Help

[Guest guest]

hi. its very hard to cope day to day. at first you have to accept what

has happened to you. it took me 2 years to realize this is no quick

fix,, talk to your family members and try to explain whats going on with

you. its very hard but they will try to help. i had to i have 6 kids.

take things day to day, and as for your doc, go get another opion from

another doc. you have that right. find one that will help you. it

seems the doc you have now does not care. pain i found is the worst

thing a person can have. day to day tasks are hard to do.

i have back pain from an injury 3 years ago, l3 l4 l5, torn, bulged,

ripped no surgery. also rite hip has a floating bone chip.. and

osteoarthrits has set in and i just found out 2 days ago hip has

osteoporosis. this group has been very good to me and others. they will

give u ideas how to cope. you made your first step on how to cope with

pain day to day, you joined this group of angels,,,,,, brenda lee

painless3402 wrote:

My question is this...how do I cope with my daily activities and stay

sane?

[Guest guest]

Lee,

I so can relate to your trouble. I am older and don't have the stimuli of my

kids anymore and it makes me sad. Enjoy them to the best of your ability.

My pain is almost exactly what your is. I have a blown out T12 and

osteoarthritis all over my body. But, I have been fortunate to be retired on

SSD. Of course, I worked my whole life. I am 61 and worked with all this for

about 13 yrs. I finally couldn't stand it anymore plus I was not productive

anymore at work so I think they were glad to unload me. I can't imagine taking

care of all those childern. Are they older or little ones? God Bless you girl.

donna

[Guest guest]

<<My question is this...how do I cope with my daily activities and stay

sane?>>

Hello ,

I really don't have an answer for that question but wanted to say that I can

relate. I try to go on as normal as possible too and I think that is the ONLY

thing that keeps me sane (but that is questionable too). I have days where I

feel like I'm going crazy and am going to loose it, and on those days I just try

and be good to MYSELF. I focus on ME only and let the rest of the world do its

thing, while I just curl up in bed and wait until I can " deal " with life again.

I know most people don't have this luxery and usually I don't either, but we

have to learn to make time for ourselves and our own needs.

How is Flexeril working for you? I can't take the stuff, it knocks me out for

days and puts me in a horrible mood. It does work for spasm though. Hope it

works good for you. Why did you Doc take you off pain meds? Surely he knows you

need SOMETHING for pain!!!

I work full time, go to school and take care of a 4 yr. old. So I know all about

having to function daily when in severe pain (Fibro, shoulder cysts, arthritis,

bulging discs etc...). I just try to convince myself and have a little faith

that I can do it and when the day is over I can't believe I actually made it

through another day. But YOU WILL MAKE IT!

Hope everything works out for you. The beginning of pain is sometimes the

hardest because its a whole new world to have to deal with. Not that you ever

get used to it, but the shock at the beginning can last a while.

Take care,

Caitlin/AR

[Guest guest]

" Have you tried 1/2 or 1/4 doses of the Flexeril? "

Hey ,

I have tried 1/4 ing them and I still get very grumpy. Sometimes I take them

anyway, because the spasm get so bad. But only rarely. Actually I take Zanaflex

and it works okay, but only at bedtime because it knocks me out too. Go figure.

Thanks,

Caitlin

[Guest guest]

I take 3/4 dose of the Flexeril. That seems to be ok. A full dose at bedtime

and I am toast until 11 or 12 in the afternoon. I couldn't imagine taking it

during the day.

[Guest guest]

I take 3/4 dose of the Flexeril. That seems to be ok. A full dose at bedtime

and I am toast until 11 or 12 in the afternoon. I couldn't imagine taking it

during the day.

Me either...I would be asleep at my desk. And I would be biting people heads

off. Not good.

[Guest guest]

wrote:

> I take 3/4 dose of the Flexeril. That seems to be ok. A full dose at bedtime

and I am toast until 11 or 12 in the afternoon. I couldn't imagine taking it

during the day.

It is no wonder that doctors don't know what to prescribe for chronic pain

people.

When I take Flexeril, it has about as much affect on me as if I'd had a mint

candy. Same with Soma.

Go figure.

--

Lyndi

[Guest guest]

Ok...I have been reading all these and started wondering if I was a TOTAL

oddball! Flexeril is absolutely worthless to me.

Blessings, Lori

on 12/15/04 5:43 PM, Lyndi at lyndi@... wrote:

It is no wonder that doctors don't know what to prescribe for chronic pain

people.

When I take Flexeril, it has about as much affect on me as if I'd had a mint

candy.

