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    Losing Function

    I have posted here as someone who recovered enough to eventually participate in short triathlons. Now everything is turned upside down. I am having issues with pain I haven't had since immediately post injury. I am also losing function in both legs and my hands. I did have surgery (hysterectomy) last May and also had a bicycle wreck about a year ago. The weakness and pain are episodic. They relate to heat or vigourous exercising. In the heat I feel like ants are biting my arms and legs. If I do any type of exercise, I get extremely sick as if I have the flu with extreme pain. My neurologist attributes it to aging with a SCI. He says I will progressively worsen as I age. Is this the final word for me or does anyone have any advice?
    "What need have you to fear the monstrous crying of the wind?"

    Kitty

    #2
    I would not take that for an answer/final word. I would find a neurologist that is experienced with spinal cord injury and get to the bottom of this.

    Comment


      #3
      I agree that a second opinion is worth seeking out, but I also know that for a lot of us with SCI there is a point where the overuse of muscles we did have working for us post injury seem to weaken further and cause more pain. Speaking for myself, I am definitely dealing with aging with a SCI issues, and my pain levels have increased as my endurance has decreased. I hate to be the big negative here, but I do think there might be something to what your doctor said, unfortunately.

      Comment


        #4
        That is not my experience. I work primarily with SCI veterans who have been injured many years. While some find that strength naturally decreases with aging (esp. after age 60 or so), it is NOT normal to loose function where you had it before just due to aging. I would want to be sure you don't have another illness or disability, and I would also want to rule out a syrinx. Did you have an MRI? If not, ask for one, and if he refuses, I would recommend seeing a different neurologist.

        While aging with SCI often makes neuropathic pain worse (and you should consider treatment for this), so can a syrinx, so it should be investigated for the cause of this too.

        (KLD)
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

        Comment


          #5
          I agree with Eileen. I have lost a lot of function the last 8 years and I am post 38 years. I have unfortunatly lost nearly everything I gained the first years and soon I am back to the start.

          There was a tread about it not long ago.
          TH 12, 43 years post

          Comment


            #6
            KLD, I am surprised that you don't seem to find this among your patients. My psysiatrist told me that after decades of sitting in a sling back chair my posture had become "rounded" in my shoulders. He also did MRI's and discovered calcified tendonitis in my shoulders, which helped to explain my loss of range of motion. He also found that my cervical spine was no longer in the alignment that it once was, and was now impinging root nerves at c4,5,6. He called this a form of arthritis. I am not yet sixty, although not all that far from it. I went for all sorts of PT, literally for months, at Spaulding Rehab, and while I had a great therapist, at the end she was not able to demonstrate that the exercise, the deep stimulation, the massage, or anything else had actually improved the condition. Heaven knows it was not for lack of trying on either her part or mine. The conversation changed to new adaptive equipment, more complex arm splints, and eventual SP surgery to lessen the number of transfers I must make.

            Comment


              #7
              It makes me feel guilt when KLD writes like that. Like is is my own fault that I am loosing function and I did not take care of my body. I understand that ABs are thinking that way, but when the SCI nurse doesn't believe in aging, I feel bad. Like most people here on CC, I did not choose to stop walking even if I had been walking for more then 34 years with my SCI.
              TH 12, 43 years post

              Comment


                #8
                WFE, I sort of feel the same way. No one worked harder than I did to get back what I got, and to lose a great deal of it now is enormously painful. I know several other SCI friends who have been in chairs about as long as we have, and there isn't a one of them that hasn't commented on their pain levels going up and their functioning level getting worse. We have commented among ourselves that it seems to be more related to the years spent post injury than the actual biological age. Meaning someone 50 who is just injured is not going to have the same overuse, lousy posture, and so forth, but someone who is only 35 or so, but in a wheelchair for 20 years is likely to be starting to hit the wall when it comes to "aging in a wheelchair" issues. It doesn't seem likely to me that I know the only subset of the population where this is so obviously happening, and especially to people who went on to have full lives, jobs, and persued recreation. I am not talking about people who gave up and sat around all day doing nothing, who might now be feeling increased hypochondria. Quite the opposite. These were the folks who pushed (literally and figuratively) through their pain, who overcame whatever obstacles were thrown in their path. I don't know why KLD says she isn't seeing this either?

                Comment


                  #9
                  I don't know so many people here in Norway who are so many years post. All the complete quads I met in rehab the first time in 1970 are dead. Last one died a few years ago. Some of the paras are still alive. And the old complete paras I know are saying the same, more pain and fatique. The few incomplete has lost most of the function the got back both paras and quads. But I have never met an incomplete para as old as me but I have met paras who are 25 years post and still they have lost a function.

                  I did not start to loose before my last pregnancy, 11 years ago, and in the beginning I thought it was the pregnancy and the age, I was 42 when I got the last child, and the 45 kg I had gain under the pregnacy that was the reason. 45 kg is about 100 pounds I think. But I lost the extra weight again and I still had problems walking. Then I thought it was the pelvic because I had trouble with that in the two last prenancys. And I did the usual pt for that but it did not help. Then I had to wait two years to get an appoinment with a SCI specialist and he said the same as KLD. And they did exams for MS. ALS, Guillian Barrè and other nevrologic disorders. But they could not find anything wrong and since I am a low para and it nothing wrong with my arms, they did not understand anything.

                  They wanted me to do more pt but after a while I found out it was only making me worse. Last year I was in rehab for four week and I was working hard those week and the only thing who happened was that I lost the function of standing. But I knew that was an either or but I did not have so much left so I did not care too much to loose more. The only thing that still work ok is the bladder. Except for all my UTIs. 18 in 2007.

