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Posted 11/1/2011 9:03 AM (GMT 0)
Oh my gosh... someone out there must really hate me cry

The pain from my compression fractures has not been settling down. On Thursday I was sitting outside and the pain in my mid-thoracic spine (I had fractures in that area) started getting worse, as did the pain radiating out through my chest and ribs. I saw my GP on Friday afternoon and he increased my Oxycontin as I already seem to be at the maximum effective dose of Topamax. On Friday night the pain in my T/L area started getting worse as well (I had a big fracture at T12) and I also noticed that my knees were hurting really badly. Friday/Saturday the pain in my lower back and knees was terrible and Saturday night it became absolutely excruciating - and I mean like no pain I've ever known. Me crying with pain is almost unheard of, but I was in tears and vomiting with pain, almost ready to ask my Mum to take me to hospital.

I am now unable to sit without this excruciating pain in my legs. I had a CT scan yesterday. Yet to talk to my doctor because today was a public holiday but I gather it didn't show anything new. No surprise really... this new pain was around a 9/10 while I was sitting waiting for the scan, but after lying on my back on the table for a while, by the time they were actually ready to take the images it had dropped to about a 4/10 so obviously whatever is going on is only really occurring when I'm sitting, NOT lying down :( Just wish I knew what was going on...seems like it's got to be compression because it feels like nerve pain but different to my CRPS pain, it's symmetrical, it's positional. And it hurts so much that I'm at my wits end :(
Posted 11/1/2011 9:41 AM (GMT 0)
I am so sorry about that level of pain. I can relate to actually throwing up becausr of the pain, but thank God it isn't often.

I'm glad your GP seems understanding and available. Mine seems less and less willing to help with my issues..I guess he just doesn't know what to do anymore.

I only learned alittle about CRPS from a lady on the plane. I was in a very bad flare from the travelling, swollen and in pain. She sat across the aisle and we hit it off. They thought she had fibro at first, and poor thing was suffering . We could relate about chronic pain and how everyone thinks that you are exaggerating or crazy. This was in 2007...so I "guess" you were lucky to be dxd in 1999.

I hope leg pain subsides. I had a 9 leg experience yesterday because of sacroiliac issues but only aa few hours. Hope yours does too and that they can find a reasonable solution to the other pain besides uppiing meds.

Take care and best of luck
Maggie
Posted 11/1/2011 12:17 PM (GMT 0)
I thought the usual imaging for spinal problems was MRI, not CT. Anyway, that's what I always get got my spinal issues. CT is usually for soft tissues. I've had dozens of those too, all for abdominal problems.

All my leg pains come from my lumbar area. Are your docs looking there at all? L5/S1 and caudal steroid injections take care of them very well!
Posted 11/1/2011 4:02 PM (GMT 0)
Wow, I'm so sorry you've been going through this! When you were having these tests done, was that while you were still feeling the effects of your medication--yet it was still that bad?

Has it calmed down yet? I really hope you get some relief, this is really awful and you don't deserve that at all! Hope you keep us updated on how you feel and what happens!
Posted 11/1/2011 8:35 PM (GMT 0)
Alcie,

CT can give quite reasonable information about spinal issues. MRI is much better of course, but I have a spinal cord stim implanted so I can't have them.

I'm not sure that my meds are doing anything - but then I don't know how bad the pain would be without them...not a pleasant thight
Posted 11/6/2011 2:04 PM (GMT 0)
How have you been feeling Laura?

Suzane
Posted 11/7/2011 6:38 PM (GMT 0)
I to suffer from the radiating pain. some days its all i can do to get up and get my son ready fro school. Im on high doses of oxycodone and oxycontin they help realy they do. but there are some days where 100 of them wouldnt touch my pain. And to go to the e.r. and have a nurse or doctor look at me like a drug addict is out of the question. I had a e.r. doctor try to prescribe me hydrocodone after telling her i have apin meds and would like to know what is causing the pain. she still insisted on giving me the meds i told her no and left. Good luck
Posted 11/8/2011 8:36 AM (GMT 0)
Hi Suzane and Painsick (Painsick - I'm sorry you've also got this sort of pain)

I'm still struggling badly - on top of everything else wound up with a nasty UTI, and now another virus. Back won't let up, gastroparesis won't let up, CRPS won't let up :( My GI is pushing a PEG/J again, but we're really concerned about healing and infection...even my IV sites from last time I was in hospital haven't healed yet. Kind of a Catch-22...my body needs nutrition to heal so that I can have a PEG/J and know that the stoma would heal properly, but I need the PEG/J so that I can can get the nutrition. Kind of had enough really. Seeing my PM tomorrow ... investigating an oxycodone/naloxone combination med that is supposed to get rid of a lot of the GI side effects without compromising pain relief. Sure is worth a try

Laura
Posted 11/8/2011 7:01 PM (GMT 0)
(((Laura))) I'm so sorry you are still struggling. I can imagine opiates are terrible for gastroparesis, since I'm assuming they slow down the whole GI tract. The new med is certainly worth a try.

Such a contradiction with the PEG/J tube. I think ultimately it would be a good procedure for you to have, but I understand the fear of complications. Is there a way that perhaps you could plan ahead for delayed wound healing? Many hospitals have specialists in wound care - I think they are usually nurses. It seems since you have known healing problems, they should be able to plan for that if the procedure is necessary.

I am really glad you have a good GI and PM on your side. Thinking of you.
Posted 11/8/2011 7:08 PM (GMT 0)
Hi Laura, wow, when you get all of that going on I don't know how you manage. I know we all become accustomed to a certain amount of pain with this or that, but you need a major break from things. I do hope the change in meds gives you a break with gastroperesis. I wonder if perhaps putting you in the hospital might not be a bad plan, get you some nutrition and try to get your pain levels down with IV pain meds.

I can relate to the leg pain. Many, many years ago I had what the orthopod called nerve root compression and the radicular pain nearly drove me nuts. That was my first time of ever dealing with that mess but unfortunately not the last time. It is a positional pain too and you are right sitting seems to be the worst thing to do when you have it going on. Back then I was able to tolerate NSAID and he had me on one that was very effective but they took it off of the market because of stomach bleeds, but it sure calmed that nerve down that was inflammed. I cannot remember the name of the NSAID either.

I hope they can give you some help and soon. Keep us posted.
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