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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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08-10-2015, 02:35 PM | #11 | ||
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We talked about nerve block if needed so we will see what his thoughts are today. I want ask about ketamine too there is hospital in Scottsdale that does them. Does insurance usually cover katamine?
How are your treatments going? |
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"Thanks for this!" says: | RSD ME (08-11-2015) |
08-10-2015, 07:28 PM | #12 | ||
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Saw Dr this afternoon. So far he isn't concerned. Might have been bandage too tight and nerves reacting to changes of positions. I remember my first surgeon telling me the nerves are waking up. So far no nerve block recommendations. He told me let him know if it gets worse. He also gave me high dose anti-inflammatory for 6 days to start taking tomorrow.
Fingers crossed I am turning the corner. He will still keep an eye out for rsd. No swelling present so far too. |
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"Thanks for this!" says: | Leggiesmcb (09-05-2015), RSD ME (08-11-2015) |
08-11-2015, 05:37 AM | #13 | ||
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hope you're feeling better today goblue. the first four days of surgery for me are usually the roughest ones. if you're in alot of pain even with perc and neurontin you may want to tell your dr and see if he can increase either of the two. maybe you're not getting a high enough dosage. i was also given prednisone early on which calmed the swelling and pain but once i was off of it the pain came back. the swelling was still there too but not as much as before the prednisone until now (five years later) the swelling is starting to get worse again in my original rsd site. maybe it will help you though. i know ice is no good for rsd. it can cause pins and needle like pain and further damage to the nerves. at least for me it did even with a bandage over under it so you may want to ask your dr if you should discontinue that and maybe the anti-inflammatory will help more. soft hugs and healing thoughts are coming your way my friend.
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"Thanks for this!" says: | Leggiesmcb (09-05-2015) |
08-11-2015, 08:16 AM | #14 | ||
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Mornings and late evening are the worst for me with the burning shocking pains. I am wondering if that is the case because that is right before I take gabepentin. Dr wants me to start weaning. This is all do difficult because they still don't think I have rsd but I can't convince myself. Only symptoms I have are the burning pain and shocks morning and early evening a few during day but evening 7-9 is by far worst. Last night was better than Sunday night though. I am now going to be non weight bearing 3 weeks he had chip away bone to get screw out.
I am doing vitamin c, b complex, nac and alpha lipioc acid all to help nerves heal too. My mind seems to be my worst enemy can't to get rsd out of my head so every twing I question. |
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"Thanks for this!" says: | RSD ME (08-11-2015) |
08-11-2015, 11:23 PM | #15 | ||
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the meds your dr is prescribing can help numb the burning pain, stabbing electrical pain that rsd causes. if i were you i would try to find a good pm dr who knows how to diagnose and treat rsd and have him treat you with the proper meds. if you do have rsd then the meds you're on now would help if you're dr okays it because rsd pain is constant. but check with a pm dr and neurologist for a second and third opinion. soft hugs.
p.s. a good gp who knows how to treat rsd is helpful too.
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RSD ME . Last edited by RSD ME; 08-12-2015 at 09:39 AM. Reason: added a p.s. |
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08-12-2015, 03:32 AM | #16 | ||
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Thanks for advice. Prior to surgery I saw 3 pm none if which said I have rsd which is why I went ahead with surgery. I have an app next wed with one to talk about post surgery pains burning and zingers that so far surgeon isn't concerred about. Of course I am. I will talk to him about gabebentin and staying on vs. Weaning. I am thinking it is what causes me most relief right now.
Wish this wasn't so difficult. |
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"Thanks for this!" says: | RSD ME (08-12-2015) |
08-12-2015, 05:12 AM | #17 | ||
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i'm not a dr but i would try to find one that knows how to treat rsd. they can keep you on the meds you need on a continuous basis until you start to feel better and/or if remission happens. the sooner rsd is treated the better chance of remission. try to hold on to hope that you will find the right dr. and maybe try to find a neurologist too to find out if they can tell if you have rsd. i hope you don't but if you do there are treatments to help manage the pain. hope you feel better soon. hugs to you.
p.s. i am also sending healing thoughts your way too. take care.
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RSD ME . Last edited by RSD ME; 08-12-2015 at 09:41 AM. Reason: added a p.s. |
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08-12-2015, 10:31 AM | #18 | ||
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Thanks for advice. My one worry with seeing new docs is that they might say it is too soon after surgery to know. I think I will give it another day and call surgeon and also pm to get further advice. I didn't sleep well at all last night even after taking sleeping pill more from anxiety than pain but some of the Burning pain.
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08-13-2015, 01:30 PM | #19 | ||
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Still not doing well unfortunately. I go back to surgeon this afternoon to talk next steps which I thinking will be mere block. Saw primary care this morning for the anxiety she prescribed a med so hopefully will take the edge off so I can stop worrying so much.
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08-13-2015, 03:08 PM | #20 | |||
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Hi GoBlue,
Sorry to read that you aren't feeling any better. It is only 6 days post op though so try not to be too worried yet. I would expect it to hurt! How is color? How is swelling and temp? These are good indicators for how much inflammation and neuroinflammation you have. If it is high your doc might consider a short burst of steroids. For acute CRPS the recommendation is 10 mg 3x daily for at least ten days sometimes longer. Steroids at that dose have minimal side effects and generally don't require taper. It is one of the frontline treatments recommended by Dr. Stanton Hicks of Cleveland Clinic. On ketamine, the more I read about it the more I find in anesthesiology articles about its use to prevent or reverse wind-up phenomena. If they think you are headed down that road God forbid see if your PM does low dose infusions. If not there may be someone in town who does. When I found my PM who does them it was no big deal getting started. I saw him and was scheduled for K pretty quickly after. My cost is $300 per 1.5 hour infusion and it is making a big difference. I have an easy schedule every two weeks instead of a ten 4 hour treatment days in two weeks routine. Sending hugs and healing love,
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