                  So I do not understand why the health personnel is still denying it and as long as they deny it, we do not get any help or hope to get better. And the last months I am starting to have really bad nevrolocic pain again and I have had my first appoinment in a privat pain clinic.

                  But I don't know if it is a difference between atraumatic SCI and traumatic SCI, but I don't think so.

                  And what can we do with the fatigue? Nobody seems to know.
                  TH 12, 43 years post

                  Comment


                    #10
                    And what can we do with the fatigue? Nobody seems to know.
                    I am an incomplete walking tetra 12 years post. Initially I had no function, except breathing on my own, but I am one of you all who have pushed myself to the limit to be as independent as possible. I can't complain, I walk perhaps like a penguin, but unassisted (except when I fall, LOL), although I also struggle with some weakness in upper extremities as well. So that is my brief background history.

                    Ever since shortly after my injury, fatigue has been my biggest complaint. I asked my physiatrist about it, I have asked Dr. Wise about it, the consensus seems to be that some fatigue is to be expected, but not to the degree that I have it. By afternoon, I was ready to crawl into a hole, in tears, I would be so tired (I had children at home at the time.) I have had the usual suspects ruled out, such as hypothyroidism, which I have, but is being now treated, evaluated for depression, etc. I can tell you my solution as of three years ago, and it is the best thing since sliced bread. It is a medication called provigil, generic name is modafinil. I don't know if they have it yet in Norway, it is relatively new here and extremely expensive. It is prescribed off-label for me, as well as being prescribed off-label for many MS patients for their fatigue. It is termed a stimulant by some, but it works more by preventing the tired feeling than masking it. I had used ritalin previously for about a year, when my insurance would not cover this drug, and I describe as the difference between staying up all night and then drinking a pot of coffee (ritalin) and never staying up all night in the first place. I am now working part-time. Without provigil, I could not work. Even with it, if I work 6 hours three days in a row, I have to spend a day in bed recovering. I don't know what is the source of the fatigue but at this point I don't care anymore. Well yeah I do, I'd really like to have it go away, but it doesn't look like that is going to happen. But at least now I can have some sort of functional life. God bless my last neurologist for offering it to me.

                    Comment


                      #11
                      Between always intensifying pain, popping shoulder blades, and lousy posture and balance, I become less and less able to do anything, seemingly from day to day. I can barely even type - even the slight arm movements required are agonizing (plus, I tip forwards and sideways with every movement, even strapped in.) It's a crappy existence. I hate sitting up, though laying down is just as uncomfortable. I've sought pain treatment for 26.5 years, and scoliosis treatment for a long time - no joy with either sarch.
                      Alan

                      Proofread carefully to see if you any words out.

                      Comment


                        #12
                        dunwawry, I talk with my pain doctor about that medicin. I have known her for 25 years and she knows me quite well, even if I haven't been to her for 18 years. It takes at least 8 month to get an appoinment with a nevorlogist and there is no nevrologist who knows about SCI except the one in the rehab hospital. Thank you
                        TH 12, 43 years post

                        Comment


                          #13
                          Alan, I have read about your pain all the time and I don't understand how you can make it. I did not start with neurological pain before 10 years post and it is coming and going in periods so I get time to recover between the battles.

                          Now I have had a good period for seven years, it has been a relief, but now it looks like I am starting again.

                          Well, it looks like it is time for the healt personal to understand that the old SCI patients are getting worse. But I think they are afraid to let the newbies know. Here they have accepted that post polio excist and they are starting to understand that the same is happening to the SCI patients. But that is only SCI spesialists. The rest of the health personal doesn't know. I have been kick out of the hospital because I argued with the doctor there since I said the loss I had was because of age.

                          But we are only 4500 SCI patients in all the country so I understand it is not the most interesting thing to study. My daughter is a nurse and she is living together with a doctor and I think the only thing they know about SCI is what I have told them. And they are not that interested. Just now my daughter is working in with patients with terminal prostate cancer and they are often getting tumors in the spine in the end so she knows maybe more than a year ago.
                          TH 12, 43 years post

                          Comment


                            #14
                            Originally posted by SCI-Nurse
                            That is not my experience. I work primarily with SCI veterans who have been injured many years. While some find that strength naturally decreases with aging (esp. after age 60 or so), it is NOT normal to loose function where you had it before just due to aging. I would want to be sure you don't have another illness or disability, and I would also want to rule out a syrinx. Did you have an MRI? If not, ask for one, and if he refuses, I would recommend seeing a different neurologist.

                            While aging with SCI often makes neuropathic pain worse (and you should consider treatment for this), so can a syrinx, so it should be investigated for the cause of this too.

                            (KLD)
                            This is very important. I completely agree with KLD. make sure you get an MRI and rule out anything more serious. I waited a long time attributing weakness and loss of function to bad eating habits, too much exercise, not enough exercise whatever I could attribute at the time. I was WRONG. It turned out to be a syrinx(a cyst growing in my spinal column). It's much better to be safer then sorry.
                            Rose
                            http://www.myspace.com/roseoremus
                            C6/C7 Complete, Asia A, since March 31, 2005.

                            Comment


                              #15
                              I agree it is important to rule out everything else when you start to loose function. But after we have done that it is only for us "oldies" to accept that things are getting worse by the time. It is difficult to accept but even more difficult when the doctors and the nurses don't believe us.

                              You are loosing everything you have been fighting for and that is a hard journey especially when you don't know anything about it. It is difficult the first time to get a SCI but it is more difficult the second time because you know it is nothing to do with it.
                              TH 12, 43 years post

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