't get away with that....I've learned

that I have to listen to myself....That GUT feeling....

I hope this finds you feeling the best you can be for this day....at least...

Luanne Ty's mom

September 27, 1999

Hi ,

I've been checked for Rheumatoid Arthritis but I know it can develop at any

time. It's listed as an autoimmune disease but boy, I'd sure hate to have

that on top of AIH! However, doesn't it cause joint swelling usually?

That I do NOT have, which further confuses the issue. When I first sit

down after being on my feet for awhile my feet and legs throb like nothing

I can describe. This is just the last thing I need right now. Especially

since I basically feel good. No real fatigue except the kind you get from

battling constant pain and effort to walk. No nausea, no distress at all.

Just me and my aching legs, feet and back and swollen stomach. I'm eating

very little and should be losing weight. Actually, I have lost a little

weight but not in proportion to how little I eat. The reason I'm eating

less is just indication that my normal appetite is back, which has never

been big. I've been a light eater most of my life and I'm not usually big

on snacks.

My doctor still has no idea about how bad the leg pain is now so I'll be

curious about what he decides to do when I describe it. I wouldn't want to

live with it this way from now on!

Take care,

Geri

September 29, 1999

Geri,

Taber's med dictionary says rheumatoid arthritis causes inflammation,

stiffness, swelling, cartilige hypertrophy, and pain in the joints and

muscles. That about covers it huh? I've been getting a new ache lately in

my thighs. It feels like I have huge muscle spasms in them and hurts no

matter what position I'm in. Lovely... Does that sound like yours? Along

with the other symptoms they have already been giving us? I guess they were

right when they said life isn't fair! However, I have had two good days

lately! These symptoms are all so wierd, they come and go so much. But I

sure do enjoy it when a good day comes along...

Love ya,

(AIH)

October 3, 1999

,

I can't help but wonder about Rheumatoid Arthritis, as you suggest. It's an

autoimmune disease and I know that all of us who have one autoimmune disese

are susceptible to others. I keep watching for any joint swelling and so

far there's none, but the pain is getting worse. It's reached the point

where I simply can't get out of bed and walk around until about an hour

after I take Prednisone and a Vicoden. Now it's moved to one of my hips

and my lower back.

I saw my Hepatologist Friday and he commented that I'ved been on Prednisone

for two years and the pain could be a result of taking the drug too long.

He wants me to stop the Prednisone but he follows the medical direction of

the transplant specialist at Scripps who says I can't ever stop taking it.

I don't think that osteoporosis causes pain unless there's a break, so

despite having developed osteoporosis, that can't be it.

However, like you, I feel the pain other places besides joints. My feet

continue to burn and tingle and my thighs also ache badly. Also, my right

hand has become so weak I can't pick up a glass (because of weakness and

pain) until after the meds take effect. Of course I worry, as all of us

must, that some other condition is developing. My Hepatologist told me to

pursue the problem with the new Internist I'm seeing but I don't know if I

can wait for two more weeks with things going downhill this way.

I also have some days that are better than others. Once I finally got up

and around today I washed all of the windows inside and out (we have a

single level house) and then vacuumed the whole place. It's not a big

house but we have a lot of windows. Believe me, it was determination and

stubbornness that kept me going through the day because I felt like

screaming after the first hour of pushing myself. But, I feel like I would

have to give up my standard of living if I give in to this and just let

things go to pieces. My husband can do so little because of his bad back,

but both of us groan and moan around here and keep at it.

Starting early next month, we'll have the company of a healthy young male

family member for a couple of weeks. In November our grandson, who is a

student and is now in Africa working on a research project, will be here

for awhile. Believe it or not, he e-mailed me from Cameroon and told me to

make a list of things he can do for us while he's here! Then in December

one of our sons will be here for a couple of weeks. In January, my nephew

who is now in the US Army in Bosnia, will be here for two weeks on leave.

We raised him so he knows the drill. will be busy for those two

weeks. Fortunately we raised 'em right, so none of them have a problem

with helping us.

