Hi all, been having aheck of a time. For about a year now I've been going into flares of pain and stiffness which is pretty normal for us but then there was something else. Terrible sick, nausea, couldn't eat, feeling too full, bowel stops functioning terrible sharp apin under my right ribs around to my back and even up my back and neck. It all evolved over a week or two and then just never stops. Well my GP and I I think figured it out today! I have Addison's disease! But i already knew that???? What I didn't know is that when i would go into a sjs flare the Addison's was no longer controlled with the regular replacement dose or 7.5 mg daily so I got Addison's disease sick again on top of the flare. It just came to me like a lightning bolt when I was writting a short journal to describe what was happening to me. I was diagnosed with Addison's 20 some years ago and I had forgotten how I was just before my collapse. Couldn't eat, terrible salt cravings, gaggy nauciuous, some vommitting, completly exhausted. It makes so much sense how could I have missed it? Well i guess allot of dr's did too. But my next question to my GP was so if i was so good from Oct 6 to Oct 10, doing extra house cleaning etc and feeling pretty proud of myself, So I asked my gp so why did the wheels fall off on the 11th? He just grinned, rubbed his face and said, OH! I don't know!??? ;D then he said actually i think that it takes nothing more than a small breeze to set the inflamitory process off with you or in this type of illness. And I confessed my back was quite messed up and sore during my cleaning week. I also asked about the gallbladder test etc and he said there were no stones but i do have sludge. So the gallbladder is working just not so well, thus the pain and dizziness and nausea too. So i have to figure out how not to get inflammed when I move, good luck with that, he said i may have to take a bit more prednisone from now on. But for now he's upped the pred to 15 mg daily for a week and the florineff (for electrolyte balance) to 100 mcgs. Oh Lord I am so thrilled with this, there is hope! Anybody else have gallbladder sludge issues? Sandra
Hi Sandra :)
I'm really glad you got that figured out. Hopefully you'll be able to get it controlled better now. I don't have gall bladder problems but my sister in law had her gall bladder removed last summer. She'd been having symptoms very similar to what you describe. The scanned her and said 'no stones' but she kept being so sick they eventually decided to operate.
When they did they found her gall bladdr was more enlarged than they'd anticipated and basically was not functioning. She's felt soooo much better without it!
Take care - Scottie :)
Hey Sandra,
Glad you were able to work out what was happening. It makes sense that when you are unwell your addison's will play up. Its that whole fight or flight thing and if your body is unwell it doesnt have the adrenal support to help it out and gets sick.
Did your gp order you a round of bloods and maybe another synacthin test to see wht your levels are? You may need to permanently be on a higher dose of meds.
Also the move without inflammation. The only way to do that honey is to pace yourself. Learn your boundaries. with this liitle gift we have if we do too much one day we will pay the next and possible the next few more. We have to learn to work within our limits to beat this little beaty at his own game.
Pud
Hey Pud, I don't think I can have the syhathin test, there is no way to read my cortisol levels as mine come straight from the bottle. My adrenals are Ka-put so the test cannot respond to steroid production. Found this out when a Gp I had years ago did the test and was highly alarmed at my am cortisol levels, so he put me on mega doses of pred to get it to raise. Darn near did ne in! Found out later from and endo that my cortisol levels will never show up on an am cortisol test. Sure would be a helpful thing to have a test that could tell me whan I need a bit more, like instead of a glucometer a cortometer!
You know the how to move thing has gotten much worse or something as I have never been so delicate before. i am much more cautious these days but still have a terrible time with doing much of anything. It seems to be my spine that is the aggrivator, it hurts allot. I still think that the auto accident of a couple of years ago had something to do with this problem. I have read about anklodosin spondilyitis (sp?) on this forum though too and I have lots of inflammation soooo? I see my rhuemy in a week or so I will ask her about it. Thanks, be well, Sandra
You're right about the cortisol levels, but in most cases people with Addison's are monitored regularly for certain other blood tests, including sodium, potassium, blood counts and plasma renin. These are very useful in monitoring the need for, or response to, adjustments in dosage. There is no single blood or urine test that is perfect by itself (although if you could invent a cortometer, you'd probably make some $$$$). Do you have regular blood tests for monitoring purposes?
No Linda, it's tough her for medical care. it's hard even to get appointments, my gp was right out of med school in 2003 and thrown into the lions den. Last year he finally hit the wall with exhaustion I suppose and he went off on stress leave for sometime. We have almost zero specialist in our area to support him and wait times away are miserable. he is much better now his wife who is also a new gp has joined his practice and they tag team. He works much a the hospital too and the ER. Plus they just had their second baby in the past 3 years. I did get to see him finally yesterday, (although he was looking at his watch) we were both very happy at our conclusions. i did talk to him about a registered dietician i want to see as i too wonder about absorbtion issues an minerals etc. But when I asked him about having that stuff checked as suggested by the dietician he said there was no point with me as he would have to test me every singel day which is pretty much what I think too, knowing how differently i can feel from day to day. My rheumy is very good, she knows somethings going on from her other specialist referrals now and has moved my reg appointment up from end of Jan to the 27th of this month I can fill her in on the rest. She has been trying toget me into an endo at Kingston general but the one I was referred has wrecked his knee and the surgery he has had has forced him to cancel 3 X, so my rhuemy is trying to get me into another which will again take time. i would be interested in any further ideas from you so I can talk to my dietician about it though. Thanks so much. Sandra