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Results, or Lack Thereof...

LisaNeedsHelpLLisaNeedsHelp Posts: 28
edited 06/11/2012 - 8:55 AM in Chronic Pain
Ok, first and foremost, thank you all for your support! I felt really bad with not keeping up and responding, but to be very blunt, I’ve been too depressed. I really, really, really appreciate all of your support and ideas!

The swelling from my toes to my thighs is not from nerves… At least not due to permanent nerve damage. I had my EMG yesterday, the doctor was very kind and talked me through everything. He said something’s wrong but he doesn’t know what. I have to go to a rheumatologist but the one they referred me to was a complete putz with an ego the size of Mt. Everest that even shined through the two staff members I spoke with when I called. I called my doc and asked for a different referral, which I got but haven’t called yet.

I’m scared. When I thought it was just nerves causing the swelling that related to my 9-year and counting back problem, I wasn’t afraid and I knew there was no additional treatment that would be needed if that’s what it was. But now that I don’t know what’s causing this, I’m scared.

I’m considering it might be one of my 6 bad discs pushing on my spinal cord. I had an MRI in January that showed that one disc was. Since my swelling came on at the same time as drastically increased back pain, loss of sensations in my legs and feet (even my normal nerve pain) and a few other things, this possibility hasn’t been ruled out yet. I have had urinary retention for years now, just never able to empty all the way as well as unable to hold it, but I’ve always been told it’s just from “chronic nerve irritation.” This problem seems to have also gotten worse in the last few weeks.

I also have another symptom now. I have some swelling in my lumbar area, about 2-3 inches away from my spine and about 5-6 inches tall. Who knows.

Ug, I’m exhausted. I’m tired of this. I’m 24 and need a vacation out of my body. When most people my age are going out to bars and parties, I sit here, at home with my future husband, just trying to be ok for work the next day. We’re moving out of our disgusting hell-hole apartment complex this weekend into an awesome place. I’m stubborn and will be trying to back my clothes and stuff because I have juuust a touch of OCD, hahaha. I’m so incredibly grateful for my future husband! He doesn’t want me to pack at all, but I know he’ll pick up where I leave off when my body poops out, haha.

I wish I could shut my mind off. Even just for a minute. Ug. Thank you for reading my gobbldy gook!



  • Hi Lisa!

    I am 24 with spinal problems so I know your pain, mentally and physically.

    I will pray that they find the problem and there is a somewhat easy fix.

    If you ever need any support feel free to private message me.

    ACDF C4-5 June 23rd, 2011

    Another surgery in the near future. I am 26 years old.

    Current Meds- Norco 7.5/325, Cymbalta 60mg, Gabapentin, Adderall 20mg
  • It's a shame you are so young and with such troubles. I hope you find a good rheumy and get some relief soon. Last year I had to pack up a house and unpack it. It seems like a test of will how much you can do before your body gives out.

    My daughter is 21 and has been having back/hip/knee issues on and off since she was 14, and she has been seeing a rheumatologist ever since.

    I really hope you have relief soon.
    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • Hi Lisa,
    Sorry to hear of all your problems, but as others have said, you've come to the right place to ask questions and find support.
    I hope the rhuemy you end up seeing can be of help, but for all that swelling, I would consider seeing a urologist, since you have urology problems to start with. Maybe your kidneys aren't working correctly...
    My mom, has foot/leg swelling too, and she was told to lay down, twice a day for a half hour or so, and move her feet. She puts on a CD, and "dances while she is laying down". This lets the fluid equalize in her body, and she noticed that after her "dances", her swelling goes down considerably. Of course, it comes back, but this little exercise seems to help. She also is on water pills twice a day, to help move the fluid from her body. By the way, she is 97 years old...
    Good luck with this issue..let us know how you are doing!)
  • Lisa,

    I hope they can find out what is going on, but in the meantime I second seeing a urologist. There are several test they can perform to test what is causing the bladder retention. I myself had to go through these test last year, as I had a sudden onset of bladder retention. My spine surgeon would have required them before making any assessment as to where it was coming from. The urology testing revealed it was a nerve issue relate to my spine. The can also teach you to self cath, while not fun, it sure helps the pain of retention as is much easier on your bladder and kidneys. When I first developed the condition we had to do a leg cath for a month to help it, along with medications. Now I can self cath and use the medications, much better than having a leg cath.
  • SavageSavage United StatesPosts: 5,476
    ..you were more isolated..at least from this site..with feeling depressed. Maybe your friends..family are there for you..because..and I do it myself..wihdraw so I can whine alone and not be judged....not that you're whining..... And I still work on that.

    Was wondering if you have doc who over sees all your care? I do not...but with you being so young..I think it would help with diagnosing and understand all your issues and the interplay.
    Medical care more complicated..but i hope thatfor you.
    Take care!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • I hate hearing issues like these from youngsters. That just makes me sad. You are way too young to be dealing with this kind of crap. You made me laugh about takin a vacation out of your body - what a friggin treat that would be huh!
    I am going to ask my doc today if she thinks I should see a rheumatologist as well. These joints are a misery. My new meds are working better but mornings just bite. Like you, I have to be at work everyday so there has to be something better than this for the "witching hours" as I call them...
    Good luck - Marion
  • Are you feeling any better at all??? Just wondering..
  • I can totally relate, as I'm 29 and dealing with constant pain as well. I just had surgery a little over 3 weeks ago, but now I'm dealing with more pain in other areas of my back. I feel like these are my prime years that I should be enjoying. I also have three beautiful children, and I feel like they are missing out on their mommy. I try to push the pain aside and still have fun with them, but it's not easy to do many days. Hang in there and try not to overdo it!
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