My LDN journey so far PLUS the fun of a kidney stone
Well it's been a while since I updated this blog but I've been having a hard couple months. Firstly the LDN has made no difference to my pain levels at all though has made a difference to my pocket at almost 90€ a month plus 100€ to see the specialist. I started on 3mg but am now on 4.5mg which is what most Fibro sufferers find relief on. They dont let you get any higher apparently.
However I've also been going through a couple of surgical procedures for my almost 2cm kidney stone. In the beginning of April I had the first but apparently i have and i quote "the smallest urethra" they have ever seen so they couldn't even get to my kidney. Instead they inserted a stent from my kidney to my bladder. Now general anesthetics (GAs) make me sick as the proverbial dog. I get dizzy and a migraine and mega nauseous which i did but my biggest issue was the day after the surgery I woke with the worse Reynauds symptoms I have ever experienced, although I haven't been diagnosed officially yet my GP thinks that what it is and so do I. The pain in my feet was so bad I coudnt walk for almost a week. My left hand was agony too but my right was fine randomly and thankfully.
After a couple of weeks these symptoms went. A month into having the stent i began having infections. When i say it was agony that doesn't even cover it. It was like the worst kidney infection you have ever had, and Ive had a few, multiplied by 10.I was having to bite on my arm or a tissue to keep from screaming with the pain when I peed. I was on 5 antibiotics in 3 weeks......then thankfully had surgery two.
This time they could get to my kidney and blasted that sucker with a lazer. Unfortunately they left a stent in so they can go in one more time to check they got all of the stone, hopefully within the next 4 weeks. they changed the stent so I have a couple of weeks of no pain but its started again now.
This time i told them about the Reynauds issue having researched and found out that under GA your body gets cold and the meds make it colder so it can cause issues for people with Reynauds and they dressed me up in silver thermal items, wrapped my feet in booties and legs in blankets, a pair of very fashionable mittens on my hands and a very fetching silver hat lol. But it worked, bar my left had I had no symptoms this time and the left hand has been bearable, except the first night it was agony i bearly slept. Also they gave me more fluids before during and after the op and different meds which made a huge difference. I wasn't sick when I woke from the GA at all. I even managed my toast for the first time. :) The migraine I always get after GA was so much worse too.
I also felt vindicated as they had continually said it couldn't be the stone causing my pain in that area. After the op they admitted where it was laying it would have intermittently blocked my already tiny urethra and would have caused me pain. I TOLD YOU SO! lol
So now im waiting for the last surgery to get any lil bits out and the stent out. I cant wait to pee like a normal person not 100 times a day!
As for the LDN I'm still on it but my specialist is thinking of trying me with lidocane OR ketamine infusions to see if they will help my fibro first we have to wait til this stone business is sorted.
I have found it hard to cope with the LDN not working as I know a few people who have gotten back to some sort of normality with it but as my neuro said I'm med resistant which is the worst super power ever! So maybe thats why it aint working for me who knows but I need a break from pain and new illnesses lol.
Thanks for reading
Kayt X
However I've also been going through a couple of surgical procedures for my almost 2cm kidney stone. In the beginning of April I had the first but apparently i have and i quote "the smallest urethra" they have ever seen so they couldn't even get to my kidney. Instead they inserted a stent from my kidney to my bladder. Now general anesthetics (GAs) make me sick as the proverbial dog. I get dizzy and a migraine and mega nauseous which i did but my biggest issue was the day after the surgery I woke with the worse Reynauds symptoms I have ever experienced, although I haven't been diagnosed officially yet my GP thinks that what it is and so do I. The pain in my feet was so bad I coudnt walk for almost a week. My left hand was agony too but my right was fine randomly and thankfully.
After a couple of weeks these symptoms went. A month into having the stent i began having infections. When i say it was agony that doesn't even cover it. It was like the worst kidney infection you have ever had, and Ive had a few, multiplied by 10.I was having to bite on my arm or a tissue to keep from screaming with the pain when I peed. I was on 5 antibiotics in 3 weeks......then thankfully had surgery two.
This time they could get to my kidney and blasted that sucker with a lazer. Unfortunately they left a stent in so they can go in one more time to check they got all of the stone, hopefully within the next 4 weeks. they changed the stent so I have a couple of weeks of no pain but its started again now.
This time i told them about the Reynauds issue having researched and found out that under GA your body gets cold and the meds make it colder so it can cause issues for people with Reynauds and they dressed me up in silver thermal items, wrapped my feet in booties and legs in blankets, a pair of very fashionable mittens on my hands and a very fetching silver hat lol. But it worked, bar my left had I had no symptoms this time and the left hand has been bearable, except the first night it was agony i bearly slept. Also they gave me more fluids before during and after the op and different meds which made a huge difference. I wasn't sick when I woke from the GA at all. I even managed my toast for the first time. :) The migraine I always get after GA was so much worse too.
I also felt vindicated as they had continually said it couldn't be the stone causing my pain in that area. After the op they admitted where it was laying it would have intermittently blocked my already tiny urethra and would have caused me pain. I TOLD YOU SO! lol
So now im waiting for the last surgery to get any lil bits out and the stent out. I cant wait to pee like a normal person not 100 times a day!
As for the LDN I'm still on it but my specialist is thinking of trying me with lidocane OR ketamine infusions to see if they will help my fibro first we have to wait til this stone business is sorted.
I have found it hard to cope with the LDN not working as I know a few people who have gotten back to some sort of normality with it but as my neuro said I'm med resistant which is the worst super power ever! So maybe thats why it aint working for me who knows but I need a break from pain and new illnesses lol.
Thanks for reading
Kayt X
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