Well, the rheumy, who made me feel nuts and reluctantly gave me pred, and my GI, who doesn't remember me anymore and totally forgot everything about my endocrine and the supposed cause of my illness, finally made me feel guilty and I went off the pred, tapering down.
The headach and anxiety are gone but I was extremely dehydrated, very bad, and not wanting to drink anything. My blood was so thick I couldn't do blood sugar test and my eyes and mouth were extremel dry despite restasis, gum whatever I do. Its the dryest I've ever been.
I feel like I can't catch my breath and have bouts of chest pressure. I told the doc and he listened to my heart and said nothing was abnormal. My BP is normal.
Now, my lower back feels like someone is cutting my spina cord in half BAD and its excruciating and I cannot walk or dress myself and cry and scream getting to the toilet. Its worse than post surgical pain. It is horrible. The ER here won't do a thing--they even tell me to exercise, and exercise is destroying my back. My pelvis is crooked and I have to walk like a crab. I hurt so so bad I can't stand it. Pain meds do nothing. I feel like I have cancer in my spine. It scares me because I'm at risk for multiple myeloma due to the polyglandular endocrine thing. So far my electrophosporesis has been normal up--last time was in June.
Part of me wants to go back on the steroids, but I worry that the steroid might have allowed TB or another infection in my spine, to become activated and cause this problem. I have had meningitis before and have spinal deformaites characteristic of spinal TB, though they SWEAR there was none on the XRay they did,not even an MRI or ct scan. I gues that what happens when youare medicare.
Also, I have been having night sweats andstill don't know if I have lymphoma or not, too many spots on scan to bx, but feel like I'm changing in a really bad way. My white count is high now, but gi says that's from pred. Is that right? My urine is lemon yellow and very cloudy with white speckles and its hard to go now, which is another thing better on pred.
Thanks for any help you can give ad just being here. I'm so so hurting now. I just want this to end. I don't know why they can't do spinal block and tap. I hurt just so unbelievably bad.
I know so many people are suffering worse now, and I feel bad complaining. I just need to let it uot to someone who understands. Its worse than post surgical pain.
Love to you all and I hope you are all doing better.
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids