Announcement

Collapse
No announcement yet.

Please describe your M.S. related fatigue

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #46
    like walking in a shallow end of a swimming pool carrying 2 bowling balls....all the time

    Comment


      #47
      My fatigue seems to be connected to the weather. Any sudden change from dry and hot to cold and wet or vice versa triggers a flare that lasts about 3 or 4 days. My eyes feel too heavy to keep open and muscles ache. When I do close my eyes I get a sensation my head is floating but my body is weak. It kinda comes in waves where I’ll feel I can be a little productive at work for a while then hits me hard to where I have to take a break. I take provigil daily and too much caffeine interacts with my medication. I’ve taken little walks to try to get my blood pumping but that is temporary and I end up going home from work. Is there anything that works for you to combat your fatigue? I’d like to hear it. Maybe take a second provigil?

      Comment


        #48
        Hi Crazyguy

        I deal mainly with motor fatigue (arms, legs, and core get tired and weak after activity).

        Frequent rest periods and cooling are the primary remedies that help temporarily.

        I've been retired on disability for several years now, so I don't have a job to contend with anymore.

        Good luck with finding some relief for your fatigue. I'm sure it's making your job a huge challenge.

        Take Care
        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #49
          Originally posted by Crazyguy View Post
          Is there anything that works for you to combat your fatigue? I’d like to hear it. Maybe take a second provigil?
          Hi Crazyguy.

          I would talk to your neuro about it. It is really important they are aware of the extent you experience fatigue. I am not sure what dosage you are on of Provigil. I think 400mg is the max recommended per day.

          I started out on 100 mg/day. I would take about 2 hours into my work day. When it wasn't cutting it anymore, I took my first dose when I got to work and a second 100mg about 4 hours after the first. Then 100 as first dose, 200 second dose, until finally 200 both doses. Provigil probably extended my career about 4-5 extra years working.

          There are other meds that some people respond better to - Nuvigil, Adderall are examples.

          There are studies that show exercise is actually really helpful in combatting MS fatigue. It is a catch-22 when working - how to find the energy to do both. But it does make a difference for me.

          I am also not sure what type of work you do or type of commute to see if any job accommodations may help. I worked in technology in an office and worked from home sometimes. I also was given permission to record meetings, with the understanding of all participants that strictly used to document minutes, next project steps, etc. Once that was done and distributed, I had to delete. Just a few examples of accomodations.

          You also want to eiminate any contributing non-MS factors. If on a computer, make sure you have anti-glare glasses. Make sure you are getting good sleep at night, eating foods that energize and don't sap energy, minimize distractions. If you take any Rx that cause fatigue, can you take at night rather than daytime or is there an alternative?

          It can be tough to know if fatigue is cognitive fatigue causing physical fatigue or vice versa. Mine didn't become clear until I stopped working - cognitive fatigue caused it for me.

          Hope you find relief.
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #50
            I was only taking 100 mg of provigil. Bumping it up to 200 did the trick. At least for now. I’m looking at retirement now. I think I might enjoy that a bit more than suffering through work. Since I have physical fatigue and cognitive fatigue.

            Comment


              #51
              Crazyguy, glad to hear increasing the provigil is helping with your fatigue! I feel like working from home has made my fatigue worse as I am not walking or moving around much at all, I am stuck at my desk for hours. I believe fully that exercise helps but my workload prevents me from exercising and after hearing from my neurologist that I am shortening my life by continuing to work, I am also looking at retiring soon and applying for SSDI. I hope all goes well on your retirement journey!

              Comment


                #52
                Well I’ve had ms for almost 20 yrs now i lost track I’m on my feet 8 hrs a day and some days i feel like simple things are so hard to do i just collapse making dinner is a effort even shower i skip it since there is no energy left. It defending is horrible so when that happens i just go to sleep nothing else works.

                Comment


                  #53
                  Originally posted by barb_jones View Post
                  i skip it since there is no energy left.
                  That is a situation many find ourselves in - a balancing act - determining what must get done, what would be nice to get done, and what can wait. I know I would be exhausted if on my feet almost 8 hours a day!
                  Kathy
                  DX 01/06, currently on Tysabri

                  Comment


                    #54
                    Originally posted by Crazyguy View Post
                    I was only taking 100 mg of provigil. Bumping it up to 200 did the trick. At least for now. I’m looking at retirement now. I think I might enjoy that a bit more than suffering through work. Since I have physical fatigue and cognitive fatigue.
                    Glad to hear that the fatigue is manageable now. As for retirement, only you know the right time. But I can tell you, as much as I hated to stop working, I have a much better quality of life and can manage fatigue so much better. Good luck to you.
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #55
                      Originally posted by MS TOO View Post
                      I believe fully that exercise helps but my workload prevents me from exercising and after hearing from my neurologist that I am shortening my life by continuing to work, I am also looking at retiring soon and applying for SSDI.
                      Glad to hear you have the support of your neuro whenever you are ready to file!
                      Kathy
                      DX 01/06, currently on Tysabri

