Yes, even swimming

But I have had it since4/2005

Yes. Had it 16 years. Just listen to your body and know when your body needs the rest.

I️ was diagnosed when I was seven, I’m 23 now, and while my pain has stolen a lot from me, I’ve learned to live with it. I️ use a wheelchair for concerts and theme parks (You and everyone you’re with gets to the front of the stage and the front of the line for rides. If we have to live in excruciating pain, we may as well take those two perks.) but aside from that I️ rarely use mobility aids. I’m still going through my journey, on Tuesday I’m getting the SPRINT PNS implant, but I️ will say, one thing that helped me IMMENSELY was aqua PT. Instead of doing PT in a gym, you can do it in the pool. They have foam weights you have to push under the water, you walk back and forth through the water, and I️’ve found that once my legs are fully submerged, after about five minutes the movement of the water actually eases my pain. Like the water is putting out the fire. Desensitization SUCKS, but it’s necessary. Take a rough washcloth and rub it over the affected area for as long as you can, and I️ HIGHLY recommend freezing Dixie cups of water because you can peel the paper down and use it like an ice crayon to soothe the area afterwards. There are SO many new noninvasive inventions and just as many minimally invasive procedures. Three years ago doctors were just throwing pills at me. You have to find a specialist that is aware of PNS devices, PEMF devices. ABSOLUTELY get the Oska Pulse. Wear it as often as you can, you don’t feel it at all it isn’t a tens unit, it uses electromagnetic fields to retrain the nerves. They also make PEMF mats you can sleep on. It makes a world of difference. (For everything honestly. The Oska takes away my period cramps 🤷‍♀️) This diagnosis is a devastating one, but all of the options that are available now have brought be back the hope I thought lost when I️ was twelve. The SPRINT PNS device for example, it’s temporary (two months is the size of a human hair, it targets the specific nerve as opposed to a spinal cord stimulator. 75% of patients reported a 50% decrease in their pain which continued after the device was removed. The patients that didn’t report any pain relief are reporting a better quality of life. So say your pain is always at a 7-8. Sitting on the couch it’s a 7-8. And hiking. ❤️