Polymyalgia Rheumatica....what the....?

Finally today they returned my 6 calls. The Rheumy still isn't 100% that I have Fibro. Even after being Rx by 5 other Docs since last year. They say they "think" it's probably Polymyalgia Rheumatica. But couldn't tell me what it was or anything else. So I looked it up online. It most often also goes with/causes Giant Cell Arterititus that cause all kind of stuff including blindness if not treated.

So they are putting me back on prednisone which they tell me is the ONLY thing to help it.

Still didn't totally rule out having Lupus also. But said the Hep C came back that I don't have it. (I knew I didn't but you always worry when they do stuff like that.)

This is all so mind boggling and confusing. I was RX by 5 Docs and 3 PTs. I DO have the symptoms of Fibro, but now this guy says no. I'm sorry but Poly hoochie magigger doesn't have Fog and loss of concentration, etc. And I DEFINATELY have that!

I don't like Prednisone. They put me on it for 3 weeks last month and I gained another 11 pounds. UGH!! I can't even put socks on anymore! (Not that I wear socks this time of year.)

I'm just so confused. It seems like the more it looks like I will have more answers, the questions and everything changes and I don't know where I am. I have 16 of 18 tender points of Fibro.

I just don't know, and I'm really foggy and fatigued right now. Have to go to town (25 miles) to get my prescriptions. Maybe I'll be better when I get back. Just venting I guess.Don't know what or who or where right now.

Pamela {please}

I wish tons of love and hugs!

Favorite sites besides MDJunction:
http://www.invisableillness.com
& the Fibro Store at:
http://www.cafepress.com/artisticability

I also don't understand why they are going to treat you for something when they are not certain that this is what you have.

I hope I never get Polymyalgia Rhuematica because that Prednisone makes my stomach hurt terribly.

I hope they figure out what is going on with you soon. Wow, you have a long drive to get prescriptions. Geez with the price of gas these days you don't need that.

I guess you will have another appointment soon with the rheumy to discuss whats going on?

When I had my appt with the Rhuemy he said when he got the test results he'd send them and our 'plan of treatment' to my reg. Dr here locally and that my reg Dr would be the one to treat me. So I suppose that was part of why I was so confused over it all. Said one thing, doing the opposite.

I also tend to feel like he's using me as a guinnea pig. I looked up Polymyalgia Rheumatica and there isn't much for information.

Here is a REALLY weird thing. The prescription bottles here NEVER say what you are being treated for, but he had it put on the bottle. It says Systemic Infammatory Disorder. So I searched it, and the only thing I could figure is that it's mispelled and should be infLammatory in which case that covers things like Lupus...which he's claiming I don't have. (So why that treatment!?)

I'm beginning to think when you go to a new Doc they begin at step one and ignore all the other Doc reports and just start at the beginning of their guinnea pig list of looking for what they want to try to treat.

Today my Brother is having a BBQ and family. I wanted to go but DH doesn't feel up to the drive. My family is in the next State. My brothers place is a 2 hour drive. He's got his daughter this weekend. DH doesn't like me to make those long drives as he knows how tired I get and how a lot of times I sleep on the way home. Some times I'd like to just hop in the car and go. But I haven't had that 'type' of freedom since I was single(Divorced). Didn't used to bother me quite so much, but now that my brother is back from active duty and disabled, the weekend trips my folks and son used to make up here are now used to go and help my brother. I don't resent it, we have always been a close family (except the 12 years he was married to the witch) and I want to be with them. I love helping my brother out and doing little things for him and his little girl when he's got her for visitation.

Gotta go feed the calves, will be back later.

Pamela {please}

I wish tons of love and hugs!

Favorite sites besides MDJunction:
http://www.invisableillness.com
& the Fibro Store at:
http://www.cafepress.com/artisticability

To me it just seems like they are trying to start all over at square one and not even looking at my already diagnosed stuff. And I sure don't want to repeat this past year. Too bad you can't go to one Main Specialist who can do it all and if you have to see individuals for the treatment, so be it, and they will listen to the Main Specialist! That'd be nice!!

Hope everyone is having a good weekend. I'm going to try and get my tomaot plants in the ground today and if I have energy left, plant my sweet potato plants.

Lots of hugs

Pamela {please}

I wish tons of love and hugs!

Favorite sites besides MDJunction:
http://www.invisableillness.com
& the Fibro Store at:
http://www.cafepress.com/artisticability

Was away for a couple of days, you didn't sound whiney.

You must live out in the stix I guess, I could never do a drive like that in one day. It's a shame you are so far from your family. Is it possible to stay overnight & get some rest before your trip back home or would that leave your hubby & son without you to long.

I do hope the med helps you & you feel a little better soon.

good luck

hugs all around

teri

Look at this web site...You are not that old and they said that the people that are DX with that is not younger that 70's old...

http://www.rheumatology.org/public/factsheets/ pmr_new2.asp#1

Hugs,
Barb
God will never give you more than you can handle!!
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We all have time on our hands...be productive and help others!

Yep, I live in the sticks for sure, but I love it. Nothing close, but living on top of the mountain you can hear people's dogs barking echoing around. lol Every year we remark how many new people are moving in on the outskirts of the towns, we can see more and more yard security lights on the horizons each year. lol

Yes, I looked it up and that is one thing that bothered me, I'm only 43, normally people tell me I look like I'm in my 20's but if this guy thinks I'm in my 70's I've either REALLY gone downhill or he needs an eye exam. HAHAHA

I wish when they want to do stuff like this, they look at what your conditions are, as well as prior to like us, the accident, because Prednisone basically eats the bones. I already have Osteopenia, I don't need MORE trouble!

My pain management Doc cut me loose back in December when I had 2 different sets of 4 shots in the back of the head/neck that were supposed to each last 6 months only last a week and a half. He has washed his hands of me and said I need to find someone else. Yet everyone says he's the best...yeah right! I'm working to hold it together till I see the Rhuemy on June 2. Then I plan to inform him that if he's not going to put some effort into my care, I need to keep looking. And stop showing me how you helped the lady who started the National Fibro Assoc. and don't show me her book and how she personally signed you a copy and mentions you in there. (He's even got it bookmarked so he can flip right to it, See here, she even mentions me. Big deal. I'm sure you've helped more people than her, and I'd love to be one you help, so let's get crackin' Jack! lol

Pamela {please}

I wish tons of love and hugs!

Favorite sites besides MDJunction:
http://www.invisableillness.com
& the Fibro Store at:
http://www.cafepress.com/artisticability