Forum

relapse blues

Hi there, my first relapse in 4 years started at the end of November. It is affecting my legs, extreme weakness and pain sometimes, with fatigue. I am on gabapentine (now 300mg 3 x a day) which is supposed to help with the pain. But the last week, this weekend especially was really really bad. they don’t feel too bad today but I am just getting so scared by the fact it isn’t going away. how long is it going to last?! I was supposed to be starting a phased return to work - did a few hours from home last week, and this week I was supposed to be going in for a few hours. But now I just don’t know if I should. I just want to be better! I can’t just be off work indefinitely - is that what everyone else does??

Sorry,this is turned into a bit of a rambling rant, but am finding it really hard to cope, the more it goes on.

Hi Anna

Sorry you’re feeling so down. I’m hoping that by bumping you back to Page 1 of the forum you will get some more replies from the friendly folks on here.

Luckily I haven’t had many relapses but the ones I have had have affected my mobility and they do tend to take many months before I notice a real improvement in my walking. I found it helped to write a note in my diary once a week so I could look back and see that I really had made an improvement (however small) as this was encouraging. Did you have steroids at the start of the relapse? I hate the side effects of them but they do kick start my recovery. It’s still a long hard slog from there though. I got fed up of waiting for physiotherapy with my last relapses (two within 3 months of each other) so I did some basic yoga stretches at home, gradually building up some stamina in my legs and easing the spasticity a little each day.

Sending you some gentle hugs and hoping you see some improvement soon. Regarding the return to work, perhaps you need to see your doctor or nurse and discuss how you are feeling with them? Maybe you do need a few more weeks until you try the phased return. Your health comes first. Only you really know how you would cope with returning to work. Good luck

Tracey x

Hi Anna

I get this too. Really painful. I was on Gabapentin 300mg 3 times a day but be honest it didn’t really touch the pain so I upped to 400mg morning and afternoon and 500mg at bed time and this has really helped.

I hope you get some relief soon.

Shazzie xx

Hi Anna

Sorry you are struggling with an horrible relapse. I am primary progressive so not sure what to say except use ms nurse and docs.

Do not go back to work until you feel ready…you will know yourself when that is. Hard for you to think straight now because you do not feel well. Pointless fighting it, just let this relapse play itself out…I know that is not easy

Take care xx

My relapses can and do last 3 to 4 months before i start to feel a bit stronger,really severe ones have lasted up to year.

you will know when you feel stronger and able to go to work,but dont push yourself,that wont help, make sure you get plenty of rest too.

I had to pack my job in when i was still in my early 30s, as i tried going back and within weeks i was very ill again.

Hope you feel better soon.

J x

Thanks for all your comments,they are really helpful. My meds are upped to 400mgX 3 a day and I have been into work twice this week - for shortened days. It was tiring, but it was so good to have some adult company and conversation. So, I am really hoping I have turned a corner.

Tracey - my nurse didn’t offer me steroids this time round. Can’t remember the reason she gave me. Also, I was wondering, how long do I keep taking the gabapentine for, assuming the symptoms do actually stop at some point?!

thanks for all your support

Anna

Hi Anna,

You poor love I feel your pain. As I am spms I don’t really get relapses now but remember how awful they were. I agree with what the others have said and send you (((((HUGS))))))

try not to push yourself to hard it does not pay, just go with how you feel. Good luck with going back to work.

best wishes

Janet

x