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For Kathy G

Posted by Sharon W on 6/11/03 at 22:55 (121612)

Kathy,

I was catching up on old posts and noticed this one by you:

'I was scheduled for a return appointment to the Rheumatologist for June 23rd. I received a notice in the mail saying I would need to reschedule. I called and they said, 'How about July 21st?'

'I said, 'You're kidding. I'm supposed to get a shot of cortisone in my hand and find out the results of tests.'

'Surprise, surprise. She found an appointment for June 30th! Had I not spoken up, I'd have had to wait all that extra time. I was nice about it but can you believe it?'

---------------------------

Good point, Kathy, about speaking up for yourself. People so often seem to look at it this way, when it comes to health care, 'My problems aren't as important as other people's problems. My doctors are doing me favors by agreeing to treat me at all... so I'll take whatever scraps of time and effort that they can spare for me, and accept whatever treatment they offer without question or protest.'

The truth is, the squeaky wheel gets the grease -- NOT the sickest patient -- and waiting meekly to see your rheumatologist would probably have meant more pain for you without helping anyone who is 'sicker'. By speaking up for yourself, you probably kept your treatments on schedule and perhaps even increased your ultimate chances for success. :)

By the way, I noticed the mention of a scheduled cortisone shot for your hand. I remember a post of yours some time back mentioning that your doctor was talking about carpal tunnel syndrome -- is that what the hand problem ended up being? Do you like the rheumatologist? How are your hands feeling these days? Has it gotten any easier for you to type? Do you have to wear wrist splints at night?

Whooh! Sorry about the flood of questions! :'>

I know this is a FOOT board, not a hand board, although I guess hands probably still qualify as a 'Social' topic... I was concerned about you, though, and curious about how you are doing with your hands and what treatments you've had that have been successful (or unsuccessful).

Sharon
:-?

Re: For Kathy G

Kathy G on 6/12/03 at 09:58 (121633)

Hi Sharon,

Thanks for much for your concern. I really liked the Rheumatologist. He was very thorough and acted like he had all the time in the world.

The bottom line is that I have Fibromyalgia, osteoarthritis and he says, the worst case of PF he's ever seen. He hasn't seen the people on this Board, I guess! Anyhow, after he rules out possible Spondylitis which I'm sure I don't have, he can make the arthritis in my CM joint much better by giving me a shot of cortisone. (CM joint is at the base of the thumb: the large bone that protrudes right above the wrist.)

He never even addressed the carpal tunnel syndrome but I suspect the Hand Specialist I saw was right. It's just mild. The tendonitis is also a factor. I'm assuming the cortisone will help that, too. He said that as the OA gets worse in my various joints, cortisone injections can be very helpful. I don't think he means for my fingers which have gotten much worse but I know it's an option for my shoulder.

Some days, my thumb and fingers hardly hurt; other days it's awful. My shoulder is mostly bad at night. I'm trying to be better about not doing stupid things like lifting heavy packages, opening jars, etc. but it's hard. I have very big hands and they've always been very strong. I hate to lose any of that strength. I need to talk to him about that. I still wear the same support that I wore for the tendonitis as he said it was excellent.

So, yes, it was a good visit and I finally got confirmation from a specialist that I don't have RA. It does get a little frustrating at times to have both my hands and feet hurting but he was very encouraging about the relief a cortisone shot would provide.

Thanks for asking!

Re: Sharon - about talking to doctors

Kathy G on 6/12/03 at 10:07 (121634)

My mother was a very sickly woman. I was involved in her healthcare from a very young age. Once, when I was fifteen, I stayed home from school because I was sure she had pneumonia which the poor lady got at the drop of a hat. Anyway, I put in a call to the doctor, whom I'll call Dr. Jones. A little while later, the phone rang and a curt voice said, 'Dr. Jones.'

I said, 'Oh, I'm sorry, you have the wrong number.'

In frustration, the doctor said, 'No, Kathy, this is Dr. Jones.'

I wasn't even trying to be funny! He was an excellent doctor but extremely pompous and formidable. Most people were afraid of him. Not me; I was too dumb!

So, I've been dealing with doctors themselves for years and I find that they are easy. It's getting to them through the office and nursing staff that is the challenge. We had a triage nurse at my PCP's office some years ago who made getting an appointment very difficult. It became apparent that her yardstick was if you were running a fever. In those days, I was usually calling for my daughter who has run a fever maybe five times in her entire life. But every time I talked to that nurse, I told her that she had a fever of 101. I got her in to see the doctor every time!

The games we play!

Re: For Kathy G

Sharon W on 6/12/03 at 19:25 (121684)

Kathy,

I appreciate you telling about your experience with the rheumatologist, because I was thinking perhaps that should be my next move -- to ask for a referral to one. I know that they are supposed to be experts in auto-immune diseases, at least SOME of them are, and that might turn out to be just what I need right now. (So far all the tests to figure out what's causing my neuropathy have come back normal, and it's very frustrating...)

