Update/vent/rather long, I'm afraid!

[Guest guest]

Hi all

Just thought I'd write to say what happened on Tuesday when I saw a

local Rheumy - to be honest, it was more than a little frustrating. The

doc had been sent a completely out of date and rather misleading letter

by my GP, so she started out with all sorts of pre conceived ideas

which were way off the mark. So I started by explaining that I wasn't

taking anywhere near as many drugs as the GP had written. Then the doc

spent a full 20 minutes telling me that my main problem was

fibromyalgia, even though I tried to explain that I do not get muscle

pain, just joint pain. The doc then said she'd prove I had fibro by

pressing on 22 different points on my torso which would be tender if I

had fibro. None of them were tender. She was very embarrassed. Then she

lectured me on the problem of Chronic Fatigue and disrupted sleep

patterns, that she had decided that I was suffering from. I tried to

explain that I am tired - because my joints hurt all the time and I

have an average temp of 38.4. I actually sleep OK except when the flu

like feelings wake me. But she was on a roll and I had to restrain

myself from losing my temper. She did not check, or even discuss, the

problem of the raised temp and did no physical examination at all,

apart from trying to 'prove' I have fibro. I flew to Australia, for

heavens sake. Could I do that with CFS? It would have taken me days to

recover. The truth is that I can either do stuff or I can't, depending

on the level of my pain and aching. Resting for days before an event

makes no difference as I could just as easily feel dreadful on the day

anyway. I hope this isn't turning into a rant. I'm really trying to

explain, as much to myself as to you guys.

At the end, she told me to keep taking the painkillers and come back in

3 months. I don't think I'll bother. What's the point? I am at a

complete loss as to where to go from here. Keep popping the pills until

I can cope no longer, I suppose. I'm very tired of trying to get help

and being unable to do so. Maybe it's me. Perhaps I'm mad. Now there's

a possibility!

But I don't want to paint a completely black picture. Apart form dodgy

health, life's pretty good. , my husband, is the best ever. We

are celebrating 15 years marriage this June and I still feel like a

newly wed! The children are wonderful and at a great age - 9, 8

tomorrow and 5. Tomorrow we'll have party tea for our daughter. I love

their birthdays! On Saturday we are having a family day out to London

Zoo, which will be great fun I expect. I fact, I'd better end now as I

have promised her a 'zoo cake', complete with animals which I shall

borrow from the 5 year olds toy box!

Thank you for listening. I know many of you understand my frustration.

I've made some good friends here and I'm grateful. If you ever come

over to the UK, I'll buy you lunch...

Love

C 2 (UK)

[Guest guest]

(((((((((((((((((((((((C 2))))))))))))))))))

So...the only meds that you have been given a script for are pain meds?

Yes, pain meds are often very much needed when trying to "quiet" the Stills

"dragon," but...to keep destruction at a minimum, and hopefully get into

a remission...one needs more. ..and that's why we go to see a Rheumy,

or some other doctor...for "help" in doing this. Did she order any blood tests?

Is it possible to make an appointment with a different rhuemy in the area,

or even go back to your GP, and explain what happened..?

I am happy that you have a wonderful husband and children too! Yes, that is

very much a blessing and to be enjoyed to the fullest, but when one has Stills,

it can sometimes be almost impossible to make and keep plans with those

we love do to the unpredictable "sick" days. It's bad enough when we take meds

to keep it under control as much as can be, but even more frustrating when we

aren't given the correct meds to do even this.

Hopefully you will get the needed medical help soon. Feeling sick can and

many times does "rob one of proper rest and good night's sleep.

Please keep us udated, we are here for you my friend.

Wisconsin U.S.A.

Tricia

p.s. *If* I ever get to the UK...I'll take you up on that lunch offer!

-- Update/vent/rather long, I'm afraid!

Hi allJust thought I'd write to say what happened on Tuesday when I saw a local Rheumy - to be honest, it was more than a little frustrating. The doc had been sent a completely out of date and rather misleading letter by my GP, so she started out with all sorts of pre conceived ideas which were way off the mark. So I started by explaining that I wasn't taking anywhere near as many drugs as the GP had written. Then the doc spent a full 20 minutes telling me that my main problem was fibromyalgia, even though I tried to explain that I do not get muscle pain, just joint pain. The doc then said she'd prove I had fibro by pressing on 22 different points on my torso which would be tender if I had fibro. None of them were tender. She was very embarrassed. Then she lectured me on the problem of Chronic Fatigue and disrupted sleep patterns, that she had decided that I was suffering from. I tried to explain that I am tired - because my joints hurt all the time and I have an average temp of 38.4. I actually sleep OK except when the flu like feelings wake me. But she was on a roll and I had to restrain myself from losing my temper. She did not check, or even discuss, the problem of the raised temp and did no physical examination at all, apart from trying to 'prove' I have fibro. I flew to Australia, for heavens sake. Could I do that with CFS? It would have taken me days to recover. The truth is that I can either do stuff or I can't, depending on the level of my pain and aching. Resting for days before an event makes no difference as I could just as easily feel dreadful on the day anyway. I hope this isn't turning into a rant. I'm really trying to explain, as much to myself as to you guys.At the end, she told me to keep taking the painkillers and come back in 3 months. I don't think I'll bother. What's the point? I am at a complete loss as to where to go from here. Keep popping the pills until I can cope no longer, I suppose. I'm very tired of trying to get help and being unable to do so. Maybe it's me. Perhaps I'm mad. Now there's a possibility!But I don't want to paint a completely black picture. Apart form dodgy health, life's pretty good. , my husband, is the best ever. We are celebrating 15 years marriage this June and I still feel like a newly wed! The children are wonderful and at a great age - 9, 8 tomorrow and 5. Tomorrow we'll have party tea for our daughter. I love their birthdays! On Saturday we are having a family day out to London Zoo, which will be great fun I expect. I fact, I'd better end now as I have promised her a 'zoo cake', complete with animals which I shall borrow from the 5 year olds toy box!Thank you for listening. I know many of you understand my frustration. I've made some good friends here and I'm grateful. If you ever come over to the UK, I'll buy you lunch...LoveC 2 (UK)

[Guest guest]

C2,

Please don't feel bad about telling us how you feel, after all thats what we are here for. You are not alone. I am glad that you have a wonderful "family" support team behind you, but you also need a supportive doctor team as well. You have to find the right doctor for you, keep searching untill you find some one who validates your feelings, and Listens. Keep your chin up, and try to have fun at the zoo and birthday tea.

Take care,

LJ in NJ