My phantom sensatiions are acting up, just when I thought I hit ceiling lvl, dang nope another killer wave hits.Omg reading your thoughts and experiences . you get whats happening to me.I thought I was going crazy.I dont know why its getting worse..... or how? or even cause,. under went a series of tests all this week,shit part wont know results they say till August, hope we talk more./ ty for sharing.I am not alone

Yes, over time depending on your situation it can get worse, but that is just part of our new life as amputees. Don't let it get you down or you will really be in a fix. You can use different things to help with phantom pain, such as a topical pain cream with capsicum helps me and that says a lot. You just have to find the right one and you may find some relief. Remember that all the nerve endings are still there and that is why you have the "phantom" pain as they call it. Some don't think it's real and that it is all in our heads, but we who live with it know better. I can recommend a cream that works for me if you want, just let me know.

some thing to think about is as your stump shrinks your nerves pressures change?That mite be why desenitzing is so important.Just some thing to think about

HopAlong:
I'm also a hip disartic + a shoulder disartic and have found the same thing. After 5 years you'd thick it would ease up but no such luck. Weather change seems to bring it on for me.

Bill R

I am a new amputee, my doc gave me Lyrica for nerve pain and it has stopped my phantom pain completely

I was on pain meds, hydrocodone and lyrica for over a year. I found that the hydocodone helped me to be able to sleep at night without much pain, but the lyrica did nothing but make me very tired and unable to concentrate...

I have been going to a chiropractor for more than six months. He initially helped me a lot with some shoulder and neck pain that I was having...but lately, I'm wondering if my phantom sensations are not due to something that he is doing...

I get the really bad sharp-shooting-electrical- stabbing pain, when there is bad weather...It comes and goes in waves and except for occasionally swearing really loud, out loud like a crazy woman when it happens, I generally know it will go away...(So far my craziness has not taken place in the public...But I can see myself as being thought of as one of those crazy person's who screams swear words out loud for no reason in public...Oh well..if it weren't for crazy people the planet earth would be really boring!)

Lorri

RE: your last comment, Lorri - you are hilarious!!!! OMG! I can see it already - you cursing obscenely for no apparent reason to others, while shopping! lol But back to the discussion, my phantom pain has been gone for years....all I have is the sensations like my foot is asleep constantly. Once in a blue moon, I'll get the stabbing electric pain sear through the bottom of my phantom foot, but usually it lasts for only 15 seconds or so. Have you talked to your prosthetist to see if he/she had any suggestions or mention that this has come back again worse to your ortho surg or dr?

Kinzy,

I'm kinda thinking my chiropractor might be doing something lately that is causing the phantom pain to be more constant...I'm gonna have a good talk with him when I see him Monday...About a month ago I went off all my pain meds as well...Maybe my body misses them! I know my sleeping self misses them...I used to fall asleep and sleep soundly thru the night...not so anymore!

Lorri:
You may be right about the chiropractor causing some discomfort. After my amputation I was treated several times by a doctor who was into theraputic touch. At first I thopugh he was a real nut case! I'd shift my phantom leg or arm while he was treating me and everytime he was able to find the area of my phantom leg. Within a day after a treatment I suffered tremendous phantom pain for at least 24 hours. They actually tried the first treatment while I was in rehab hospital, and within the day they had to transfer me by ambulance back to the main hospital! The pain was so bad I was throwing up! I stopped the treatment and all was fine. When I get phantom pain now it comes on for 10 to 15 seconds and totally stops for approx. 60 seconds, then hits me again. This can last for 16 t0 24 hours! After a cycle of this I have to sleep for a couple of days as I'm totally wiped out. Fortunately this only happens every couple of months. I've been on Oxycontine twice a day with Amtriptalyne (spelling??) for 6 years now and am afraid to stop the drugs, as they appear to work.

Bill R.

Hopalong,

Have you thought that it is not your chiropractor or your body missing your pain med's, but the shear fact that you need them to control your pain. Sometimes it is necessary to use them, but if they are not used consistently then they will not be much good. You can call it phantom pain and that is what the medical community has chosen to call it so they do not have to deal with it in the way in which they should. Pain is pain and much of what is called phantom pain is simply caused by the nerve damage created by orthopedic surgeons who are not neurosurgeons and so they do not do an adequate job during their surgeries. It is not that they mean to mess up, but their expertise is the amputation of bone and not in dealing specifiably with moving or protecting the nerves ends during the operation. As much as I hate pain medications, I understand that they are needed and often required and a necessity. Hope it works out.

I also have those stabbing electrical shooting pains that feels like someone jabbed a dagger through my phantom hand and my stump twitches around like it has a mind of its own. Yes, and the cursing too. People look at me and think I'm a Tourettes Syndrom patient. Most of the time it feels like 15,000 ft. of ace bandage wrapped way too tight around the phantom forearm by some twisted nurse. I don't take any drugs for it because I am blessed with high tolerance for pain and just put up with it. However I have found that smoking some of "the herb" does make it tolerable and stops the random shooting pains. Hope this helps somebody.

i get the shooting pains aswell. But i was getting this b4 my amp. Its just above my stump and feels like a dagger in my bone. I take Amitriptyline, buts that was because i was getting pain all over when wearing my leg. I also smoke the herb aswell.

I have to laugh at calling 'it' the 'herb'....lol...Just thought you might be interested in a prescription drug made from concentrated 'herb' - the active components that help reduce muscle spasms and pain - it is called Sativex I believe. It is available in Canada and the UK but not the US b/c the US gov't don't like the 'herb'....The drug has been approved for use in MS patients...It's not cheap, though, and MSP doesn't pay for it...

Funny that several of you mentioned the "herb". I met a woman last week who's son was an amputee and his doctor told him that the weedy herb would help him with his phantom pain too...but of course being a doctor in the midwest, he couldn't prescribe it for his patient...You Californian's are a lucky bunch...Maybe all us pain ridden amputees should move there!!! I believe medicinal marijuana is legal in California...Too bad I wasn't an amputee when I was in my 20's...I could have told you wheteher maryjane worked for phantom pain or not!!! If my memory serves me...I don't ever remember feeling any pain after smoking some...HAHAHAHAHA (I miss the 70's!!!)

Lorri

Hi my phantom pain sensation has started right from the beginning after my aka in hospital and has not gotten any better. I have tried to deal with it in public in different ways but have always found myself trying to explain how much it really is hurting. As sometimes I do cry out unvoluntarily it is hard to imagine for people close that there is pain where there is no limb left. Although they say they do and try to rub the air in a fashion to get me to smile. I have nothing but praise for this site because there is nothing like the proof in the pudding to share your experiences and have your words echo my own. I am thankful for DS to provide me with some sanity and relief when I read on these pages symptoms that I am experiencing and having yours echo mine. My drugs do help take the "EDGE" off but still from nowhere the pain returns cramping of toes and pain in knees ect.. do we as amputees have this to endure for the rest of our lives looks like maybe some do and some dont. I am only 6 months into this and there has not been a day or a night when I am free of "phantom pain" guess I will go get some more phantom drugs now lol thanks joy