Ot therapist told me I must start going without my lil things and start using hand n arm more. Desensitize it and work through the pain. It's been 4 days. I'm working through it, not wearing fleece, letting it go with out brace which has fleece inside. I wanna cry from the muscle spasms, but I want to get better. Has anyone else experienced this? Also increasing lyrica today so it'll be 100 mg am and 100 mg pm

OT didn't work for my son instead it made his pain worst, 2 months later the therapist said OT was not doing him ay good.

Does your OT also have you using mirror therapy to help with desensitization? And are you on amitriptyline in addition to the lyrica to help with the muscle spasms and sleep?

Yes, diligently practicing desensitization and slow gradual increase in limb use will help. Anything that helps promote use will actually help this includes warm water soaks and daily therapy to promote use and distract you from pain. It takes a ton of patience as it is a very slow process but, at least for me it helped me tolerate at least some clothing on my hip/thigh.. which obviously isn't an area I could leave bare daily.

I do hope it helps you as well,
Tessa

it will help providing it's done slowly and gradually, my physio was extremely aggressive and because at that time I knew nothing I told them to keep going even thoguh I wanted to beg them to stop. Was told by specialist 1 yr later that they had destroyed any chance of gaining remission, they also caused permanent blood vessel damage by having me on hot and cold water contrast therapy 3 times a day for 7 weeks

Keep in mind that OT/PT etc., only help when the person working with you has knowledge and understanding about CRPS and is open to being flexible with your care as no two people respond the same. Doing OT/PT at the office isn't enough it will be only beneficial if you are able to take what you learn in formal therapy and do this at home several times per day. Everything that is being offered for treatment is only to "assist you" in managing pain and keeping the affected limbs moving rather than a "cure". Personally I found when I stopped wondering if things would 'work' and instead believed in my mind (hard as it is) that it would "help" it was much more successful.

It helps only if it is NOT causing major pain flares. Anything that makes your pain a LOT worse is bad news for your CRPS as it stimulates those already over active pain receptors...

I am surprised that they are doing this aggressive therapy at the same time as settling you into a new pain medication (the Lyrica). It's better to stabilise your pain and current symptoms with the new med (if possible ) and then start the therapy, knowing your 'normal' pain levels and physical impairment. That way you know how your body is reacting to the therapy and can be careful not to push too hard... At the moment, they are never going to know where your pain SHOULD be - and conversely whether or not they are pushing you too hard.

I'm doing ok on 50mg of Lyrica morning and night, and although I can up it if I need to get through a bad patch, generally that keeps me ticking over. BUT I only know that because I had no other changes going on at the time I tried it... If I'd been still deep in physio I'd never have known, and probably would have titrated up to the big doses again - not realising that I was actually trying to control a pain flare caused by the physio, rather than my usual levels.

Be aware of your body and call stop on this if you aren't happy at any point. There are too many of us made worse by poor/careless/ignorant medics who THINK they know CRPS....but actually know far less than us.

Take care of yourself and really good luck.

Bram.

I've done two sessions of PT in the pool. The first time I had a therapist who was like "this is real, this is not in your head" and very understanding of this. I felt good after. Yesterday I had a different therapist who I didn't like, she wasn't paying attention to me. I'm a great swimmer and keep balance well in the pool, but she made me over do it. I'm really sore today.

First therapist did talk to me about desensitization. Start easy, wear my shoes instead of flip flops, wear socks with elastic, etc.

It'll be good to read all of the responses.

So far so good, day 3 of no brace n day 2 no fleece during day. I wanted them but didn't do it. If they truly are just a crutch so to speak then it's better to let them go, and move on. She explained that I can't get better if I keep doing n using my things that I do. By resting and not over doing things is much better

Yeah!! Your optimism and positive attitude will help tremendously with your ability to manage symptoms/pain when you need it most. Personally, I look at PT/OT as a building block to my own at home therapy routine. Having a daily routine in place early on in this journey is just as important to our physical health as our mental health. And at the end of the day even if you weren't able to accomplish much else, you can be proud of your therapy goals and achievements! In turn, those around you will see your determination making them much more likely to jump in and lend a hand when you need it, without complaining or having to ask for it.

Do keep in mind the nature of CRPS (and general healing process) is that the pain can wax and wane or increase suddenly for no apparent reason. Using distraction, warm baths or epsom salt soaks, reading, journaling or just reaching out to a friend to talk about something that makes you feel good often help manage during tough times.

In my experience, the desensitization process was geared toward the allodynia, increasing tolerance for things touching your skin in the affected areas.

If you are ready to cry from muscle spasms, it sounds like your problem is "deeper" than the skin issues. Going through desensitization will normally cause DISCOMFORT to the skin. If that pain is too severe, in my opinion, the pain should be better managed BEFORE getting aggressive with desensitization techniques. If this process is causing deeper pain and burning to your muscles/main RSD site, it sounds like this therapist is overdoing it with you.

Pushing through discomfort = reasonable. It's what we all have to do to get out of bed and get moving each day.

Pushing through pain = BAD !!!!! For me, that's just asking for days of markedly worse pain after a massive inflammatory response.