But sometimes I wonder what the future holds at this rate.

It does sound like you are developing something very similar to what I

have. I wonder if it's somehow related to AIH or if it's a result of the

meds? But, you aren't taking Prednisone, so that's not what's causing it

for you. If anyone has gone through this and has some answers, I could

really use them!

Hope you're not having too much problem, . How soon will you be

seeing the doctors in Miami?

Take care,

Geri

October 3, 1999

Geri,

I don't think you would be able to see joint swelling, I think that would be

internal. Of course that is only my guess. I can certainly relate to the

pain you are having in your legs and wrists, even though mine is not nearly

as bad as yours. The wrist weakness/pain kind of comes and goes, but the

legs are constant.

I'm so happy for you that your family is coming and will help you with the

house... Mine is looking pretty neglected, but I just can't seem to find the

heart to care. I go from fatigue to depression to feeling pretty good, and

at that point I just want to get out of the house and do things, and see my

family. I too wonder just what the future holds, but that is mostly on my

" down " days. I have alot of " stuff " going on in my head, and am looking

forward to seeing my new psyciatrist on Tuesday. I need to get some of this

out...

My appointment with the U of M is not until Nov. 5th. I also made an appt.

with a rheumatologist for later this month, but today is a " down " day and I'm

wondering why bother. You know it's funny, cause on good days I feel like I

can lick the world.

Tomorrow will surely be a better day, and that is what I hold onto.

Love you,

(AIH)

P.S. Thanks for being there....

October 7, 1999

,

I really don't know much about Rheumatoid Arthritis. I used to be so

uninformed, I thought that all arthritis was the same and that different

people used different terms for the same condition. If only it were that

simple!

Many years ago I worked for a man who came to the office after a few days

of sick time with his ankles, hands and wrists enormously swollen. He told

me that it was a sudden onset of previously undiagnosed Rheumatoid

Arthritis. That's been my only exposure to anyone who had it, so I guess

I assumed that was what happens when you have RA. But, I've also been

tested many times for whatever factor is supposed to be present in RA and

the tests are always negative. Not that labs are always conclusive, as we

all realize. another cause for joint pain is Lupus and I've been tested

for that over and over for 20 years. Always negative.

The plus to the pain, if it's possible to count a mixed blessing as a plus,

is that after I take Vicoden, I'm somewhat functional for awhile. I'm

embarrassed to admit that I don't think to take the Vicoden right away and

stagger around wondering why I hurt so much until it occurs to me that I

haven't made use of my chemical " crutch " . I do take it first thing in the

morning, so my days are jump-started. It's halfway through the day when I

pay the price for being forgetful.

I laughed when you said that your pain isn't as bad as mine. It probably

IS as bad as mine. I tend to measure pain according to how others react to

it. I wait until I feel as badly as they appear to feel and since I'm not

very demonstrative, I figure mine can't be too bad or I'd be lying back

whimpering as much as some people I know (in my day to day life) do. I was

the same way when I had babies. Everyone said that the pain would be

incredible, so I would go through difficult deliveries with hardly a

complaint, believing that I wasn't yet hurting as much as people told me I

would. My Mom used to say it's a matter of " high " pain tolerance, but

maybe it's more related to our personalities?

Our kids hearts are in the right place but it's the younger group that will

really pitch in. They seem almost proud that I taught them to take pride

in how hard they could work when they were younger. I taught one of our

sons how to wash windows so well he used to earn $25.00 an hour when he was

14 doing storefront windows, using Mom's techniques, and that was back when

kids were only earning $2.00 to mow a lawn. I joke with them, telling them

that I don't need to feel my way along walls, so the fingerprints on

woodwork is theirs, not mine. Thus, they all know how to wash woodwork. I

don't shortcut through muddy fields and they do, so they have the honor of

scrubbing floors, and I'm just a frail woman (ha!) so the big, tough teens

are better able to plow the vacuum cleaner through the house. It's not as

though I sit back sipping mint juleps while my young lackies slave away. I

work harder than any of them when I can. But, they've learned how to

maintain a standard and believe it or not, they're very proud of themselves

because of how well they can do these things! They're really a great bunch

of young people and I love their company.

