Re: Sorry this is long New Doc and New Meds

[Guest guest]

-Hi Pat,

Sorry your new rheum changed a combination that was working so well

for you. I am sure that he/she meant well. Some docs think that MTX

adds a synergistic effect to enbrel so they keep people on the two

together. It could very well be your pa flared some when you droppd

the MTX.

I also have secondary fibro and myofascial pain. Many of us do.

PA can caue inflammation in the tendons and cartilage...especially

where they meet the bone. It is called enthesitis. Fibro is muscle

and soft tissue pain so there is a lot of overlap. Many people say if

you treat the pa aggressively it helps the fibro too. The pain of pa

can actually cause the fibro pain.

In my experience most hand pain , especially if it is in the joints

is pa. I can get sort of an aching hand from fibro but it doesn't

feel the same.

Sometimes I wish the word fibro was never invented because it can

confuse the issue so much! I experienced a period of time where the

docs were calling ALL my pain fibro and unfortunately the pa

progressed during that time. Now I take ANY joint pain seriously and

treat it as if it is pa even if there is no visible swelling.

Can you call your new rheum and tell him/her that your pain increased

when you stopped the MTX?

good luck..let us know,

Marti

-- In , " pfried520 "

<Pfried520@a...> wrote:

> Hi Everyone,

>

> Let me start by explaining that my health insurance had changed and

I

> had to change Rhuemy's. So the story begins that I was on enbrel,

Mtx

> 20 mgs week, folic acid and a INH medicine because I had tested

> postivite for TB but no active disease. With the enbrel you had to

> take the INH.

>

> So my insurance changes and now the new Rhuemy, is slowly taking me

> off MTX. My skin is totally clear and he feels it is from the

enbrel.

> He has now put me on Vioxx and a muscle relaxer at bedtime becuase

he

> said I also have secondary Fibromyalgia and Myofascial pain

syndrome.

>

> My lower back is very stiff and painful and my fingers and knees

hurt

> badly. Sometimes everything hurts and I am so tired. I am very

> confused about all of this because I thought it was all arthritis

and

> what I have read it sounds as if Fibro is not arthritis but stress

> induced.

>

> I have been working and going to school full time for over a year

and

> am running on empty. I have two young teens and my husband doesn't

> seem to care anymore. I work in the school district and have had

the

> summer off but still went to school. I go back to work this week

and

> school and as of today I don't feel I can even move out of the

chair

> I hurt so bad.

>

> Financially, we cannot afford to loose my paycheck. I am only a

> teachers aide and the job can be quite physical, alot of lifting

> bending and such and restraint. I don't know if Fibro is common

with

> PA or really understand how it interacts with it. I know the pain

is

> really but am not sure what is causing it. I feel like I am going

> crazy.

>

> I need some encouragement or words of advice.

>

> Thanks Everyone,

> Pat

[Guest guest]

Hi Marti,

Actually I am not off the MtX as of yet. I still take 6 pills of it a

week, along with the other meds. My husband and I were trying to

figure out why the meds cleared up my skin but the pain is bad still.

The new Rhuemy, prints out a transcript of the whole visit.

He never said anything to me, but in it it says he is working on

treating the secondary Fibro and Myofascial Pain syndrome. I didn't

know what this was or if that is the reason I am having so much pain

and stiffness and can't seem to get it to stop. My other Rhuemy never

said anything about Fibro and Myofascial.

Thank you for letting me know that they often go with PA. It is very

confusing.

I hope that once the MTX is stopped my skin doesn't flare again. For

the first time in I don't know how long I went and bought short

sleeve shirts.

Thanks for the response

Pat

> -Hi Pat,

>

> Sorry your new rheum changed a combination that was working so well

> for you. I am sure that he/she meant well. Some docs think that MTX

> adds a synergistic effect to enbrel so they keep people on the two

> together. It could very well be your pa flared some when you droppd

> the MTX.

>

> I also have secondary fibro and myofascial pain. Many of us do.

> PA can caue inflammation in the tendons and cartilage...especially

> where they meet the bone. It is called enthesitis. Fibro is muscle

> and soft tissue pain so there is a lot of overlap. Many people say

if

> you treat the pa aggressively it helps the fibro too. The pain of

pa

> can actually cause the fibro pain.

>

> In my experience most hand pain , especially if it is in the joints

> is pa. I can get sort of an aching hand from fibro but it doesn't

> feel the same.

>

> Sometimes I wish the word fibro was never invented because it can

> confuse the issue so much! I experienced a period of time where the

> docs were calling ALL my pain fibro and unfortunately the pa

> progressed during that time. Now I take ANY joint pain seriously

and

> treat it as if it is pa even if there is no visible swelling.

