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Is this how it's going to be now?

Hi, As you all probably know from past posts I was diagnosed as having a relapse four weeks ago and had steroids. However the relapse actually started last November but I had not realised it was a relapse until my left leg really stated playing up. I’m returning to work Monday and do feel very ready for this , however I went in for an hour or so today, did not log on just to drop some stuff off and say a quick hi. I have been on my feet and probably a little nervous about the visit to work since 8am till half twelve I did think my leg was improving and it does still have the improved strength in it however its really aching and I do feel quite fatigued which is actually something I do not usually seem to suffer with that bad? I would not be on my feet all day at work, just I was stood up chatting to various people in various offices then I went and wandered round tesco for 45mins. Is this because I’ve exercised my leg in a way more than its been used to for the past four weeks? Or is this how it’s going to be … Tired each day? Or good and bad days? i also did a walk yesterday apx 1000yds which i havent done since november so wonder if this contributed? This is worrying me a bit although I have to say when I have my little boy all day who is three and tiring I do not have these aches but maybe I don’t get chance to think about them either. Also worrying as my mum has planned us a manchester weekend trip for her friends hen do… Leaving lunch and returning the following day. She doesn’t seem to realise I may struggle walking round the shops and going out for a meal etc later too? Do others manage this…hard to believe but I did manage this November at the beginning…but cos of this leg I’m worried I won’t manage now? What do you think? I will be able to nap mid afternoon before the meal. Have I just overdone it these last two days? Advice please. Xxx

Hi Lisalou, I don’t know how you would feel about this but would walking with a stick help. It might make walking easier and less painful. Anne x.

Lisa, it’s much too early to say how you’re going to be in the long term.

I’ve had relapses that took a year to get better from. You’ve had either three months, or perhaps as little as four weeks, depending whether you measure from when it peaked, or when you think it started.

If I’m really honest, some things have never been quite the same since, and I always, always feel tired. But having said that, I’m not visibly disabled at all, to anybody watching. So, for me at least, some things are “the way it’s going to be now”, but I’ve got used to those, and they’re not honestly that bad.

Feet always hurting is easily the worst, for me. I don’t think they used to hurt as badly as this. But they still do everything they’re meant to - like carry me around.

Tina

x

I can walk fine really its just after a while my leg gets heavy and feels a bit funny… Occasionally I may walk a bit funny but not massively its more like I struggle to lift the leg cos of the heaviness and situation. I don’t get any pain in it other than this achy feeling which is only later when I’m at rest? I’m not sure a stick would make any difference to these feelings at the mo but I do know where your coming from xxx

I can walk fine really its just after a while my leg gets heavy and feels a bit funny… Occasionally I may walk a bit funny but not massively its more like I struggle to lift the leg cos of the heaviness and situation. I don’t get any pain in it other than this achy feeling which is only later when I’m at rest? I’m not sure a stick would make any difference to these feelings at the mo but I do know where your coming from xxx

Hi Anitra, Thanks for that reply. It peaked mid January hun and the nurses did say steroids stay in the system for three months and carry on working. I just expect things to improve now especially as this is the first relapse that’s left me with residual symptoms. I don’t often feel the fatigue apart from at the beginning of a relapse and if I’ve been a busy bee so today shocked me a little. I’ve not had a nap however and feel fine now in terms of fatigue. Leg still feels tired but I must admit its more exercise tired (I think). My legs are carrying me round but I think the left leg feels the strain maybe …maybe losing some weight will help although I only weigh 8 and a half stone. A few pounds might help though :wink: just I look a wally when I’m working differently as its heavy and feels funny! Oh well let people talk eh? I’ve also only had one neuro physio session so hopefully the more I have the better. I’m not on any meds yet either so maybe that needs to be considered now too. I keep trying to talk myself out of that route …hate needles and if Italy myself out of it then it means I’m doing okay?! Lying to myself a bit there. Thanks again to you both for replies x

I remember thinking and asking the very same question a lot after my diagnosis.

There are various elements:

You may get better, or a bit better.

You will have good and bad days

You will learn to pace yourself. I have small kids too, so I know how hard this is, but you learn to say no to things you can’t manage, and people learn to accept that, my friends are all considerate now when we make plans, or I just say “sorry I can’t manage that, i’ll meet you there etc”

You get used to whatever your state is, it becomes the new normal and is less shocking to you. At the beginning I was shocked I couldn’t walk for hours, but now its fine, I know my limits and I find ways to make it work.

Could you go back to work part-time for a few days, to ease yourself in and find out how it’s going to be? You might find that it’s a shock to the system at first but that you get used to it quite quickly. As far as walking sticks are concerned, I always resisted using one until I really couldn’t manage without, so I have great sympathy with you on that. But actually, lots of people use a stick for all kinds of reasons and it isn’t the kind of ‘disability marker’ I thought it was. If I had my time again, I would have started carrying a fold-up stick in my bag earlier, and using it when my leg got bad. Less risk of people thinking you’re staggering because you’re drunk in the day that way!

