Fed Up.

I am a new user, but I am just so incredibly done with trying to get this (or any!) diagnosis. I hope you all have some insight because I'm exhausted and angry and disabled right now.

I just got back from yet another ER visit for odd symptoms and severe pain and this one was just the absolute worst case of de-humanizing degradation and no help at all. If anyone here has any insight on how to handle things if your typical tests are normal (ie: not lupus/rheumatoid/etc aimed testing, just WBC, urinalysis) and no one will test for more, I'd really appreciate the insight.

I've seen a rheumatologist who was with me for all of 15 minutes and didn't do any bloodwork or care to listen to any of my history. I don't know what the extent of my bloodwork has been - only one doc has done any bloodwork with the suspicion of auto-immune source and he literally told me that based on old bloodwork I "couldn't have lupus or anything." So my bloodwork is normal, but it's only normal bloodwork.

I have pretty profound raynaud's. I have had my first malar rash this week. I have odd skin issues including but not limited to: puffy white sores on joint areas that shear off and turn into huge, angry, wet, red, blistery sores, Tiny, almost zit like dots appearing in groups around my body that turn into scaly patches or angry, wet, red sores (explained tonight as a portion of erythema nodosum? I don't know), sensitivity to all kinds of soaps and detergents (angry red rash), raised bumps on my legs that turn into nasty bruising (erythema nodosum, I presume), livedo reticularis (like a textbook picture) all over - hands, forearms, thighs, shins, feet, and oozing sores in and around my nose. The nose issues are accompanied by almost constant red, sore throat and frequently nose. I have photosensitivity, rash wise, but also with general fatigue and malaise. My joint and muscle pain is debilitating. I have chest pain with breath and exertion. I have kidney pain as though someone is sticking a knife in my right and sometimes left side. I can't relax enough to pee most of the time, and sometimes it's cloudy.

I have migraines and all the associated aura symptoms - visual auras with scotomas, sensory auras, dysphasic auras and hemiplegic. My neurologic symptoms are troubling and difficult to address because they come and go like all else but are quite crippling.

Any thoughts?

I'm pretty done with being told I need a psychiatric evaluation.

I agree, try another rheumy. Sometimes it takes a while to find a good one. Also try to see your primary doc after any er visits. They are more likely to put the pieces together.

Sorry to hear that you're having so much pain (((hugs))). I know how that goes though, I suffer really bad pain tool I know it's hard to wait and see but that's is just the way they do things to lupus patients. Unfortunately, a lot of lupus patients go through a lot of Rheumy prior to finding the correct Doctor.

You mentioned about an admission, could your primary admit you if you need to be admitted. I know that my primary Dr. Will admit whenever i need it. Of course, if I go thru the ER, I'm certain to be admitted. I go to a military teach hospital so unless my Rheumy or primary is on call or the staff Doctor in charge I won't see them the whole time I'm there. It took my Doctors 13 years to DX me with my lupus. I went thru at least 7 or 8 of them before I found one I liked.

Try not to get to discouraged and hang in there. I'd suggest you keep a support document, keep a journal on your symptoms, take photos of rashes, mouth ulcers, anything that may be helpful. As for you pain medications, if you need to take narcotics now, it's possible that you may stay on them. I've been on pain meds for quite awhile now. I know that most people worry about getting addicted to them, there is a difference between being dependent and being addicted to them.

Hang in there and please ask any ?'s you may have. Let us know how your doing and if you need to come and vent here please do. We all understand what you're going through right now.

Hugs,
Barbara

ReetaV, you will find understanding here and I'm glad you found us :)

The effects of disease and feeling unwell for a prolonged period of time will bring anyone to tears. It's a roller coaster ride of emotions that I wouldn't wish upon anyone. It's hard to persevere but hopefully you will get some answers and relief soon.

Sending a gentle hug your way
:)

The temperture thing is odd for me too. I will be feeling so feverish and the thermometer will read below normal. My average temp is 96.8. If I get sick it goes lower.
I don't understand that myself.

I hope you stick around here. It's good to meet new folks. ;-)