>

> Can you call your new rheum and tell him/her that your pain

increased

> when you stopped the MTX?

>

> good luck..let us know,

> Marti

[Guest guest]

Welcome Pat,

Hope someone can help. You have a lot to put up with.

Best of luck,

[Guest guest]

Dear Pat,

Fibro does go with PA and even if you only had it alone it can be quite

miserable. I was first diagnosed with Fibro years ago when most doctors had

no idea what it was and the ones that did, didn't believe it existed.

Luckily, I had a great family doctor and rheumatologist who both understood

and were great with me. So don't feel like it's all in your head because

it's not. It's all in your muscles if you want to know the truth. Plus

they are finding out more all the time about Fibro and that people who have

it have more Substance P in their spinal fluid. From what I can tell about

Substance P, it is sort of a pain inducer or something that intensifies

pain. We also have lower serotonin levels, which help fight pain, so we get

hit with a double dose or problems. (I also have myofascial pain syndrome

and that is sort of like the worst Fibro you can have. Your muscles seem to

hurt all the time and just to touch your skin hurts like crazy. So I know

your pain has too be really high right now. I'm amazed you can keep up with

everything now.)

Stress can make Fibro worse, just like it can make any disease or illness

worse. I think you notice stress more in Fibro because we tend to clench up

our muscles under stress and then the next day they ache even more. What is

strange about Fibro is it doesn't matter if the stress is from a happy

occasion or a stressful one...chances are the pain will be worse the next

day one you break your routine. A routine is one of the best things you can

do with Fibro because lying in bed all day usually makes things worse. Some

days, you have no choice about it, but if you do it day after day usually

fibromyalgia gets much worse.

I've had it now for over 20 years I guess, but I really read everything I

could about it when my 14 year old daughter developed a severe case. She

ended up dropping out of school, getting her GED, and enrolled into

community college. That way she could schedule classes in the evening when

her pain wasn't as bad or she wasn't as fatigued. She just moved out this

weekend actually, to finish her last 2 years at a major university about an

hour from our home. I've been worried about her doing it all on her own,

but she has come a long way and knows how to manage her illness really well

now. The ironic thing is she wants to be a teacher, and she had so many

problems with teachers who were too ignorant to understand a chronic

illness. She was a straight A student and yet they were threatening to fail

her because she couldn't always get to school in the morning when her pain

was bad. So we had a rough time with the school system down here. Anyway,

I'm really proud of her. But back to you, stress will make it worse, but

doesn't cause the disease.

One theory is Fibro comes from a sleep disorder, since both my daughter and

I have one, it's really possible, but it's hard to know if the sleep

disorder is from Fibro or the other way around. Does that make sense?

Does your doctor have you on any anti-depressants? I know I hated to take

them, but they are almost essential with Fibro. They increase your

sereotoin and also help you fight off the pain. Are you having trouble

sleeping at night?

You also said that your husband doesn't seem to care. That can be really

hard if your spouse just tunes you out when you are in pain. I have a list

of 12 pain tips that are great if you think he would read them. I put my

list on my refrigerator at home and everyone read them. It really seemed to

help with my family. I'll be glad to send them to you if you want them.

(I'll just send them to your personal email address, that way I won't list

them over and over so all the other PA members have to read them again.)

There are a lot of good books on Fibro that can help you understand and help

you learn to live with the illness. It sounds like you have a really full

schedule and that has to be rough with PA alone, let alone adding

Fibromyalgia to the problem. No wonder you feel like you are going crazy

with all that is going on right now in your life and dealing with chronic

pain too. Does your doctor have you on any pain control medication? That

is almost essential with the myofasical pain syndrome.

I wish I had more advice to give you. You will probably have to slow down

some to decrease the pain, and try and control your stress as best you can.

Write me anytime you need to talk and I'll try and think of some other

things that help. You really do need to find some time just for you. I

know how hard that sounds with a family, a job, a husband, school and a

illness, but it's the only way you'll survive all of this without going

crazy...lol.

Take care and let me know how you are doing. Hopefully the muscle relaxers

will help and you'll feel some of the pain decrease. Hang in there and keep

in touch. love, Fran

-Original Message-----

From: pfried520 [mailto:Pfried520@...]

Sent: Sunday, August 01, 2004 10:59 AM

Subject: [ ] Sorry this is long New Doc and New Meds

Hi Everyone,

Let me start by explaining that my health insurance had changed and I

had to change Rhuemy's. So the story begins that I was on enbrel, Mtx

20 mgs week, folic acid and a INH medicine because I had tested

postivite for TB but no active disease. With the enbrel you had to

take the INH.

