tag:blogger.com,1999:blog-21397483.post5278988784782755592..comments2023-12-29T15:48:55.596-05:00Comments on Samurai Knitter: The state of the state. Of me. Or something. Juliehttp://www.blogger.com/profile/11710658334966849773noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-21397483.post-37893226457276712152014-03-31T00:45:25.982-05:002014-03-31T00:45:25.982-05:00Long time, no talk!
I feel ya on proper pain con...Long time, no talk! <br /><br />I feel ya on proper pain control, especially for RSD/CRPS. I went on a rant on my blog back in... November? Maybe. Not sure. It was last year. Anyways, I was pissed enough to title the rant "A is for Ability, not Addiction". (An aunt actually called me an addict at a family function. I may have gone on off on her...) <br /><br />I have yet to find a doc who truly knows more about RSD/CRPS than I do. The drawback to constantly researching it in an effort to find proper treatments, I guess. Plus, the ones who have a somewhat decent knowledge base for CRPS type I (RSD) know very little about CRPS type II (Causalgia), which is what I have. Add in a severe case that adores spreading and rare complications (heart issues) and you get all sorts of fun. <br /><br />I will say that if they are willing to try new things with you, I adore my Cyborg parts (SCS). Wicked fun getting to tell people I need to go charge my battery. ;) Also, I'm currently on Butrans patches- as far as extended release opiates go, it's awesome stuff because you only need to change the patches once a week. It keeps the levels in your blood nice and even. <br /><br />Oh, and the supposed RSD specialist I saw while at Mayo? Decided since parts of my legs can sweat, I don't have the disease. Never mind that parts of my legs CAN'T sweat, parts can. So when I asked about those non-sweating spots, his answer? "It must be a drug side effect." I asked which one. "I don't know." /headdesk. Some docs really shouldn't be allowed to call themselves specialists at anything. <br /><br />I hope you guys find something that helps you! At this point, I've tried it all, so next on my list is either a wheelchair and assistance dog, or the Neridronate (if it's brought successfully to the US). Cassiehttps://www.blogger.com/profile/06143599941651150754noreply@blogger.comtag:blogger.com,1999:blog-21397483.post-44399007386025108322014-03-30T15:01:21.726-05:002014-03-30T15:01:21.726-05:00You have really struggled with this. Hope alterna...You have really struggled with this. Hope alternative approaches do the trick for you.<br /><br />And good luck to the Goober. Surely you already knew she would break half the teachers she goes up against and make allies of the strong ones.roxiehttps://www.blogger.com/profile/14916948065233137971noreply@blogger.comtag:blogger.com,1999:blog-21397483.post-11840878153735260752014-03-30T11:45:49.997-05:002014-03-30T11:45:49.997-05:00Hopefully this new doctor will make some headway. ...Hopefully this new doctor will make some headway. Our family is personally and professionally pretty savvy about pain management and all narcotics are not the same, particularly in how an individual reacts to them. It's unfortunate that when someone has unmanaged pain that they get labeled "drug seeking" for trying to find relief. Keeping fingers crossed that you get more answers and a good plan this time around.Galadhttps://www.blogger.com/profile/09246042661575565455noreply@blogger.comtag:blogger.com,1999:blog-21397483.post-74392627414770726722014-03-27T11:19:38.784-05:002014-03-27T11:19:38.784-05:00That was a PAIN doc? Are you sure she wasn't ...That was a PAIN doc? Are you sure she wasn't a pain in the arse in the wrong office building? I'm a big fan of the flounce, just not in my medical "professionals." I use the term loosely, just because one graduates with a medical degree one is not automatically a healer, someone has to be in the bottom third of the class. Good luck with the next contestant.<br /><br />Hug the Goob and "feh" on her teacher. I'm better your darling Goob is the mature one of the pair.Barbarahttps://www.blogger.com/profile/10674498749658797831noreply@blogger.comtag:blogger.com,1999:blog-21397483.post-46953977769454405452014-03-27T07:44:04.786-05:002014-03-27T07:44:04.786-05:00wow. just wow.
Oh and acupuncture may indeed hel...wow. just wow.<br /><br />Oh and acupuncture may indeed help. DH has a private practice and sees a fair amount of pain issues. He's been able to help nearly all of them, so there is a good possibility you can get some relief.<br /><br />Good Luck!!Bob & Phyllishttps://www.blogger.com/profile/17304464057986491568noreply@blogger.comtag:blogger.com,1999:blog-21397483.post-79388824595640905882014-03-26T21:48:50.229-05:002014-03-26T21:48:50.229-05:00sounds epic-ly craptastic - hope things improve so...sounds epic-ly craptastic - hope things improve soon.Catiehttps://www.blogger.com/profile/02422312014288178089noreply@blogger.comtag:blogger.com,1999:blog-21397483.post-76813542622934380832014-03-26T15:45:59.179-05:002014-03-26T15:45:59.179-05:00Oh, oh, string of bad words here. There is nothing...Oh, oh, string of bad words here. There is nothing like having something hard to treat. Most doctors hate that. The "blame the victim" reaction is the nastiest result. Good for you for persevering. <br /><br />My daughter is a narcotics addict. Very very different from people like you.<br /><br />I am just back from the hospital and had a roommate for a while who had swallowed something caustic when she was 20 and ruined her digestive system. She was dealing with chronic pain (plus a liquid diet for the rest of her life) and her complaints about pain management were very like yours. <br />Good luck with the appointment. I would think you'll need new things to deal with this as you go.<br />As far as I'm concerned, you have an amazingly sunny disposition, given your situation. Oh, jeepers; good luck with the Goob's teacher too. Ugh.Emilynoreply@blogger.comtag:blogger.com,1999:blog-21397483.post-9626224235445796732014-03-26T15:42:41.100-05:002014-03-26T15:42:41.100-05:00I have been following your blog and RSD, which I a...I have been following your blog and RSD, which I also have.(left wrist broken, right hand referential pain) I wish you could see my docs. All of them have listened, been supportive and have worked to make me comfortable. My favorite Doc just left and I thought it was to Pennsylvania, but I don't know where. If you find a Dr Lewis in your travels, latch on to her and don't let go. I understand the flares with stress. But I am very lucky and the minor drugs seem to work just fine. Neurontin 2x day, tramadol as needed about once every 2weeks, and topical when I remember. PT was really good once I got with some one who actually knew more about RSD than I do. Hand specialist PT was useless! They never listened to me about the pain, although professed to treat lots of RSD patients. I know every case is unique biut my good news is the more exercise the better I feel, so I am looking forward to some intense gardening this summer. Take care and I hope things start to get better real soon with a good treatment pla. Irenehttps://www.blogger.com/profile/12480168196174544125noreply@blogger.com