I know this has been discussed a few times here but Id like to bring it up again. There is alot I dont understand about it and wanted your experiences.
I have "heard" that some peoples pain is still unbearable, even several years down the road after injury.
Then, I "hear" that their pain is less, years down the road after injury.
Then, I have been told that alot of the pain is "the healing process".
What has been your experiences with the pain after a traumatic injury? And what has your Drs. told you about it? Is the pain a good thing or not?? as far as healing.
Pain Level (again...)
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cbe411
- Posts: 1393
- Joined: Sun Jun 01, 2003 8:27 pm
- Injury Description, Date, extent, surgical intervention etc: MVA in 2001, nerve graph in 2002, Median Nerve Transfer in 2004 and an unsuccessful Gracillis Muscle Transfer in 2006. I am living life and loving it! Feel free to contact me :)
- Location: Grosse Pointe Woods, MI
- Contact:
Re: Pain Level (again...)
Hi Priscilla... I believe that I have experienced all of the above! This is something that is hard to pin point as evey case is different! I have been told from a few different doctors that pain does come with muscle regeneration and nerve reinervation. If James is having big pain issues, talk to the doctor that did his op! I am just back from my doc aobut pain going crazy and I might be in for some trouble! Get it checked out! Hope this helps!!
Court xx
Court xx
Re: Pain Level (again...)
Dr Teil once told me He didnt think they pain ever actually ever decreases he said we just learn how to live with it. That was hard for me to fathom 5 years ago but today i can identify with his statement. The pain can be bad at times but usaully when I'm stressed or depressed. When I stay busy at work i tend to forget about my bpi and the pain. It will step up and bite me every once in a while to let me know its still there but its not near as bad as when im trying to relax or am inactive. I guess staying busy is part of how i deal with it. But I do get depressed sometimes. That seems to be my biggest enemy.
John K
John K
Re: Pain Level (again...)
I'm one of those who believes the pain literally does decrease, and sometimes significantly. Since I didn't have the injury, I have to base this on my own observations as well as what John tells me. All five of his bpi nerves were avulsed in November 2002.
For the first few months after his injury, the pain levels were so severe they would take him to the floor - and I'd hear him yelling from it two floors away at the other end of the house. When his pain dr had him keep a pain diary, all the entries were 7-10 on a 10 pt scale. I asked him about the lower numbers, thinking they indicated less pain - and learned that he'd misunderstood the instructions & was actually using the lower numbers to indicate how long the pain lasted...but that the pain was always a "10". John's best relief was a daily dosage of 3600 Neurontin, 200 Topomax & 100 Amitriptyline - since he couldn't tolerate narcotics.
Now...basically two years after John's surgeries, with all muscles now "connected" and movement in his arm & hand, I never see or hear him in pain. He only takes 600 Neurontin, and that only as needed - on average around once a week (usually when he feels stressed about something).
I do agree that the other part of the process is to learn to stay distracted & "manage" it. The ability to do that comes over time.
I think that when the brain says "move" and the arm does indeed move (even though powered thru different channels), the brain does back off on the pain volume. As the old joke goes, "that's my story and I'm sticking to it"!
Hope this helps.
Ellen
For the first few months after his injury, the pain levels were so severe they would take him to the floor - and I'd hear him yelling from it two floors away at the other end of the house. When his pain dr had him keep a pain diary, all the entries were 7-10 on a 10 pt scale. I asked him about the lower numbers, thinking they indicated less pain - and learned that he'd misunderstood the instructions & was actually using the lower numbers to indicate how long the pain lasted...but that the pain was always a "10". John's best relief was a daily dosage of 3600 Neurontin, 200 Topomax & 100 Amitriptyline - since he couldn't tolerate narcotics.
Now...basically two years after John's surgeries, with all muscles now "connected" and movement in his arm & hand, I never see or hear him in pain. He only takes 600 Neurontin, and that only as needed - on average around once a week (usually when he feels stressed about something).
I do agree that the other part of the process is to learn to stay distracted & "manage" it. The ability to do that comes over time.
I think that when the brain says "move" and the arm does indeed move (even though powered thru different channels), the brain does back off on the pain volume. As the old joke goes, "that's my story and I'm sticking to it"!
Hope this helps.
Ellen
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punchy sue
- Posts: 127
- Joined: Fri Sep 26, 2003 8:31 pm
Re: Pain Level (again...)
Ellen
I appreciate your input, but as you said, you don't have the injury. There is no rhyme or reason to the pain we experience and that is so hard to deal with because it's confusing. In a case where there are true nerve avulsions, pain is not a sign of healing. It hurts like hell in your hand and forearm but that pain is being generated inside your spinal cord because there is no motor nerve connection. Since most of the nerves in your brachial plexus are dedicted to intricate hand movements, that is where you feel most of the pain -in your hand. Is this phantom pain? I don't know. I do know that the sensory nerve root ganglion is sometimes still intact even with nerve root avulsions. For ex. my EMG shows that the sensory nerve reflex of my BPI side are within a normal range, even if I can't feel my arm by touching it. Like i said, it makes no sense.
