Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 I was unofficially told this back when they thought it was my lumbar area that was the problem and found nothing. I knew that there was more going on than what they were looking at and eventually it turned out my issue was in the thoracic area. Sent via BlackBerry by AT & T Central sensitization Hi Everyone... Has anyone been told that a part of their ongoing pain issue is Central sensitization?? Basically your brain sending pain signals? I am stuck in crazy limbo diagnosis- Central sensitization, fibro (due to multiple points and eye/noise pain) and myofascial pain syndrome. I do find the idea that our bodies are abnormally conditioned to " act " like they are in pain to be very interesting. Has anyone been told this, and being treated for this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 That's why those that have pain in areas that are not hurt (legs, buttocks, groin, feet, and even the back) have pain (me included). The brain/spinal cord sends pain signals even though there's nothing to cause pain in those areas - we haven't burned ourselves, we do not have leg injuries, etc. Kathy Central sensitization Hi Everyone... Has anyone been told that a part of their ongoing pain issue is Central sensitization?? Basically your brain sending pain signals? I am stuck in crazy limbo diagnosis- Central sensitization, fibro (due to multiple points and eye/noise pain) and myofascial pain syndrome. I do find the idea that our bodies are abnormally conditioned to " act " like they are in pain to be very interesting. Has anyone been told this, and being treated for this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 What would be the treatment for this?? Thats the question. Because when you spend all weekend on the couch and your biggest goal is washing your hair... there is a problem. Subject: Re: Central sensitization To: tetheredspinalcord Date: Monday, April 11, 2011, 7:10 AM  That's why those that have pain in areas that are not hurt (legs, buttocks, groin, feet, and even the back) have pain (me included). The brain/spinal cord sends pain signals even though there's nothing to cause pain in those areas - we haven't burned ourselves, we do not have leg injuries, etc. Kathy Central sensitization Hi Everyone... Has anyone been told that a part of their ongoing pain issue is Central sensitization?? Basically your brain sending pain signals? I am stuck in crazy limbo diagnosis- Central sensitization, fibro (due to multiple points and eye/noise pain) and myofascial pain syndrome. I do find the idea that our bodies are abnormally conditioned to " act " like they are in pain to be very interesting. Has anyone been told this, and being treated for this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 Yep, it is a problem. For me, the doctors call it neuropathic pain with two other terms that I can't recall but they involve the type of nerves involved in producing the pain signals. I've been told I have RSD and a host of other dx's, but it all comes down to nerves firing pain signals to areas that do not have injury. They over-fire and over-fire causing a vicious circle. It's what most of us deal with. There is a theory that the longer this goes untreated, the harder it becomes to treat so early intervention not only will help with the pain, but will help in the long run. I think patients become impatient though and don't give meds a good chance of working, sometimes patients are non-compliant with the dosing and others don't stick with the doctor long enough for him/her to try all tricks they have. It sometimes takes a while for a med to work and then there are times when you have to have a host of meds to get help. Stick with it, give things time to work, and remember, there is not a simple fix to this problem. There are many meds that help control this pain from narcotics to antidepressants to antiseizure meds along with meditation, biofeedback and certain exercises. I think because this type of pain is what we all deal with, it's sort of a " don't need a hundred names for it - just give me something to control it " . Kathy Central sensitization Hi Everyone... Has anyone been told that a part of their ongoing pain issue is Central sensitization?? Basically your brain sending pain signals? I am stuck in crazy limbo diagnosis- Central sensitization, fibro (due to multiple points and eye/noise pain) and myofascial pain syndrome. I do find the idea that our bodies are abnormally conditioned to " act " like they are in pain to be very interesting. Has anyone been told this, and being treated for this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 Interesting. I am on all except antidepressants. I have to say the narcotics are NOT doing their job, I think I made a HUGE mistake by going to this crazy massage that was basically trying to get knots out so harshly he probably caused more pain! I am starting a new PT program so hopefully it will help. Very annoyed. Subject: Re: Central sensitization To: tetheredspinalcord Date: Monday, April 11, 2011, 7:10 AM That's why those that have pain in areas that are not hurt (legs, buttocks, groin, feet, and even the back) have pain (me included). The brain/spinal cord sends pain signals even though there's nothing to cause pain in those areas - we haven't burned ourselves, we do not have leg injuries, etc. Kathy Central sensitization Hi Everyone... Has anyone been told that a part of their ongoing pain issue is Central sensitization?? Basically your brain sending pain signals? I