I go to the Rheumy today...don't know what to say

[Guest guest]

Today I go back to the DR. I am still having terrible burning in my

knees/ankles during and immediately ascending the stairs (many times

I have to have my husband help me up them...I am 36 years old...). I

guess I don't know how much pain I should be able to take before I

ask for more help. I have been on diclofenac sodium (Voltaren) 75mg

2x's per day for 8 weeks. Any help or suggestions would be VERY

appreciated.

Thanks,

Sandy

[Guest guest]

Sandy,

This is just my opinion. If you need the help of someone else to get

up from point A to point B (even if is going upstairs and even if it

is only occasionally) then you need more relief than you're getting.

I would tell the doctor what kind of mobility problems you are

having and ask that he treat you accordingly.

I do hope you get some relief. I don't have it as bad as you but I

do understand the frustration of not being able to get around on

your own.

Pamela

[Guest guest]

Hi Sandy,

First off, I'm not medically trained, only someone with PA.

There is NO reason you have to endure the pain you describe. Tell

your doctor the drug you are on is not helping. If you are seeing a

GP, get a referral to a Rheumatologist. If your Dr, is a

rheumatologist, he/she should be well aware of the many NSAIDS that

can help alleviate pain. Also, I strongly believe that NSAIDS while

necessary, are not the only answer. I believe you must go after what

is causing the the pain, as well as treating the symptom. In most PA

cases, this means MTX, Enbrel, etc.

You have so many options, do not continue to accept pain as part of

your daily life. Read as much info as possible, Talk to your

rheumatologist, get all the facts, make informed decisions.

Sorry if this all sounds strong & blunt, but the sooner you take

control of your own well being, the sooner you are likely to find

relief.

I wish you well.

Stay Well,

[Guest guest]

Thanks for the support. I told him if I had one wish it would be

that my knees didn't hurt so badly. He said " Let's try to fix

that " . He sent me for knee x-rays and interesting thing is that he

put me on Plaquenil. He thinks I have a 'baker's cyst' in them. The

Plaquenil is the same drug that is now being discussed. I am

confused. I am on Voltaren and Plaquenil now. I am afraid I will be

taking this and it won't work.

I think like most, I don't know when I should complain about pain and

when to 'suck it up'.

I am very interested in hearing other people's experiences.

Thanks much,

Sandy

[Guest guest]

Thank you , I did approach the subject and he put me on

Plaquenil and Voltaren and took knee xrays. I do feel silly

complaining, but I have had very painful knees for 8+ years. I am

glad that I finally went to see the Dr. He said it may take several

months.

What a nice group of people. I am glad I logged on.

Sandy

[Guest guest]

Hi Sandy,

I was started on Voltaren about 2 months ago. It was the last

resort NSAID. It didn't make difference with either. I am now on

Plaquenil, along with the Voltaren. I'm hoping to get some relief,

but the Voltaren didn't work that great for me either. I hope your

rheum is willing to try to other options. I think if it was going

to make a significant difference it would have by now.

Good luck!

C:)

> Today I go back to the DR. I am still having terrible burning in

my

> knees/ankles during and immediately ascending the stairs (many

times

> I have to have my husband help me up them...I am 36 years

old...). I

> guess I don't know how much pain I should be able to take before I

> ask for more help. I have been on diclofenac sodium (Voltaren)

75mg

> 2x's per day for 8 weeks. Any help or suggestions would be VERY

> appreciated.

> Thanks,

> Sandy

[Guest guest]

Sandy,

These are just my thoughts. If I knew beyond a shadow of a doubt

that nothing was wrong with me or that the pain was brought on by

something I did (such as over exercise) then I wouldn't complain

about occasional pain.

But I know for a fact that I have a crippling disease and that pain

is my first indicator that things are not right with me. And I know

beyond a shadow of a doubt that my pain is not brought on by

anything I am doing. So for that reason I don't think I should just

remain quiet about the pain. I need my doctors to know and

understand that I am still in pain and this pain is directly related

to my condition.

Hope that helps and I sincerely hope you knee gets better soon.

Pamela

> Thanks for the support. I told him if I had one wish it would be

> that my knees didn't hurt so badly. He said " Let's try to fix

> that " . He sent me for knee x-rays and interesting thing is that

he

> put me on Plaquenil. He thinks I have a 'baker's cyst' in them.

