Guest guest Posted February 13, 2009 Report Share Posted February 13, 2009 Wow Dave! I am so sorry to hear about that but I have to admit that I do know the feeling. I could deal with the pain if they hadn't told me that it is possible for me to be pain free and I can have a normal life. Since they don't me that, I feel like there is hope and I don't want to let it go yet. When I went to see my surgeon this week, I thought for sure he would give me something for pain! I got nothing!! Just these patches that don't do crap for me and were a waste of $200 and scelaxin which we all know is a waste of money too! I even said, " can I have something for the pain? You gave me painkillers 6 months ago so why not now? " UGH! I am so frustrated and so tired that I have to sit here and cry and suffer and feel sorry for myself....... >Hi Dave! > My depression has gotten worse so I had to have those meds bumped > up to. I am only 31 and I want to have a normal life!! No one ever told me I would be pain free. In fact I was told at age 40 with 4 surgeries and as much trauma as my back has seen, this is as good as it gets. Just like the Jack Nicholson movie. My depression has gotten worse lately too. I isolate, I don't answer calls, the things I used to enjoy, I don't. I'm up all night and want to sleep all day. They just changed my anti-depressant from Cymbalta which I took for about 3 years to a new one called Pristiq. So far I'm going through withdrawal and anxiety from the change. My skin is crawling, I'm irritable, hot, and my sleep is worse than ever. Hopefully this will pass. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2009 Report Share Posted February 13, 2009 Hi It sounds like you need to see a Physiatrist- a doctor trained in pain management. A good group will have physicians trained in medical pain management as well as anesthetic - epidurals, nerve blocks, radiofrequency, etc..... surgeons wont keep following you after a certian amount of time, they want to turf you over to someone else. wendy Re: Pain Management Specialist Wow Dave! I am so sorry to hear about that but I have to admit that I do know the feeling. I could deal with the pain if they hadn't told me that it is possible for me to be pain free and I can have a normal life. Since they don't me that, I feel like there is hope and I don't want to let it go yet. When I went to see my surgeon this week, I thought for sure he would give me something for pain! I got nothing!! Just these patches that don't do crap for me and were a waste of $200 and scelaxin which we all know is a waste of money too! I even said, " can I have something for the pain? You gave me painkillers 6 months ago so why not now? " UGH! I am so frustrated and so tired that I have to sit here and cry and suffer and feel sorry for myself....... >Hi Dave! > My depression has gotten worse so I had to have those meds bumped > up to. I am only 31 and I want to have a normal life!! No one ever told me I would be pain free. In fact I was told at age 40 with 4 surgeries and as much trauma as my back has seen, this is as good as it gets. Just like the Jack Nicholson movie. My depression has gotten worse lately too. I isolate, I don't answer calls, the things I used to enjoy, I don't. I'm up all night and want to sleep all day. They just changed my anti-depressant from Cymbalta which I took for about 3 years to a new one called Pristiq. So far I'm going through withdrawal and anxiety from the change. My skin is crawling, I'm irritable, hot, and my sleep is worse than ever. Hopefully this will pass. Dave Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2009 Report Share Posted February 13, 2009 Hi , You got it right with the turfed over, thats what mine did, hell he at the last vist didn't even read my chart properly as he was going to put me on neurontin, shame he'd already done that Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2009 Report Share Posted February 13, 2009 Hi , You got it right with the turfed over, thats what mine did, hell he at the last vist didn't even read my chart properly as he was going to put me on neurontin, shame he'd already done that Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 I remember having to ask for pain medicine from my surgeon, his response was that he did not believe in that crap.. It made me fell like I was a druggie. Surgeons just do not get it.. I would try your primary care physician. Usually you need to have a relationship with the doctor who is medicating you because you need to have the element of trust.. I am sorry that your surgeon was not helpful but do not feel like it is you with the problem it is the surgeon.. asking someone to just grin and bare it is pretty cold.. Tom In a message dated 2/13/2009 4:22:02 P.M. Mountain Standard Time, carrie.heflin@... writes: Wow Dave! I am so sorry to hear about that but I have to admit that I do know the feeling. I could deal with the pain if they hadn't told me that it is possible for me to be pain free and I can have a normal life. Since they don't me that, I feel like there is hope and I don't want to let it go yet. When I went to see my surgeon this week, I thought for sure he would give me something for pain! I got nothing!! Just these patches that don't do crap for me and were a waste of $200 and scelaxin which we all know is a waste of money too! I even said, " can I have something for the pain? You gave me painkillers 6 months ago so why not now? " UGH! I am so frustrated and so tired