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    I can't take this anymore

    As much as I hate that my lower body is weak and my legs don't want to take me too far anymore, the fatigue is by far my worst symptom. I've been on Adderall the past three weeks, and it has perked me up a little (to the point where I can actually get through the day), but the last week has been horrible!

    No matter how much sleep I get at night, I've had the hardest time getting up every morning. I feel like a zombie all day long. The Adderall has done nothing for me the past week, and nothing will snap me out of it. Last weekend I went on a road trip and was unable to nap over the weekend like I normally do. I'm starting to think it was from the lack of catch up naps over the weekend that mad this last week so hard for me. Yesterday I slept half the day away and still went to bed before 10 last night.

    I'm hoping since I did sleep so much yesterday, I'll be on track to a better week this week, but this is ridiculous. I'm 29 years old and I feel like I'm 80! At this stage in my life, I don't feel like I can work full time anymore. The problem is, my boss (also my dad) will never accept that and he expects that, as long as he's there, I need to be there. If I'm not, then I have to hear about how lazy I am (I still do anyway because everyone seems to think I have it so easy). It's for this reason I've hidden it the best I can, but I just can't keep doing this. I've never felt so miserable in my life, but I don't know of anything I can do to make it better.

    I have told my neuro about this (actually, I told him I quit working because I can't handle it), and I swear, it goes in one ear and out the other. Even he basically told me at my last appt to quit making excuses and get out there and do something (in reference to me quitting my workouts when I started working). My family won't listen to me and even my neuro won't listen to me, so here I am, stuck fighting through what feels totally impossible every day. I honestly don't know how I keep making it through, I just do. I have run out of hope and I don't know what to do anymore.
    Diagnosed 1/4/13
    Avonex 1/25/13-11/14, Gilenya 1/22/15

    #2
    I'm here, feel the same

    I'm 69 and feel like 80! So you are not alone. I can imagine that at 20, it would be so frustrating. I have the same kind of fatigue. I have trouble falling asleep and then like you I can barely get up. My doc gave me Amitriptyline 10 mg. to take to get to sleep. He said I could take up to 30 mgs. and I often do. It still takes me a couple hours after I take it to fall asleep. I don't wake refreshed and I drag through the day. I do take Nuvigil as needed (also a low dose) and find it helps somewhat. I can't think of anything else that can make me feel more awake. I could go to a higher dose, which I might do on a once in a while basis. All and all it is just frustrating. I'm supposing diet and exercise as tolerated would not hurt, but it's as you said .........legs are week. Think of this though. If you don't keep trying to use your legs it won't get any better, but might get worse. I just do what I can. I walk where I'm comfortable, no crowds. Usually just around my house (inside). Unsteady ground like lawns or paths is going to trip you up.

    Anyway, even if you make yourself walk in circles, it's something. Neuro's by the way, are seemingly a bit distant, but if yours is not sympathetic and helpful, please get another. Mine is pretty good. I'd like more answers, but have decided there probably aren't any.

    Are you on a DMD? I'm on Copaxone. I don't think it works, but I take it and it's not as bad injecting 3X a wk.

    Could you work at home. Ever think of getting an Etsy shop? At least you'd have a distraction and might make some money.

    Best of luck, Diane
    You cannot dream yourself into a character; you must hammer and forge yourself one.

    Comment


      #3
      FATIGUE

      Fatigue is my worst symptom. If you neuro doesn't listen then I would try to find another. MS fatigue is the worse, nobody understands it unless they have it. No amount of sleep helps, it's brain fatigue, if I don't have my meds, I do nothing. Ask your doc if you can try Provigil. I started out on 200 mg once a day and now take it 3 X a day along with adderral. Actually, I retired from my job due to the fatigue and also I was unable to learn new duties or perform my job any longer.

      Comment


        #4
        I've tried Provigil. I took it for a couple weeks, but it only worked for a few days. It was really disappointing too because on the days it did work, I felt amazing! I tried Nuvigil before that and it made me feel really weird, and through all that, it didn't help the fatigue at all. I was basically told the Adderall is the last resort.

        I know that if I were to get back to working out, I could improve my leg weakness (I've done it before), but I'm always so tired that I never have the energy to do anything. I do get up and walk around throughout the day, but I really wish I could do more. I miss the dancing in my Zumba classes. I once went to a two hour Zumbathon and almost made it through the entire class! That's what I want to do again! Unfortunately though, working a full time job and having the endurance to make it through Zumba don't exactly go together for me.

        I think today was slightly better than all of last week, but it was still a struggle. I've applied for SSDI, but I'm convinced I'll never get my hearing date (been waiting for months). Since I'm so young, they wouldn't even consider approving me. What's sickening though is there are the people out there who are using depression as an excuse and getting approved, yet those of us who have a legitimate disease that makes our lives miserable don't stand a chance. And I'm definitely not talking about everyone, just the people who will do whatever they can to get out of working, even though they are totally capable. A customer came in Friday and said his grandson does this, and it's sickening. Meanwhile, I still struggle to get by day after day.
        Diagnosed 1/4/13
        Avonex 1/25/13-11/14, Gilenya 1/22/15

        Comment


          #5
          fatigue

          Don't beat yourself up. We all experience it. Maybe you don't think your neuro is listening.....or maybe he hears it all the time from all of us so there is no reaction.