I also feel a little *down* lately. Maybe it's a seasonal thing? But I

know it won't last, so it's easy to ride it out. I hope that the

psychiatrist you are seeing is able to give you the support you need. Too

often, they leave people feeling worse than they did when they went in

there. My son just had a very negative experience with one that he saw

because he's on Workmen's Comp disability. He refuses to go back to the

guy, who headed off in some obscure and potentially damaging direction that

had little to do with Bill's realities. Got to always be on our toes,

don't we?

Take care,

Geri

October 10, 1999

----------

>Geri,

Twins, I am sure of it. I have just gone to my GP with the joint pain, she

told me the same thing about RA, but did tell me that the other type of

Arthritis does not have swelling, she has scheduled me for an X-ray

tomorrow to see if it IS arthritis? I had my bone density test done two

weeks ago and I get the results back this Friday when I see my specialist.

Sorry, but I hope I am not as unlucky as you, I hope I have not got

osteoporosis.

As you, I am on an extreme low, and I think if she tells me that I have it

that could be the push.

I do hope, however, that you bounce back quickly, everyone here needs your

words of wisdom to keep them going.

SueB.

October 11, 1999

Geri,

You poor thing, I wish I could just come through this screen and hug your

neck... I am so sorry for all the problems/symptoms you have been having

lately, then the flu on top of it! I don't know who ever said God won't give

us more than we can handle, but I've been seriously doubting that statement

lately!

I agree with you about the risks/side effects of prednisone, but they don't

leave us a whole lot of choices, do they? Although I've heard alot of new

drug names mentioned on this board lately, so maybe... I think you were

suppossed to get tested for diabetes today, so be sure and let us know how

that went. I also hope your hubby and you are both shaking the flu...

I've been going through the same stuff with my legs, they hurt real bad for a

week or so, then they get better, then the pain comes back. I'll let you

know what I find out, and please do the same. I really hope you do go to LA

or wherever you need to, to get better medical care. You have way too many

bad symptoms to trust local so-so hepatologist. Like you told me, go see a

real specialist! LOL Actually, now that I think about it, all of my

symptoms seem to come, go, come, go! It's kinda like a roller coaster ride,

except I never liked them either!

Hey, did you see the new post by Kay (I think) about her ascites? Very

interesting, especially the tummy/midriff bloat, and her legs hurting because

of too much water in them! God, I can't wait for them to diagnose whatever

it is I have, at least then I'll be able to put a definite name/cause to all

this stuff, and feel less crazy (well, maybe!).

I got a letter in the mail on Friday, from my ex-husbands company. It's time

to sign up for Cobra or lose the insurance. They gave me 7 days to get a

check to them, and are trying to tell me I can only have the Cobra for 6

months! Everything I've read says differently, so I need to call them and

find out what is going on. I'm also waiting for another ins man to call, his

first impression was that I am in fact considered uninsurable due to liver

disease/depression/alcoholism (in recovery for 7 years now). But he was

gonna investigate and check it out for sure. Ain't life grand!

Love you,

(AIH)?

October 12, 1999

Laruen,

Sometimes it feels like I'm riding both sides of a see-saw. Sometimes I

land in flowers and sometimes in mud.

My hubby is still battling residuals of flu but all I have left is the

cough. I was so sick the first night, the doctor wanted me to go to the ER

and I didn't have the strength to do it... couldn't face the hours of

waiting to be seen. But the next morning, I was better and now I feel like

I just have a mild cold with some congestion.

On the other hand, the muscle and joint pain continues to do sneak attacks.

Yesterday I decided that whatever is causing it had gone away. Ha! Today

I'm barely staggering around again and my knees are really hurting, besides

feeling not quite strong enough to walk around the house. My husband

thought it could be a disk problem since I have major pain most of the time

in one hip and down the leg on that side. However, do disk problems

actually decrease from moving around and working?

I had the glucose test today and some others - I know not what. They took

about four vials. When she removed the needle, blood shot all over the

place. First time that's ever happened to me, but she may have had the

rubber tourniquet too tight for too long. I won't know the results until

Friday when I see my Internist.

It's very difficult knowing if we have the best doctors for our

condition(s). My local Hepatologist doesn't seem to go out of his way to

look into anything. Sometimes I think that he thinks that all of the

medical problems in life would be solved if only we'd all have a

colonoscopy. Scripps (in California) is so big, you can get lost in the

shuffle. The advantage of having a " renowned " specialist is that they do

understand the disease process and usually know the best way to treat it.

The disadvantage is that too much is delegated and there's no feeling of

" personal " communication. If my labs go up or something really alarming

happens I'll got to Scripps and pay a higher co-pay, or if it's liver

related, it will be 100% covered, I think. It was 100% before I went into

remission and taken off the transplant list. The funny thing is, I have a

lot of confidence in my local internist, but even medical personnel in LV

are inclined to go to California for invasive procedures and for serious

illnesses. One nurse told me that she lives blocks from one of the major

hospitals in LV and she worries what will happen if she's ever taken there

by ambulance. Yet, I'm sure that all of the hospitals can't be that bad.

They literally saved my life locally and my diagnosis was FAST! Also,

confirmed later by two different California Hepatologists who specialize in

transplants, one from San Francisco and one from Scripps. Incidentally,

they both insisted on seeing the actual biopsy before they made a

conclusive diagnosis.

Every doctor I've seen has been distressed over the fact that I'm stuck

with Prednisone. It's doing it's share of dirty tricks on me, as it does

on most of us, but as they all say, " consider the alternatives. "

Prednisone alone is NOT the answer, however, from everything I've been

told. Imuran is also imperative. I had the impression that if my

condition had been less serious, I'd have been started on Imuran alone.

I'd never heard of ascites. I thought that if your stomach was bloated,

it was " edema " and didn't realize that it's so closely associated with

liver disease. When mine was at it's worst, my upper legs grew massive

overnight. All of my life I've had " skinny " legs. I used to yearn to gain

enough weight so my thighs would touch each other. Then one morning when I

got out of the shower I saw that my legs looked like two logs. Scary. My

hands were so swollen that my wedding ring actually cut into my ring finger

and caused it to bleed before I noticed it. I only had one pair of sandals

I could wear and they were too tight. And, my eyes were almost swollen

shut. My stomach was too bloated for me to sit upright and my husband

actually would bring me dinner on a tray since I had to lie down on my side

to eat. This was all before I started taking Prednisone, so I can't blame

the cursed drug for that! But, I had no pain. Believe it or not, I

thought that I was simply having sudden fluid retention due to my age (is

aging a disease?) I also had excess ammonia in my system which undoubtedly

caused " brain fog " so I'm sure I wasn't thinking clearly. One thing I know

for sure, this disease is nothing to fool around with. A quick diagnosis

saved my life and I became critically ill very rapidly. So did Barbara

Ann, incidentally. She got so sick so fast, she had to have a transplant

soon after diagnosis. Too far advanced for treatment!

I think that you can contact COBRA direct. Do an Internet search and see

if you can locate their web pages. I'm certain that you are covered for 18

months but your relationship with your husband (divorced) might alter the

coverage rules. Probably not. It could be that the insurance company is

trying to get out of assuming expensive coverage for you. We certainly

hope to turn to COBRA next August when our current coverage stops. And, we

plan on receiving it for 18 months. They like to pull that " 7 day " thing,

by the way. However, they should have advised you by mail some time ago

that you are eligible for COBRA and should have given you longer to get the

money together. Believe me, they are going to be quick to drop you if you

don't get those checks to them on time.

