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Chronic pain is all I know now

I am almost two years into my diagnosis and I cannot believe what has happened and how our lives have changed…

I suffer much pain and other losses from the disease. I am thankful though that I can still see and still walk, I know those days are coming I just hope not for a long time. I suffer terrible headaches, numb/tingling hands, painful feet, calves and back, loss of bladder control completely, terrible fatigue, emotional rollercoaster ride 24/7 and I take many pills, injection and have had numerous tests done.

I am soon to go for my Urodynamics test and I am not looking forward to that. My treatment is not working and my pills don’t help much either.

I was tested positive for the JCVirus so my neuro is hesitant on starting me on Tysabri. I currently am on Rebif, but with all my aches and pains and bladder loss, its clear it does not work. I’m scared…

I also had Optic Neuritis but it did go away on its own, not to have returned thank GOD. I just feel almost all the feelings of an MS Patient and it really hurts…

I keep the faith, pray my children never fall ill and after the dark hours pass, I pick myself back up and start again.

Thank you for letting me share…

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Comments

  • Ann
    6 years ago

    I have been on Avonex for over12 yrs, it has kept me stable. I have Bladder issues too. I had the Urodydamics test twice. Please don’t fret it’s not as bad as I expected. The Dr. put the Interstem device in…it has worked wonders…I have total control now. It’s something to consider. I was very hesitant but am so glad I had it done. It is fairly new. You should ask your Dr.about it.
    I had Optic Neuritis in my left eye, it was so scary…but my vision came back about 6 months later. I was so relieved.
    There are so many things that happen to us that we just don’t understand, it is so very scary! I’ve had MS since 1981….I am doing fine. The most important thing you can do for yourself is to have a” positive attitude” I know it’s sometimes very hard, but it has helped me all these years. I hope you have a strong support system…My family has been there for me. My Husband and kids are always there for me. There are times when I feel
    afraid….I think it’s just normal. Please stay strong and know you are not alone, there are a lot of us out there. Keep picking yourself up!!!

  • Jen
    6 years ago

    I have many of these same issues with my MS. I was put on Gilenya two years ago, and I am doing much better. I do take cymbalta for nerve pain that I have in my arms and legs, and it does help a lot. I have tried Avonex, Copaxone, and Rebif. Avonex and Rebif both caused BAD body aches. Which went away after I stopped taking them. Copaxone wasn’t slowing the disease down for me, and the shot sites were always awful for me. Gilenya is a pill I take it once a day. I am so thankful that my MS doctor put me on it. I wonder, do you see a MS Neurologist?
    Keep fighting the fight! There are so many new drug treatments on the horizon.
    Oh btw, diagnosed 10 years ago, still walking and doing pretty well. I also fight fatigue, and they do have meds that will help you fight that. I am lucky enough that I work part time, and I can catch a quick nap. Wish you the best!

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