So my insurance changes and now the new Rhuemy, is slowly taking me

off MTX. My skin is totally clear and he feels it is from the enbrel.

He has now put me on Vioxx and a muscle relaxer at bedtime becuase he

said I also have secondary Fibromyalgia and Myofascial pain syndrome.

My lower back is very stiff and painful and my fingers and knees hurt

badly. Sometimes everything hurts and I am so tired. I am very

confused about all of this because I thought it was all arthritis and

what I have read it sounds as if Fibro is not arthritis but stress

induced.

I have been working and going to school full time for over a year and

am running on empty. I have two young teens and my husband doesn't

seem to care anymore. I work in the school district and have had the

summer off but still went to school. I go back to work this week and

school and as of today I don't feel I can even move out of the chair

I hurt so bad.

Financially, we cannot afford to loose my paycheck. I am only a

teachers aide and the job can be quite physical, alot of lifting

bending and such and restraint. I don't know if Fibro is common with

PA or really understand how it interacts with it. I know the pain is

really but am not sure what is causing it. I feel like I am going

crazy.

I need some encouragement or words of advice.

Thanks Everyone,

Pat

[Guest guest]

Hi Fran,

Are those pain tips for any illness, or just Fibromyalgia? I'd be

interested in those 12 tips you mentioned if they might help the PA pain

i am in.

hugs

carla

[Guest guest]

Dear Carla, The pain tips apply to anyone who has pain. I actually found

them on a TMJ site and the author was unknown. So I can't give credit to the

person who wrote them, but they do seem to touch people who deal with

chronic pain like we do all the time. Well here they are and I hope they

help you. Love, Fran

1. People with chronic pain seem unreliable (we can't count on

ourselves). When feeling better we promise things (and mean it);

when in serious pain, we may not even show up. Pain people need

the " rubber time " (flexible) found in South Pacific countries and

many aboriginal cultures.

2. An action or situation may result in pain several hours later, or

even the next day. Delayed pain is confusing to people who have

never experienced it.

3. Pain can inhibit listening and other communication skills. It's

like having someone shouting at you, or trying to talk with a fire

alarm going off in the room. The effect of pain on the mind can seem

like attention deficit disorder. So you may have to repeat a

request, or write things down for a person with chronic pain. Don't

take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that

wouldn't normally bother you may seem too loud or glaring.

5. Patience may seem short. We can't wait in a long line; can't wait

for a long, drawn out conversation.

6. Don't always ask " How are you? " unless you are genuinely prepared

to listen - it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually

very temporary). When in pain, a small task, like hanging out the

laundry, can seem like a huge wall, too high to climb over. An hour

later the same job may be quite okay. It is sane to be depressed

occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes

abates after a short rest. Chronic pain people appear to arrive and

fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or a

comfortable chair, is as important as knowing where a bathroom is. A

visit is much more enjoyable if the chronic pain person knows there

is a refuge if needed. A person with chronic pain may not want to go

somewhere that has no refuge (e.g. no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a

person in pain. Your offer of a pillow or a cup of tea can be a

really big thing to a person who is feeling temporarily helpless in

the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a

body-wide feeling of discomfort, with hard to describe pains in the

entire back, or in both legs, but not in one particular spot you can

point to. Our vocabulary for pain is very limited, compared to the

body's ability to feel varieties of discomfort.

12. We may not have a good " reason " for the pain. Medical science is

still limited in its understanding of pain. Many people have pain

that is not yet classified by doctors as an officially

recognized " disease " . That does not reduce the pain; it only reduces

our ability to give it a label, and to have you believe us.

RE: [ ] Sorry this is long New Doc and New Meds

Hi Fran,

Are those pain tips for any illness, or just Fibromyalgia? I'd be

interested in those 12 tips you mentioned if they might help the PA pain

i am in.

hugs

carla

[Guest guest]

Hi Fran,

Just want to thank you on behalf of everyone for the help and good advice

you give lots of people on this site. I think everybody will agree you are

always there to pass on any knowledge you may have of any particular problem or

situation we may find ourselves in. There has been a few times I have been

going to answer some queries until I've read what you have to say. I then

decide

I don't need to because you have already covered it really well.

The downside to this (I am sure you will agree) is that the reason you can

give such good advice is that you have usually had to go through it yourself.

Keep up the good work.

Hope all goes well at the Cleveland clinic for you. You deserve a bit of

better luck than you have been getting.

Take care,

[Editor's Note: Hear! Hear! Thank you, , for saying what I'm sure

everyone on this list has wanted to say. No matter how Fran feels, she always

has time to extend a hand and a shoulder to the rest of us. And while we're at

it, thanks to you, too, . You always make the time to greet every

newcomer and brighten our days with your humor. I am honored and privileged to

have been able to get to know both of you. Kathy F.]

