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nrivers (@nrivers)

Struggling with cluster of symptoms

Neuropathy | Last Active: Aug 3, 2021 | Replies (10)

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@zailey

@nriversYes, I have been living with a lot of same symptoms you are having. i am 69 yr old and have been living in this condition since I had surgery 22 yr ago to remove a foot long tumor from end of my spinal cord the tumor was attached to end of spinal cord and had grown and entangled to all of the syatic nerves. I went thru a 13 hr surgery woke up in the NICU on lots of pain meds, moved to a room next day. was out of it for approx 5 days when I started having breathing difficulties and my family went to nurse and she pulled lines to pain meds. Thats when I woke up enough to know what kind of pain I was in, it was the worse kind of pain you could imagine from my waist down to end of toes, stinging, burning, pins and needles and I wanted to die and get it over. PT came into room to get me up to walk and when they put me on my feet I started going down so I ended up falling backward into bed because I could not walk. After second attempt I was able to stand for a second with two PTS holding onto me., By the end of two weeks, I cold slowly walk with walker for 8 or 10 steps. At the end of two weeks I was transported to Rehab center after intense rehab I could walk approx 10 ft and turn around and walk back to my bed. Was at home in hospital bed for the next year.and going to outpatient PT 3 times week. As time went on I continued to improve and could walk by myself with a walker at approx 18 mo out but still had terrible balance problems and still in severe pain. I was sent to pain clinic and on high doses of Oxycontin plus Percocet after 5 yrs I decided I was not living on all the pain meds and begin to decrease little at a time until I was only taking Percocet , it took me approx 9 months to get off the Oxycontin which I was taking 80 mg every 6 hrs. Doing much better at this stag but still in lots of pain but was just thankful that I could set up and enjoy my coffee while looking out my dinning room window at the beautiful scenery of the Smoky Mountains. I continued to improve for next 4 or five years but 2 yr ago things started going crazy the pain, burning and stinging in feet and legs begin to get worse specially in late evenings and night, my RLS has gotten worse over the past 5 yr and now it is every night and now the feet and legs are 24/7 and the balance problems is much worse, not to mention that I have had 2 TKR in past 6 yr and cant stand up to long because my back feels like there is nothing there to hold me up. Now, I have started this weird jerking, its just only occasionally my head and shoulder will all of a sudden jerk or my arm will jerk, dont know what this is!!! Two yr ago my feet and legs begin to swell and after many test Dr said blood was not returning back to heart the way it should and the best thing I cold do is wear support stockings and keep feet elevated as much as possible. Lately I have had two large blisters on legs due to them swelling and you mentioned your hands, I am also having some problems with my hands, I had Corporal Tunnel surgery on right hand 2 yr ago but it swells gets stiff and hurts also pain in both shoulders and arms Sorry for the long post but wanted you to know that you are not alone and I am thinking of you and hope you can find some relief. Please let me know if you get any answers or results as to why these things are happing. May God watch over you and give you relief. Sue

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Replies to "@nriversYes, I have been living with a lot of same symptoms you are having. i am..."

My goodness, Sue; you have been through an awful lot, and for a very long time. It is amazing that you have kept going forward all these years. I am so sorry to hear of the relentless pain these last several years–and the way it has affected your mobility. Are you still able to exercise in any way? How do you spend your time? Your faith seems to be a cornerstone for you–as it is for me. I find myself repeating the Serenity prayer a lot–not just the first part, but the entirety of it–accepting the world as it is, not as I would have it, surrendering to God's will, trusting all will be made right, living each moment, finding a path to reasonable happiness.

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