View Full Version : Need advice/info....Worst Pain Yet...

08-21-2008, 02:38 PM
Hi everyone -
I am going through the pits of hell right now...I dont know what this is, or what to do about it...Maybe someone can help:
OK - started a flare over a week ago. GP put me on new prednisone taper (she doubled my regular dose to 40mg). I thought I would start feeling better, but I dont at ALL...It has been almost a week (I am now down to 30mg.). Now, I have my regular lupus pain going on, facial swelling, BAD fatigue (sleeping almost ALL DAY), night sweats, etc. And, for a long time now, I have been suffering on and off with REALLY bad hip pain (Ive talked about it before). Incidentally, the hip pain went away when I was FIRST put on prednisone in June, along with my other lupus syptoms). So, the hip pain is back - with a VENGENCE. As soon as I start walking around, they hurt, and my legs feel SO WEAK and almost numb - but painful numb. It gets to the point where I have to stop and let the blood flow back into them. Well, last night it got even worse, and the numb-like pain was now in my lower back as well. In addition to that, my hip pain traveled down the front of my thighs into my knee, down my shin, into my heel. This was BONE PAIN - like from inside the bone...It was excruschiating...OMG and it came in like waves. This is awful....Now, I can feel that pain in my elbows and wrist as well. I am in complete AGONY....I have Tramadol - thats it - and I have to go easy on the NSAIDS because my intestines were inflammed last week. What the hell is this? This does not seem like lupus. I have a problem with my lower back (disc problems, degenerative disc disease, etc) from an old injury. I cant help think its some kind of infection, as Im having night sweats (that always happends when I have an infection).
Any ideas? Any ideas to help with the pain? I have IcyHot patches all over me - they help a little..
Please - any help is good

08-22-2008, 07:20 AM
Hi Lauri,
I'm so sorry to hear that you are feeling so bad. I can't offer any advice, but I'm sure someone will be along shortly. I just wanted to send you some hugs and I hope you are feeling better soon!

08-22-2008, 02:05 PM
Lauri -

So sorry to hear what you are going through. I can totally deal with the hip pain...feels like the hip joint is on fire from the inside out. Pain radiates down the leg. Keeps you awake, can't get comfortable. I have no remedy. Mine comes and goes. Maybe a nice warm bath. Don't be shy about calling your doc back and describing this pain, along with the night sweats. Hopefully there is something that can be done to give you some relief.

I hope things improve soon.


08-22-2008, 04:30 PM
Hey laurid8967

Are you feeling any better?

If you're that miserable, call your doctor's office and get in to see them. I'm not familier with the ins and outs of that medication as I've never been on it.

If you are uncomfortable while laying down, I would suggest bracing your leg or legs (depending on how you like to sleep) with a pillow.

I bought a body pillow (5 ft long tube shaped) that I use when my legs are aching badly. I sleep on my side so I lean on the pillow and throw one leg on top of it. It helps alot.

Also, when I'm hurting badly I'll wear my satin pajamas...helps me to move about in bed with out jarring my poor body. I dont like satin sheets...they just feel way to funky and I dont get a good sleep. But the jammies help me alot.

Hope you get some relief soon.

08-22-2008, 05:28 PM
THank you all for your posts and suggestions
I actually called my GP today, and she wanted me up the ER asap..She was concerned about a possible bone infection or avascular necrosis. I do not, however, have either (thank you God). The ER doc was at a loss. He felt it may be bad bursitis, but said the prednisone Im on would normally take care of it.
Either way, Im very happy to not have the other things...I know for sure something is going on - it defiantely does not seem lupus related - but Ill have to wait to talk to doctor about it.
I cannot wait to get lower on these steroids, though. My face is ENOURMOUS...Its unbelievable. I wouldnt mind if the meds were working as good as before, but theyre not. Soooo, Im now REALLY unattractive AND in pain...lol
I wanted to mention something. This is the first time Ive been to the ER since being officially Dxd. Well, I can tell you - there was a HUGE difference as to how I was treated at the ER. Just the whole attitude is different - like now Im "legit", you know? There is NOTHING worse than when a new doc says to you, "So what are you actully being treated for?" and you ahve to look at them and say, "Well, they dont really know yet..." Immediately, I would get blown off from that point on.
It was very different today, and - as you can imagine - so relieving. I had anxiety before I went just because of years of being looked at like Im crazy - but that didnt happen today. I am really grateful for that, at least.
Anyway, I still have no idea what is causing this crazy pain...I guess Ill have to leave that up to the docs...

08-24-2008, 10:14 AM
It's amazing what a little validation can do for us, huh? I'm sorry you are in such pain. Please let us know what the doctors say and don't let them brush you, or your pain, off!

Peace and Blessings

08-26-2008, 06:29 AM
Did they put you on any pain meds at all? I am happy your experience- the way they treated you was better. :-)

08-26-2008, 06:46 AM
THey gave me Ultram (tramadol) which my GP had given me the prior week. I need a couple to actually work, but, Im glad I can take something (I cannot take any narcotics - though I would like to) lol!
Love Lauri