[Guest guest]

Dear and Kathy,

You really surprised and honored me with your last email. I guess for once

I'm at a loss of words..lol. This group has been so much help to me that

the least I can do is help out when I feel someone's pain or we've had a

similar problem. I guess I was always brought up to find the best in every

situation, and it's been really hard lately with my health. When you are in

pain all the time and feel like your life has been turned upside down, it's

not always easy to " look on the bright side " . But if I do help a few people

or can reach out to someone in pain, at least I feel like all my suffering

hasn't been in vain.

Your kind words will help me to push on during days when it seems

overwhelming or bleak. So I hope you both realize how much it means to me,

to have you say such nice things. Even with all the sickness and pain I've

had in my life, I consider myself a really lucky person. I was raised by

two of the greatest parents, I married a wonderful husband, and I have two

beautiful, smart and kind daughters. So if my life ended today, I'd have to

say it's been really good to me. Thanks again for making my day. Love,

Fran

P.S. I feel the same way when I read your emails, , and yours as well

Kathy.

[Guest guest]

Dear Fran,

Thank you for your kind words of wisdom and suppport. I am printing

out the 12 pain tips because even if no one reads them at least I

know I am not going crazy. I have started working out at a local

athletic club because the doctor wants me to do water excerises and

yoga. I tried the yoga and thought I was going to die. But in other

ways it felt good to try and stretch. the instructor said I should

just do what I can and don't worry about keeping up with the class.

I don't sleep well at all and the Rhuemy said I should take a muscle

relaxer at bedtime. It has been about a week but not any improvement.

He said if it doesn't help to call him because he would give me some

pain meds. It is a catch 22. I don't want to take anything to strong

because I am afraid it will affect my work school and family, my kids

need me to function. But when I don't sleep well I am not in great

shape. Sometimes I feel like I just can't move at all and want to

cry.

The instructor at the health club asked me what I wanted to work on.

I said I just want to be able to keep moving. He kinda laughed. So, I

said no I am serious. I want to be able to keep moving. I don't think

he knew how to react.

I am sorry this is so long. I just feel better knowing that others

understand that life is important to live to the fullest the best you

can everyday. I plan to graduate college and get my teaching degree

within the next year. Tell your daughter that teachers can make such

a wonderful difference in a childs life. The children I work with

struggle everyday and they give me such hope and encouragement,

because they never complain.

Anyway, I will probably call the rhuemy soon to let him know about

the muscle relaxer not working and I'll check out about depression

medicine. I definitely can get very depressed when I hurt so much

that I wonder whether I will ever achieve my dream. I know I will

achieve it, I'll be 47 years old but that's ok.

Talk to you soon and stay well

Pat

[Editor's Note: Pat, I hope you feel better soon. You sure are going through a

rough spell. Perhaps physical therapy would be better for you than a laughing

instructor at a gym who clearly is clueless. And although it may take you to

age 47 to achieve your dream, you will some day be 47 anyway - so you might as

well be a 47 year old with a dream in her hand instead of a 47 year old with a

dream in the toilet. Wishing you wellness, Kathy F.]

[Guest guest]

Dear Pat,

Don’t feel bad about writing a long letter. That’s what we are here for and

sometimes it takes a long letter to get it all out or to just communicate

your thoughts. It’s not like we run out of paper here..lol. I’m glad you

liked the 12 pain tips and I hope your family does read them. Hopefully,

they will realize how the little things can make such a difference in our

lives. I think that usually helps me the most. When I finally sit down and

feel like every joint is going to scream if I have to get up again, and

realize I left something in the other room….when my husband shows up with it

before I can ask him, I’m so touched and thankful. I think the little

things help more than the large ones at times.

Anyway, I think Kathy is right about seeing a physical therapist who knows

PA and Fibro and how to help you. Another thing that really helped me and

is covered by my insurance is massage therapy. (My doctor was really happy

to write a prescription for massage therapy since it’s not drug related and

it’s another form of pain control that’s not going to hurt you.) Massage is

great for those days when you can’t even exercise, but at least your muscles

still get some kind of work out. The important thing is to find a

therapist to has many Fibro patients and who advertises that they know how

to treat Fibro. My insurance only paid for one massage a week, but it was

well worth it and it also really helps you relax. You actually feel like

you are doing something just for you too. It’s also amazing how a good

therapist will find spots you didn’t even know hurt, or how working out a

knot in one spot can help the pain somewhere else. Yoga is supposed to be

great for all sorts of problems and it sounds like at least your instructor

knows not to push you and let you go at your own pace. Hopefully, that will

help and you won’t feel any worse.