I hope the sortisone shot in your hand will help to relieve your pain and other symptoms. I know what it's like to have to try to cut back on your typing! (I'm really not very compliant on that one...)

You said, 'Some days, my thumb and fingers hardly hurt; other days it's awful. My shoulder is mostly bad at night. I'm trying to be better about not doing stupid things like lifting heavy packages, opening jars, etc. but it's hard.'

That sounds VERY much like what happens with my hands. Of course, I'm on Neurontin, and that helps to mask a lot of the pain -- but I still get pain in my hands and my shoulders whenever I

Re: For Kathy G

Sharon W on 6/12/03 at 19:31 (121686)

OOps! Looks like I cut off that last sentence somehow. (It's hard to delete things accurately when you have problems controlling your hands...)

Anyway, I was saying that I have pain in my hands and my shoulders (it is not uncommon with carpal tunnel to have 'referred' pain in the shoulders, and maybe that's what this is) whenever I'm a little bit late in taking my Neurontin. (I've read that it's not uncommon with carpal tunnel to have 'referred' pain in the shoulders, and maybe that's what this is -- carpal tunnel can be linked to peripheral neuropathy.)

I do love Neurontin -- not its side effects (like forgetfulness!) but I love the amount of pain relief I get from it. If I take it regularly I hardly ever have problems with the 'referred' pain in my shoulders.

Sharon
.

Re: Sharon - about talking to doctors

Sharon W on 6/12/03 at 19:43 (121691)

Kathy,

I know what you mean. I am usually able to get along with 'curt' doctors, believe it or not -- of course, I don't have the advantage of being an adorable young girl, like you were!

And you're right, it is often the case that an over-zealous receptionist or appointment secretary will refuse you the access you need to your doctor, even though you KNOW your doctor would agree to see you if anyone ever asked her! My doctor knows that I don't make appointments for trivial reasons, that I'm always able to present her with a reasonable collection of symptoms to explain why I brought my daughter (or my husband, or myself) in to see her. But she has a couple of receptionists who sometimes answer the appointments phone that are NOT so cooperative!

You were smart to always tell that nurse that your daughter has a fever. It always helps if you have the ability to size people up, figure out 'where they're coming from,' and talk to them on their own terms if you can.

Sharon
:D

Re: For Sharon

Kathy G on 6/13/03 at 10:12 (121746)

Yes, I think a visit to a Rheumi might be a good idea for you. The problem is that many of them don't recognize Fibromyalgia and may just treat you as Pam was. (See her post above.) My Pod specificially recommended this particular specialist to me because he had prior experience with him and knew that he recognized and treated Fibro. I was unofficially diagnosed with Fibro over ten years ago but I confess, I was one of those people who didn't think it existed. Over the years, my PCP has been adding meds that treat it despite my assertion that I don't believe it exists. The drugs he's given me are for treatment of the particular symptoms of this condition I don't think exists! :'>

I think my denial came from the fact that the two people I know who have Fibro fit every stereotype of the neurotic hypochondriac. I was afraid that I'd fall into that same pattern but it hasn't happened so I guess I should just accept the fact I have it with grace. And I honestly believe that I've had it since I as about sixteen so all it did for me was to give it a name. For them, it was a new condition and that probably made it harder to accept. Not to appear to be a martyr or anything, but I have ached in some part of my body every day for as long as I can remember. Being given the cause of those aches doesn't really serve a whole lot of purpose.

What specialists have you seen for your carpal tunnel? Has anyone mentioned Rheumatoid Arthritis to you? Have you ever taken a muscle relaxant at bedtime?

As for the Neurontin, my brother in law has a lousy condition called Piriformis Syndrome. He developed it a couple of years ago following surgery for a synovial cyst on his spine. The piriformis muscle is exerting pressure on his sciatic nerve and he has constant pain. He is now at his second pain clinic. He currently takes the maximum doseage of both Ultram and Neurontin and I don't think he could function on less. (He keeps trying.) As it is, he still has pain. This is a guy who never took more than a tylenol and has kicked and screamed the whole way to this treatment plan. But he's also exceptionally intelligent and he has come to terms with the fact that if this is the only way he can live a relatively normal life, then he will take the drugs. He swears by Neurontin but like you, he says if he misses one dose, he pays for it. He's tried that, too!

How long have you had the carpal tunnel? It's in both hands? And you wear splints, right? You've had PT?

If you don't want to answer all my questions on the board, feel free to email me at d m m 0 3 0 @ a o l. c o m, without the spaces, of course. Just make sure you identify yourself in the subject line. I delete emails if I don't know who sent them!