This may vary from state to state, but I know that in some states,

insurance companies MUST accept almost everyone. You may, however, have a

waiting period due to a pre-existing condition. Remember, they can't make

you go by one set or rules and use another set for others. Like just about

everyone, I don't trust insurance companies. They tell you what they want

you to know and are expert at obfuscation (a perfect term for deceptiveness!)

Anyhow, I'm doing okay. I hope you're okay. I really wish you could get

some kind of definitive diagnosis and not have to hang out there not

knowing what's going on. They're hanging labels on you based on

preconceptions. Too often, they see what they want to see, not what's in

front of their faces.

Life goes on, doesn't it? It just takes directions we hadn't planned.

Take care,

Geri

August 11, 2001

In a message dated 8/11/01 4:51:35 AM Pacific Daylight Time, ldm_12@... writes:

Lately I've been going through excruciating bouts of joint

pain in my legs and mild pain in my arms and hands. I'm not sure if this is what arthritis feels like (I'm

only 26), but this is what I liken it to.

When you see your doctor, ask if the aches are related to Prednisone use.

Also, check on your bone density and treatment for it.

People in this group often speak of such pains. I had a lot of severe muscle and joint aches when I was on higher doses of Prednisone, but it's greatly lessened now. I don't know for sure that the Prednisone caused it; my doctor isn't good about discussing that sort of thing.

Harper (AIH 5/00)

August 11, 2001

Hi - I'm new to the group, but have had AIH since 1996. Regarding joint pain, shortly after I started Prednisone (60 mg.) & Imuran (50 mg.) I got excruciating pains in both knees for about two months, mostly at night, but have not ever had a problem since.

Re: [ ] joint pain

In a message dated 8/11/01 4:51:35 AM Pacific Daylight Time, ldm_12@... writes:

Lately I've been going through excruciating bouts of joint pain in my legs and mild pain in my arms and hands. I'm not sure if this is what arthritis feels like (I'm only 26), but this is what I liken it to. When you see your doctor, ask if the aches are related to Prednisone use. Also, check on your bone density and treatment for it. People in this group often speak of such pains. I had a lot of severe muscle and joint aches when I was on higher doses of Prednisone, but it's greatly lessened now. I don't know for sure that the Prednisone caused it; my doctor isn't good about discussing that sort of thing. Harper (AIH 5/00)

March 29, 2002

I try to describe my pain as it feels like I have no skin, tissues,or muscles

around whatever is hurting........like direct exposure to cold air on a

toothache..........and I felt this way for quite a few years and thought it

was " normal " for after 40.......boy, was I surprised the rest of the world

wasnt feeling this way like me.......

Also , I had headaches for a year or so ....migraines , a lot of them ,

before I was dxed and once the RD got me on the right " cocktail " they stopped

......now I get them occassionally and usually sinus related .....or

tension.....I just keep fioracet on hand and try to kill them before they get

out of hand.

Judy in AZ

February 21, 2004

I usually don't have joint pain unless I push it too far. Then, my knees will

hurt or my ankles.

Kate

February 21, 2004

no, that isn't true. I don't have joint pain unless for some reason I overdue on

my legs then my legs will ache in the knees. The rest of the time no pain.

[ ] Joint pain

Does everyone who gets lyme disease get joint pain?

I had a doctor tell me that since I didn't have any, there's really

no way I have lyme...

February 22, 2004

In my own experience Lyme symptoms aren't there all the time. Joint pain

occurs but only rarely. I can have all symptoms at once, some, or none at

all... Guess it depends mostly on how fatigued I let myself become.

Kezzi. . .

Succumbed in 1976...

On or about Sunday, February 22, 2004 12:10 AM [GMT+1=CET],

sbm <fsmfarms@...> sprinkled letters onto the page, saying:

> no, that isn't true. I don't have joint pain unless for some reason I

> overdue on my legs then my legs will ache in the knees. The rest of

> the time no pain.

>

> [ ] Joint pain

>

> Does everyone who gets lyme disease get joint pain?

