View Full Version : new, not dx'ed

01-11-2011, 07:03 AM
Hi! I have been reading the site for a few weeks now but have finally decided to sign up! I have been struggling with joint pain, fatigue etc. for some time now (started with knee pain in fall of 2009, had surgery in june 2010 which did not resolve my pain issues.) For the past couple of months I have had widespread joint pain (thumbs, hips, "good" knee), body ache, extreme fatigue and a "flushed" face in addition to my flare up of my bad knee.

All tests keep coming back negative- have had 2 rheum factors, 2 ana, 2 sed rate, a uric acid, etc. My orthopedic surgeon suggested I look into the autoimmune route because there was no "structural" reason why my knee was still swollen. Have an appt. with a rheumy, but it's not until early March! My doc put me on blood pressure meds last week, which she said *might* relieve some of my pain because high BP causes pressure in the joints. (I am not counting on it!)

Any advice on how to get to my appt. without losing my mind!? Not taking any nsaids right now because nothing was working (relafen, motrin, crazy combo of motrin and tylenol). I would just as soon go to sleep like Rip Van Winkle til my appointment, but unfortunately that is not an option!

01-11-2011, 07:12 AM
Hi Tortugal! Welcome to WHL. We are so glad that you signed up and have become part of our WHL family! Sadly what you are going through is not uncommon. For some it takes months or even years to get a firm diagnosis. The one thing I would suggest is to call the Rheumy's office and ask to be put on a cancellation list. That way if someone cancels they will call you and you can go. I got in within a week doing that.

There are a few things that might help. Try using sunscreen when you are in the sun or in a building with florescent lighting. You also may want to try wearing long sleeves and maybe a hat if you notice your scalp getting sore. Many people with AI issues become overly sensitive to UV rays and it sends their bodies into a "flare" or a place where the disease is active and the body hurts.

Others will be along to welcome you but I wanted to make sure you knew to make yourself at home. Feel free to look at the old threads or start new ones whenever you wish. We will be here for you as you begin this journey no matter how it turns out!

01-11-2011, 08:40 AM
Hi tortugal,
Welcome to the WHL and finally joining.
All these pains your getting may be your autoimmune route because if you have that problem like myself it can play madness with your body.
Like yourself i don't see my Rheumo till the end of the month and i was diagnosed with Raynauds 2yrs back and saw the Rheumo early last summer and am still taking nothing till i see him and the pain is so terrible, i've been having to cope with the pain and they suggested 4000mg of paracetamol daily but then i had gyno trouble so stopped taking them so until i see my Rheumo like yourself it's daily process of pain.

They've took loads of bloods and still waiting more results but he did manage to send a letter to my GP telling him what i've got so far.

Take a good look at the threads and member's will help you in the best way possible.

Terri xxx

01-12-2011, 11:04 AM
Hi Tortugal;
Welcome to our family. I am so glad that you have found our site helpful and that you decided to join us.
Your symptoms could, as has been mentioned, be due to some form of auto-immune issue. There are so many auto-immune conditions, many of which have overlapping symptoms. I think that it is a good idea that your doctor told you to pursue this possibility. I hope that you do not have any of these conditions, but if you do, I hope that it finally gives you some answers and that your doctors will start treatment right away.
I know that waiting for your appointment will be frustrating. But, please know that you can come to us at any time to ask any questions or to just vent. We want to help you as much as we can.
Again..welcome and I wish you the very best!

Peace and Blessings

01-12-2011, 03:21 PM
Hi Tortugal,
I would like to also say welcome to WHL, and am so glad you decided to join us! I joined a
little over a month ago so im still fairley new also. And can say i know what youre going through with the joint pain,extreme fatigue,severe acheing pain & the list go's on & on.
There are lot's of careing people here that are going through some of the same things as
we are some more severe and some maby just starting out with symptoms and trying to
find answers and a name to what's going on with them.
And a wealth of information to help also.
Very nice to have you here! And hope you have a great day!!! Diane,

01-13-2011, 04:50 AM
thanks for the warm welcome, everyone! While it is frustrating to be in the "waiting game," just reading all of your stories and advice on this site is a huge comfort. I am in the middle a busy week at work with long hours and lots of stress. It's an annual event that I have been through plenty of times before, but this year I am really struggling! Feel like I am never going to get my energy back and my aches and pains are just getting worse by the hour. Nice to know I am not alone and that I can pop over to WHL when I need a work break! :)

01-13-2011, 06:24 AM
Hello tortugal,
Your welcome from us all for the warm welcomes.
It does'nt get easier unless you have a great state of mind not to let it beat you, all i can say with the hours and being busy at work, is try to pace your body the best you can without you suffering to much pain and if you need to rest, rest if you can.

Wishing you the best Terri xxx