I wouldn’t wait to call my rheumy; I would call him now and just tell him

how bad you are feeling. Tell him you are feeling depressed from all the

pain and how it is affecting your daily life. If he is like the rest of

the medical field these days, he’ll be writing a prescription for

anti-depressants before you hang up the phone. I think they would help you

though and I know they really help me. I’m on Effexor 75mg 3 times a day.

My doctor just increased it from 2 times a day and I thought he was just

trying to shut me up…lol. Now I think it might have helped me some, so as

long as you don’t have any side effects they can really work wonders on pain

and of course depression. I’ve also noticed I have more energy too from

antidepressants. Hopefully, he will give you some pain medication as well.

I understand how you feel about not wanting to be “out of it” during the

day, and he should be able to give you something that won’t make you feel

that way. Even if you only take it at bedtime, it will help to just have it

on hand. If things do get bad during the day at least you have the option

of taking something.

As far as my daughter goes, I’m really proud of her and I know she has a

long road ahead of her. She loves children and loves to help them read.

She feels like she had so many bad teachers she already knows how “not” to

do it. I really worry about her being able to keep up with the kids no

matter what age she picks to teach. I know that is something she has to

decide for herself. I worry about her medication, but for her to function

at all she has to take something daily. All I know is she is on the right

track and hopefully life will give her a few breaks along the way.

Don’t worry about achieving your goals at the age of 47. Our society puts

way too much pressure on all of us to do it all and do it all at a young

age. We are supposed to be a great wife, super mother, have a career, keep

up a house, look great all the time, and do it all by the time we are 30. I

realized that “having it all” was going to be impossible once my children

were born and I was working. I finally came to the conclusion, that you can

have it all, just not all at the same time. I quit work when my children

were born and it was rough and some family members didn’t understand how I

could walk away from a career I had gone to college for. Everyone has

different priorities and I was lucky enough that we could manage on one

salary. I did work part-time on and off and when my children were old

enough I was able to work with my husband to start up our business. Now my

children are grown and both have just moved out and I’m experiencing empty

nest syndrome…lol. I wasn’t expecting this one, but I also didn’t plan on

being ill at the same time. I thought my husband and I would travel or

working together would be easier with just the two of us to concentrate on.

Unfortunately, PA had other plans for me and so we are all coping with the

changes in our lifestyle. Don’t be so hard on yourself, you sound like you’

ve worked really hard to get where you are today and you should be really

proud of yourself for not giving up. At least you have stayed with your

dreams regardless of what you have had to deal with.

Well I outdid you on a long letter this time..lol. Keep in touch Pat and

let us know what your doctor has to say. Hopefully, he can get you on

something to make life easier for you and slow down your PA from hurting

your joints. Write me anytime, since I’m home almost everyday and enjoy the

company. Good luck and be proud of yourself for not giving up. Love, Fran

[Guest guest]

Dear Zoella,

First of all, thanks for the kind words. My daughter and I do struggle

quite a bit, but if you pick your parents before you are born, she did the

right thing for picking a Mom who at least understands what she is going

through. Both of us have often talked about how miserable our lives would

be if we had been born into families who didn't' understand illness. When

I read about someone who says their parents don't understands it breaks my

heart. To me nothing would be worse, than to be ill and not have anyone

believe you. This is hard enough to deal with every day without having your

loved ones doubt you or think it's all in your mind. My daughter and I do

have our moments though..lol. If we are both out and both in pain, our

tempers usually start to flare at the same time. We get really snippy with

each other and usually end up laughing once we have sat down on gotten back

home. She has moved into her new apartment now and is about an hour away.

She has called me about 10 times today. I'm glad we got cell phones that

are free on long distance. Though with it ringing so much today, I was

ready to throw it in the pool..lol.

I'm glad you read the pain tips to Jimmy. He sounds like my husband too and

he also doesn't understand why the doctor's can't " fix " me. The pain really

bothers him too. He has gone to the pain doctor with me many times and told

him exactly what my days and nights are like. I think it helps the pain

doctors to hear from family members from time to time too. He gets so

frustrated, but he leaves all the medicine decisions up to me. We usually

discuss them, but it's always my decision in the end.

You are so right that something is always hurting. It's crazy really and

some days even I can't believe one person can have so many things hurt. I

had one doctor tell me that if you have really bad pain, it stops the little

pains from getting through. So in other words, if you cut off your foot,

you won't notice your headache any longer.lol. I have had that happen to me

in a much milder manner of course. I think that's one of the reason we have

pain all the time. We might get one thing under control and then our brain

lets in another thing that was actually hurting all along.