The

> Plaquenil is the same drug that is now being discussed. I am

> confused. I am on Voltaren and Plaquenil now. I am afraid I will

be

> taking this and it won't work.

>

> I think like most, I don't know when I should complain about pain

and

> when to 'suck it up'.

>

> I am very interested in hearing other people's experiences.

>

> Thanks much,

> Sandy

[Guest guest]

Dear Sandy, One way to decide if you pain is bad enough to complain about is

think about how it affects your daily life. If you find yourself not able

to do simple things that you used to do then you need to tell your doctor

about it. If when you wake up you can’t move for an hour or more, you need

to discuss it with your doctor. If when you go to sleep the pain wakes you

up at night or you find you can’t sleep from the pain, then I would tell my

doctor. Most of the time once pain starts affecting your daily life and you

find yourself saying “No” to activities that you normally would do or you no

longer can do things you love, then it’s time to find something to help

yourself. Don’t worry about looking like a wimp, arthritis is painful and

all doctors know this. Most rheumatologists don’t talk about pain much so

you have to bring it up to them. Lets face it, if there wasn’t pain with

this disease a lot of us wouldn’t even go to the doctor. There would be a

lot of us that would never know something was wrong until our bones had all

turned to jelly, so pain does serve a purpose. It’s when it gets to be

chronic, day after day, without a break, and constantly affecting your daily

activities you find you will need help. If your rheumatologist won’t help

with the pain, then seek out a pain control specialist.

As far as Plaquinel not working, it didn’t help me at all and I was on it

for over a year. But I’ve noticed that a lot of people on the site have

stated that they have had great results with Plaquinel so hopefully you’ll

be one of those.

By the way, I’ve had a Baker’s cyst behind my knee and they are painful.

They are also really common with RA and since PA is so similar it only makes

sense we would be more likely to develop them as well. With the Baker’s

cyst you can normally feel a lump that is extremely painful to touch behind

your knee. They can get really big and then they have to be drained. A lot

of the time they just go away, luckily mine did and I hope your does too.

Sometimes it helps to write down what you want to discuss with your doctor

before you go to see him too. Doctors can be very intimidating and it’s

easy to forget what you need to ask them. I almost always have a list

anymore because I always forget and the doctors are always in a hurry. I’ve

also noticed that doctors can’t seem to handle more than 3 things at a time.

Questions aren’t the same, but if you have more than 3 things wrong at once

they sort of just veg out. I don’t know if they think we are chronic

complainers if more than 3 things are wrong with us at once, or they just

can’t handle more than 3 things per patients. So I try to limit my main

problems to only 3 things, but there are lots of times I have more questions

than that. Since we take so much medication, there are a lot of questions

on that alone.

I hope some of this helps. Don’t be afraid to tell your doctor what is

wrong or where or how bad it hurts. Remember he is working for you, not

doing you a favor. Take care and good luck. Love, Fran

[ ] Re: I go to the Rheumy today...don't know what

to say

Thanks for the support. I told him if I had one wish it would be

that my knees didn't hurt so badly. He said " Let's try to fix

that " . He sent me for knee x-rays and interesting thing is that he

put me on Plaquenil. He thinks I have a 'baker's cyst' in them. The

Plaquenil is the same drug that is now being discussed. I am

confused. I am on Voltaren and Plaquenil now. I am afraid I will be

taking this and it won't work.

I think like most, I don't know when I should complain about pain and

when to 'suck it up'.

I am very interested in hearing other people's experiences.

Thanks much,

Sandy

[Guest guest]

Hi Sandy,

Are you seeing a Rheumatologist or GP??

When I first started this merry go round, I had x-rays,MRI etc and

was also told by my GP I hads a baker's cyst (seems a common thing

folks are told). The Rheumatologist is the doc that will be much

more helpful if what you really have is PA. FYI, I was never treated

for " my baker's cyst " but was treated for PA. I take 10mg of MTX

weekly, no more pain, no side effects. I also do not have a baker's

cyst anymore.

Stay Well,

[Guest guest]

>

> I think like most, I don't know when I should complain about pain

and when to 'suck it up'.

Sandy,

I don't post often, but when someone tells you to " suck it up " they

are being cruel.

PA is a dreadful disease and it is painful, but people can't SEE it

so they think we are " pretending " sometimes when we say we are in

pain.

If your doctor will NOT give you enough medicine for your pain,

change doctors if YOU CAN.

I did, and now I have SOME quality of life.

Good luck,

Debra J