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If I'm in remission, then why do I feel so terrible?

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    If I'm in remission, then why do I feel so terrible?

    I began having symptoms and had a positive lumbar puncture in May 2010. In November I was given a positive diagnosis after a brain MRI came back showing mulitple lesions.
    I immediately began treatment, including daily copaxone shots and monthly steriod infusions.
    My follow up MRI on February 3rd showed all lesions had healed. I am completely in remission.
    I have been very busy lately. I have taken a long car trip for the last 2 weekends in a row and done a great deal of walking.
    Today my legs are very weak, my feet are aching, and I feel like I haven't slept in a month.
    If I am in remission, then why do I feel so bad? I have no idea what normal is supposed to be any more and live in constant fear of a relapse. Is it normal to feel so weak when you're in remission?
    Jessi
    Diagnosed 11/16/2010

    #2
    I don't get the remission thing, either...!

    Originally posted by jcooper75 View Post
    I began having symptoms and had a positive lumbar puncture in May 2010. In November I was given a positive diagnosis after a brain MRI came back showing mulitple lesions.
    I immediately began treatment, including daily copaxone shots and monthly steriod infusions.
    My follow up MRI on February 3rd showed all lesions had healed. I am completely in remission.
    I have been very busy lately. I have taken a long car trip for the last 2 weekends in a row and done a great deal of walking.
    Today my legs are very weak, my feet are aching, and I feel like I haven't slept in a month.
    If I am in remission, then why do I feel so bad? I have no idea what normal is supposed to be any more and live in constant fear of a relapse. Is it normal to feel so weak when you're in remission?
    First of all, welcome to the club nobody wants to join. I don't think "remission" when it comes to multiple sclerosis is like the traditional cancer remissions we all know about. Cancer often comes with one, sometimes two, total remissions, but when it returns, it often returns with a vengence. However, those remissions appear to be total and sometimes the cancer never comes back.

    I have never understood M.S. remission because I pretty much feel like crap all the time. Despite my doctor labeling my Relapsing/Remitting, it seems like every day is the same. My doctor may have mislabled my type of M.S. or I just don't "get" what a remission is supposed to be.

    Thanks for your post as I, too, would like to hear more about this. For me, remissions feel like an Urban Legend!
    Tawanda
    ___________________________________________
    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

    Comment


      #3
      Hi and welcome to the forum jcooper75,

      To me it sounds like your experiencing an “pseudo-exacerbation”, and that is good news.
      Although pseudo-exacerbation feels just like a full exacerbation, they are not damaging and generally last only 24 hours or less once it trigger to gone. Web search “pseudo-exacerbation” and you will learn more then I could post about it.

      I do have some bad news, when it comes to MS there is no normal.
      What is fine to do on good days, may knock you for a loop on bad days and it sounds like that is what happened.

      It is unhealthy to live in fear, and does you no good.
      So just try to be more aware when your body is telling you to take it easy.

      So take your meds, get into and stay in a good state of mind, eat a healthy diet, exercise the best you can, and instead of being a victim, learn form your MS experience and grow spiritually.
      Give life meaning, live life by the 9 Noble Virtues.

      Comment


        #4
        Remission..

        Hey Jcooper,

        I really dont think that there is a such thing as remission with MS. It varies from day to day.. Always remember to rest your body.. perhaps you over did it with your weekend trips and lots of walking. MS.. its a sneaky little buzzard.. I understand when you say you dont know what normal is anymore.. TRUST ME.. But just try and get some rest and take your meds.. Hopefully your feeling will pass.. Its not easy for us MS'ers!
        Stay Strong

        Cookie

        Comment


          #5
          Wow, I just got exhausted reading what all you did! I remember being able to do things like that.

          I hope someone can give you some answers.......Hugs.
          MS, it's a brain thang!
          Proud to have served, U.S Army WAC

          Comment


            #6
            Remember that lesions do a lot of damage. Some of it obviously healed, but some might not have. You might just not have noticed it until now. I suspect you over did it and you're feeling the aftereffects.

            Comment


              #7
              Quite simply -- you over extended yourself physically and your MS is now complaining. This reaction is quite normal and many of us expect to "pay" for playing.

              It may take a day or 2 to get back to how you felt before your trip or it can take a week or two...depends on the individual person.

              Although the term Relapsing/Remitting is still used the fact is remission is not a correct term to use with this disease. It's not like cancer where remission means the disease is not active. MS is doing damage whether you feel fine or not.

              If we choose to use the term remission in MS it means your not doing as bad as when you had a relapse. In remission symptoms can come and go, you can have permanent symptoms and sometimes you are lucky enough to be symptom free.

