View Full Version : Bad day... I just need to vent...

12-18-2006, 06:49 PM
First off, my name is Bethany. I am (almost) fifteen and in ninth grade. I am not 100% sure if I have Lupus or not. If I do it is very severe. I do know that I have Reflex Sympathetic Dystrophy, but I think I have more than just that. I am in a wheelchair, I can't walk at all. The only movement I have in my legs are the tremors that come and go. I wrote my story on my website: http://missbethanyann.tripod.com. I don't mention Lupus because, again, I don't know if I have it or not.
So today was insanely weird. It wasn't terrible. I came pretty close, but I did not end up in the ER. God is good!
All of this weekend I have been having terrible low back pain on the left side. My legs have been hurting even more than usual. My face, fingers, and ankles are more swollen than usual (I'm not on steriods so there's no reason for my face to be doing that...). Okay and this is something I'll only tell you guys because 1) you dont know me and 2) you've probably had the same thing.
My urine is ridicolously dark (although that got better with drinking some water) and its all foamy.
Could this be a kidney thing?
I saw my doctor today (I forget the kind of dr. he is... he's not a neuro but he's something like that. he's like a rehab specialist kind of dr... bleh i can't think today!!) and he was just like "eh, that's weird..." and left it at that. He said if I'm still sick next week I need to get Xrays of my spine.

I've gotta go. I'm going to lay down. I'm so tired!


12-18-2006, 07:47 PM
Hi, Bethany! It's really nice to meet you. There are several of us on the forum who are "motorized", so we can certainly relate to the chair. But I imigine it's a lot harder when you're young and in school.

I want to strongly encourage you to go to your primary care doctor or pediatrician - whoever takes care of your medical problems, and get your kidneys checked out. Because the swelling you are describing in your face and ankles, and the dark, foamy urine could both be symptoms of a kidney problem - so you need to have it checked out asap. Because of your neurological problems, you are more susceptible to other health problems, especially if your bladder doesn't work well. So please discuss it with your folks and go see your doctor, okay? And keep us posted on how you are doing.

12-20-2006, 09:29 AM
Hi Bethany;
I visited your web site and wanted to welcome you to ours! Please do take Marycain's advice and ask that your kidneys be checked right away. Your symptoms do sound as if you may be having some kidney invovlement!!
Please do not be afraid, ashamed or hesitiant to ask us anything or to discuss any symptoms that you may be having. Someone here will do everything that we can to research your concerns and try to find an answer for you so that you can make informative decisions with your family and with your doctors.
We are here to help you, please allow us to do that as much as we can!
Once again...Welcome
Peace and Blessings

12-21-2006, 01:50 PM
I visited your site the other day and you are an awesome girl. I am by far the last one to tell you what you need to do, but I would agree with the others that you sure should be checked out by a doctor. What you are describing does not seem normal to me. Bless your heart, I hope you are feeling better soon. Let us know how it all turns out please.


12-21-2006, 07:07 PM
Thanks. I've worked hard on pulling that website together. I made it when I was really lonely (I had no friends whatsoever), so I felt like I needed a way to reach other people somehow. I'm so glad I have real friends now.

I went to the ER last night and they said my kidneys look okay (of course, that's coming from and ER doc and they tend to look just at life-threatening things). I was in so much pain that they gave me morphine. It helped a lot. I didn't like the way it felt, kind of dizzy and nausious (it knocked me out after being on it for just two minutes.) My brother said I looked like I was high (and, like a true brother, told his friend trey and thought it was so cool.... not!!). It helped a lot with the pain, though. Most of the pain went away (which is amazing!) My pain level went down from like a 10 to a 5... I've never had that low of a pain level in years!! It was good but the side affect were really overwhelming. The morphine only lasted a few hours, and the pain is close to what it was before but I'm not going to keep "running" over to the ER...

This is a completely amazing- I had an appointment at the pain center at cleveland clinic on february 27th... way too far off!! My mom called the pain center this morning to see if I could get in sooner (thinking maybe and earlier date in January of February... the pain clinic is so hard to get into!!!)... and they have and opening tomorrow!!! I'm so happy because maybe I will finally get some treatment for the pain!!!!


12-21-2006, 07:35 PM
That's great - I've been to the Cleveland Clinic - my rheumie did a fellowship there and was able to get me in - they are really good there! Do you live in Ohio or somewhere close? It's a shame the weather is so cold and wet- Cleveland has an awesome zoo and it's completely wheelchair accessible.

12-21-2006, 08:25 PM
I am so glad that your mom made that call! It is great that you are going to get into the clinic tomorrow. I hope you will get the relief you need. Hang in there, it looks like help is on the way! Please let us know all about how everything goes.


12-22-2006, 10:02 PM
I went to my doctor today at Cleveland Clinic. He said he wants to admit me into a rehab program. I'll be getting a lot of physical therapy (including aqua therapy) while I'm there. He wants to put in an eupidural spinal pump. He prescribed Lyrica for my pain.

Has anyone had any success with any of this?

If any of this stuff works it'll be a huge miracle. I have a ton of muscle weakness (to the point of paralysis) in both legs. Would the pump help with that? My dr. said it might help with the tremors in my hands and feet. The main thing the pump would help with would be the pain.
I don't want to get my hopes too high, it sounds too good to be true.


12-23-2006, 09:03 AM
Hi, Bethany - I had a pump implanted after I had major surgery on my back and it stayed in for a couple of years until I didn't need it that much any more. I had osteomyelitis of the spine that caused me to lose a lot of the function in my legs and caused a lot of pain. The pump is mostly for pain control - it drips morphine continuously, never enough to cause a "high" but enough to get control of your pain without all the side effect of taking narcotic pain meds by mouth. It is a really good solution when you are in constant pain because it levels out your pain relief. I was taking oral morphine and other super strong pain meds but they would always wear off before time for the next dose. Then the pain would get so bad that it took a long time for the next dose to kick in. You've probably had the same experience and the pump does take care of it. I also had to do rehab after my surgery, at Frazier Rehab in Louisville. I'd be glad to answers any questions, just send me a private message anytime. Big hugs!

01-01-2007, 05:15 PM
Hey guys,
I just got back from the hospital. I was there for four days. I had
an extremely low blood pressure (half of what it should be), high
white blood cell count (It should be 12,000 and it was 39,000), and
a fever of 105. I was shaking (more than normal) and in a lot more
pain than I usually have (and I thought that wasn't possible!). I was
dizzy and I had a migraine. I don't really
know where this came from. It was totally out of the blue. They really don't know why I got that sick. My dr. said it was probably just an
infection or virus.
I'm feeling a lot better now. They gave me antibiotics and fluids.
I have this type of stuff few months (this is the worst I've ever
had)... do any of you guys get stuff like that?


01-02-2007, 11:51 AM
With lupus it is never easy to tell if you are sick from a flare, a virus, or an infection or some combination of all of them. I have been to the ER a few times due to my lupus, but only admitted once so far. When I'm going into a lupus flare I notice a progression of symptoms, joints hurt, hair falling out, anxious etc... I usually adjust my meds accordingly, such as start taking a low dose of prednisone.