Anyone Else Do This

[CarolinaGirl]

When I first got my referal to a rheumatologist, I was thinking she would only address the severe joint pain that I was having. It was not until after reading the pamphlets that she gave me on Lupus did I realize that a lot of the little things I had learned to live with were probably all connected. The tiredness, the memory loss ( there were times I thought I was going crazy cause I couldn't remember stuff!) , lots of other things. Now I am just afraid that if I go back to my next appt with the rheumy in Sept. and start telling her about all the other things, that she will think I am just trying to fit all the criteria to get a diagnosis. Anyone else ever feel this way?


Shannon

[Joandublin]

Hi Shannon style_emoticons/<#EMO_DIR#>/flowers.gif

Join the Club! style_emoticons/<#EMO_DIR#>/smile.gif

I reckon most people on this site have had a similar experience and I expect most people who are eventually diagnosed with Lupus can understand what you are saying.

You cannot second guess what your rheumy might say but it is very important that you tell her in September about your symptoms. Write them down on a list and give her a copy for your files as well. In the meantime keep a diary of your symptoms now. Compile them for your visit. I was amazed at the amount of seemingly unrelated things I was putting up with for years and just blaming them on 'me being unfit' or 'just being unlucky' or 'being a hypochondriac...', etc etc etc. It actually wasnt until I joined this site that I began to realise all those things were actually related.

Think it about...if you dont tell your rheumy you may not get the appropriate treatment and you could end up being very ill. Its not worth it. Pucker it up Shannon. Tell her exactly what has been happening to your body... style_emoticons/<#EMO_DIR#>/smile.gif

Best of luck and if you need a morale boost or two before your appointment, feel free to ask style_emoticons/<#EMO_DIR#>/biggrin.gif

Luv n stuff
Joan style_emoticons/<#EMO_DIR#>/flowers.gif

[halfpintfl]

style_emoticons/<#EMO_DIR#>/wavey.gif Hi Shannon, Yes, a lot of ladies here have said that they feel the
same way, and I feel that way each time I still go. I have told my Rheumy
that I may sound like a broken record, but that I can't stress to him the
level of fatigue, etc, that I am living with.. I wish we had an overload of
Rheumy's in our countries instead of an underload. Do stick with it.


Be well and keep posting. style_emoticons/<#EMO_DIR#>/cool.gif

[Raglet]

for me it was the other way around - I was dx with lupus, put on treatment (prednisone etc) then unexpectedly a whole heap of other symptoms I had never even thought about cleared up, and then my rheumie linked them in as part of my lupus.

Don't be afraid to tell your rheumie about your reading - it's when people start trying to browbeat them into a dx or a particular course of action that they get peeved.

have a great day

raglet

[chloe girl]

style_emoticons/<#EMO_DIR#>/smile.gif Hi Shannon,

My name is Denise and welcome to the forum.
I have learnt so much by posting here. When I first saw my doc, it was with leasons on my legs that I had had
for about two years. My doc thought it could be discoid lupus. I got on the net and stumbled on to SLE
When I saw the symptoms of this I nearly fell off my chair...This was me but I had never connected any of this to
my leasons.. I made an appointment to see my doc the very next day. I now see a rhuemy every three months
and am on medication which is helping me. Never be embarrased and tell your doc everything, have you bloods done
and take one step at a time style_emoticons/<#EMO_DIR#>/ok.gif
Good luck style_emoticons/<#EMO_DIR#>/woohoo.gif and keep posting style_emoticons/<#EMO_DIR#>/hugbetter.gif

Denise

[sweetrhythm]

I have felt the same way as you have. But I finally realized that all I was doing was educating myself first and preparing for my next doctor visit.

For the past 5 years I have been ignored and classified as "high-strung" by doctors. One day I heard about fibromyalgia, looked it up and was blown away by all the coincidences. Now I am definitely against self-diagnosis but I started noticing connections between myself and fibro as well as other connective-tissue disorders (& autoimmune things). I closed down the websites and just starting making lists of EVERYTHING that bothered me. Then I rewrote the list according to what bothered me the most. I filled 3 pages front and back :lol:

I brought in everything with me when I went to my doc. I asked him to just give it a chance and see if anything I had written down had any connections. I asked about fibromyalgia and what his thoughts were on it. It was the FIRST TIME I ever had a doctor fully listen to me and it was also the first time I remembered everything I wanted to talk about since it was written down. From there I got the right bloodwork done (my PCP believed it was Lupus from the beginning of all of this), started seeing the right doctors (good ones too!) and finally felt like this wasn't "all in my head." For the past 6 months or so I've felt like a pin cusion but in all honesty, it was worth it. I'm finally getting the answers I've been seeking for years and I'm also finally getting the treatment I need.

IMHO, it worth the risk of possibly embarassing yourself in front of the doc. It's better to bring up everything even if it doesn't amount to anything bc at least at that point you will have discussed it with your doctor and he/she can clear up things--even the small ones.

One other thing to remember: you know your body better than your doctor ever will. So trust yourself. If you suspect that something you are just dealing with may not be normal or may be related to something, bring it up. It never hurts to ask. It only hurts you if you suppress bringing it up and it turns out to be something more severe.

Good luck to you! :) I hope that you have a productive appointment with your doctor!

*sue

[Budman]

I'm finally out bed and am symptom free except for a little swelling in the feet. It feels great to be out of bed. I have been bed ridden for three weeks. I'm dancing like Fred Astaire lol Only problem is I'll have another attack in a few days. In the last six months the longest I've been without an attack is nine days. I havent been to a rhuemy yet but I'm waiting for medicaid to kick in because the rhuemy's are like 400 a visit and since I haven been able to work I'm broke. When I can work I make about 3000 a week so not being able to work is killing me. Anyway, I dont to bore anyone with all the details I'm just so excited to be up and around. Yayyyyyyyyyyyyyy:wink2:

[chelly]

I feel that way a lot, and it keeps growing. Sometimes I feel that I can see more of it than my doctor does.

[peonyprincess]

Isn't it amazing that once we start reading information on our disease, how many things come to mind that we have dealth with for years. We have played these little signs off as being tired and not getting enough rest, to getting older or just plain living in a faster placed society. ONce we find out that we have been dealing with this for some time, it is like a light bulb going off in our mind. EUREKA!!!!!!!!!!!!!

Tell the doc that after you got to reading the information, it came to you that you have dealt with and name the problem, memory loss, etc and if you can give examples.................i was at the store and was asked my phone number and couldn't remember my number, etc. These doc understand that when things are pointed out to us that we are going to recall certain problems, so do not think that the doc will think any the less of you or that you are trying to pull a fast one.

Good luck in getting everything under control.

Nancy