Hi Lisa I’m in the same situation as you, with me if its not one leg its the other. My first attack was in October and I think I’m slowly improving. For me magnesium oil has helped, its only been a week but I have been putting it on my legs at least twice a day and the pain seems to be easing(Epsom bath salts are also supposed to help).I got mine in Holland and Barrett so it maybe worth a try.

Thanks for your replies. Amylou I think your right I need to accept what I can and cannot do instead of trying to push myself to do what I used to do. Plus as people keep telling me I’m talking like I’m not owing to improve anymore when in fact I may as the steroids only finished three weeks ago, I’ve only had one physio session and being back at work my make me forget my issues instead of sitting at home thinking about them …that too much time to think theory! Sewingchick if I get to a point where I need a stick I would consider it however not sure at the moment I need that and the physio too felt that its more about what my leg isn’t doing due yo the heavy feeling and the fact after resting for a few mins this corrects itself would suggest that it could improve. I too when ready think I would carry a fold up stick. Thanks Zoe for your advice, touch wood I don’t get pain just a full ache when I’ve over used my leg, however I still may invest in the magnesium oil as I’ve nothing to lose. Thanks guys x

Ooh sewing chick meant to say about my working hours…I only work six hours Monday, four or five hours Tuesday then full days Wednesday and Thursday . However I have requested now rather than going back monday to back half way through the week so I don’t overdo it the first week then full week the week after. I had to tell a little white lie and say the nurses has suggested this as whilst they are understanding and probably would have said yes anyway it comes better from the nurses when hr are looking into my absences etc. my manager is fan dabi dozi :slight_smile: whilst it means boredom for another two days it does make sense and I have physio on Monday. Just hope GP will do a further sick note for another two days as his response when I requested the last was you don’t sound ill ! Funny m.s doesn’t make you sound ill! Idiot! Thanks everyone x

Hi just an update for those that gae me advice on my return to work. Being phased back which the GP actually recommened when I rang yesterday. So first week mornings only then back to usual hours the week after. Thanks for all your advice x x P.s ive found my positive hat again and popped it back on :slight_smile: x

Hi, you might have a little spasticity in your leg. Spasticity can increase temporarily when a muscle is exercised which is why the leg feels heavier after use (contracted muscles feel heavier). Talk to your doctor about this and he may be able to give you baclofen, which takes the edge of the spasticty enabling you to walk further distances without the heaviness.

Regards Moyna x

Do think again about using a stick now, Lisa, but watch for the problems …
Suppose your left leg is non-cooperative, and you have to swing the whole leg in order to walk. You hold the stick in your right hand, and the stick and the left leg swing together - then the right leg goes forward, and so on.
This does two things: it helps you get around, and it tells other people that you have a walking problem (well, it tells some people; others will really not notice and try to walk between you and the stick. (Yes, honestly.) If you lurch a little bit, a stick indicates a walking problem, not an excess of wine at lunchtime, :slight_smile:
In a year or two (or three or more) you may actually need a stick to get around, and it is better if you are already used to it.
Now for problem one - when you start to need it, you will probably need it badly enough that you actually lean on it as you swing the bad leg. That puts extra loading on your “stick” shoulder and hip.
At this point, a good physio may suggest two sticks. I certainly wish I had gone over to two sticks earlier, but it has got rid of the fear of a hip replacement (yes, I am of that age …).
That brings problem two: walking with two sticks seems to trigger an automatic rating of 6.5 on the EDSS - and that it the top end of the scale for DMDs.

But, unless you also have a “dropped foot”, you can get around quite fast with one stick or two.

Anf finally, problem three. If you have a stick you have to handle it while shopping (or using a cell-phone). The collapsible sticks often have a wrist strap, but if you can use the old-fashioned wooden sticks with the handle bent over in a semi-circle, you can hook sticks over your arm and have both hands totally free.

Geoff

Thanks moyna, I did wonder that but some suggested it may make my leg feel weaker as it was feeling weak, however this is slowly improving but I wonder if its worth considerinh trying at least. I did try baclofen at initial diagnosis but was took off it as my legs felt sore and very weak so they felt this was happening because I didn’t need it. Thanks Geoff for your advice however at the moment the thought is that the leg may improve more as it has done, it only goes heavy after about 1000 yards now. I weirdly can stand on it for a while, been on my feet for most of the morning and its not too bad. Walking with a slight limp but that comes anfe goes! The physio feels a stick is not needed as yet given this weakness, heaviness occurred with a relapse. I do understand what your saying though. X x x