Why am I getting worse??

After a couple of weeks of my symptoms easing off , they’ve come back twice as bad! My legs were starting to feel a bit stronger, my arms weren’t as weak and I didn’t feel so tired. The past few days I am flat out. I can’t stand up or be active for more than half hour, I can’t stay awake, my arms and so heavy and burning and I have a constant headache and can’t remember anything, (I found my keys on the garage floor yesterday??) is this a relapse or just a normal part of living with the condition? I don’t want to ring my nurse as I don’t want her to think I’m a drama queen but I’m really struggling!

Your MS Nurse is there to provide advice and support. She has the knowledge and experience to ensure that you don’t have to struggle. If I were you I’d contact the nurse today and tell her how I felt. Regards, Anthony

Hello Char38. If any of your symptoms are worrying you, then I would call your MS nurse as soon as possible. I am sure that he/she will not think that you are worrying unnecesarily. Look after yourself. Moira

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Maybe its a relapse my relapses come on slowly over 2 weeks,then they peak at about 4 weeks and then start to slowly improve over the weeks and months.

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hi, it could be either…a relapse or progression.

or maybe an infection like a uti…they can be little devils and cause all kinds of things to go wrong…

either see GP or ring MS nurse, yeh?

Look after yourself.


Hi Char

Its the Alton Towers of diseases! Up down, round, up down again, never one day the same. Then you get up and its a bit better, then something else hurts, then you have a day when the sun shines then its back to flamin Alton Towers up down again! Random. I never have one day the same as the next. I have a range of pills, bandages, supports, food you name it for each day and whatever that brings.

Today for me is a good day so I am awake at 7.23 and I am going to do something today even if it is tidy the shed out ready for winter. Because I know that tomorrow will be a

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The roller coaster ride is the ride from hell. Never being able to plan is awful. I would have a quick chat with your nurse if I were you. I am yet undiagnosed await result ftom Lumbar Puncture. For seven years I have just soldieted on getting worse and worse. I wish I had somone I vould just call. Take advantage of all the help you can get. I hope you feel better soon

Hi Kim,

Seven years is a very long time to be in Limbo.

If you don’t have anyone to call, please remember that this forum is open to anybody looking for support, advice or just a chance to blow off steam.

I hope you get some answers soon.

Best wishes,


Thank you Anthony. Yes at first fibro, then positive Lyme Disease and still getting worse. Just to have some help is great. I hope I will soon be able to rest my mind. Thank you