> I had a doctor tell me that since I didn't have any, there's really

> no way I have lyme...

>

February 22, 2004

> Does everyone who gets lyme disease get joint pain?

> I had a doctor tell me that since I didn't have any, there's really

> no way I have lyme...

Hi ;

I had zero joint pain when it began; I started with Lyme meningitis,

and it remained all neuro while I was being treated and improving.

When treatment stopped after a few weeks, all the neurologic problems

came back, even on oral antibiotics. Then a year later, it was

multisystemic. The joint pains started then. I hope you find

whatever it is that will help you.

Sincerely,

Regina

neurochem1@...

June 28, 2004

One characteristic of RA is that it's bilateral. That is, what happens

on one side usually also happens on the other side. Mine wasn't when it

first started, but it soon became that way. Sue

On Monday, June 28, 2004, at 02:28 PM, jefersea wrote:

>

> Just wondering...does anyone else experience having joint pain on one

> side, just to have it duplicated on the other side as well? It seems

> like wherever my pain might appear on my left hand, it soon happens

> at the same place on the right hand. Please let me know...this seems

> so weird!

June 28, 2004

Hi Sue,

Sorry to read what you said, no only for what I may have to look forward to, but

because you are also experiencing the pain.

Sue, when it became that way, what happend to you? What can I expect to

experience in the future?

Thanks much for any help you can share.

Thanks again,

Jefersea

Re: [ ] joint pain

One characteristic of RA is that it's bilateral. That is, what happens

on one side usually also happens on the other side. Mine wasn't when it

first started, but it soon became that way. Sue

On Monday, June 28, 2004, at 02:28 PM, jefersea wrote:

>

> Just wondering...does anyone else experience having joint pain on one

> side, just to have it duplicated on the other side as well? It seems

> like wherever my pain might appear on my left hand, it soon happens

> at the same place on the right hand. Please let me know...this seems

> so weird!

June 28, 2004

Jeffersea, Fortunately I have a wonderful rheumatologist who does not

want to see me in pain. He tried various medications until he found one

that has relieved the pain and inflammation. That one is Enbrel, and it

is working very well for me. I feel so lucky that there is a medication

that is effective for me. I hope it continues to be.

Unfortunately, I went through some months of unbearable pain before

this happened. I could not do many normal things, like cut my own meat,

LOL. My rheumy encourages his patients to call him, so I called to

complain about the pain, and he would take some action each time.

Before Enbrel, I was on prednisone, methotrexate, and Arava.

So my advice is to be the squeaky wheel, because it's the one that gets

the grease. But remember that each person is different in symptoms. So

your experience with RA may be completely different from mine or

somebody else's. Good luck to you.

Sue

On Monday, June 28, 2004, at 05:40 PM, Craig C. & /or Shirley S.

wrote:

> Hi Sue,

>

> Sorry to read what you said, no only for what I may have to look

> forward to, but because you are also experiencing the pain.

> Sue, when it became that way, what happend to you? What can I expect

> to experience in the future?

>

> Thanks much for any help you can share.

>

> Thanks again,

> Jefersea

June 30, 2004

Sue,

I'm so sorry you went through such pain. I truly feel for you. I'm glad you

now seem to have a good rheumatologist who is concerned for your well being. I

hope the medication Enbrel will continue to help you too. It's like such a

blessing when something works, isn' t it?

Monday of last week, I went to a quack, who didn't seem to know a lot about RA.

Today I went to see a doctor whom seemed to know about RA and such. She took

some blood testings, and checked my joints individually. I was able to tell her

if I felt a painful area, instead of trying to explain something to someone and

hope they understood when I told them where I hurted. I should know in a month

what the outcome is. My father had arthritis really bad, and had trouble going

to work some of the time, and two of my sisters also have some form of

arthritis. Now comes the wait. Life is never dull, is it?

Well Sue, I've got to get some of that good o'beauty rest they say is so

important, so please take care, and may your day be one of energy and sunshine,

and thanks again for your help...I do appreciate it!