Forum

Latest relapse

.New to all of this first time of posting on here. I was diagnosed last March with RRMS I’m currently having my 6th relapse and it is for the second time affecting my feet and legs which feel numb, very heavy and parts of my legs and feet feel like they are strapped up in a tight bandage and my feet also feel like blocks of ice even though they aren’t cold. Although the ms makes me tired generally during this relapse it has really knocked me for six. I’m still waiting for my first appointment to discuss drug therapy. Has anyone out there had similar symptoms to these and any tips or ideas in coping with the fatigue all help and suggestions would be greatly appreciated

Hi Julie. Yep, it’s all very familiar to me too. 6 relapses in that time sounds horrendous though. I was told relapse is brain time!.

I was diagnosed in May but I was offered DMDs straight away, for which I’m very greatful. Why are you still waitng for therapy? Did you not meet a Neuro when diagnosed?! Maybe time to put a bit of pressure on.

No tips for the fatigue. I think part of me is still in denial and keep on going even when I know I should stop. Then I am a weary tearful mess. :-/

Hi,

So sorry to hear of your diagnosis and the problems you have had.

I had five relapses in 2015 so understand the problems you are going through.

My pain and numbness in my limbs is eased a little by doing hot and cold. Put a heat pad on your limbs then an hour or two later put something co!d on them. The change of temperature seems to ease the pain.

I was fortunate that my neuro offered me Tysabri shortly after diagnosis. Its not for everyone but people say they can see an improvement in me since my first infusion in November. I’m sure your neuro will discuss all the DMDs with you soon.

Not sure where you live so don’t know if there is a MS therapy centre near you. If so then give it a visit. Full of therapies, therapists and people who know exactly what you are going through. I live in Kent and there is one near me in Canterbury.

I wish you all the best but p!ease remember to use the forum to scream, shout, cry, laugh or just get advice or talk. People on here care and will do all they can. Xx

Thank you for reply I have chased for the appointment but everything seems to be moving but just slowly. I agree with the denial but I think this relapse has dragged me out of it.

Thank you the advise of the therapy centres and the hot and cold method I will give that a go. Also a big thank for making me feel welcome. Xx

Hi Juliewooley, I’m sorry you’ve joined the MS club but, welcome!! All the things you wrote are like how I am. I was diagnosed in July 2015. I think I’m remitting but slowllllllllllllllllly. I am still waiting for a DMD, I’ve chosen Tecfidera & am on a waiting list for it. I told the neuro when I saw her on January 4th that I want it asap like…yesterday! The worst thing for me apart from the walking is the fatigue, not being able to do anything without stopping every ten minutes to sit down. Sorry I have no tips for you. I hope you get the treatment you want soon. Helly X

Hiya Julie,

i have symptoms similar to yours. I was do in 1993. I try to do a bit of exercise, aqua aerobics and Pilates, which really help. Have a great physio subsidised by my local branch. With regard to fatigue…chunk things and rest between, even if only for a few minutes. I am in Sefton, if you want to call me I am lead support. 0800 040 7318 x

Hi Julia - sorry to hear you’re having a rough time :confused: I’d back up what jru says about resting - I think pacing can help - stop at regular intervals (I aim for 10am, 1pm, 5pm), for 10-15 mins - it really makes a difference if you cut out the stimulation - no tv/radio/phones - maybe some relaxing nature sounds - and just allow your brain to catch up with itself. It takes a bit of practice but even 5 mins revives me for quite a while. The trick is to do it even when you think you feel ‘ok’ and before you end up in a wobbly helpless heap of tiredness.

Good luck

Bec

x

Thanks so much for all your kind replies and advice xx