Guest guest Posted October 12, 2004 Report Share Posted October 12, 2004 Hi Rob, No, I didn't have any problem getting pain meds from my doctor. In fact, it was HIS idea, not mine. I don't doubt that your doctor knows little or nothing about CMT.........even having " several patients with CMT " as he says. I feel sorry for his CMT patients. Fact is, most docs know little to nothing about CMT. The SSI doctor that interviewed me for the SS told me that pain was not related to CMT. I set him straight and wrote a letter to that effect to my SSI caseworker telling him that if I were denied benefits based on this self-important doctor's lack of knowledge, that I would require a new meeting with a QUALIFIED physician. Good luck! Bob in Indy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2004 Report Share Posted October 14, 2004 Hi Laurie, If your doc didn't tell you, abdominal cramping when you stop your pain meds is a classic symptom of " physical " addiction. I have a good doctor...........I was responding to an email from someone that doesn't have a qualified physician. Thanks for your input! Bob in Indy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2004 Report Share Posted October 14, 2004 Hi Bob, I know what you mean although my first neurologist thought I had CMT but he wouldn't give me anything for the pain. So I got a 2nd opinion and he agreed that I had it and wouldn't give me anything either. So I went to a 3rd doctor and he said " bahhh you don't have CMT " and gave me a bunch of pain relievers but nothing worked or he had the wrong combination. So I reached out and called MDA. They set me up with a doctor very familiar with the disease and twice a year I see her and go to the 2nd neurologist when I need him. Now I think I am on too many drugs because when I stop one for a few days for any reason, my body cries out in pain and cramps so bad that I scare my family. Good luck in finding a new doctor. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 Hi Gretchen, thanks for the response and information. I have taken Elavil before, it helps with the nerve pain in my arms and legs. However it doesn't do anything for my other pain (moderate pain in my arms and legs, severe pain in my feet and sometimes my arm). My nerve pain doesn't bother me as much as the aching/pressure/burning type pain in my feet. In 1997 I was diagnosed with depression and prescribed Paxil. Since then I have switched to Prozac and now Zoloft. Looking back, I now realize that because of numerous problems (including CMT-related issues) I was depressed. My doctor (who you have read my complaints about) told me the cause of my fatigue was depression and wants to up my dose of Zoloft when I complain about CMT-related pain. After learning about why CMT causes fatigue and having the chance to have adequate rest (since I am no longer working) I don't have the same feelings of depression anymore. The only time I seem to be depressed is when I have a particularly bad bout with pain, especially foot pain. When pain sets in, I don't want to just sit around waiting for it to go away. I want to at least enjoy some life activities and be able to do things like wash my dishes without being in pain. If I was able to control the pain, I don't think that depression would be an issue. So I am faced with trying to get pain relief, but instead I get a prescription for anti-depressants. Since anti-depressants don't help with pain and I now know that depression was not the cause of my fatigue, it seems ridiculous that my doctor says depression is the cause of my problems. This is why I am in search of a new physician who is " CMT-friendly " . Thanks, Rob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Dave, The dr. who told you " god is a merciful god. he would not allow a person a disease like cmt and allow it to cause pain " is obviously in dire need of therapy, a vacation and a new vocation. UNBELIEVABLE! Bob in Indy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Dave, that last sentence was disturbing for me. I don't know you but I don't want to lose you either. I am on Oxycontin and it relieves my pain quite well. After I got past the addictive quality of it, I was okay with taking it. The doc told me that the only time addiction is a problem is when you have to stop taking it, and that isn't going to happen as I will be on it forever more. Soooooooo........ Good luck! Life beats death any day. Bob in Indy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Rob, i too know the pain of which you write. and it is depressing. the only time it doesn't hurt is when i fall asleep. i am on vicodin. it doesn't seem to stop the pain, but taking enough with the proper alcohol amount - one doesn't care. The vicamins (as i call them) give my splitting head aches 50% of the time. the pharmacist said maybe i should try darvacet. thinking of taking enough vicamins to take a dirt nap. dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Laurie, What are you taking? at the MDA clinic in Columbus Ohio the doctor testing me - you know, the one with the needles and electricity said " god is a merciful god. he would not allow a person a disease like cmt and allow it to cause pain. " She didn't have cmt - so... - idiot. i know. dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Bob, Yes - your are right. at first I thought I was a rare case, but from the ongoing pain references in the group I see that pain is the norm. dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Bob, I borrowed a oxycontin once and it did nothing. just tired of not doing the things i once could. always been very active and only been down with the cmt thing for a couple years - just a real downer. dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2004 Report Share Posted November 4, 2004 Am I the only one taking methadone? I also take Klonipin, Neurontin and Ritalin to have A life. Oh almost forgot I also take Hydrocodone 10/325. Without the Ritalin I sleep 18-20 hours a day. GOOD LUCK: michael blanek Quote Link to comment Share on other sites More sharing options...
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