Sharing a program my son is in... Through Hershey Medical

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Dieann63
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 11/4/2016 11:07 AM (GMT -6)   
So, I have had Fibromyalgia since 1998 and in 2000 I had an adorable baby boy, whom I named Cordell. I called him Piazano, because during pregnancy the fatigue from Fibro made me have major memory issues and I could not remember his name... crazy yes yes yes!

So, Piazano is now 16 and guess what??? He has major Fibromyalgia and AMPS * Amplified Muscular Skeletal Pain Syndrome. And many other illnesses too. Tourettes.. Autism.. the list goes on. Hes a happy human, even though he got handed this pile of crap.

So, I had a Rheumatologist for many years... and felt she was not doing anything for him. He was suffering and I changed doctors this year. New Doctor is awesome, and she enrolled him in her study of Physical Therapy / Her own special Desensitization program.

I have a youtube channel, that has a few videos of him doing the desensitization, but we really need to do a serious video to show it. The video is really for a product review of a roller.

The roller we have been using is from Live Infinitely Massage roller... We love that one!!

THe logic behind the desensitization program is that you train your body, and skin not to hurt when it gets touched!! There is not adult programs of this type, but I am doing it along with my son **the things I am capable of doing. He is in a pretty rigorous PT routine that I can in no way keep up with!!

Burpees!! An exercise I never heard of, and I could never do even if my life depended on it!! He has a paper packet of exercises and desensitization things to do. I will try to copy that and post it.

He has seen some difference in some of his pain... but it is still here. He has been on the program only 2 months. And has been on a two week break right now due to getting his tonsils out.

I will try to have him do a video of his routine so that if anyone wants to follow the program, they can do what they are having him do.

This doctor states that she has had some kids that are no longer suffering with fibromyalgia!! But that you have to be very dedicated to the program for it to work.

I will try to get back to you with a video and the info sheets
My You tube is under Dieann63, I think.. if that's not it, let me know.
the videos that have him doing the program are for product reviews of the Live Infinitely Massage Roller and Foam roller.

Luvzminis
Veteran Member


Date Joined Apr 2008
Total Posts : 2639
   Posted 11/10/2016 1:37 PM (GMT -6)   
Hi Dieann63: Thanks for sharing! I had heard about using the rollers, but that's as far as I got. I only had a chance to watch one of your videos so far, but I now have a better idea as to how they 'work.'

I hope both of you are doing well! Please keep sharing if you can. Best wishes to both of you.
"Someone who goes through life with an open heart always finds something to be thankful for."

---Father Kentenich

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2050
   Posted 11/11/2016 2:47 PM (GMT -6)   
Thanks for sharing,

I cannot tolerate the foam rollers yet , but use different variations of pool noodles to loosen areas that i believe are trigger points.

I also occasionally get a therapy called strain and counter strain which release those tight areas that i cannot work out myself....

We all needed this help since we were younger, but it was not out there.

I also use many tools for pain relief, like acupressure matt, the willow curve, microcurrent therapy, etc..

Lj

Dieann63
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 11/13/2016 7:07 PM (GMT -6)   
I will try to make a real video of us doing the desensitization.. most of my videos are just product reviews. I will get on it!!

I hope

Hope you both are having a decent day today {{{hugs}}}

Diane

nutmeg65
New Member


Date Joined Nov 2016
Total Posts : 2
   Posted 11/24/2016 10:37 AM (GMT -6)   
I am in awe of this site - already gleaning little nuggets of information regarding the signs and symptoms of Fibromyalgia - all of which resonate with what my daughter experiences daily.

She has managed to get into college today - a rare accomplishment (but I know she'll walk straight in the front door, up to bed and sleep a disturbed sleep - which I have seen from other posts is a symptom)

Thank you
nutmeg65

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/24/2016 11:31 PM (GMT -6)   
We all have sleep issues of some form, nutmeg.

I have insomnia.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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