am stuck in crazy limbo diagnosis- Central sensitization, fibro (due to multiple points and eye/noise pain) and myofascial pain syndrome. I do find the idea that our bodies are abnormally conditioned to " act " like they are in pain to be very interesting. Has anyone been told this, and being treated for this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 I'll be honest , treating the pain that comes from the tether is not easy and takes a ton of patience and most of the time, lots of time put in by you and your team/doctor. Frustration comes easily because basically your life is on hold why you/they find a treatment that works. However, I cannot emphasize enough that a good relationship with your doctor is going to be key along with compliance and willingness to try different meds. It's not up the doctor totally to make a good relationship - it takes two to tango sometimes. The better relationship you have with the prescribing doctor, the better life will be. If you find that can't get along with the doctor - dump him/her and find another. This does take tons of patience and staying with a doctor/team that is willing to help you. I've seen people jump from doctor to doctor because one didn't fix things during the first round or the person didn't like the dx - whatever - but the key is being open, using common sense, knowing when you have a doctor that is not going to work/will work, and sticking with a plan and affording yourself patience. It's a long road, but you'll get there - Kathy Central sensitization Hi Everyone... Has anyone been told that a part of their ongoing pain issue is Central sensitization?? Basically your brain sending pain signals? I am stuck in crazy limbo diagnosis- Central sensitization, fibro (due to multiple points and eye/noise pain) and myofascial pain syndrome. I do find the idea that our bodies are abnormally conditioned to " act " like they are in pain to be very interesting. Has anyone been told this, and being treated for this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 I see her tomorrow. I do think she is great, but she has seriously overlooked that this has been brewing for a long time. Although I don't blame her, I overlooked it too and spent thousands of $ going to massage therapists since last September. I hope this time her and I can sit down and make some changes. It is really impacting how my life is going, and I don't want to continue in this direction any longer. Getting up and going to bed in pain/unhappy/depressed is no way to live, especially when there are options available. Subject: Re: Central sensitization To: tetheredspinalcord Date: Monday, April 11, 2011, 7:10 AM That's why those that have pain in areas that are not hurt (legs, buttocks, groin, feet, and even the back) have pain (me included). The brain/spinal cord sends pain signals even though there's nothing to cause pain in those areas - we haven't burned ourselves, we do not have leg injuries, etc. Kathy Central sensitization Hi Everyone... Has anyone been told that a part of their ongoing pain issue is Central sensitization?? Basically your brain sending pain signals? I am stuck in crazy limbo diagnosis- Central sensitization, fibro (due to multiple points and eye/noise pain) and myofascial pain syndrome. I do find the idea that our bodies are abnormally conditioned to " act " like they are in pain to be very interesting. Has anyone been told this, and being treated for this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 I havent been told or treated for it but it makes sense to me. The body can only take so much. I know that I have a lot of pain in areas that there is absolutely nothing wrong with so ??? Obviously my brain or spinal cord just isnt processing things right. The other day (for a couple of days) there was this one pinpoint spot just inside my nose that was " buzzing " . I get those buzzes from the waist down a lot but never higher so who knows. My CNS is just screwed. I dont remember the article precisely but I read once that chronic pain actually alters the gray matter in the brain. Maybe that has something to do with it, or just spinal cord damage from being tethered so long. Seems like the Fibro, MPS and CS are all part of each other. ________________________________ To: Tetheredspinalcord <tetheredspinalcord > Sent: Sun, April 10, 2011 8:50:16 PM Subject: Central sensitization  Hi Everyone... Has anyone been told that a part of their ongoing pain issue is Central sensitization?? Basically your brain sending pain signals? I am stuck in crazy limbo diagnosis- Central sensitization, fibro (due to multiple points and eye/noise pain) and myofascial pain syndrome. I do find the idea that our bodies are abnormally conditioned to " act " like they are in pain to be very interesting. Has anyone been told this, and being treated for this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 EMG came out perfect. But I was told here, and by my NSG that it's not the most reliable test.I know my leg pain is very much electrical, and I have trouble walking on my right leg. Subject: Re: Central sensitization To: tetheredspinalcord Date: Monday, April 11, 2011, 11:11 AM  , Not sure if this would apply but, have you done an EMG? Curious what they would find if they did a nerve conductivity test. Sent via BlackBerry by AT & T Central sensitization  Hi Everyone... Has anyone been told that a part of their ongoing pain issue is Central sensitization?? Basically your brain sending pain signals? I am stuck in crazy limbo diagnosis- Central