Is this normal

Everyday living
1

I only had my first (major) relapse in October 2013 and I have since been officially diagnosed with RRMS. I have just been crap all the time though, shouldn’t I get better?

At the end of January things were looking up I guess, I was even back going to the gym 3 times a week and I was really pleased, then in March I had another relapse although my neuro says it was stress. Since then although I have improved from that state of barely being able to walk or brush my hair and with terriblly irritating skin sensations, I am still struggling. All the time I have very sensitive and sometimes painful skin on my arms and legs, I am so fatigued, my memory is gone, I can’t concentrate on anything and generally everything is hard work. I can hide it though most of the time.

Is this it then? Will I ever get myself back? Is it too early to say? Sorry, I am just so fed up with living like this…

2

Hi,

I’m afraid, despite the name, RRMS is still a progressive disease. It’s a common misconception that things completely return to normal during remission, and for a few, that’s true - especially after early relapses.

But most people do accumulate some residual damage from relapses (there’s also growing suspicion relapses aren’t the only contributor to disability, and there are other, more subtle processes going on as well…) So most people with RRMS aren’t “completely fine” in remission - just better than they were.

As far as Neurology are concerned, I keep being told how brilliantly well I’m doing, as I’m not visibly disabled, and haven’t had a full-blown relapse in ages, despite not being on DMDs.

HOWEVER, I do feel as if I have permanent flu’, and someone suggesting something as simple as: “Would you like to have a look round the shops?” sounds to me like: “How do you fancy climbing Everest?” “Er…no thanks, rather not, unless I’ve got to.”

I’m fed up as well. I know I should be grateful I can still do pretty much everything, but none of it’s without hurting or feeling like an effort any more. My arms get achy even brushing my teeth or washing my hair. Today, in a new first, it took me four or five goes to open the front door, after an “incident” on the bus, when it was extremely hot, and an old lady in a worse state than me dropped her shopping. She couldn’t pick it up - I shouldn’t really have been picking it up either, but it was obvious she couldn’t - there was just us, and I have nothing the visibly the matter, so there I was, grovelling about on the floor of the bus - oh, and trying not to lose my balance, as we were moving.

When I got home, I first couldn’t get the key in the lock properly, and then couldn’t turn it. Had to keep trying with right AND left hands until it eventually turned - all the time standing there getting soaked, as it was pouring.

Yes, it’s cr*p. Goodness knows how I’d be if I wasn’t doing so fantastically well - allegedly.

Tina

x

3

Skin sensations you mentioned are normal. Even when im not relapsing my skin can be really sore to touch. I take gabapentin for the electric shock type sensations i get but that does nothing for the sore skin. For fatigue i started taking a multivitamin called ‘inner me - energise me’. They dont completely cure fatigue but i have felt loads better since i started taking them and i know all about it when i forget! Which rings me to the memory, its appalling. I write everything down and even then I misplace things, forget to lock the house, leave taps running and walk away and all sorts. All this when im not relapsing - im a bundle of joy when I do relapse! I hope you start to feel better soon x

4

You could be RRMS (highly active)

I was this and over time my MS did calm down was on copaxone, tysabri, rebif now Gilenya and I feel the best since the last 6 years.

MS is different for everyone, its good your doing gym it’s the best therapy to stay active and cut down on disability.
If you are highly active I would ask for Tysabri, rebif or Gilenya.

I use to have fatigue, crap short term memory, dumb mode where I could not process conversations or questions etc.

All that has gone now.

5

Hi anon I am rrms first relapse may last year which went unnoticed the major in June. Couldn’t walk, write, use my right arm and was told it was stress as I’d had a baby and split from husband all with 3 months. Fast forward another major relapse in nov. Had neuro last week there been more relapses aller ones. I feel like I’ve been fighting (physically) all the time I’m on pregabilin and Amitripiline which def help with the sore skin, although it’s sore I don’t feel that. So that’s good the meds are def working if I don’t take them I remember why I do. My bones and muscles feel sore contribute from weakness. But also neuro says the signals are confused so if I lean on my arm or someone leans I think it hurts, it doesn’t really my brain just thinks it is. And my memories shocking too. It’s annoying.i did a iq test tonight and got the result brilliant obviously my brain still works it’s just the memory that doesn’t Hope u feel better soon Em x

6

Hi Anon! Sorry to read that you’re having a crap time of it.

Like you, I was diagnosed with RRMS last year. Up til then, I had been a very fit endurance athlete, but in June I suffered what I thought was a stroke and became partially paralysed on my left side. I rapidly deteriorated and spent July and August in Hell- no question! I don’t think I could have continued that way for very much longer.

But, by September, I was in hospital and receiving my disease modifying drug, Alemtuzumab aka. Lemtrada.

By mid September, I was back at the gym slowing rebuilding my broken body. I already had a very good vegetarian diet, but I now made sure that I also took on board additional nutrients, vitamins and minerals to benefit my MS body

Since then, I have run a half marathon and only missed my PB by 15 mins. I’m now ready to run a 24 hr event that will be taking place near me in May. If you saw me running round my local running track, you probably wouldn’t know that I had MS. I am still able to run faster and stronger than ‘normal’ people half my age.

All this said, I have not escaped scott free. I now suffer from Secondary Dystonia which affects my left side when I am tired or fatigued. Most of the time, I disguise my ‘moments’ very well, but sometimes that is not possible. It is what it is and frankly, as long as I can still run and do my thing, I don’t care what I look like during those episodes.

Please remember that MS is different for each and every one of us. No two people will experience this disease in the same way. We may experience a few similarities, but that’s about it. There is so much about Multiple Sclerosis that has still to be learnt.