Now if you have had a nerve graft/tendon transfer, the pain can be a sign of new muscle/nerve growth with increased sensitivity. That can definately be good if you gain some muscle movement back. It could also be bad if you just increase in your sensitivity to pain but grow no new muscle tissue.
I have no idea whether over time pain decreases or you just get used to it. Maybe it's a little bit of both. I kind of think your body just finds a way to keep the pain from getting to a 10 on the pain scale. It does this by trial and error - if it makes you hurt don't do it. For ex. I used to really tense up against the pain which compounded the intensity. Now I try to keep eerything more relaxed and just let the pain happen and funny enough, it doesn't hurt as bad. I've just accepted that it's going to be there and i can't always be trying so hard to get away from it.
The best case senario is as in Ellen's son's case where he had total brachial plexus avulsions and both his nerve grafts and tendon transfer were successful so the muscles are actually reciving motor nerve signals and therefore the pain isn't coming from the spinal cord because his nerve pathway is now completed to his arm.
It is so confusing and so different in everyone's case. Therefore there is not an answer to what the pain is. The only thing that is universal is it hurts - that's why it's called pain.
LOVE SUSAN
I appreciate your input, but as you said, you don't have the injury. There is no rhyme or reason to the pain we experience and that is so hard to deal with because it's confusing. In a case where there are true nerve avulsions, pain is not a sign of healing. It hurts like hell in your hand and forearm but that pain is being generated inside your spinal cord because there is no motor nerve connection. Since most of the nerves in your brachial plexus are dedicted to intricate hand movements, that is where you feel most of the pain -in your hand. Is this phantom pain? I don't know. I do know that the sensory nerve root ganglion is sometimes still intact even with nerve root avulsions. For ex. my EMG shows that the sensory nerve reflex of my BPI side are within a normal range, even if I can't feel my arm by touching it. Like i said, it makes no sense.
Now if you have had a nerve graft/tendon transfer, the pain can be a sign of new muscle/nerve growth with increased sensitivity. That can definately be good if you gain some muscle movement back. It could also be bad if you just increase in your sensitivity to pain but grow no new muscle tissue.
I have no idea whether over time pain decreases or you just get used to it. Maybe it's a little bit of both. I kind of think your body just finds a way to keep the pain from getting to a 10 on the pain scale. It does this by trial and error - if it makes you hurt don't do it. For ex. I used to really tense up against the pain which compounded the intensity. Now I try to keep eerything more relaxed and just let the pain happen and funny enough, it doesn't hurt as bad. I've just accepted that it's going to be there and i can't always be trying so hard to get away from it.
The best case senario is as in Ellen's son's case where he had total brachial plexus avulsions and both his nerve grafts and tendon transfer were successful so the muscles are actually reciving motor nerve signals and therefore the pain isn't coming from the spinal cord because his nerve pathway is now completed to his arm.
It is so confusing and so different in everyone's case. Therefore there is not an answer to what the pain is. The only thing that is universal is it hurts - that's why it's called pain.
LOVE SUSAN
Re: Pain Level (again...)
Sue,
Thanks for your post - it helps explain a lot more. I had no idea why so much pain was in the hand & now I understand.
I wanted to add a ps to my earlier post to agree that this thing is all over the map & not particularly consistent. There are a few people who (even with surgery) don't get appreciable reduction in pain. And all my perspective is based on John, who had surgery.
For those who haven't have surgery, how is your pain over time? With or without avulsions?
Thanks,
Ellen
Thanks for your post - it helps explain a lot more. I had no idea why so much pain was in the hand & now I understand.
I wanted to add a ps to my earlier post to agree that this thing is all over the map & not particularly consistent. There are a few people who (even with surgery) don't get appreciable reduction in pain. And all my perspective is based on John, who had surgery.
For those who haven't have surgery, how is your pain over time? With or without avulsions?
Thanks,
Ellen
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jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Pain Level (again...)
I had no surgery, I have multiple avulsions. The pain was as bad as you describe for quite a while (it was 25 yrs ago so the memories-thankfully-fade) but when I returned to work full time it became much more bearable. I guess it was distraction-because at night it would get bad again. I did get spontaneous recovery of my biceps and the pain was much better after that. But it can still suddenly floor me, it happened 2 nights ago! It really scares my children when it happens, I just drop to the floor white in the face.
