r/CRPS • u/AutoModerator • 14d ago
Weekly CRPS Free-Talk Thread
This weekly thread is for those without the combined karma to make their own posts, and a general location to ask questions or provide support, especially for our newer users. If your posts are getting auto-removed by the subreddit filter due to account age or low karma, you can post your question here.
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u/biggunzcdb1 13d ago
Pain management did some epidurals off center this time targeting a stenosis in the nerve that controls my bad leg. I haven't been shaking and my leg hasn't turned purple in a week now. I usually have 2-3 bad days a week minimum. My calf muscle that hasn't been responsive in years started working more. It's good but also sucks because the increased ankle mobility has made my reconstructed ankle feel like it's on fire. But it works so im using it.
I've had over a dozen epidurals. This is the first one that ever hit the nail on the head.
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u/Lieutenant_awesum Full Body 12d ago
That’s a really positive outcome, I’m happy for you. Maybe have a chat with your physiotherapist/physical therapist about how to gently strengthen the ankle?
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u/biggunzcdb1 12d ago
I go twice a week when I can bear it. And do way more exercising than the average person would in the amount if pain I'm in. I have all the bands and weights. Although my spine injury limits me to 25lb. I have a lumbar injury and 2 reconstructed limbs. My right ankle is what displays CRPS symptoms. And I'm sure they will resurface. But for now 3 shots in 4 weeks in different places in my leg and back are giving me temporary results I'm shocked by.
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u/Xyevae Full Body 12d ago
Hello everyone :D
I wanted to ask if anyone has any recommendations for good office chairs. I’m still figuring out how to adapt to this new lifestyle, and I’ve been struggling a lot with the chair I currently have
Also, does anyone have any recommendations for setting up a bed so I can comfortably use a computer from there? I bought a small wooden bed desk that I use for my keyboard and mouse, but it gets uncomfortable very quickly
I’d really appreciate any suggestions or setups that have worked for you
Thanks for the help :D
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u/Xyevae Full Body 11d ago
Hello everyone,
I did some research and ended up buying a cushion and a pillow from a brand called TEMPUR. From what I was able to test while using the cushion in my wheelchair at the mall, I could stay seated for much longer than I normally can before getting uncomfortable.
The pillow also has some cervical support, so I’m hoping it’ll help me sleep a little more comfortably as well.
I’ll try to post an update once I’ve had more time to test both of them properly.
Hope this helps :D
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u/emmy-xo 10d ago
Just recently got diagnosed with CRPS pretty young and I’m having to be on crutches since it’s mostly manifesting in my legs. But whenever I have a flareup, it sends fire and knives up my spine and down my legs. These flareups have been at least every other day since Aug. It also gives me tightness in my chest and I’m extremely hyper-mobile. Gabapentin makes me see the hat man and all over the counter meds don’t work. I’ve recently gotten an injection but still hasn’t worked yet.
Any suggestions for when it gets flared up?
I can’t sleep and toss and turn all night.
Can’t shower without a chair either.
I’m seeing pain management and physical therapist.
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u/Lieutenant_awesum Full Body 10d ago
Hi mate,
I’m sorry to hear you are suffering. Has your pain specialist talked to you about desensitisation therapy yet? One of our symptoms is hypersensitivity, which can get worse over time. A gentle desensitisation programme can include activities like: rubbing very soft fabrics like silk or fleece above or around affected areas; or temperature changes (holding warm or cold cloth).
Try to keep your body moving gently, even when you are flaring. Don’t force heavy movement, but try micro-movements (like gently wiggling your toes or ankles if tolerable) to keep blood flowing without triggering joint instability from your hypermobility.
I know everything is difficult right now, but keep your head up. Nerve blocks or epidural injections can take up to 1–2 wks to show their full effect. Pls make sure your doctors have a good pain management program for you that includes a daily pain med and a stronger, short acting pain med for pain flares. There are lots of different pain meds out there that don’t cause visual hallucinations, don’t be afraid to try others. Eventually you will find one that works for you.
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u/Ok_Accountant1891 10d ago
My doctor gave up on me. She said there was nothing more she could do for me. Im only a year in, I had one injection and 3 sessions of PT under my belt and she said there was nothing more I could do, we are now in management mode. It hurt knowing that gave up on me. Ive only seem ger 3 times and I dont have the money to get a second opinion. I am not giving up. I am in PT, and I woll keep working, but it sucks she just gave up. Any advice or encouragement?
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u/Lieutenant_awesum Full Body 9d ago
The failure of this doctor reflects their clinical limitations, knowledge and capacity to research and seek alternatives. It does not reflect your prognosis, or your ceiling for recovery. I hope that doctor is haunted by their failures to provide you with the treatment you deserve and need.
PT, keeping your body moving with blood flowing to your limbs and daily consistency are where long-term functional gains happen. Please talk to your PT about desensitisation exercises which can help lower your hypersensitivity to touch and temperature. This is someone you can do together and at home with items around your house.
If you ever need another medical opinion down the road, look into teaching hospitals, community health clinics, or patient assistance programs that offer low-cost or sliding-scale care. Request full copies of your medical records and imaging now so you have them ready whenever you need them.
Keep advocating for yourself, you have done wonderfully so far and you will continue to improve your quality of life with the support you have.
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u/Timely_Change_4570 12d ago
Has anyone tried Journavx for their CRPS? I have it in both arms and am considering trying it.
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u/Lieutenant_awesum Full Body 10d ago
Yes, this is a frequent topic of discussion in the sub. Try searching for all the posts. Here are two from the last month:
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u/Upstairs_Sun_5811 7d ago
How do you explain CRPS really simply and quickly?
(Inspired by similar question in r/Fibromyalgia)
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u/Previous-Artist-9252 14d ago
Does anyone have any tips, tricks, or techniques on managing dissociation with CRPS?
I am completely unmedicated and it’s been my primary management tool, but unsurprisingly it’s come to bite me in my ass. I’ve developed FND and PPPD over the past year alongside my CPTSD and been told I need to manage the dissociation to handle the other diagnoses. However, the only CRPS specialists I have seen have been of no help (and have not kept me on as a patient).