Quote:
Originally Posted by vividDC
Thank you so much for this advice, it is really helpful. I live in North Carolina and NCMs are allowed by law to talk to your doctor, with you also present, after the appointment, so there was really no avoiding what happened last appointment. I have spoken to a few lawyers in the past at the advice of others (mainly co-workers and a family member), but they all told me they don't think I need legal representation at this point. I think I do now, so I will make some calls tomorrow. I've been keeping a journal since February at the advice of a friend, so I've been somewhat preparing for an attorney should this keep getting worse, which it is.
...about the part of your reply that I quoted, are you sure about stopping wearing the brace? My PT mentioned he wants to try to get me out of it, but said I should keep wearing when needed. I can walk short distances around my apartment CAREFULLY without it if not in too much pain, and in my apartment without it, but my balance still feels off and my right ankle is soooo weak. Whenever I have to go somewhere that's not right around the house, I usually put on my brace and have to walk with a cane if it's not a short distance or if the pain is already too intense. It's VERY sensitive to touch and air movements, I haven't experimented much with hot-cold except for the desensitization at PT, the cold part always hurts tremendously. And I do have exercises to do at home and am able to do them for the most part, it's quite rare that I'm completely bedridden but it's happened a few days lately.
Thanks again, I'm a very diligent person when it comes to research and my recovery so if anyone is going to beat this CRPS it's me, but it's definitely hard to keep my spirits up when I never seem to get a break anymore. I can already tell joining this forum was a good move.
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I am sure about the brace...especially if it's a stiff on that really immobilizes. If it's really weak then you may need some support...so maybe try a flexible fabric one that allows SOME movement but also provides some support. Even better though (in my opinion) would be to use crutches or a walker for support to give your ankle the freedom to move.
I went through (after my initial injury which was a sprain after accidentally hitting a dock plate at work) having an air cast, a gel cast, and an immobilizing boot. I will tell you that I was fooled into thinking these helped me because I was able to walk a bit more and pain was slightly less...but I kept getting worse. Immobilizing (even if it immediately feels like it is helping the pain) actually makes the pain much worse over time, meaning you can use it less, which means the pain gets even worse, and so on. It's a snowball effect and is likely why you are feeling it is so weak now.
Obviously you should discuss anything with your doctors first as I don't know your whole medical history...but as soon as I was diagnosed with CRPS the doctor told me to stop wearing the immobilizing boot immediately, during that appointment, and never to put it on again.
I have a small fabric brace that I will wear from time to time that serves two purposes:
1. It protects my ankle from air movements and cold if I want to wear shorts or something where it is not covered by the pant legs.
2. If I know I will be walking on uneven ground (like spending time outdoors) then I put it on to protect me from rolling it bad or having another injury.
Bottom line...immobilization equals bad news. IF you have to wear the brace I would literally ONLY use it when walking, take it off when sitting or for physical therapy, make sure you have lots of sitting exercises to do at home from your physical therapist. This will be key to getting you moving even when you can't do standing/walking exercises.
Also...have you tried ultrasound or stim at physical therapy? One thing that helped me tremendously when I did the outpatient physical therapy was to have ultrasound treatment at the beginning of the session and stim with HEAT at the end. I usually left in better shape than when I went in. Now I have an ultrasound unit at home that helps as well as a portable TENS unit I can use to help the pain now. These don't help everyone but if they have it at your physical therapist's then it might be worth trying. Remember to stay away from ICE...this is very important. Heat doesn't help everyone but it helps most...ice almost always causes much worse pain and can even lead to spread.
Keep asking questions...this site has saved me so many times I cannot even count. Don't know what I would do without the people here...they help keep me sane.