found out at 13 a had CMT but my dr's didn't no anything about it, instead of looking up on it dr's just put me on strong pain killers & have done since a was 13 now 34 am on 550mg morphine petadidine & fentanly but was never told me how my body would have changed so much throw addiction to meds. Made up my mind to ome off them as a really dnt think my pain could be any worse than it does atm. x
Hi - I don't have your problem, but many people here understand being in pain and pain meds no longer working. Maybe if you asked your question again and chose Support Groups like: Medical, Surgeries, Pain, Fentanyl, Morphine, Opiates, Withdrawal, Addiction (though I understand your are not addicted, but it's the same issue - getting off the meds) - see where I am going? To get you to where people see your question and can help you with withdrawal, and coping with pain. Hope this helps - EJ23
If I am understanding correctly and please hit the comment button to let me no if I am wrong..It sounds to me as to u have been on all these pain meds and have built a tolerance to were they r no longer helping the pain..Am I right so far? Also it sounds like u want to come off of them due to the fact they r not helping the pain anymore... first off let me tell u there r millions of people on here that will address your post..but repost and make it perfectly clear what u r asking help for..do u want to get off of the pain meds and need advice on how to do so, or r u asking for help on another med that might help the pain versus the meds u r on now..u have to repost to make yourself clear so your post can be answered accordingly... with that being said I am no expert, but if u r wanting to get off all of these meds, whatever u do, don't do it cold turkey..get the doctor's involved and have them lower each med very very slowly so u don't suffer severely..I am sure u no opiate withdrawal is no fun at all to say the least... please repost and don't do anything until u get some advice from our site... sorry u r feeling so badly wish I could take your pain away... also to join groups u go to where it says your profile..at the top of page it says Q and A..click on the drop down arrow and it will say join support groups type in the one's u r interested in whether it be depression, withdrawal, etc anything u type it in and submit that simple..good luck..
Hi, it is important to see a specialist, if all your doctor has done is pass out painkillers and not treated the condition. My uncle has CMT, so i understand about the disease and where it can lead. He is in quite a bad condition now, at the age of around 60. I'm not wishing to worry you, but i would urge you to ask your doctor about a referral to someone who specialises in CMT. I also have a friend who has this condition, and she had surgery which has helped a lot with her pain. It is important to have x-rays/scans to see how the condition is progressing.
Sorry to hear about your pain :(
Have CMT (and Neuropathy) as well so understand what you're going through. I'm 21 and my CMT is already pretty significant although I manage okay. The thing that helps me is wearing loose socks/shoes. It goes against what most specialist say, but for me wearing a tight shoe with a high arch isn't an option (feet go numb to to Neuropathy).
If you don't mind, may I ask what kind of pain you are experiencing and how long you were on the morphine. Have you tried Gralise (Gabapentin ER) before? Do you have Raynaud's as well?
- Morphine Information for Consumers
- Morphine Information for Healthcare Professionals (includes dosage details)
- Side Effects of Morphine (detailed)
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