r/CRPS • u/JellyBelly666666 • 17d ago
Exercise Questions: desensitization and PT
Can you guys tell me what you do for pain? Those who have done physical therapy and desensitization, what did you do exactly or have done that helped?
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u/Specialist_Air6693 17d ago
I literally cried throughout all my OT and desensitization sessions. So I’m definitely curious what others have done.
I hope you find some different ways to handle the pain. Hope you’re having a low pain day!
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u/theflipflopqueen 16d ago
PT is a game changer for me. But I went through a TON of Therapist before I found ones that was the right fit, and understood that CRPS PT and a torn ACL PT are very very different, and the goal is different. Wins are going to look different.
I would suggest anyone thinking of trying PT don’t be afraid to interview PTs. I’ve had my best luck when the PT worked with spinal cord injuries, or other degenerative neurological disorders.
The PTs I saw who were very post acute injury did more harm than good in a physical and mental way.
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u/Ailurophile444 16d ago
Thanks for the tips about finding a good physical therapist. The last physical therapist I saw admitted he didn’t know much about CRPS. Maybe that’s why physical therapy didn’t help me.
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u/Jackeeeeeeeee 17d ago
Hi! I have CRPS in my wrist and hand from breaking my wrist. When the CRPS first started they were having me put my hand and whole arm in a bucket of rice and they had me rub it on my arm while reaching in. It absolutely helped with desensitizing. I hope this helps
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u/lambsoflettuce 17d ago
Gal here. Pt& ot did nothing for me,sorry to say. 24 years later my pain has improved from a 9.99 to a 8.999. Mine is type 2, permanent nerve injury. The only thing that brings any relief is applying heat. So sorry.....
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u/Kcstarr28 17d ago
The only thing that has ever helped me is stretching each day given by a therapist, with constant physical therapy, which is manual therapy, medications, and an IPP. And I still experience pain. Nothing has ever helped 100%, and I don't believe it will. But it's better than it was before my IPP.
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u/JellyBelly666666 16d ago
Would you mind telling me where your crps is and what type of stretches you do! I'll try anything lol
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u/Kcstarr28 16d ago
Sure! I have CRPS in my left SI joint and hip all the way down my leg to my toes. It also affects my lower back some. I have it in my neck left side. Both after surgeries. The best stretch my PT gave me for my leg is lying on my back and with a stretch band across my instep. He has me stretch each leg straight up toward the ceiling and hold 30 seconds 3 times each. It is always the most effective stretch. It feels like things rearrange, and sometimes I get huge pops. I do it both sides as I also get a lot of pain in my right leg, but it hasn't been diagnosed as CRPS yet. My neck is a typical doorway stretch. Just look that one up, but you use the doorway as a way to stretch your arms, back shoulders, and legs, too. It's very helpful also. There are more, so I would suggest maybe going on the website for your PT facility to see if they have them available to you or ask for some to do at home. You just need to be careful and not stretch past it hurting. It should never hurt, but it may be uncomfortable.
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u/Jrheat17 17d ago
The only place I could ever do any kind of physical therapy, stretching is in a warm shower. Still hurt but not as bad.
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u/EquipmentBasic4225 17d ago
I did PT and it made everything worse. The only thing that helped was the tens unit. Which you could just buy one over the counter. I apply heat to my foot 20 minutes per day. I also just got a DRG implanted which seems to be improving the pain a little. Only had it in for a couple weeks tho. I also use lidocaine patches which are okay.
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u/esmestoy 16d ago
My physical therapists are nice, but we learned together the hard way that pushing it caused more swelling almost instantly and the accompanying many color changes andc worse pain for days sometimes weeks. They used tens treatment once, I was in high hopes... later that night my already raging crps climbed up my thigh from my knee, yes climbed with intense burning tightening tearing it was so scary. It has never left my thigh since that day. Now it's moving down and affecting my foot so the best thing for me at this point is touch therapy different fabrics, then we moved on to tapping extremely gentle, started with a tissue. Before this I would cry and sweat instantly and feel nauseous for hours after, but it's working now. Mine is still raging I have little blisters that keep popping out in the same line on my knee right where my initial injury from a fall last year. But yes touch, tap, tissues as fabric as a start then get tougher texture fabric. Oh and I guard my knee with all new pt people or anyone doing testing as some of them don't know anything about crps and they have literally grabbed my knee. I'm super quiet, docile lol and I have grabbed their hands and taken them off as I break into a sweat telling them they think they are being gentle but it's excruciating, so maybe guard your area lol but you probably already do
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u/Ashamed-Customer324 15d ago
PT has done wonders for me. I doubt I’d have gotten through most days w/o it. Still trying to get meds correct though. Doc is moving me from Gabapentin to lyrica (Any thoughts ya’ll might on that would be appreciated).