sensitization, fibro (due to multiple points and eye/noise pain) and myofascial pain syndrome. I do find the idea that our bodies are abnormally conditioned to " act " like they are in pain to be very interesting. Has anyone been told this, and being treated for this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 , Not sure if this would apply but, have you done an EMG? Curious what they would find if they did a nerve conductivity test. Sent via BlackBerry by AT & T Central sensitization  Hi Everyone... Has anyone been told that a part of their ongoing pain issue is Central sensitization?? Basically your brain sending pain signals? I am stuck in crazy limbo diagnosis- Central sensitization, fibro (due to multiple points and eye/noise pain) and myofascial pain syndrome. I do find the idea that our bodies are abnormally conditioned to " act " like they are in pain to be very interesting. Has anyone been told this, and being treated for this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 Too my knowledge there is no treatment for it. That is why chronic pain is debilitating. But you just have to learn to live with it, finding whatever helps to get as much " normalcy " as possible whether thats meds, meditation, whatever. This is why people take the antidepressant line of drugs to try to alter the chemistry in the body which sends these signals out. There is no way to " fix " it...although evidently some people are going to Germany and being put into Ketamine comas for a week to reset their CNS. This is something that some PN doctors recognize and that is why some of them keep their patients on an epidural pain pump for awhile after surgery to reset the CNS. I have also heard that they do this with amputations and it can help prevent phantom pain (although had never heard of ketamine being used until recently) ________________________________ To: tetheredspinalcord Sent: Mon, April 11, 2011 8:44:36 AM Subject: Re: Central sensitization  What would be the treatment for this?? Thats the question. Because when you spend all weekend on the couch and your biggest goal is washing your hair... there is a problem. Subject: Re: Central sensitization To: tetheredspinalcord Date: Monday, April 11, 2011, 7:10 AM  That's why those that have pain in areas that are not hurt (legs, buttocks, groin, feet, and even the back) have pain (me included). The brain/spinal cord sends pain signals even though there's nothing to cause pain in those areas - we haven't burned ourselves, we do not have leg injuries, etc. Kathy Central sensitization Hi Everyone... Has anyone been told that a part of their ongoing pain issue is Central sensitization?? Basically your brain sending pain signals? I am stuck in crazy limbo diagnosis- Central sensitization, fibro (due to multiple points and eye/noise pain) and myofascial pain syndrome. I do find the idea that our bodies are abnormally conditioned to " act " like they are in pain to be very interesting. Has anyone been told this, and being treated for this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 Oh wow! That is very interesting. Now I don't know if I told you this but Dr. Frim said no more epidurals for me. I have no space in my lower back, only mid. I wonder how this will work when I have a child! O.O I guess that would make total sense. Almost like in MS/cancer where they try to reset the cells/neurons... My major concern is having children in the next 2 years or so. Nevermind this wedding we are planning for. I really need to get some answers ASAP. I am just wondering how I bring all of this up to her and have this addressed. I am sad we let it get this far.  Have been spending a lot of time in pain and feeling sorry for myself. More than when I was DX with TC.I would like to not lose my job etc. and get working on trying to fix this. I am up for anything at this point. If the ketamine had a 50% chance of working I would take some vacation time LOL Subject: Re: Central sensitization To: tetheredspinalcord Date: Monday, April 11, 2011, 7:10 AM  That's why those that have pain in areas that are not hurt (legs, buttocks, groin, feet, and even the back) have pain (me included). The brain/spinal cord sends pain signals even though there's nothing to cause pain in those areas - we haven't burned ourselves, we do not have leg injuries, etc. Kathy Central sensitization Hi Everyone... Has anyone been told that a part of their ongoing pain issue is Central sensitization?? Basically your brain sending pain signals? I am stuck in crazy limbo diagnosis- Central sensitization, fibro (due to multiple points and eye/noise pain) and myofascial pain syndrome. I do find the idea that our bodies are abnormally conditioned to " act " like they are in pain to be very interesting. Has anyone been told this, and being treated for this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2011 Report Share Posted April 11, 2011 If I'm not mistaken, aren't EMGs notoriously inconsistent when diagnosing damaged muscles/nerves with TC. I know there have been a lot of people to pass through the list that had obvious functional deficits with a normal EMG. I've never had one, but have read a lot of people who have had them with obvious deficits and the results were normal. Jenn > > > , > > Not sure if this would apply but, have you done an EMG? Curious what they > would find if they did a nerve conductivity test. > > > Sent via BlackBerry by AT & T > > Quote Link to comment Share on other sites More sharing options...
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