I also don't go into to everything with people I don't know very well. You

are right it is just too overwhelming to them and to me. I really think

people shut down after 3 things anyway. So it's not much use to even tell

them everything at once. I normally just say, it has changed my lifestyle

and I'm coping the best I can. If your friends don't understand that, then

they really don't get it. I hope you are having some luck getting people to

quit asking so much from you. I worry that you are doing too much and it

really wears you down. You just have to pace yourself or you pay for it so

much the next day, at least I do. Some days, I pay for it no matter what I

do and those days really tick me off.

I sure hope the Lasix helps you with the swelling. I wouldn't be walking at

all without water pills. I hate running to the bathroom all day long, but

it is worth it to help with the pain. You said a bone spur was causing the

pain in your leg? Is that bone spur on your spine or actually in your leg?

I also hope the pain pills help you too. You need some help with the pain

that's for sure. No one can do it all alone.

I'm glad you are so close to your mother. I was really lucky in that

relationship too. I still miss my Mom everyday and I don't think you are

ever ready to lose your parents no matter how old you are. My Mom had a lot

of health problems, mainly asthma all her life and yet she was always

smiling and laughing even when it took her breath away. I have some

wonderful memories of laughing with her until neither one of us could

breath.lol. I sure can relate to your Mom's pain of wanting to take your

pain away. I would be willing to have fibromyalgia for 100 more lifetimes,

if I could free my daughter of it this one time. But life doesn't work that

way, and as much as I hate her pain and her suffering, it has made her who

she is today. It's obvious that all of us don't take the easy road, but it

can be frustrating when you feel like things are out of your control.

Illness can sure do that to you when it's bad.

Has your doctor considered predinsone for the psoriasis? I can't imagine

being 80% covered and still able to function. I have it on my arm and legs,

but it's not too severe. When the itching starts though, I could really

scream. I hope yours isn't too painful and doesn't itch too much. That

seems overwhelming to me and you must be very brave to keep going and doing

so much with just that alone. Let alone all the pain and other problems you

are dealing with. Don't feel like you'll get an F in life Zoella. In my

book, you already have an A. Just from dealing with your disease and still

functioning and taking care of other people. Plus you seem like such a kind

person, and kind people always get an A in my book. Remember that we are

harder on ourselves than anyone else. So give yourself a break. It's ok to

get frustrated and upset. You'd have to be a saint to not let things bother

you, and no one can live with a saint.lol.

I hope you feel better soon and some of those new medications work for you.

Don't feel bad about writing long letters. I used to feel the same way,

until I got an email from telling me to quit apoligzing.lol. He said

if people don't want to read what you have written they won't regardless of

how long the letter is and in the meantime, everyone else loves to hear from

us. I really do miss and hope he is doing well and will be back with

us soon. So I get it all out now and I think it's the healthy way to write.

Thanks for the poem too. It is really pretty and I loved it. My daughter

writes poetry and I'll enclose one from her she wrote when she was ill and

only 14. (It is sort of dark since she was sad and in pain when she wrote

it. I'm sure a lot of us feel this way during painful times.)

Take care Zoella and write me anytime, ok? I really do care about you and

hope things improve soon.

Love, Fran

Run From Heaven

Fire in the sky and ice down below

Watch the earth die while you try to grow

Tears that you're crying fall to the grass

They burn like acid erasing the past

The fire in the sky will burn you down

When you run from heaven

You crash to the ground

And you hope the pain will just fade away

As you run from heaven, run from yesterday

Leaves in the wind blocking your view

Of the mistakes you've made

Of all you've been through

You want to move on and just get away

But you can't just throw it all away

But your life drifts by

You're sorry to see it gone

Your life has passed you by

But you can't seem to see where it went wrong

Mishler

*[title] " Run From Heaven " [pers.] Writing to me is an escape and one of the

greatest joys in my life. i I have the muscle disease Fibromyalgia and with

missing school, I often i found myself alone. I embarked upon writing. I

wrote this poem one night i when I could not sleep because of being ill. I

am now only seventeen and i starting college. This is my first piece of work

to be published, and at i least I can say something good came out of the

pain.

----Original Message-----

From: zoella bernard [mailto:purplezody@...]

Sent: Wednesday, August 04, 2004 3:09 PM

Subject: RE: [ ] Sorry this is long New Doc and New Meds

Fran,

I always read your email because it touches my

heart so. If only there was a way you and your

daughter could be pain free and in the best of health.

I, like others, admire your strength. I made a copy

of your pain tips and made Jimmy read it to try to

understand me. He is wonderful as far as the

psoriasis , which is around 80 % coverage and flaring

so red yet have scales all over the place. What , to

him and my closes friends, is why do I always have to

be in so much pain, and why can't the Drs. do

something about it. They are all in best of health

and should something go wrong they get a pill or shot

at Drs. then go on with their life. So different for

me. I imagine you are alot like me if it is not one

pain another pain shows up.

I thought most peoples psoriasis clear up in the

Summer but it sounds as if there are so many flares

and being bright red. I have been like this in a bad

flare for several months and it seems no matter the

med it will not improve. I just got back from my Dr.

because , like you and some others, I am suffering

with my left leg. It swells, and I can hardly walk on

it. My foot Doc. said Tarsal Carple Turnal, neuropthy

from my Diabetis , and big spurs all over, plus I have

a spur pressing on a nerve. My foot is almost dead as

far as nerves being damaged. I need to have surgery

on my foot but so afraid to with the Diabetis. I left

the Doc with a big sack of pain pills , muscle

relaxers, laxic 40 mg with extra Potassum. My

achilles tendon is inflamed too.

I imagine it is hard to tell others without our

health problems what all is wrong with you. I know it

is for me because there are so much they just can not

perceive the fact. My purse looks like a Doctors bag.

It gets so embarrassing doesn't it ? Yet, we need

the meds and our pain is real. I have had psoriasis

since the age of five, 46 years now. Pain has been my

life it seems. My Mother and I are very close due to

all my sickness and on being the only child. Her

heart has ached all this time for her Daughter and

wishes there was something to take away all this pain

and heartbreak of psoriasis. She said she wishes it

could of been her instead of me . I tell her it was a

good thing it was me because She just might of not had

me ! I don't want to miss this ride of life ! While

Jim and I were coming home I looked at Jimmy and said,

What , why, am I such a mess. Jim took hold of my

hand and said Zoella, this is a test . A test on life

as to how we respond to others and to life. I don't

want an F on my report card of life so I have to

accept myself and enjoy my love ones.

I know this is a very long letter , but before I

close Please allow me to send this short poem that was

hanging up in my Drs. wall.

I will be the gladdest thing

under the Sun !

I will touch a hundred of flowers

and not pick one !

I will look at cliffs and clouds

with quiet eyes,

Watch the wind bow down the grass

and the grass rise.

Blessings, Zoella

[Guest guest]

In a message dated 8/4/2004 6:18:02 AM Eastern Standard Time,

Pfried520@... writes:

Thank you for your kind words of wisdom and suppport. I am printing

out the 12 pain tips because even if no one reads them at least I

know I am not going crazy. I have started working out at a local

athletic club because the doctor wants me to do water excerises and

yoga. I tried the yoga and thought I was going to die. But in other

ways it felt good to try and stretch. the instructor said I should

just do what I can and don't worry about keeping up with the class.

Hi Pat,

If you are having a hard time with yoga, you might want to try

pilates...yoga was hard for me because there was so much stress on the legs and

arms, but

most of pilates is done using the strength in your abdomen, and most of it is

done laying down, on both the back and stomach...One of the benefits of

pilates is getting fluid in between the vertebrae, which helps reduce

stiffness.

My physical therapist recommended it when I " graduated " from PT because it

is a kind of continuation of the work they do with arthritis patients in PT,

which normally focuses on building core strength to take pressure off of the

extremities.

I sometimes have to drag myself to pilates, but I always feel better (less

stiff) once I leave, and it has helped me build strength and flexibility.

On the days when it is just too hard, I just tread water in the pool, which

also seems to relieve the pain and stiffness.

Hope that helps!

[Guest guest]

Hi Fran and everyone,

As I was reading your loving and caring words, it was bringing tears

to my eyes. Just then my husband came out and gave me a gentle hug

which I have needed for a long time but he had pulled away from me.

He said " I love you dear and will take care of things for you. "

Please don't worry anymore.

Between your words and his gesture of love and kindness, I felt a new

strength come to me. I can't explain it. I am ready again to face

tomorrow. Although, I have never met any of you, everyone on this

list has affected my life with words of encourgement and hope but

more importantly understanding.

This is the best group I have ever been involved with and everyone is

so sincere. I cannot thank you enough for touching my heart with your

kindness, for sharing my pain when you all suffer so much on your

own, and for being my friend.

Sometimes words reach you at just the right time, and your timing and

my reading your response was like magic.

All I can say is thank you from the bottom of my heart.

Pat

[Guest guest]

Hi Zoella,

I think you are looking good for an A in that report card. That mail was

excellent.

Hope things get better for you.

Take care,

.

[Guest guest]

Hi Pat and everyone else,

I just read your mail about the muscle relaxants etc.