          Comment


            #6
            Originally posted by txgirl57 View Post
            Fatigue is my worst symptom. If you neuro doesn't listen then I would try to find another. MS fatigue is the worse, nobody understands it unless they have it. No amount of sleep helps, it's brain fatigue, if I don't have my meds, I do nothing. Ask your doc if you can try Provigil. I started out on 200 mg once a day and now take it 3 X a day along with adderral. Actually, I retired from my job due to the fatigue and also I was unable to learn new duties or perform my job any longer.
            Please don't be offended. I was reading your post and pretty much was amazed you take such a large dose of Provigil. I take Nuvigil, which is just the newer version of Provigil. My dose is 100 mg. one time a day. It also comes in a 125 mg. dose, but my neuro says it would be better not to go to that. My fatigue is pretty constant. I didn't get from your post that the increased dose helped much with the exception of you getting through the day?

            Diane
            You cannot dream yourself into a character; you must hammer and forge yourself one.

            Comment


              #7
              What really sucks is that your neuro isn't listening to your voice. I had a neuro i went to for years...YEARS... one day I went to see her and she said something to me that just got me thinking...why are you my doc if youre not hearing my screams and cries.

              I'm not saying you should change your neuro, but something needs to change cause it sounds like you may fall into a depressive state if you don't change something about your status. It's been a while since you posted your initial thread, so maybe you're doing better now. I hope you are. Take care. Stay strong.

              Comment


                #8
                i think the best thing to do is to fill in anyone vital to your working and your daily living. at least you`ll have a valid excuse for "being lazy".. good luck.
                hunterd/HuntOP/Dave
                volunteer
                MS World
                hunterd@msworld.org
                PPMS DX 2001

                "ADAPT AND OVERCOME" - MY COUSIN

                Comment


                  #9
                  Fatigue can be related to sleep...

                  About 10 years ago, I had deep fatigue even though I had a good night's sleep... Or so I thought...

                  My Neuro, who is an MS Specialist, suspected I had sleep problem. Had me take a sleep study, which at the time I thought would not be worthwhile.

                  The Sleep Study showed I had Sleep Apnea. I've been on a CPAP machine ever since. This changed my life forever. Yes, I have some up and down fatigue, but generally much less fatigue. I also take Provigil, and it helps to reduce fatigue.

                  The above is my experience. As you know, everyone is different. You might want to ask your Neuro if he/she will refer you to a Sleep Specialist.

                  Hope this helps.

                  Time

                  Comment


                    #10
                    I feel you!

                    I am so sorry you are going through this awful fatigue. I am 28 and I have had MS since I was 17. It has not been since these last few years that I have had to deal with completely debilitating fatigue that we MSers know all too well. I am praying for you, and I am hear to tell you that you are not alone.
                    Be easy on yourself, and do not feel guilty for not being able to participate in things you were able to before. I am with you, and message me if you ever want to talk. All the very best.
                    ""Everything was beautiful and nothing hurt." -Kurt Vonnegut

                    Comment


                      #11
                      I feel you too!! I can't read all of this because it causes me to feel a tightness around my middle and then I just want to go to sleep!! I hate it all !! I take Nuvigil plus 2 caffeine at a time 2 xs a day.
                      .
                      Sissy

                      Comment


                        #12
                        Originally posted by lstrl View Post
                        ... I've been on Adderall the past three weeks, and it has perked me up a little (to the point where I can actually get through the day), but the last week has been horrible!

                        ...
                        If the last week was horrible, has it been worse than usual? Maybe you're in an MS flare.
                        ~ Faith
                        MSWorld Volunteer -- Moderator since JUN2012
                        (now a Mimibug)

                        Symptoms began in JAN02
                        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                        .

                        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                        Comment


                          #13
                          mamabug I think I've been in a flare since before Thanksgiving, but I'm between Neuro's. I think my family just says "here we go again" and goes about their routine. It's hard to get help from anyone but my poor 76yr old husband who can barely get around the house himself. His memory is getting bad and don't ask him to cook, ugg even the dogs can't eat it!! He can't drive because he can't see or hear!

                          I'm 66 and can't afford to buy groceries let alone getting to the store! Now my battery is dead in my truck and my family does nothing because I should not be diving anyway!!?? So how do get food and meds??
                          Sissy

                          Comment


                            #14
                            So sorry, Sissy, that your family is not helping.

                            Perhaps you need to look elsewhere for help. Is there a senior center near you, a NMSS Society (their OK City office is 405-488-1300; they also have a Tulsa office); a church you're involved in, or one that you'd be wiling to ask for help. These are just ideas of places to start. Perhaps you could sit down and write out some specific needs before making any phone calls, explain your needs to them, and ask if either they can help or if they are aware of any agencies who could.

                            I don't know if your Oklahoma Department of Human Services would be able to offer any assistance or refer you to an agency who would. (405) 521-3076

                            Oklahoma has a Senior Info-Line that links older Oklahomans to info and assistance at the local level. Maybe you could call them. Senior Info-line: 1-800-211-2116
                            ~ Faith
                            MSWorld Volunteer -- Moderator since JUN2012
                            (now a Mimibug)

                            Symptoms began in JAN02
                            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                            .

                            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                            Comment


                              #15
                              Does it matter that I'm in Texas and not Oklahoma?? I wish I was in OK and could claim my Cherokee Heritage !! ;-) That would be a dream come true!! I've been trying for ll types of things here. Not much luck. This PC is so messed up it takes forever to get anywhere.
                              Sissy

                              Comment

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