                      Comment


                        #56
                        The chronic fatigue is the most singularly pernicious MS related symptom I experience. I have lost much in my life because of my inability to ‘keep-up’ any longer. This includes my higher education track (n thus my would-be degree) as well as my spouse, who only ever expressed resentment toward me for my disease and shortcomings. My job prospects are rubbish now despite my education. All of this might seem less insurmountable if i was alone, but i do have children that depend on me and I don’t know how to pull something from nothing in order to succeed again. Fatigue has driven a stake through me and on top of it all there is only loss where I would hope some understanding might be. I feel especially for those with chronic fatigue syndrome with no medically perceptible underlying cause. I see no reprieve as a result of my MS diagnosis because my worst symptoms are invisible and thus get no meaningful recognition. Thus, I imagine life is similarly difficult with CFS, which so often gets dismissed by medicine as well as society.

                        Sorry for the ramble, its been particularly rough lately. Best health wishes to you all.

                        Comment


                          #57
                          Originally posted by CVenatici View Post
                          The chronic fatigue is the most singularly pernicious MS related symptom I experience. I have lost much in my life because of my inability to ‘keep-up’ any longer.
                          ....
                          I see no reprieve as a result of my MS diagnosis because my worst symptoms are invisible and thus get no meaningful recognition. Thus, I imagine life is similarly difficult with CFS, which so often gets dismissed by medicine as well as society.

                          Sorry for the ramble, its been particularly rough lately. Best health wishes to you all.
                          Truly sorry that MS has impacted your life. What have you tried for your fatigue? Is your neuro responsive to it?

                          It's a catch-22, but what helped me the most is exercise. I am in a period where I am limited due to an Achilles injury and with out the exercise, the fatigue has crept back into life, along with the symptoms that worsen with the fatigue. In the beginning, exercise was tough - how do you do that when so fatigued? I thought my neuro was nuts when he showed me some studies related to MS fatigue and exercise. I gave it a shot, started at 5 minutes, then gradually built up to a routine. I can't wait until they let me do more again.

                          And definitely true on added sugar. That makes a huge difference too.
                          Kathy
                          DX 01/06, currently on Tysabri

                          Comment


                            #58
                            Thanks, for the suggestion. I’m familiar with such studies and do try to exercise as the research is encouraging for long-term prognosis of the disease. I can still manage up to 3-mile runs and would several times a week, but there is always a cost afterwards in the form of an exhaustion that can last days. I’ve been on meds including provigil, adderall, ritalin, n currently im on strattera which is less of a stimulant n more of an anti depressant if i recall correctly. So far nothing is very effective IF at all. I try to keep up with exercise as studies have shown it to have many other benefits for MSers. I still need naps throughout the day however and drag myself everywhere. I’m glad you have found fatigue improvements with exercise, it will undoubtedly have other benefits for you as well!

                            Comment


                              #59
                              Hi CVenatici and welcome to MSWorld

                              Originally posted by CVenatici View Post
                              T I can still manage up to 3-mile runs and would several times a week, but there is always a cost afterwards in the form of an exhaustion that can last days.
                              It's great you are able to run 3 miles. If you are "paying" for your 3 mile runs that is an indication you might be doing more than your MS will allow. Exercise is helpful for MS and some of the symptoms but overdoing it isn't helpful.


                              Were you doing 3 miles before your diagnosis? For some with MS there is a need to modify their exercise as to not overdo it. Sometimes we need to start out slow and build up, paying attention to how we feel afterwards. When I overdo do I tend to sleep quite a bit (1-2 days). When I don't overdo it I may need 30 minutes to an hour or two to recover. Another thing to try is taking a cool shower after exercising, this will bring down your core body temperature quicker.

                              Finding a balance between exercise and "life" can be a fine line, but is possible.

                              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


                                #60
                                SNOOPY I don’t do 3 miles anymore, i am just still ABLE to run it is all i meant, which I’m fortunate for. I don’t really run as much as I would like in fact because i can’t muster the energy. I have in the past been in the position where running is habituated into my schedule. If its 1 or 3 miles or even a long walk, it nevertheless eats away the reserves I would otherwise use for chores, children, etc. I can safely say that it doesn’t help my energy levels to exercise because i have tested it. That’s not to say it doesn’t make me feel good in other ways, but i have to tread lightly if i wish to get through the day. I’m glad to hear there are those with contrary experiences though. Maybe my wiring is off :-P

                                Comment

                                Working...
                                X