Hi everyone I’ve a post on the new diagnosed I’d never had ms and was hit by what feels like a train at the end on June. Had 2 really nasty relapses according to the neuro I’ve been left pretty weak in both arms and legs and I don’t seem to be recovering from them brilliantly. This is my question I’m very stiff in the mornings or if I stay still too long. This has been the case since my first attack the stiffness wasn’t really bad then just before the attack I noticed I couldn’t run down the stairs as just beside my hip was like jarring. And my right ankle always cracked. My husband left just before the attack and I have a baby who is 9 month now and a 4 year old. The 4 year old I manage fine he’s a clever boy knows I am ill and the majority of time helps clean up his toys and will help pass washing to me and stuff (he’s always been very tidy) and we chat while we are doing it. My baby is sleeping at mum as mornings are when I’m worse, I live in a big old house with stairs and I dropped her back in September for no reason I think my arm must have just went do I became scared of her. Over Xmas I’ve started doing more with her having her here all day and I manage fine and feel ready to take her home. So any useful tips would be very much obliged. My legs burn if I stand too long and the muscles just get tired very easily. She’s now crawling and loves catching me and hanging on it my legs which would trip my up pretty easily. Anyway my question is how to I help my stiffness in the morning I look like Frankenstein in the mornings until my legs start going in the right direction they slacken slightly but nothing brilliant. The neuro and doctor thinks I don’t have spacisity or it’s mild but my hands are so stiff and feet and legs what can I do to help the stiffness. I’m on 40mg of baclofen when I first took it back in the summer it worked well for a few weeks but now I would need a lot more. They don’t give me excercises to help with it. The physio gave me strengthening excercises but I’m really struggling with them I live an hour from the specialists so am not back for a month for a review. My core leg and arms are all weaker. As an ex dancer I’ve always been exceptionally strong with great balance. Now I can balance through sheer determination but if my dog pulls me I would just fall over. I realise I’ve just covered a few topics any advice or tips or what medication u are on would be grateful. Oh I started dmds the week before Xmas and I think it’s made my stiffness worse but on the other hand I had a uti, bad cold, and hen started getting burning sensations all up my leg and my relapse in augustwith right sided weakness has wanted to join in Em x
Hi em, I just wanted to wish you well and say hang in there. It sounds like you’ve had a hundred things hit you at once and your fatigue and stress must be quite high with all that’s happened recently. Can I ask what treatment you are on as I get stiffness in the mornings but I was worse when I was on rebif, I was like a zombie too, I had to have a warm bath just to get my daughter school but could then walk the dog and get though the day. I’m on copaxone now and not as stiff! Although still get stiffness and weakness flaring up and bad when relapsing and exacerbated which doesn’t take much. I’m quite new to this to, dx nov 2011 but nasty attacks then floored me with symptoms for months and months. We are rubbish at resting and taking it easy but try to do that as you sound like you’ve had a lot thrown at you in the past 12 months. I was the same and try to listen to my body but still have to be told off by family, for doing too much. Take care matey. Xxx
Hello love.
One thing i do want to urge you to be careful with, is increasing the baclofen dose.
Whilst it is a very good drug to reduce stiffness and spasticity, dont forget it is a muscle relaxant.
I took it in increasingly high doses initially, and it made me have lots of falls…you dont want that with the little ones to carry and look after.
Just thinking about where you live…if the house is too big to manage, is there any chance of moving to a smaller place?
luv Pollx
I’m on extavia my muscles have burned since I started taking it. Just been to the doctors my doctor Is amazing but sat for ages she wants to talk to my neuro she’s not about a few things and I have an ear infection. But she’s not happy with the new symptoms and think I def had another relapse but wants to talk to my neuro instead of the on call one which is good. At the moment it is never ending. I feel sore all over all the time. But sitting and not moving is good. Think I’ve had 3 or 4 maybe more relapses since June I don’t seem to be getting a break.
I completely understand I’ve had four relapses in 2013 and sure I’m having another now and I’m on copaxone! Although only 8 months in! I feel like screaming give me a rest from these crappy symptoms please. My neuro says I’m frequently relapsing but not to worry about that label!!! The burning is probably all flaring up cos you might be in relapse again, I recognise that! I don’t know what evidence there is about stress and relapses but how on earth do we control\ manage the stress if we are worked up bout our symptoms / disease and managing family life and young children! Argggh at least we can come on here and like minded people can help. Take care xxx
hi em
dont know if these suggestions will help but here goes.
have you been seen by an occupational therapist? if not, ask your ms nurse to refer you.
the OT comes to your house and wants to know which activities cause you problems.
mine gave me a little rubber dooberry to open jars and bottles.
a perching stool so that i didnt have to stand all the time.
grab rails in the shower. it doesnt sound like a lot, but they are so useful every day.
try a bit of gentle yoga to ease the stiffness in your legs.
pilates is brilliant too. try to find a class with an understanding teacher.
do you go to a ms therapy centre? they often have pilates classes run by someone who understands ms.
you’d probably have to take someone with you to mind the baby - would your mum be able to help?
your little boy sounds like an angel.
carole x
I suffer from stiffness too, particularly in my hands and one ankle (clicking too), in the mornings and at night. I’m not on baclofen. Even though I thought I was too stiff and in pain to do it, I have been doing gentle stretches in the evening, and I have found that these have helped slightly. As an ex dancer you will know loads of these exercises 
Oh and I had the OT people round too and they were fantastic, giving me nifty shower and perching stools. I had to self refer, so hopefully you can just get the number from your ms nurse.
Hi everyone thanks for all the notes I’ve been referred to a horizons in Aberdeen a rehabilitation centre for strokes but it’s an hour away so a one appointment takes about 4 hours. So I’d ot last week got it this week again. Met a lovely ot lady she’s going to try and find a local ot and try and do a joint visit with her which would be much better and not take a whole day. Physio has left me for a month but the exercises are not going well
My mum watches the baby most of the time just. Ow she’s been sleeping there since she was12 weeks. I was staying at mums but I’ve been back since November but see willow loads. I really want her home all the time she’s started crawling I need to find the playpen before I do it. I have dropped her before which have me a huge scare. So now I practically bear hug her lol. So I’m feeling a bit low just now. Mums like u need to stop thinking about ms but at the moment every movement I do reminds me of it. I’m nirmally so strong and positive but finding it hard just now x
Thank you all for your help.
hi em
i’m glad that you have OT involved now.
the rehab centre should be helpful too, pity its so far away.
try wii fit. its brilliant for balance, make sure you have the balance board too.
exercises on it will keep you going.
small steps em, you’ve made some already, just keep going
carole x