Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 , Hi! I haven't yet been to the pain rehab clinic, but it was recommended to me by the doctors at Mayo. They are definitely encouraging it but they cautioned me not to expect miracles. Basically, they sold it to me saying that I'd never feel " normal " again but that the clinic might help me to figure out how to best deal with my body and pains, like if I only had 10 minutes of energy a day, how best to use that, etc. I know one of the clinic's other main goals is to drastically reduce the number of prescriptions people are on. I also know a bit about what the daily schedule is like if you'd like some information on that, but again, none of my " knowledge " is first-hand. Anyhow, I thought I'd let you know for what it's worth! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 Hi Sandi... Off topic here....just thinking of you and seeing all you do for us PSCer's (nov08), I've talk to you a few times on face book and see you here, sorry you having pain and my prayers to you....My itching came back and I'm having a new stint put in Monday...(the other was a temp) and Wells found me a Dr in San Diego......I also want to say to all on this board and the information you gives is priceless and somehow (as somebody said) it's a club we all don't want to belong to, but if we must I'm proud to be a (jr) member....As for the pain subject , how about acupuncture anyone tried it? My prayers to all in 2009 Don B San Clemente...today, literally itching for a cure! To: Sent: Friday, January 23, 2009 11:09:20 AMSubject: Re: Re:Pain Rehab Clinics ,Hi! I haven't yet been to the pain rehab clinic, but it was recommended to me by the doctors at Mayo. They are definitely encouraging it but they cautioned me not to expect miracles. Basically, they sold it to me saying that I'd never feel "normal" again but that the clinic might help me to figure out how to best deal with my body and pains, like if I only had 10 minutes of energy a day, how best to use that, etc. I know one of the clinic's other main goals is to drastically reduce the number of prescriptions people are on. I also know a bit about what the daily schedule is like if you'd like some information on that, but again, none of my "knowledge" is first-hand.Anyhow, I thought I'd let you know for what it's worth!Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 Hi Sandi... Off topic here....just thinking of you and seeing all you do for us PSCer's (nov08), I've talk to you a few times on face book and see you here, sorry you having pain and my prayers to you....My itching came back and I'm having a new stint put in Monday...(the other was a temp) and Wells found me a Dr in San Diego......I also want to say to all on this board and the information you gives is priceless and somehow (as somebody said) it's a club we all don't want to belong to, but if we must I'm proud to be a (jr) member....As for the pain subject , how about acupuncture anyone tried it? My prayers to all in 2009 Don B San Clemente...today, literally itching for a cure! To: Sent: Friday, January 23, 2009 11:09:20 AMSubject: Re: Re:Pain Rehab Clinics ,Hi! I haven't yet been to the pain rehab clinic, but it was recommended to me by the doctors at Mayo. They are definitely encouraging it but they cautioned me not to expect miracles. Basically, they sold it to me saying that I'd never feel "normal" again but that the clinic might help me to figure out how to best deal with my body and pains, like if I only had 10 minutes of energy a day, how best to use that, etc. I know one of the clinic's other main goals is to drastically reduce the number of prescriptions people are on. I also know a bit about what the daily schedule is like if you'd like some information on that, but again, none of my "knowledge" is first-hand.Anyhow, I thought I'd let you know for what it's worth!Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 Hi Sandi... Off topic here....just thinking of you and seeing all you do for us PSCer's (nov08), I've talk to you a few times on face book and see you here, sorry you having pain and my prayers to you....My itching came back and I'm having a new stint put in Monday...(the other was a temp) and Wells found me a Dr in San Diego......I also want to say to all on this board and the information you gives is priceless and somehow (as somebody said) it's a club we all don't want to belong to, but if we must I'm proud to be a (jr) member....As for the pain subject , how about acupuncture anyone tried it? My prayers to all in 2009 Don B San Clemente...today, literally itching for a cure! To: Sent: Friday, January 23, 2009 11:09:20 AMSubject: Re: Re:Pain Rehab Clinics ,Hi! I haven't yet been to the pain rehab clinic, but it was recommended to me by the doctors at Mayo. They are definitely encouraging it but they cautioned me not to expect miracles. Basically, they sold it to me saying that I'd never feel "normal" again but that the clinic might help me to figure out how to best deal with my body and pains, like if I only had 10 minutes of energy a day, how best to use that, etc. I know one of the clinic's other main goals is to drastically reduce the number of prescriptions people are on. I also know a bit about what the daily schedule is like if you'd like some information on that, but again, none of my "knowledge" is first-hand.Anyhow, I thought I'd let you know for what it's worth!Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 I go to a pain clinic for arthritis in my back from my colectomy surgery. But what kind of pain are people having from the psc?Sent from my iPhone , Hi! I haven't yet been to the pain rehab clinic, but it was recommended to me by the doctors at Mayo. They are definitely encouraging it but they cautioned me not to expect miracles. Basically, they sold it to me saying that I'd never feel "normal" again but that the clinic might help me to figure out how to best deal with my body and pains, like if I only had 10 minutes of energy a day, how best to use that, etc. I know one of the clinic's other main goals is to drastically reduce the number of prescriptions people are on. I also know a bit about what the daily schedule is like if you'd like some information on that, but again, none of my "knowledge" is first-hand. Anyhow, I thought I'd let you know for what it's worth! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 The most common pain from PSC is right upper quadrant pain. Could be from a lot of things like infection, inflammation, bile duct blockage, inflammation the diaphragm, inflammation of the gallbladder, etc. It's a real treat when it wakes me up 5 to 10 times a night!Glad to hear you haven't experienced it. , Hi! I haven't yet been to the pain rehab clinic, but it was recommended to me by the doctors at Mayo. They are definitely encouraging it but they cautioned me not to expect miracles. Basically, they sold it to me saying that I'd never feel "normal" again but that the clinic might help me to figure out how to best deal with my body and pains, like if I only had 10 minutes of energy a day, how best to use that, etc. I know one of the clinic's other main goals is to drastically reduce the number of prescriptions people are on. I also know a bit about what the daily schedule is like if you'd like some information on that, but again, none of my "knowledge" is first-hand. Anyhow, I thought I'd let you know for what it's worth! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Don, Hi! I'm sorry to hear your itching came back. I hope the new stent helped! Thank you so much for the sweet words! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Don, Hi! I'm sorry to hear your itching came back. I hope the new stent helped! Thank you so much for the sweet words! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Don, Hi! I'm sorry to hear your itching came back. I hope the new stent helped! Thank you so much for the sweet words! Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Hi! I can't speak for everyone, but for me, I have joint pains, upper right quadrant pain, severe body aches (like a really bad flu feeling) and horrid headaches. I also have abdominal pain but that may be from my other disease (gastroparesis) and not the PSC, I'm not sure on that one. Also, I'm not sure if it's due to the exhaustion or not or if it counts as a pain (in the literal sense) but my body also feels very heavy at times as if it's made of lead or wet sandbags or something and even getting the energy to walk can be exhausting on those days. I hope you're not suffering from any of that! Have a great day! Sandi in VA Quote Link to comment Share on other sites More sharing options...
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