that I have to sit here and cry and suffer and feel sorry for myself......W >Hi Dave! > My depression has gotten worse so I had to have those meds bumped > up to. I am only 31 and I want to have a normal life!! No one ever told me I would be pain free. In fact I was told at age 40 with 4 surgeries and as much trauma as my back has seen, this is as good as it gets. Just like the Jack Nicholson movie. My depression has gotten worse lately too. I isolate, I don't answer calls, the things I used to enjoy, I don't. I'm up all night and want to sleep all day. They just changed my anti-depressant from Cymbalta which I took for about 3 years to a new one called Pristiq. So far I'm going through withdrawal and anxiety from the change. My skin is crawling, I'm irritable, hot, and my sleep is worse than ever. Hopefully this will pass. Dave [Non-text portions of this message have been removed] **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100126575x1218822736x1201267884/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=fe bemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 I remember having to ask for pain medicine from my surgeon, his response was that he did not believe in that crap.. It made me fell like I was a druggie. Surgeons just do not get it.. I would try your primary care physician. Usually you need to have a relationship with the doctor who is medicating you because you need to have the element of trust.. I am sorry that your surgeon was not helpful but do not feel like it is you with the problem it is the surgeon.. asking someone to just grin and bare it is pretty cold.. Tom In a message dated 2/13/2009 4:22:02 P.M. Mountain Standard Time, carrie.heflin@... writes: Wow Dave! I am so sorry to hear about that but I have to admit that I do know the feeling. I could deal with the pain if they hadn't told me that it is possible for me to be pain free and I can have a normal life. Since they don't me that, I feel like there is hope and I don't want to let it go yet. When I went to see my surgeon this week, I thought for sure he would give me something for pain! I got nothing!! Just these patches that don't do crap for me and were a waste of $200 and scelaxin which we all know is a waste of money too! I even said, " can I have something for the pain? You gave me painkillers 6 months ago so why not now? " UGH! I am so frustrated and so tired that I have to sit here and cry and suffer and feel sorry for myself......W >Hi Dave! > My depression has gotten worse so I had to have those meds bumped > up to. I am only 31 and I want to have a normal life!! No one ever told me I would be pain free. In fact I was told at age 40 with 4 surgeries and as much trauma as my back has seen, this is as good as it gets. Just like the Jack Nicholson movie. My depression has gotten worse lately too. I isolate, I don't answer calls, the things I used to enjoy, I don't. I'm up all night and want to sleep all day. They just changed my anti-depressant from Cymbalta which I took for about 3 years to a new one called Pristiq. So far I'm going through withdrawal and anxiety from the change. My skin is crawling, I'm irritable, hot, and my sleep is worse than ever. Hopefully this will pass. Dave [Non-text portions of this message have been removed] **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100126575x1218822736x1201267884/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=fe bemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Hi , Welcome to the group! I'm 45 yrs with CMT 1A also. I suffer a great deal of pain too, but I'm fortunate to have found a wonderful pain management specialist who has helped me very much. I don't know what I'd do without him. One of the challenges my doctors and I have faced is trying to identify exactly what is causing the pain. Is it CMT ravaged nerves or some other problem that is secondary to the weakness the CMT has caused? What we've determined is that the burning/pins-needles/stinging/restless legs is caused by the CMT nerves, but the severe/intolerable nerve pain in my legs, the pain that puts me in bed, is actually coming from degeneration in my hips & back. It took a long time to figure that out, easy as it may seem, but proper diagnosis isn't always easy, especially with multiple conditions going on. Fortunately, my pain guy along with my ortho guy figured it out and injections into the sites of origin have finally gained me some relief. As for medications, I take several for pain. I take Neurontin for the CMT nerve pain, Voltaren for inflammation in the joints due to degeneration, and a small dose of Methadone for generalized pain relief & soreness. This regiment plus the site injections helps to keep the pain tolerable. I also take Vicodin for breakthrough pain. For me, the Vicodin isn't instead of these other medications, it's an occasional supplement to calm things back down when there's an escalation of pain and half a pill is all I need to take at one time. The Ibuprofen you take is an anti-inflammatory medication, like the Voltaren that I take. It's not very effective on nerve pain, at least not mine. It helps reduce inflammation, so it's effective for degenerative joint pain and sore muscles. Given your situation, I'm not sure what you could take to help your nerve pain, but I definitely think a pain management specialist is a good place to start! Quote Link to comment Share on other sites More sharing options...
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