Question of the Day , Saturday the 9th of April, 2022

[Mia6]

Hello, Hello and Happy Weekend!!!

I've been asked to partake in a Clinical Trial of a treatment for RSD/CRPS, the pain syndrome I have, at The Pain Management Dept. at the Main Campus of the Cleveland Clinic. I am considering it.


Would you do it if you had a condition that never actually went away? Have you?

 

[verna davies]

As long as it had been thoroughly tested with no side effects or problems I would give it a go. Constant pain is so debilitating so any possible relief is worth a try in my opinion

 

[Mia6]

As long as it had been thoroughly tested with no side effects or problems I would give it a go. Constant pain is so debilitating so any possible relief is worth a try in my opinion

thanks my lovely sis

 

[Maria Bayote]

I would most probably do it too.

 

[Tik cat's mum]

Having seen how chronic pain can affect your life with my daughter, if it's safe then definitely. I know my daughter would in a heartbeat. It's a relief just to take the edge off, so yes you've nothing to lose IMO even if it only helps a little maybe it's a few more better day's. Good luck I really hope it works for you hun.

 

[Katie M]

Absolutely. I have bad joints, and likely lumbar disc disease as well.

 

[Jcatbird]

I have some chronic pain too. I also have a lot of allergic reactions to meds so , for me, it would depend on my doc approving it but if he did, I would. Not only are you possibly helping yourself but many, many others!! You would be Helped, helper and hero all rolled into one! I hope you can and I hope it helps!

 

[vansX2]

I guess if I lived near the facility offering the Free Clinical program like you I would use it. Fortunately as yet I don't have any debilitating health issues.

 

[rubysmama]

That's a tough call, as I'd probably want to be sure there'd be no chance of side effects before I committed. However, with clinical trials, the side effects, as well as benefits, probably wouldn't be known until a while after the trial ends. And also, usually half the participants get a placebo, and not the trial medication. So for that reason I'd be hesitant. However, I have the greatest respect for anyone who does a clinical trial, as they are stepping into the unknown to hopefully help themselves, but also others. If you go ahead with it Mia6 , good luck.

 

[Jem]

It would depend on what it was all about. I would want to have the all their information on why and how they think the treatment works and what the treatment is supposed to do to the body. Not just...."it helps with pain"....but HOW and WHY does it help with pain?
For example. Is it just a new formulation for a pain pill that affects the nerves or brain in a different way? Or does it change something on the cellular level that is a breakthrough for actually changing the disease?
I have a form of EDS, so chronic pain is just part of my life now. However, I'm not really interested in some new pain pill...but if they came up with a treatment that helps hydrate tissue and/or stimulate proper collagen to strengthen the cause of my EDS, then sign me up. The only thing, as mentioned before....I would be pretty bummed out if it turned out that I wasted my time by getting the placebo...

 

[misty8723]

I might participate in a clinical trial if it was a last ditch effort to save my life, or even to help others with whatever it was I had. Othewise, I probably would not participate in a trial that included an experimental medicine.

 

[NY cat man]

I have lived with chronic- but not yet debilitating- pain for years now. I have also lived with hearing loss to the point of near deafness as well as severe tinnitus for more than 20 years. If there were trials available in this area that offered a cure, I would consider it. I mean; what is there to lose- my hearing?

 

[neely]

Not only are you possibly helping yourself but many, many others!!

This was exactly my first thought too! And I agree with rubysmama comment about a placebo group. Therefore, I would ask the Pain Management group coordinator(s) this question. Whatever you decide I wish you the best of luck and hope you will keep us informed of your final decision. Hugs and special thoughts.

 

[game misconduct]

would entirely depend upon if theres a placebo group in the trial

 

[artiemom]

It depends... I would find out if it is a double blind study of a new drug or therapy. A double blind study is one which each party does not know if they are applying/getting a placebo or not.
~~~~~
Many years ago, my Dad, who had prostate cancer was asked to be involved with a double blind study on a prostate cancer drug. We both discussed it.. He did not enroll in it; because it meant that he could possibly get the placebo---prolonging the cancer treatment.

He did enroll in a bone marrow biopsy study... He had an extra bone marrow biopsy, for research.
~~~~~
If it were a study, to see if a certain new treatment/drug can help with pain... then I would consider it.. IF I could bow out, at any time, if I felt the pain was back or worse.
~~
Right now, there is a study underway in my building.---affliated with Harvard Medical School. The study is to see if electrical brain stimulation on seniors, can somehow induce them to exercise more.
It is a daily EEG type brain stimulus cap--with electronic waves, stimulating certain parts of the brain. It is done daily, for 2 weeks. There are criteria for the enrollment.

I decided against it; because they said that it stimulates the areas of the brain which are associated with depression and anxiety. Nope, do not want to chance that. It is also a double blind study.

((hugs))) to you and whatever you decide.

 

[maggiedemi]

If I were you, I would probably try it... But for my sore leg, I just kept trying a billion things and after 2 years, the pain just mysteriously disappeared. I don't know what I did that cured it. It was like a miracle. That was 2 years of intense pain that I didn't know if I could endure, then suddenly gone...I was supposed to go to physical therapy, but I never did.

 

[Lari]

My dad thought about doing a covid vaccine trial, but because of the chance of getting a placebo he didnt.

I think if I were living with debilitating pain and it was under the conditions you described, I probably would try it.

 

[susanm9006]

Yes I would do it. I went through ten years of invasive endometriosis so I know how hard living with pain is. With everything else you have tried, it couldn’t hurt to try this as well.

 

[MonaLyssa33]

I definitely would. If there was a chance of feeling better, I wouldn't see a downside.

 

[kashmir64]

I probably would. Even if you are the one to get the placebo and not the actual drug. Unfortunately that won't help you, but think of the possibilities for helping others.
A clinical test does mean that some will get a placebo, but if this drug works on others, it may be available to you soon and will help with your ailment. Or, you may be the one to get the drug and it works immediately for you.
Either way, you will be in on ground breaking medicine that could help thousands.