Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 03-17-2016, 09:45 PM #1
Lauraw1967 Lauraw1967 is offline
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Post Managing flares

Hi, Everyone. I'm new here. I have CRPS in both feet that developed after a bunionectomy in my right foot in June 2015. I was diagnosed early and started on meds and aggressive use of my feet. My feet still turn colors and have the burn on a regular basis but nothing debilitating. I'm still able to run and carry on with my life for the most part with some modifications. I guess I'm "highly functioning " CRPS. However, I do have flares that are miserable. I'm trying to manage this without opioids. I'm on Lyrica and Imipramine daily. I have lidocaine patches that I use at night so the pain doesn't wake me up. My feet actually feel better when I'm up and around.....maybe distraction, but I can't be up 24/7. What medications that aren't opioids or methods do you use to manage flares? Thank you in advance for your advice.
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Old 03-17-2016, 10:54 PM #2
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When I have a flare up (and even when I don't since I have pretty high pain levels most of the time) I use the following:

1. First...hot bath with Epsom salts.

2. Ultrasound therapy with a home unit I got on Amazon for $40. I do the treatment on the areas that are flaring for 15-20 minutes usually.

3. TENS unit surrounding the area of flare up if possible. This only works for me if I can surround the area with the electrodes...not so good if it's a more generalized flare up over a large area...but when it DOES work this has the biggest impact on my pain levels and I will run it for an hour or more straight, rest and hour or two, then run it again and so on.

4. Heat patches...these help a lot. I get the one use ones like Thermacare but the cheaper generic versions. I find the neck ones work best for me because I can wrap around my ankle, foot, knee, arm, etc...wherever the flare up in. If it's my feet or hands I use the little heat packets they sell at sporting goods stores and put those in socks, shoes, or gloves for the same effect.

5. I do physical therapy exercises that I was given when I did at home physical therapy when I was in a wheelchair. These are non weight bearing exercises that allow me to move but do not require me to stand or do anything too strenuous that I can't handle during the flare up.

6. I have a playlist on my iPod that I use for flare ups...mostly instrumentals and scores from my favorite movies and tv shows. I use ear buds...for some reason having the ear buds in vs listening on a speaker helps more to calm the flare.

7. Find something I can do sitting to occupy my mind and distract me. TV does NOT work for me. I usually do some cross stitching, work on a puzzle, color, etc...something I can really lose myself in and that will really occupy my mind so that there is something other than just the pain. I also sometimes listen to audiobooks from audible (instead of the music) WHILE I do these things to assist in the losing myself in something else and keep my mind off the pain.

Hope some of that helps...I don't use medications at all for my RSD pain so the coping mechanisms for me are key to functioning each and every day.
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Old 03-18-2016, 09:57 AM #3
Seaglass1972 Seaglass1972 is offline
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Default Flare ups

Hi =)
I am still new to this world of CRPS. I had a work related injury 12/10/15 and now have the CRPS. I am still fighting to see a neuro, but besides all of that.

Do you have flare up's that come and go?
I find the Physical therapy is helping me move my arm, since I had a shoulder injury that kicked off all of this. It is weird, because my arm will move better, but I still have the pain and all the other CRPS symptoms. I keep asking myself if this is normal? Do the flare up's come and go like this??
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Old 03-18-2016, 10:50 AM #4
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I do have flare ups that come and go but am also ALWAYS in pain. Flare up pain is the worst and very debilitating. I often describe my pain as 3 types of pain.

1. Burning pain that radiates outward...I can best describe it as my bones being hot pokers and the burning radiates out from those pokers. This is my all the time pain...and it can intensify during a flare.

2. Burning pain on top of my skin...like someone running a blow torch on my skin whenever anything touches my skin. This can intensify during a flare where I just cannot stand anything touching my skin at all.

3. The bone crushing pain. This only comes during flares and it the worst of the three. It feels like someone is literally crushing my bones...grinding them down to dust. If I feel this in my hands they actually claw up or freeze in a fist and I cannot bend my fingers back without help. I cannot function at all when this happens.

My RSD came from a work related injury so I feel your pain with that whole process as well and am sorry you have to deal with that on top of everything else. As far as physical therapy...just remember to keep moving. You need to be careful not to over do it but immobilization will actually make the pain much worse. Flare ups can happen to me in my hands if I am not moving them regularly...like if I am holding something and forget to flex my hands. I do easier, smaller exercises when I am in a flare up but even then I have to make myself move or the flare up will get worse.
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Old 03-18-2016, 11:21 PM #5
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I, too am in constant pain but am still able to function most days. My flares can last from one day to a week. This is something else, again. I consider myself lucky because I've read many of the other members profiles and they have it much worse than me. What a rotten disorder to have.
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Old 03-19-2016, 08:23 AM #6
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What ended up happening with the work comp for you???
I mean really, they have all of my diagnosis and say I can't see a neur because my diagnosis is "UNCLEAR"....... So upsetting and negligent on there part I feel.
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Old 03-19-2016, 10:18 AM #7
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Quote:
Originally Posted by Seaglass1972 View Post
What ended up happening with the work comp for you???
I mean really, they have all of my diagnosis and say I can't see a neur because my diagnosis is "UNCLEAR"....... So upsetting and negligent on there part I feel.
First...if you don't have an attorney then get one. If you have one then get them on it...if they have to take it to court to get them to approve the referral then they should be able to do that. The rules in every state are different...so a lawyer will help you navigate through all the various tricks that work comp pulls.

After several years when I was cleared to go back to work I ended up settling my case with work comp for RSD. There are lots of reasons not to...like continued medical treatment which you won't get if you settle. But in the end it was the best decision for me. Unfortunately I am dealing with work comp again after a fall off a ladder at work in October that has seriously messed up my shoulder.
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Old 04-17-2016, 05:33 PM #8
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Quote:
Originally Posted by Lauraw1967 View Post
Hi, Everyone. I'm new here. I have CRPS in both feet that developed after a bunionectomy in my right foot in June 2015. I was diagnosed early and started on meds and aggressive use of my feet. My feet still turn colors and have the burn on a regular basis but nothing debilitating. I'm still able to run and carry on with my life for the most part with some modifications. I guess I'm "highly functioning " CRPS. However, I do have flares that are miserable. I'm trying to manage this without opioids. I'm on Lyrica and Imipramine daily. I have lidocaine patches that I use at night so the pain doesn't wake me up. My feet actually feel better when I'm up and around.....maybe distraction, but I can't be up 24/7. What medications that aren't opioids or methods do you use to manage flares? Thank you in advance for your advice.
It sounds as if you are functioning similar to me. I have to ask what shoes you wear. Even when I'm not experiencing a flare I still have pain, extreme sensitivity and a bit of swelling. I've been wearing the same pair of leather boots and sneakers for over a year. The bunion on my good foot is rebelling. However, whenever I try a new pair of shoes (or even socks) that feel OK, the tingling and burning gets worse the longer I wear them - sometimes only last minutes. I have many "new" shoes in my closet I've been unable to wear. Any feedback would be appreciated. Thanks!
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