The Aword

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New to site. Not doing well with AA and pain.
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TOPIC: New to site. Not doing well with AA and pain.

New to site. Not doing well with AA and pain. 3 years, 9 months ago #1422

  • rn4life
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Hi everyone ! First I want to say that I am grateful there is a place to come so I know I'm not alone. We all know how isolating this horrible, so called, disease is. I'm truly sorry for each and every person that struggles with this and hate that there IS a reason we come here. I was recently diagnosed in October 2013. I believe I got this wonderful package of pain and suffering due to a surgery mishap. I have had three spinal surgeries. My last one was a little over one year ago. I had L3-4,L4-5,L5 S1 fused. My have severe DDD, and my spine was slipping in the wrong direction ( it wasn't aware that this is a one way street). I was told at that time my spine was that of a 75 yr. Old. I still had high hopes of healing and returning to my beloved profession as a Registered Nurse. I have not worked in one year and five months. My scrubs and stethoscope hang as a cruel reminder of what I will never get to do again. Being a RN is who I am and I'm missing my days caring for others. When I worked in preop and post op at an outpatient surgery center, I never guessed I would become like one of the pain patients that I cared for.
Fast forward to today. I'm in so much pain that I feel locked in a cloud of darkness. The exhaustion, pain and weakness to name a few of the symptoms has made me so depressed. I am a single parent. My youngest will be off to college then I will really be alone. How are we supposed to get through every day? Uncontrolled pain, sleepless nights and no social life. What a joke. I barely get out. I have disability now and idk how I'm going to survive financially without working. Thanks for reading my brief story. I am sorry for your suffering too.
RN4life

Re: New to site. Not doing well with AA and pain. 3 years, 9 months ago #1430

  • ann
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hello and welcome...... we are all having bad flare ups at the moment sometimes you think that they will never end

when you are lucky and they do end..... they always bring a new pain friend with them to stay... that is what i find !! i hope that you can find some articles on here that might help in this wonderful package of pain......... take care

Re: New to site. Not doing well with AA and pain. 2 years, 4 months ago #1637

  • Pepper
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Dear rn4life
Sorry to hear of your AA and pain package. I had six spinal surgeries, three in last 18 months at Johns Hopkins. Have arachnoid cysts in spinal canal that cause pain when I sit, stand or walk. Now have stent in canal. Numbness in my legs, feet and buttocks bothers me more than the pain.
I'm going to try dylaudin now for pain. Have been on oxycodine but it causes me constipation.

I was a college teacher, luckily I didn't get serios pain til after I retired, but can sense how hard it must be for you not to keep up with career as rn. Have you found anything to help with the pain? Hope you're doing better.

Re: New to site. Not doing well with AA and pain. 2 years, 4 months ago #1638

  • helen
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Hi rm4life and Pepper
Sorry to read about your pain and day to day difficulties. I think pain medication is very personal and everyone can tell a different story about combinations of drugs. Some medications cause side effects in one person and not in another, so the docs try a different drug as one falls by the wayside!

Wish there was stem cell research for Arachnoiditis - I've emailed RENEURON www.reneuron.com many times, but alas, they have never responded.

Love and best wishes to everyone coping with the symptoms of A and a special mention and thanks to Ann for administering this site.

Helen x

PS Please email Reneuron and ask for help - the more the merrier!
Last Edit: 2 years, 4 months ago by helen. Reason: Adding afterthought
The following user(s) said Thank You: ann
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