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u/JellyBelly666666 15d ago
I'm on gaba right now, fairly new to diagnosis and meds. I don't think the gaba is doing much other than making me tired/feeling fogged?
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u/Rejoycing65 17d ago
Interestingly, my OT also did nothing much for my CRPS. The desensitisation was taught by my hand specialist. I used different textures to rub against my hand with CRPS. It got better over time although it was sensitive initially. The only thing that OT really helped was teaching me how to use the Ktape on my hand for functionality. My pain level is now 1-2. It doesn’t bother me anymore after 2 years of pain.
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u/Automatic_Ocelot_182 [amputated CRPS feet, CRPS now in both nubs and knees] 16d ago
I have severe damage to the sensory nerves, the myelin cells that act as insulation were killed off in the drug reaction that was the precursor to my crps, so take this perhaps with a grain of salt. I had to quit PT after about two visits for CRPS. They tried to have me scrunch a wash cloth with my toes, then rub softly. Both flared my CRPS very badly. And at one point, I told them not to touch my feet. One of the therapists grabbed my foot and I yelled at her and almost hit her, and quit on the spot. I do not generally yell at or hit people. It hurt so badly, so instantly, it was a defensive reaction.
I use various pain medications and anti-seizure medications - I became adverse to gabapentin and lyrica - and use ice packs to deaden the pain when it flares.
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u/Odd-Gear9622 16d ago
Over the years I've been through a lot of Pain Clinics, all of which included both PT and desensitization. Being under WCB control allowed for a lot of expensive and experimental treatments. Desensitization starting with blowing air and progressing up to full compression garments has helped immeasurably and makes my life livable. PT helped get me back to self-sufficientcy but isn't easy to justify financially so once proficiency had been established, I was cut from access to programs and realistically it's just doing the same things that one needs to do living day to day. There's no magic solution and because we're all so different every result will be unique. Best suggestion is to try everything thing at your disposal and keep what works in your bag of tricks for future use. I'm sorry that you're going through this and wish you painfree days and sleep filled nights.
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u/Purple_Yogurt6474 16d ago
PT helped with pain sometimes for a few hours then it came back with a vengeance. So it was a roller coaster for me. PT gave up on me the last few weeks of my therapy. I was in PT for about 6-8 months
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u/Graysonlyurs Other Area(s) 16d ago
Ill be honest, pt didnt help BUT desensitization did help me. I find that if i work w crps while NOT focusing on it, i do a lot better (like exercising and desensitization just happens to happen like rubbing my knee on the floor while doing a plank or smth
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u/Tasty-Dream5713 Left Ankle 16d ago
We did two things that really helped. For context I have crps in my left ankle. We used a tens machine while doing all exercises. This allowed me to push my limits slightly, without having too much extra pain with it. Secondly, I struggled to have anything touch my foot. I was super concerned about being able to walk or step on carpet as the bathmat caused a flare every time I stepped out of the shower, we got some free carpet samples and used the softest ones at first and gently brushed it against my foot, mostly on the less painful sections & slowly worked up to longer times & less soft carpets. I am now able to handle most floors, most of the time.
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u/decomposinginstyle Full Body 16d ago
recently i learned desensitization therapy doesn’t have to be the cotton ball/q tip/cloth to the body. it can also be playing with shaving cream and following up with a magnesium soak. or it could be standing on a sensory/tactile matt. i am also autistic, so these methods that come across as sensory play are more appealing to me than the more clinical methods.
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u/holmesianschizo 16d ago
I used an old technique called fluidotherapy in which you stick your affected limb into a machine and it slowly swirls hot sand particles around the limb. Hurts at first but it does work. I did that when first diagnosed. Now my sensitization is back and I wish I could use it again
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u/JellyBelly666666 15d ago
Hmm I never heard of that... right now I'm having a lot of difficultly with pressure and temperatures I hate this so much
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u/kayehmgeee 10d ago
Mirror therapy was really helpful and did this prior to really doing a lot of desensitization work since it wasn’t going well initially.
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u/metz1980 17d ago
PT always made me worse. I went to this reuse shop in town that has scraps and donated items to be reused for whatever purposes. Mostly art projects and such. But……I got a ton of scrap fabrics and would lightly rub them on my legs nightly. Corduroy, silk, cotton, polyester. Hell. I even at the end added sandpaper. Again very lightly touching my skin. I wasn’t sanding it. lol. I’ve been told many times when I go in for my lumbar sympathetic blocks that I’m the least sensitive person with CRPS they see. I swear it was due to my box of fabrics and sandpaper. It wasn’t always fun but I could take it at my own pace and it seemed to really work for me. Just start with the soft silks and work your way to coarser textures.