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Date Joined Dec 2005
Total Posts : 1944
Posted 12/13/2008 10:13 AM (GMT -7)
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
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Date Joined Sep 2005
Total Posts : 2573
Posted 12/13/2008 3:15 PM (GMT -7)
have you seen a kidney specialist? do you have a pcp who is decent? I am sorry you are in so much pain. have you seen a pain specialist?
I completely understand the spinal pain. I couldn't stand to sit or stand let alone walk before I began humira and then switched to enbrel. my spine is still bad but more bearable. why no anti-inflammatories? I would guess inflammation if pain pills fail to help. Enbrel, humira, and similar help with inflammation.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, now cellcept
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Date Joined Feb 2003
Total Posts : 5514
Posted 12/14/2008 1:32 PM (GMT -7)
I have back pain that is worse than post surgical pain too. It can get so bad that (now bear with me here...) I can't reach back to wipe when I use the toilet...... Yes. So when I do use the can, I end up in tears just from trying to wipe my butt....
For me, it's my mid spine and lower spine and the big flat bone across the top of my butt cheeks (sacroiliiac joint). My pain feels like my spine and that big bone are fusing together into a solid mass of "decrepid nigtmare".... Is this the area where you're having pain?
I walk like a duck. You can be the crab, I'll be the duck. Have you had a chiropractor look at you? Any xrays at all of your spine?
I absolutely understand the pain. Even narcotics don't touch it, right? It's enough to make you feel like you're going to lose your mind?
That feeling of "I think I have cancer of the spine", is so real. I feel that way sometimes too. I feel that way with my neck. It's all messed up too. Arthritis, Fibro, Lupus, great combos.....
I just wanted to let you know that I do understand, and I pray that you get relief very, very soon.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13
34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety.
Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
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