Ive found the anti-depressant endep (amitriptyline) really good with

sleeping problems. They are a pain duller as well as an anti-

depressant and you don't feel really dopey the next moring like you

do on sleeping tablets.

They work so well that I only (usually) take one sustained release

(12 hours) pain killer first thing in the morning and don't have to

take another at night.

Exercise? Try Tai-chi! I've found it really good because you can

modify the exercises to suit your present level of pain/stiffness

agility etc etc. Even if you are having a real bad day you can still

do some modified exercises to help keep the joints mobile.

Hope this is some help

Suzie

[Guest guest]

Dear Suzie,

I've been wanting to try Tai-Chi for a long time. Can you recommend a book

or tape that I could use at home for beginners? Right now getting anywhere

is pretty difficult so I really need something I could do at home, so any

suggestions would be great. Thanks so much, Fran

PS I was on amitriptyline for years for fibromyalgia and you are right that

it works wonders on sleep, but it really can cause weight gain over time as

well. I think I put on almost 40lbs in 2 years when I was taking it, but it

was the only real down thing about it. Take care.

[Guest guest]

Dear Pat,

I'm glad my email got to you at the right time. I got one from the

other day that did the same thing to me. I actually printed it out and put

it up near my computer. That way when I'm down or having a bad day, I can

read it and realize that we all can help in some little way.

I was really glad to hear your husband is coming around. Now that he is

talking things might be a lot better. Men have a hard time with illness,

and it's funny when you think that most doctors are male. I know my husband

tends to keeps things inside and then just explodes, which is always fun. I

always ask him later, how he thought that would help the situation, but he

knows it doesn't. Some people just have a hard time communicating and it's

very scary to see your spouse get sick and worry you might be doing all of

this one your own. I know we worried about the finances when I quit work

and for a year I was on pins and needles about it all the time. Things have

improved and I've learned that they can function without me. Maybe not the

same way I did things or even the " best " way as I tell my husband, but

things still get done and life goes on. I sure hope it doesn't come to that

for you since you are still working on your dreams.

I think you will make it simply because you are so dedicated and have stuck

it out so long. If you were going to quit, you would have done it by now.

I'm so glad you found us and we could help. Write me anytime, ok? Hope

you have a pain free weekend, Love, Fran By the way, your email made me

feel pretty good too. So thank you.

[Guest guest]

Hi ,

I thought pilates would be a great exercise for me but I was wrong. I have

a bad back and it started to really spasm while laying on the floor and

trying this. I am know trying to get to the gym and do the stationary bike as

much as I could and then do some free weights. These do not seem to bother me

although my knees are killing me know from going two days in a row.

Janet

[Guest guest]

,

Thank you so much for the kind words you wrote

me. I have good and bad days . It seems more bad

than good. I really think the ones that derserve the

A's tho is the ones that live with us and still loves

us. I feel so lucky that I have a man that looks

beyond my psoriasis covering 80% of psoriasis, the

scales, and being moody at times when I hurt or

discouraged. I know it is not easy for any of us but

I really feel like people with psoriasis must be the

cream of the crop cause I have never met any more

caring group than what you all are.Blessings, Zoella

__________________________________________________

[Guest guest]

>Hi again everyone,

In answer to your question Fran,

I'm in Aussie Land so I can't really recommend a tape or book for

you.

I've been going to classes once a week. They are run by an

instructor from the Australian Academy of Tai-chi. There's only

three in my class so we get a really individual lesson.

I'll ask the instructor if she can find me a contact in your part of

the world.

I first found out about it from an arthritis workshop run by the

Academy so you might look-out for something similar.

There is a book called Healthy Joints (Healing Arthritis) written by

Grandmaster Khor.(Copyright Eastnor Pty Ltd)

The Web address for the Academy is www.livingchi.com.au.

E-mail address is aatc@....

The type of exercise for when we are 'not so good " is the QIGONG

FORM.

I haven't looked at the web address yet - I only found it when I

went looking for an address for you - it might be interesting!

I have fibromyalgia too. The weight gain info is interesting - I

thought it was from the prednisone only. As somone else said

recently - the catch 22 drug.

I'm currently waiting for my liver to repair itself (I hope) from

taking MTX. Arava seems to be the next trial drug for me.

If I can find out any more information that might help you I'll send

it ASAP.

Keep mobile and thanks for being here

Suzie.

[Guest guest]

Hi Zoella,

You wrote:

I really feel like people with psoriasis must be the

cream of the crop cause I have never met any more

caring group than what you all are.Blessings, Zoella

Now look what youv'e done. As if it wasn't bad enough having swollen

wrists,Knees, ankles,etc, now you have made all our heads swell too! Lol

Seriously though,

On behalf of everyone, thanks.