crohns disease and chronic pain in my legs, lower back
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Question of the Day , Saturday the 9th of April, 2022
- Thread starter Mia6
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Cleveland Clinic has a good reputation. I wish you the best go for it and hopefully your life can become better.
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- #23
I have been a patient at CC Pain Management for over 21 years. My pain doc is who recommended me for the the trial. He is the president of the American Pain Medicine foundation. The med is Nitrous Oxide used for sedation for dental patients and it is very similar to Ketamine without the side effects and high cost. I'm in!!! Doc called me back this afternoon. It is being trialled first in RSD/CRPS because it ranks #1 on the McGill pain scale and if it proves successful they will trial it on patients who have other types of chronic pain.
If I were in your situation I think I would.I've never been in your situation,and have never dealt with debilitating pain,the slightest improvement would be such a blessing!Then there's also the fact that such a trial could turn out to help so many other people...I don't think I could turn it down.Sending prayers your way!
Nitrous is a common recreational drug and also easily available ("whippits"---whipped cream chargers) and frequent users have reported less chronic pain. So that's probably where they got the idea, lol. Anyway, I hope it works for you! At the very least you'll be feeling pretty chill, I think.
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Good luck, I will pray that your pain grows tolerable.
Oh for sure! Not only would it probably help me but it would help millions of other people too in the long run. Why not?
Kidney Disease person here, so have my own fair share of lot's of pain throughout the years! It also doesn't have a cure, so would be totally great for things to progress on that end as well.
And on the side note, many congrats!
Good luck! You are doing a great thing!
Kidney Disease person here, so have my own fair share of lot's of pain throughout the years! It also doesn't have a cure, so would be totally great for things to progress on that end as well.
And on the side note, many congrats!
Good luck! You are doing a great thing!
Excellent. Good luck.
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- #30
OUCH!!!!! so sorry..... perisomethig Kidney Disease? but I know you've learned the secret of coping..LAUGH!!!!!!!Oh for sure! Not only would it probably help me but it would help millions of other people too in the long run. Why not?
Kidney Disease person here, so have my own fair share of lot's of pain throughout the years! It also doesn't have a cure, so would be totally great for things to progress on that end as well.
And on the side note, many congrats!
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- #31
crohns disease and chronic pain in my legs, lower back
[/QUOOUCH, Jenn!!!!
If there was a study in my area about migraines, being done by a reputable source, I would be first in line. So yes, if you're happy with the people doing the study, go for it.
Sorry I'm confused by your response? Perhaps I am misreading but are you mocking it or being genuine?OUCH!!!!! so sorry..... perisomethig Kidney Disease? but I know you've learned the secret of coping..LAUGH!!!!!!!
If you must know I was born with four kidneys - 3 and a half didn't work. On top of that I had severe Hydronephrosis. I also had major problems with my ureters and bladder. Long story short I had 5 major surgeries from baby, childhood to teens, spending on average 6 months in the hospital each time. I've also had other procedures to fix conditions like hematuria or urinary tract infections. While I gratefully stable at the moment I will likely have kidney failure and require dialysis sometime in my future and thus a transplant. Dialysis is very difficult and time consuming, with an average life expectancy of 2 years. A transplant does wonders and is something of great appreciation but it is a treatment, not a cure. It is a miracle I have lived this long since I wasn't suppose to, and it will be a miracle that I will live until 90. 50,000 Americans die of Kidney Disease every year, more than breast cancer and prostate cancer combined. I can be strong, content and focus on so many other great things in life, but I can also feel secretly scared when I think about it.
Alongside huge pain throughout my surgery years, I also deal with some daily pain or discomfort that I have to be mindful for.
If I am indeed totally misreading/misunderstanding something and need explaining, my sincere pardons on the end for the reaction blurb and rant in response
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I read it as laughter is the best medicine? Not mocking.
I was born with DI George Syndrome - I probably would participate in a clinical trial because there is such little understanding about DI George, so much so that I wasn't even diagnosed until I was 15.
So is their any medications that help the absence of a missing portion chromosome 22 ?
I take duloxitine currently, and used to take pregabelin. The medication is similar to the medication people with fibromyalgia take.
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- #39
Oh, God NO Cas!!! You are always so positive and I didn't mean to be so nosy!! What you've been through is horrific and I am so sorry. Mags was correct in her interpretation of laughter is the best medicine. So sorry I haven't responded earlier but have been in a massive flare.bI hope you are feeling ok?Sorry I'm confused by your response? Perhaps I am misreading but are you mocking it or being genuine?
If you must know I was born with four kidneys - 3 and a half didn't work. On top of that I had severe Hydronephrosis. I also had major problems with my ureters and bladder. Long story short I had 5 major surgeries from baby, childhood to teens, spending on average 6 months in the hospital each time. I've also had other procedures to fix conditions like hematuria or urinary tract infections. While I gratefully stable at the moment I will likely have kidney failure and require dialysis sometime in my future and thus a transplant. Dialysis is very difficult and time consuming, with an average life expectancy of 2 years. A transplant does wonders and is something of great appreciation but it is a treatment, not a cure. It is a miracle I have lived this long since I wasn't suppose to, and it will be a miracle that I will live until 90. 50,000 Americans die of Kidney Disease every year, more than breast cancer and prostate cancer combined. I can be strong, content and focus on so many other great things in life, but I can also feel secretly scared when I think about it.
Alongside huge pain throughout my surgery years, I also deal with some daily pain or discomfort that I have to be mindful for.
If I am indeed totally misreading/misunderstanding something and need explaining, my sincere pardons on the end for the reaction blurb and rant in response
Much, much love,
Mia
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- #40
I have never heard of it, Alice but I'm going to look it up.
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