Go figure Lyndi

[Guest guest]

Hi there! Hope you are all well. I'm kind of at wits end and would love to get

some ideas

from you all if possible.

My son is 4 and 1/2. We've been chelating with EDTA on and off for

about a year

and a half. At the same time, we were suppressing a Herpes Simplex Virus with

Valtrex. He's

currently on Diflucan and while he's made great gains since we started, I feel

like we are

screeching to a halt.

We've got lots of echolaia and spinning again. We haven't had this in a long

time. We've been

on three lac for about 6 weeks and I haven't added anything else different.

He's also shaking his head back and forth which we haven't seen since the

beginning.

Anyone had this experience? I'd appreciate any thoughts or suggestions. Our

DAN is

fantastic but I feel like I need to be doing my homework too. =)

Thank you so much!

Ali

[Guest guest]

Hi

First of all I am so sorry that you are suffering as much as you are.

I personally wouldn't even consider going privately unless you have private

medical insurance. (1) because stills is an ongoing illness and the expense

would be enormous as you have to pay for every little bandage plaster etc.

and (2) I think you would certainly get feeling that you are an individual

instead of all herded together as in the NHS but I am not convinced that

their medical knowledge is any better just that you are treated as a human

being.

I don't know of a Specialist that deals only with Stills as I think all this

type of illness comes under Rheumatology. I did find taking notes with

everything that was bothering me at the time of visit, especially helpful if

symptoms were occurring the same time daily, having more pain in the morning

for example. It is so easy to forget during the consultation if you have not

made notes, and it is so frustrating when you leave and suddenly realise you

have forgotten something important.

I live down South and I go to St.s hospital which is a teaching

hospital and I have had very good treatment. The one thing that I don't

like is that because it is a teaching hospt. The doctors change every 6

months so that you seldom see the same one, mind you that can also be an

advantage if you don't happen to get on with one you know he won't be there

next time you go.

I do hope that your appointment on the 10/11 is better than your last one

and you come away feeling you have had a better consultant.

Thinking of you

Joan UK

[Guest guest]

Hi Joan,

I'm not that happy with going private either, I think my dad is just so worried

about me, I look like death warmed up and that is on a good day, I must admit i

am feeling a lot brighter in myself, just need to crack the high temp and

tiredness now.

I went to my childrens harvest festival on Friday, I siezed up and had to get

help, it was funny but not if you know what i mean. When i got home i felt like

i had run a marathon.

I used to be in Bupa but i stopped when i saw the same doctor but just 3 days

quicker oh what to do, I'm going to see what happens in Novemeber fingers and

toes crossed I will get the help I need and I can finally get out of my prison

of a house and back to some form of normality.

We have St 's Hospital in Leeds which is a teaching hospital so maybe that

might be the way to go.

A few others have said about getting a book to put things in, I never thought of

that, It's a great idea also stick photo's in it so i can show the rash, simple

things like that I have never even thought of.

Hope you are feeling well at the moment and this cold weather is not causing you

too much pain.

Much love

Rach x

>

> Hi

>

>

>

> First of all I am so sorry that you are suffering as much as you are.

[Guest guest]

Hello ,

I don't want you to feel that I am trying to put a dampner on going private,

but you have to be careful and read the small print because a lot of

Companies won't treat chronic patients but they don't make it very obvious.

Anyway if you do find an Insurance Company who will cover Stills, good luck

to you.

I am sorry that you were not able to enjoy your childrens harvest festival.

I know just how you feel as we were at my grandson's prize giving and it was

so hot in there I felt myself beginning to feel faint, fortunately my

husband was there, so I leaned on him and went out, but everyone stared and

I hated it. I do get cross with the dragon at times it is so frustrating,

especially as you look ok.

It reminded me when it was suggested to keep a book, it is really helpful,

but for me the photos that were taken of my rash proved very useful. The

rash was absolutely everywhere really really bad. Anyway I was in hospital

when the Rheumy came and said that in the room where the dais was for

students to all sit round to take notes etc were some very important

Consultants from different hospitals and they had my pictures of my rash

and would I be prepared to go and answer questions they would ask me. At

first when I went in I was petrified but I thought get on with it, anything

to help the progress dealing with advancement of the treatment of Stills

They asked me so many questions but I didn't mind as they were genuinely

interested, taking notes etc. It made me feel better because sometimes I

wonder if anybody is working on further medication and help, but they are.

I have gone on a bit - sorry about that, my husband says " what do women find

to talk about " put two women together and you could go out for a drive and

come back and they wouldn't notice.

Hope your temperature has come down a bit and the fatigue is not too much of

a nuisance at the moment.

Love

Joan U.K.