Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 LaDonna, Everyone is different in their perception of pain and also how much they have. I was diagnosed with CMT when I was 10. I had more pain in my teens. I am 52 now, and no pain, except for the occassional foot burning which I have had off and on since I was 7. There are many ways to manage pain. But no one can tell you " what to expect " in pain for the future. No one knows your body. Only you do. What I have discovered is that regular exercise has helped me in so many ways. And I didn't " get into " this regular exercise idea really until I was 35 or so; before then, I just swam or biked or hiked whenever I felt like it, but without a schedule, or a specific program of activity. Now, with a program I follow (yes, requires discipline) I feel so much better, have strengthened my body physically, emotionally and mentally. At one point, maybe 5 or 6 years ago I had some " electric sparks " type pain - intermittment. Of course, after surgery there was pain, but that too subsided, obviously. I also no longer worry about the future. I live each day at a time, with gratitude and a plan of action. When I am not being a group Moderator, or not doing CMT research, I completely forget I have CMT. ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 Wow.. that makes me feel better. What type exercises do you do? I just realized a few months ago that it was okay for me to exercise. I was always told that exercising was bad for me and that it would make me lose my muscles that I have left. I started doing sit ups and light weight lifting (nothing strenuous) a few months ago. I do 30 sit ups every night and about 15 weight lifts of 40 pounds. Do you suggest I do something else? I tried walking around the school parking lot, but it wears me out after one loop. Thanks for the info. LaDonna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2007 Report Share Posted March 15, 2007 To anyone who lives with this awful disease and knows how to live with the pain better than I do please respond asap!!!! Any info would be helpfull! Roxanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 Roxanne, I hope your doctor is aware of your pain level and can help control it with medications, heat/cold packs, perhaps supplements, massage, even physical therapy or exercise to the extent you are able. Meanwhile, there are 4 or 5 articles on Pain in our Files section for your use. To get to the Files, sign into with your ID and password, then go to the left menu Files. Scan down to Pain (alphabetical order) and click once or twice to open the Folder on Pain. Then click to open the article you want to read/and or print off. Also check the many past posts on this subject in our Archived messages. In addition, you may find the articles at this link from the former CMT International helpful. http://www.lindacrabtree.com/cmtnews/pain/Painsubtitles.htm ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2007 Report Share Posted March 28, 2007 Roxanne, I know how you feel. I have been there, and I now have the right combination of drugs to help the pain. I worked with a pain doctor for a few months to find out what helped me. You will have to work with someone also to find what works for you. Morphine and Fentanyl did not work for me. Methadone works but my head isn't clear when I'm on it, so I take Suboxone, Neurontin, Doxepin and Paxil. I also take Prevacid, but for my stomach. The Suboxone does make me sleepy and my doctor gave me samples of Provigil (for sleep apnea) and it worked great, but my insurance doesn't think I need it, and without insurance it is expensive. My doctor will give me more samples when I ask for them, but I only do that when I can't take a nap. I hope what I have said can give you any encouragement. I know that chronic pain is debilitating. I felt isolated, and that no one cared (Drs). My family did not understand. I heard, " Advil works great for me. Try soaking them in water. Have you tried acupuncture. " They were well meaning, but it made me feel even more alienated. I wondered why can't that stuff work for me? And try explaining how the air from the fan hurts your hands. How you feel better in the morning, but so much worse in the evening. To me it even sounds crazy. But, I want you to know that it doesn't sound crazy to us. We can relate, we have empathy, and mostly we have hope. Hang in there, and when you feel lonely, read the emails and we will always be with you. Quote Link to comment Share on other sites More sharing options...
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