Lonely and frustrating

I was diagnosed August 2008 with RRMS. Since that time I have had my ups and downs but always pushed through it. Always lived my life with 110% energy. Every day. In the beginning of June 2014 I was suddenly overcome with this very very terrible symptom of the disease called fatigue. Not knowing what was happening to me at the time I just kept pushing myself until I finally saw my neurologist and he gave how I was feeling a name. Fatigue.


Since the end of July 2014 I have tried 3 different CNS stimulants. Nothing so far even comes close to helping with my energy level. Especially when I “crash” physically on a daily basis. I’m only on my feet a few hours a day every day. This terrible symptom is VERY challenging physically. It gets very lonely and frustrating when I MUST lay perfectly still in a comfortable setting for hours at a time while my mind is usually still operating at 100%. The hardest thing so far is trying to convince everyone that I know how I feel every minute of every day. I get tired of hearing “but you look fine“. So much to say but not enough time to enter it all in using my thumb on my cell phone. So I just keep my chin up and keep fighting this every day. I have too.

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Comments

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  • myshelly
    3 years ago

    I understand. I was originally diagnosed with RRMS in 2009 after years of tests,2 back surgeries,1 cervical fusion, and carpal tunnel surgery in a 3 year period. I also turned down 5 other surgeries during that same 3 year period. All these surgeries were supposedly going to stop the pain.
    I feel trapped in a body that doesn’t work. The mind wants and is willing, my body feels broken.
    None of my friends and family seem to understand. Not a clue, unless they are in denial.
    The fatigue was making me depressed and I was in constant pain.I also had uncontrollable tremors and dizzy spells.
    I was helping my grandson with his 1st grade homework, and I drew blanks with 4+3, and 7+4 and I freaked out. I couldn’t remember. I have a degree in accounting and use math all the time.
    Then I started getting migraines, which I have never had.
    I know my body and I knew something was definitely wrong.
    I finally broke down at the Doctors office,crying my eyes out and told him I thought I was going crazy.There must be an underlying problem causing all these problems. I was 46 at the time. I felt I was to young to be having all these problems.
    My doctor sent me for a brain mri to look for issues that may be causing the migraines.He made an emergency appointment for me the same day.
    Approximately 8 pm that evening, my doctor called.
    He explained the lesions that were found and wanted me to return the following morning for blood work. He wanted to rule out a brain infection and Lyme disease.
    Once they were ruled out, I was sent to a Neurologist who specializes with MS.
    After about 6 months, she changed my diagnosis to Secondary Progressive.
    I have been on every MS medication on the market and none have helped.
    I walk with a cane. I have had complete strangers run up trying to catch me because they thought I was falling.I was on Ampyra, but I had seizures.
    I have both a walker and a scooter which I feel embarrassed to use. I don’t understand why she keeps prescribing RRMS meds for SPMS.There are no current meds for SPMS yet.I think her intentions are coming from a good place, but I feel worse.
    I wish she would try to help control the symptoms and forget the RRMS meds for now.I took myself off the meds without her knowing in September 2015.
    I haven’t had to deal with the side effects and that is fine with me.
    If I could get the fatigue,tremors and pain under control, I feel I could have a better quality of life.

  • Azjackie
    3 years ago

    Thank You all for sharing your stories of your battle with MS. We must fight this disease with all we have. When we run out of personal resources, we must slow down and develop a new plan of attack. Be it our physicians, family/friends/love support.
    What I have added to my arsenal is participating in a support group, additional symptom medication (Ampyra) and further communication with my family, friends, and boyfriend. I stressed I am the same person completing activities differently, asking to not be overly pitied or treated differently.
    I wish you success building your personal resources.

  • MarianneM
    3 years ago

    I understand only too well. I force myself to do things that I really don’t feel like doing because I’m tired. I have taken the mind set that if I don’t do it no one will. Everyday I make a point of doing at least one thing on my list. It may take all day to accomplish something but I do it all in steps. If I get tired I stop and go back to it later. It is tough that we have an illness that no one can see, like a broken leg, but it’s real and doable. When I was first diagnosed I couldn’t walk, couldn’t drive, had no memory, cognitive skills were gone and I could barely function. With time a lot has changed. My memory is better, I walk well. I drive, cognitive skill are still sometimes iffy but my life is good and I’m grateful that I’m a functioning RRMS person. You will get there, it just takes time. Time can heal. I am on no medication but I see my Chiropractor once a month and I swear that is what is keeping me on my feet and doing well. Keep you chin up you will make it.

  • Ken B author
    3 years ago

    Thank you. If only everyone would understand how devastating this affliction can be.

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