I am talking about the burning, crushing pain in the hand/fingers. I find that unbearable, to say the least. I have other kinds, pain where the breaks in my arm were (it was broken in 6 places) pain in my neck, back and scapula, pain in my good shoulder and elbow. These pains are pretty bad but not even on the same planet as the bpi pain in the hand. I'm kind of used to those and consider them irritating, having said that they too can stop me functioning. I think pain meds may help me with those but am resisting getting any, I want to try and manage. Worryingly, the good arm is now showing real signs of wear and tear, even typing this has made my good shoulder hurt quite a lot and the crunching of the joints is audible. Ulp. Hopefully those of you with some use of the bpi arm will avoid the worst of this.
I do think there is pain from regenerating nerves but in my case it was like severe pins and needles, uncomfortable but not bad enough to take my breath away.
Everyone is different, one woman posted here who had multiple avulsions, a totally flail arm and no pain at all. She was an exception, I have read that avulsion pain is the worst and as Susan says, it's always felt in the hand and fingers. I believe it is a kind of Phantom Limb pain.
In my several years of supporting people, it is apparent that those who stop all pain meds and those who are occupied mentally and physically definitely cope better. I probably would have ignored that in the early days when I stuffed handfuls of meds down my neck, and even found it an annoying thing to contemplate, when I was on pain meds there is NO WAY I felt I could have coped without them, but I have come to believe it is a vital step in recovery.
Any long termers out there expreiencing the good arm getting worse? People like me with no use of the bpi arm? Am I to expect a situation where I have no arms at all??? I'm actually getting a bit concerned....as is my husband who doesn't want to brush my teeth-and worse!
Ellen, do the Mayo have any long term studies on this???
Jen NZ
I am talking about the burning, crushing pain in the hand/fingers. I find that unbearable, to say the least. I have other kinds, pain where the breaks in my arm were (it was broken in 6 places) pain in my neck, back and scapula, pain in my good shoulder and elbow. These pains are pretty bad but not even on the same planet as the bpi pain in the hand. I'm kind of used to those and consider them irritating, having said that they too can stop me functioning. I think pain meds may help me with those but am resisting getting any, I want to try and manage. Worryingly, the good arm is now showing real signs of wear and tear, even typing this has made my good shoulder hurt quite a lot and the crunching of the joints is audible. Ulp. Hopefully those of you with some use of the bpi arm will avoid the worst of this.
I do think there is pain from regenerating nerves but in my case it was like severe pins and needles, uncomfortable but not bad enough to take my breath away.
Everyone is different, one woman posted here who had multiple avulsions, a totally flail arm and no pain at all. She was an exception, I have read that avulsion pain is the worst and as Susan says, it's always felt in the hand and fingers. I believe it is a kind of Phantom Limb pain.
In my several years of supporting people, it is apparent that those who stop all pain meds and those who are occupied mentally and physically definitely cope better. I probably would have ignored that in the early days when I stuffed handfuls of meds down my neck, and even found it an annoying thing to contemplate, when I was on pain meds there is NO WAY I felt I could have coped without them, but I have come to believe it is a vital step in recovery.
Any long termers out there expreiencing the good arm getting worse? People like me with no use of the bpi arm? Am I to expect a situation where I have no arms at all??? I'm actually getting a bit concerned....as is my husband who doesn't want to brush my teeth-and worse!
Ellen, do the Mayo have any long term studies on this???
Jen NZ
Re: Pain Level (again...)
Hmmm... good questions. Altho our Mayo bpi doctors are sympathetic about the pain, it's not really their focus which is instead repair to the injury itself. But - I have to think that the concentration of patients unique to these bpi clinics (all over) make them the perfect place to start re any long term tracking. i.e. I don't think pain doctors or clinics see enough bpi patients to provide useful data.
Anyone out there interested in asking their own clinic about long term tracking? And if so, does it include questions about pain levels? It would also be helpful to track related issues (back pain, overuse of good arm). But again, I think the focus of bpi clinics tends to be the injury/treatment itself. We use a pain specialist & John periodically sees a chiropractor to (hopefully) reduce the likelihood of problems later on.
I do remember Mayo saying that it's hard to get really accurate statistics re success of surgery because once the operation is over, literally everything is in the hands of the patient - i.e. daily therapy for months or years, etc. Obviously there will be less return for those who stop the ongoing therapy.
Anyone out there interested in asking their own clinic about long term tracking? And if so, does it include questions about pain levels? It would also be helpful to track related issues (back pain, overuse of good arm). But again, I think the focus of bpi clinics tends to be the injury/treatment itself. We use a pain specialist & John periodically sees a chiropractor to (hopefully) reduce the likelihood of problems later on.
I do remember Mayo saying that it's hard to get really accurate statistics re success of surgery because once the operation is over, literally everything is in the hands of the patient - i.e. daily therapy for months or years, etc. Obviously there will be less return for those who stop the ongoing therapy.
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Pain Level (again...)