​And finally, at diagnosis, I learnt that I had actually had RRMS since 1995. In all this time, I had experienced a total of 4 minor relapses!

So, after all those years, I am still doing really well.

My advice to you is to look after your MS body. Eat well and exercise well- get proactive!

This is YOUR journey- nobody elses.

Good luck

Tracyann xx

7

Hi

I’m really sorry you’re having such a pants time of it. You’ve had lots of good advice already.Speak to your MS nurse or GP as they should be able to give you advice/recommendations such as drugs for pain, or getting physiotherapy. It might be worth keeping track of what you eat too, as you may find that could things worse. Like I always more lethargic after white bread or pasta, so I only have wholegrain or gluten free now. And fatty meat things like lamb or sausages can leave me feeling weaker.

I just wanted to ask though, why do you feel the need to hide what you’re feeling most of the time? I know as Brits we feel like we should maintain a stiff upper lip at all times, and always try & ‘be strong’ (ie never admit that you’re finding things hard). Personally, I think suppressing & bottling up how we feel all the time isn’t great for us. I think it’s important to find healthy ways to express what you’re feeling - talking with those closest with you, counselling, posting on here, journalling, art, simply having a good cry or (like I do sometimes) punching a pillow when I’m feeling really frustrated :slight_smile:

Dan

8

Thanks everyone, I wasn’t sure when this would get posted as I am new here and it had to be checked but I am glad I checked this morning. I guess the whole idea of ‘remission’ is a bit of a farce then! Looking through my history though, they think I had my first memorable relapse in 2011 so I guess I did recover in between all the early ones.

Its not that pants, I take pregabalin which probably cuts the worst of the sensations and I have asked for it to be increased, hopefully without turning me into a zombie! I am hopefully going to be starting on DMD’s in a couple of weeks, I have an MS nurse appointment to discuss the best options.

Anitra, I had a similar incident the other day when a guy fell down in the street near me. Luckily I wasn’t the only one to help but I sort of got stuck carrying this mans bags whilst we helped him around the corner home. I really wasn’t cut out for that. Same as Em, mind over matter with this MS I think. ie, can’t really feel my feet but they definitely are still there! :slight_smile:

Tracyann, wow, well done with your running! When I did go back at the beginning of the year I was starting to build my running back up, but I am so unsteady I need the sides on the treadmill to grab onto.I don’t feel energetic enough to go at the moment, I barely make it through the day, I know this is a vicious circle though and the gym will give me more energy in the long run.

And in answer to Dan, the reason I hide it most the time is because I get fed up moaning, I also know that people get sick of hearing about it all the time. I used to get sick of hearing about other people’s long term health issues when I was well (horrible I know), I don’t want it to be everything in my life (even though it is first thing in my head these days) and want to make sure that I can recriprocate with the listening with my friends. I do tell some people, in fact I actually went out last night and after my 1 glass of vino let loose. I guess I know people (non- MS) can’t really understand it, hey I can’t even explain how I feel half the time. I do need to find an outlet will have to work on that I think. I was doing a study course in Pyschology, for fun, but can’t focus on it these days or retain any information.

Vicki

9

Hi Vicki!

That’s the spirit.

Like I said- be proactive. It doesn’t have to be THAT bad!

As soon as you feel able, get yourself back to the gym. Yes, it will be tricky and maybe the treadmill will be a step too far at the moment. I couldn’t even use the treadmill when I started back. Like you, I was unsteady on my feet and, in addition, my left leg wouldn’t operate properly- so it was a struggle! Many occasions was I left crying tears of frustration. However, I gradually rebuilt my stamina and fitness levels using the Rowing Machine and Bike.

All that said, things DID improve over time. My brain re-routed a few neural pathways and hey presto!

Yes, things have changed. Occasionally, my balance is atrocious and I still wouldn’t feel safe trekking up mountains. But, never say never! Hopefully, I will return. I avoid big races now because of the herds of runners. The last thing I need is some pillock clipping my heels. I just couldn’t regain my balance.

I completely understand your fatigue issues. I don’t think there are that many MS sufferers who don’t. Sometimes, my fatigue levels are high, but I force myself to maintain my exercise regime.

If ever there was an incentive for me to keep going, this is it!

Best of luck

Tracyann

10

I had my first episode in 2007 (6mths after opening our shop) it was blamed on stress of opening plus ,moving 2hrs south with the family, young son (then 7) to settle. My diagnosis wasen’t confirmed until Jan 09. I to suffer most of your problems and it is still ongoing. You just learn to live with the changes. I get very angry and frustrated with simple things that i can no longer do but i am trying to accept it. I’ve changed my mindset to say “right if this is how it is now then just do what you can to make it bearable” For me its having to reduce the early starts at the shop (my long suffering hubbie is one in a million doing it all on his own) The housework suffers and i no longer cook and i’m starting to not feel so guilty just sitting on the sofa reading. I get up when i can and sit down when i need to.After my last episode Aug 13 my symptoms are worse and getting worse so much so that the neuro has moved me up to Secondary MS. I guess what i’m saying long-windedly (?) Thats what you should try and do. Yes this is a chronic illness that will not get better just more managable. You will find ways. Hope this helps…

11

Hi everyone, I guess I have had it quite easy up until now. I had numbness in my leg 25 years ago but it went away and I never thought anything of it. Then about 10 years ago I started having numbness regularly and leg started dragging while on hikes but it is amazing how much you can delude yourself everything is fine. 6 years ago I finally decided there must be something wrong and went to have checks. Dx RRMS, but now there is more progression and no remission. Have foot drop and walk with a stick. Balance is crap. But I still consider myself lucky. Not on any meds. Don’t have much pain. I don’t do any exercise and love chocolate and wine. Oh yes! My 5 year old grandson thinks I have a very bad memory.