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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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01-01-2018, 06:23 AM | #1 | |||
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There is definitely something that hasn't healed over all the way...I think it's a very small area but when I took my ever so fun sponge bath yesterday a small bit of soapy water ran over the incision and man did it sting/burn! The pain right now that it feels like it's tugging and pulling apart where it's not healed all the way yet. I'm calling Tuesday morning and will send pictures. I'm a bit worried about infection just because it's so red around this incision (not the other one) and there are itchy red bumps around the area (but those could be a reaction to the tape I guess). I will definitely look into those bandages and things LitLove and I have taken pictures of it to send to my st judes rep if needed. Right now the only comfortable position is laying on my stomach. Had a small flare up in the pain in my leg after laying on the floor because of my back hurting ...but it maxed out at a 6/10 and is now back to its normal 2. |
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"Thanks for this!" says: | RSD ME (01-01-2018) |
01-02-2018, 03:00 AM | #2 | ||
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I am experiencing lots of itching too. A couple of things that I pulled from my brain’s cobwebs that have helped decrease the itching- drink lots of fluids. Being dehydrated increases the itching. Also, temperature affects itching. Being hot or even warm can increase itching. I just gave up my electric blanket and the itching has eased. Lastly, it seems that my whole body went into itching overdrive. I can’t bathe or scratch the areas on my back but I did sponge off the rest of my body and applied moisturizer. That seemed to quiet the itching down a lot- including my back and incisional areas.
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"Thanks for this!" says: | RSD ME (01-19-2018) |
01-02-2018, 03:04 AM | #3 | ||
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Over this holiday weekend, my drg stimulator experience hit a wall. 2 of my 3 leads stopped working. I have those 2 leads up to the max and I am not getting any tingling that I am supposed to feel. I will be calling the rep in the morning. I don’t know if my leads have migrated or what... any one have experience with this?
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"Thanks for this!" says: | RSD ME (01-19-2018) |
01-02-2018, 03:14 AM | #4 | |||
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"Thanks for this!" says: | RSD ME (01-19-2018) |
01-02-2018, 03:22 AM | #5 | |||
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"Thanks for this!" says: | RSD ME (01-19-2018) |
01-02-2018, 02:03 PM | #6 | |||
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Saw my PVP today. He thinks the incision is infected...or at least the skin around it definitely is. He's not sure if the rash on my legs is related or not, but he gave me antibiotics and a prescription strength hydrocortisone cream. He seemed most concerned with the red bumps on my back around the incision because those are bigger and "angrier looking" than the bumps and welts on my legs. Can't tell if any of it is helping yet but am glad I went. Haven't heard back from my pain Dr yet.
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"Thanks for this!" says: | RSD ME (01-19-2018) |
01-02-2018, 06:46 PM | #7 | ||
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"Thanks for this!" says: | RSD ME (01-19-2018) |
01-03-2018, 01:27 PM | #8 | |||
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I did have my implant at Rush. I am waiting to hear back from my rep too. I'm actually kind of surprised how little follow up I've had from everyone...but then again everything has been going really well for me so I guess it makes sense. I don't think I got a follow up call from my St. Judes rep after the permanent implant (I did get one from the Surgi Center)...I know I got a couple calls during the trial but not every day like she said it would be (but again...everything was going great so I guess it makes sense that I wouldn't be getting a ton of follow up).
The hydrocortisone doesn't seem to be helping much at all with the itching. I am at the point of almost scratching myself bloody...and you can imagine the RSD pain I am experiencing because of the itching...but if I don't scratch I am literally losing it. I finally managed to fall asleep last night and woke up less than an hour later scratching and the pain that resulted from that. I hope it's not a staph infection...that would really stink. They said everything looked good on the 22nd when I went in for my follow up...but all this redness and stuff started after that (after they took off the dressings and put new steri strips on). Hopefully I get an answer soon or the antibiotics that my PCP gave me take care of it. How are you doing? |
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"Thanks for this!" says: | RSD ME (01-19-2018) |
01-03-2018, 03:32 PM | #9 | ||
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I am itchy too - still have all my original dressings on so at least that prevents me from trying to scratch the wounds themselves. Two of my 3 leads were not giving any pain or sensation relief at their highest settings. I am going to Rush tomorrow (Thurs.) to meet with the St. Jude's rep to try to figure out what's going one. And now my remaining lead has completely shut down. So I am somewhat depressed. My equipment isn't working and consequently all of my pain has returned. I hurried to have the surgery before the end of the year b/c my out-of-pocket costs with insurance had been met. I am worried I will need to have this all re-done. I came down with a nasty cough after surgery and I am worried that my extreme coughing may have dislodged something. 2018 has to be better. |
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01-03-2018, 03:39 PM | #10 | ||
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I am worried about you with a possible infection. I really think some one who was involved in the procedure needs to respond to you. Keep pushing them. |
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