Hi,
My dad's case is that at times the pain is bearable and maybe non existent but at times like tonight... the pain is unbearable. It is like what you guys / gals describe... extreme pain for the few seconds to one minute. The pain runs from the fingers to the arm and something like get to the heart. We tried to stop the pain by pressing on the arm but the pain just keeps on trying to get thru till it is too unbearable that my dad asked us to let go and let the pain get thru.
As for phantom limb, I believe my dad is experiencing that too coz he mentioned to me that he can see the invisible hand moving and at times he try to push it back into his hand the invisible hand just refused to move. Now, after a year or so the invisible hand finally willing to go into his hand which I think it is the reason the pain is getting lesser at times.
My only concern now is that the pain relieve that he took will coz problem for his kidney coz we find that his legs is a little swollen. He is trying to cut down on his pain relieve but it has to be a slow process coz base on what JennyB said many months ago, we cannot simply stop taking the pain relieve all in one shot coz it will cause more pain hence we are trying to cut it down slowly.
Does anyone here who is taking pain relieve for many years and has no other complication? Also, has anyone here try to consult a Chinese Physician for BPI?
Need advises from everyone here.
Thanks in advance.
Regards,
Hwee Yong
My dad's case is that at times the pain is bearable and maybe non existent but at times like tonight... the pain is unbearable. It is like what you guys / gals describe... extreme pain for the few seconds to one minute. The pain runs from the fingers to the arm and something like get to the heart. We tried to stop the pain by pressing on the arm but the pain just keeps on trying to get thru till it is too unbearable that my dad asked us to let go and let the pain get thru.
As for phantom limb, I believe my dad is experiencing that too coz he mentioned to me that he can see the invisible hand moving and at times he try to push it back into his hand the invisible hand just refused to move. Now, after a year or so the invisible hand finally willing to go into his hand which I think it is the reason the pain is getting lesser at times.
My only concern now is that the pain relieve that he took will coz problem for his kidney coz we find that his legs is a little swollen. He is trying to cut down on his pain relieve but it has to be a slow process coz base on what JennyB said many months ago, we cannot simply stop taking the pain relieve all in one shot coz it will cause more pain hence we are trying to cut it down slowly.
Does anyone here who is taking pain relieve for many years and has no other complication? Also, has anyone here try to consult a Chinese Physician for BPI?
Need advises from everyone here.
Thanks in advance.
Regards,
Hwee Yong
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: Pain Level (again...)
Hi,
My dad's case is that at times the pain is bearable and maybe non existent but at times like tonight... the pain is unbearable. It is like what you guys / gals describe... extreme pain for the few seconds to one minute. The pain runs from the fingers to the arm and something like get to the heart. We tried to stop the pain by pressing on the arm but the pain just keeps on trying to get thru till it is too unbearable that my dad asked us to let go and let the pain get thru.
As for phantom limb, I believe my dad is experiencing that too coz he mentioned to me that he can see the invisible hand moving and at times he try to push it back into his hand the invisible hand just refused to move. Now, after a year or so the invisible hand finally willing to go into his hand which I think it is the reason the pain is getting lesser at times.
My only concern now is that the pain relieve that he took will coz problem for his kidney coz we find that his legs is a little swollen. He is trying to cut down on his pain relieve but it has to be a slow process coz base on what JennyB said many months ago, we cannot simply stop taking the pain relieve all in one shot coz it will cause more pain hence we are trying to cut it down slowly.
Does anyone here who is taking pain relieve for many years and has no other complication? Also, has anyone here try to consult a Chinese Physician for BPI?
Need advises from everyone here.
Thanks in advance.
Regards,
Hwee Yong
My dad's case is that at times the pain is bearable and maybe non existent but at times like tonight... the pain is unbearable. It is like what you guys / gals describe... extreme pain for the few seconds to one minute. The pain runs from the fingers to the arm and something like get to the heart. We tried to stop the pain by pressing on the arm but the pain just keeps on trying to get thru till it is too unbearable that my dad asked us to let go and let the pain get thru.
As for phantom limb, I believe my dad is experiencing that too coz he mentioned to me that he can see the invisible hand moving and at times he try to push it back into his hand the invisible hand just refused to move. Now, after a year or so the invisible hand finally willing to go into his hand which I think it is the reason the pain is getting lesser at times.
My only concern now is that the pain relieve that he took will coz problem for his kidney coz we find that his legs is a little swollen. He is trying to cut down on his pain relieve but it has to be a slow process coz base on what JennyB said many months ago, we cannot simply stop taking the pain relieve all in one shot coz it will cause more pain hence we are trying to cut it down slowly.
Does anyone here who is taking pain relieve for many years and has no other complication? Also, has anyone here try to consult a Chinese Physician for BPI?
Need advises from everyone here.
Thanks in advance.
Regards,
Hwee Yong