              When living with MS life can and does change. You now need to find balance between having fun and not overdoing it. Some of us push our limits knowing we will pay for it and some can't or won't push limits.
              Diagnosed 1984
              “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

              Comment


                #8
                On my good days I feel like crap. I might have a few hours of feeling somewhat ok. Meaning no pain, semi-clear mind, no spasicity, but still weak. Then I get worse with slurred speech, can't think, can't get thoughts out, can't hardly walk, spastic penguin walk, falling asleep. Thats a typical good day.

                On a bad day the bad symptoms are never ending. Its gotten so I never really feel like doing anything because I never feel good. Yet I guess this is normal. I don't know what to expect.

                Comment


                  #9
                  pretty much has already been said. I always feel crappy, but some days are less crappy. I am used to the fatigue and I know some days I overdo it, but some days I just do not care how I feel, I just want to so something, but I usually pay for it later. yeoc says I have progressive cause I do not have relapses and remissions, that I would know if I was having a relapse, it would be really bad. Mine seems to be slowly progressing,butI know what you ean about normal. The screwy MS, plus being on SSDI, downsizing, and alll that has gone on in my life the last few years, has really taken a toll on mynormal. I try to find stuff to do that I enjoy, whether reading whebn my eyes are good, scrapbooking, or movie watching. I try to see my freinds and keep up on FB. AS far as doing stuff, I am still putting snowmen decorations away, but did get out ST Pattys stuff hesterday. I use winter dishes and decided to get regular ones out yesterday, and I cannot find them, so today that is y project. Do not want to eat off peper plates forever. Hang in there and listen to your body when it tells you to rest.

                  JuidySz

                  Comment


                    #10
                    Thanks to everyone for your imput. This has been quite the learning process for me! I guess I just need to accept that there are limits to what I can do now. It's hard for me because I've always been the type to go, go, go.
                    Jessi
                    Diagnosed 11/16/2010

                    Comment


                      #11
                      Originally posted by SNOOPY View Post
                      Although the term Relapsing/Remitting is still used the fact is remission is not a correct term to use with this disease. It's not like cancer where remission means the disease is not active. MS is doing damage whether you feel fine or not.
                      I think the term just gives us false hope, and that gets old quick.

                      The only sense I can make of the relapse/remit thing is if you look it it as a symptom by symptom thing...while one symptom has stopped irking me for awhile (remitting?), a different irritating symptom holds it's place in line (relapsing) until it decides to come back.

                      After being diagnosed with "RRMS" for the past 7 years, I really think the label is a confusing misnomer designed by doctors who are not living with the disease themselves, just trying to treat it.

                      I wish they would come up with another description or just drop the "labels" entirely! IMHO, their shelf-life is up.
                      Tawanda
                      ___________________________________________
                      Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                      Comment


                        #12
                        Originally posted by jcooper75 View Post
                        Thanks to everyone for your imput. This has been quite the learning process for me! I guess I just need to accept that there are limits to what I can do now. It's hard for me because I've always been the type to go, go, go.
                        It is good that you are learning, instead of going into denial.
                        There is a lot to learn, and the info to learn changes from time to time.
                        I was Dx in the fall of 2001 and I’m still learning.

                        Everybody has to slowdown at the age the MS normally hits, so even if we did not have MS we would have to slowdown.
                        What makes MS harder then aging slowing down is that your limits change daily.

                        So push your limits, just learn to tell when your about to hit each day’s limits.
                        Life is like a long car trip, every so often you need to pull off the road to gas up or use the rest stop.
                        Now you just have to check the oil and engine temp also.
                        Give life meaning, live life by the 9 Noble Virtues.

                        Comment


                          #13
                          I too am constantly learning and realizing when I have reached my limits. My PCP has put me out for a month due to the crippling MS fatigue. I too have one of those "go go go" personalities. I am realizing, is just not worth it. Learning to take care of me has indeed become an experience. I am still learning.

                          Comment


                            #14
                            Remission not clear cut

                            Thank you. I've always thought remission meant back more or less to normal, as it kind of was in the early years. Every day now is a new adventure with various numb bits, new limps, weird brain, exhaustion etc. I thought "that's it", game over. But it sounds as though it's not just one exacerbation after another, just the way it works. I wish someone had told me that 12 years ago.
                            Feel much less like despondent.
                            I do still feel bloody awful, but hey ho.

                            Comment


                              #15
                              Me 2

                              My MRI's have showed no new lesions for a couple of years now... and I don't feel any better at all. But since no new lesions they call it remission.

                              I guess I'm just thankfull that I'm not getting any worse, right now anyway!

                              Good Luck!
                              -Creede

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