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View Full Version : hi,finally able to introduce myself,im ragdoll and need someone to understand



ragdoll
10-26-2012, 08:49 PM
my ordeal started 14 years ago with blown disk,l4-l5 and has since taken over my whole spine.During all these years i have gotten worse and worse joints in spine,hips,knees,feet,wrist,jaws,ect.I am extremely tired and have developed lung problems,and digestion as well. i can barely use my fingers and the top of my feet hurt as well as my ankles. MY husband thinks i need to exersize,but the moore i do the worse i hurt and the longer i have to stay in bed.I was diognosed with lupus several months ago and am supposed to go to a rheumi for further test,my dr thinks i have multible au disease,i was also diognosed with ankylosis spondilitis,facett disease.ok my question is does anyone out there seem to wake up out of there sleep in acute pain,and have joints feel like there froze up.sorry to carry on but had to get it out by the way i am on norco and soma and soon to be on placquanil,i know wrong spelling!while im on here i ask for all of you sufferers to pray for my little grandson,he will be getting open heart surgery on the 30 of november to reconstruct his aorta coarctation and repair a whole and vein .His name is jace and he seemed so healthy,they found a murmur and high blood pressure at his 4 year old check up,then angiogram confermed congenital defects,dr.said should have been caught before 1 year would have been easy to fix then,but the dr also said he would have a great prognosis,thank God! jace also has bicuspid but that will be fixed later in life.Poor little guy just started saying his legs feel tired ,well thanks evryone and God Bless All, Your understanding friend ragdoll

jmail
10-27-2012, 01:55 PM
Hey ragdoll, welcome to WHL forums!

I fell off a ladder over 12 years ago, and "popped" the L4-L5, and the L5-S1, and damaged the L3-L4 (which is now leaking), and L2-L3, so I'm quite familiar with back pain. Thankfully, the "fluid" in disks is very viscous, and none of my disks have "gone flat" yet, but the one is getting close. I go in Tuesday for a follow-up, pix & consultation, so we'll see how I'm doing with that (along with other things). I've consulted with my pcp & neuro multiple times for exercise "routines", and I'm now restricted to light "core" exercises, which works the tummy & lower back muscles "gently". It takes over 30 minutes each morning, but definitely helps. Be sure and consult with the docs on that. You do NOT want to further damage your disks trying to exercise incorrectly. Also, lupus has been known (over 50% of the cases in some studies) to attack the CNS, which would affect your perception of pain, along with numbness and tingling (among other symptoms) in various locations, so be sure that the rheumy is aware of ALL your symptoms. I have to write things down as they happen, then gather all the notes for each appointment. The wife has a "smart" phone (I used to be the "smart" one... lol), and we've been using it to put the notes in (and take pix of my rashes), and then she'll go with me to a lot of my appointments, so she can "prod" me to remember things... The ankylosing spondylitis is basically arithritis of the spine, with a few extra "caveats" thrown in. Basically, the bones of the spine try to grow little fingers towards each other, and fuse the vertebrae together. You'll eventually have all sorts of snap, crackle & pops from that too, if you don't already... I started on plaquenil a few months ago, and it started helping in about three weeks. I had to quit for a while after I reacted to something (lupus??), and I've just gotten back on it a little over 2 weeks ago. Several of my lupus symptoms have receded some, but the joint pain and other neuro symptoms haven't decreased yet (hence the stuff Tuesday). I am doing a small-dose of prednisone right now. I have wakened suddenly multiple times in the middle of the night with acute pain. The eventuality for me is "titanium triangulation" with multiple fusings, which I definitely do not look forward to, so I do everything I can to "save" my back. The big thing is consulting with the doc, and not being shy about describing your symptoms.

We'll be praying for you, your family and Jace. Welcome to the forum again.

doublecamp52
10-27-2012, 10:26 PM
Just wanted to say Hello, and to say I will pray for you and your grandson.

Saysusie
11-14-2012, 11:51 AM
Hi;
I, too, wanted to make sure that I welcomed you to our family. I will keep you, your grandson, and your family in my prayers!

Peace and Blessings
Namaste
Saysusie

kim,l
11-17-2012, 01:56 AM
welcome to our family. and i wish your grandson well.