I want to hear about any stories of feeling better and being able to walk well etc after years of not being able to walk properly for even a pathetically short distance (like me). Fed up doesn’t quite describe it…
I know the feeling all too well lovey, the bins go out more than me now. However I do have a mobility scooter for days that I’ve got a bit more energy, just waiting on the warmer weather now!! Is there any way you could at least get out to a shopping centre & hire one for the day? Most centres have shopmobility and they are free to hire. Do you do any excercise that might strengthen your legs I know it’s easier said than done sometimes. Sending you a ((((HUG)))) sounds like you need one Sue x
Sounds interesting Jen. Not sure the pharmaceuticals would agree it’s a leap for healthcare lol. X
hiya
i do believe that miracles can happen but very rarely…
i know/understand why u r asking but for me honesty always wins over false hope.
this ms malarkey is sh*t! i dont believe in fighting it cos its a damn site stronger than me and i prefer entering battles i know i can win!
for me acceptance (which is very different from giving up) is the way forward and using my precious energy for important stuff-today i chatted with a friend i have not seen for a year-exhausted but happy-that feeling is not available on prescription!
please dont think this is a flippant answer, far from it-i am doubly incontinent, lost vision completely in left eye,speech difficulties, lost power in all of right side-sods law i am naturally right handed etc etc blah blah but ms has taken my body and my mental well being but it aint having my mind!
i know its not easy but then what in life is? i used to struggle through every day and i found that splitting my day into 15 minute sections were doable and it was beneficial. maybe try smaller realistic goals instead of searching for the lesser spotted miracle (can be found in amongst the lesser spotted birds!)
you are not alone-we are all searching for something but often when u stop looking you realise that you are lucky just how u are…
take care and know that ur post has been read-i hope you find ur answers if they exist in the first place…
ellie
Well I must be one of the rare ones, You don’t say what type of MS your have or what DMD your on.
I believe in fighting MS all the way and make sure you have a DMD that works. I use to force myself to going to the gym in the begining, now I enjoy it and crave to go my strength in arms and legs has tripled and after 4 years of not working I’m trying to find some company to employ me in sector I’m use too.
Even others who goto the gym have had some improvement and some go in wheelchairs.
It’s not all doom and gloom but you have to be prepared to start gym in the first place and keep it up never think you can’t do it, first couple of weeks will feel like hell then the body wakes up and slowly responds.
There has been alot of studies in USA on free weights and gym and some of the studies was done on MS women in their 50’s after 6 months they had a 30% increase in strength and increased mobility.
It’s a shame Neuros don’t tell people to start the gym mine was ‘oh ok thats interesting’ when I frist told him nearly 3 years later I showed him arms and what I can do and he said amazing you must have regeneration happening. Trouble is you can’t prove whats working maybe it is the drugs and gym or both with mix of will power or stubborness.
I truly believe using machines is the way forward and you can sit in them and target specific muscles in legs, arms and core muscles.
You can start on a bike, rowing machine and cross trainer to warm everything up over the weeks but to take it to the next level you have to get on the machines. You also get a real kick as the weights get heavier and your doing heavier weights than the grunting abled bodied person
Foot drop, weak left leg, shoulder pain, hip pain, weak left arm all pretty much gone I only have fatigue now maybe once a month and not the chronic I had last year.
So the bottom line is if you don’t try and make a start you will never know if you can benefit from da gym and its better to start before you get to bad as its harder then if you decide to start few years later.
Here is a video of it
I was heading for the scooter and rollator, but decided to have one last go at changing my life. It was mainly thanks to this site back in 06 that I decided to change my diet.
I could walk very slowly for about 10 metres. My legs hurt so much and were very wobbly. I was housebound for about 4 years.
So, I cut out out gluten and cereals, dairy (for a while) and pulses. I ate a raw food diet for about 5 months and after 2 months, I felt great. I didn’t have fatigue or cognitive fatigue any more and I still don’t. I have one or two bad days, but that’s all.
I was lucky to get onto Rebif almost straight after diagnosis and I still am injecting it - it’ll be 14 years this year. I did try LDN as well and it helped for a while.
Gluten and I don’t get on. The bread here is divine, but a rare treat now and then I crave it for about 2 days afterwards.
This year, I started doing leg exercises, as my lateral ligaments are too tight to allow my knees to bend much. I do squats and plies (ballet exercises) and slowly, the angle of the knee joint is improving. I don’t have much meniscus left (cartilage) thanks to the bad tracking of the joints (thanks MS - not!).
When I had my evoked potentials tests in 2000, the technician said I had very little conductivity in my right leg and asked how I was still walking. Well, I’m still walking now, it’s just more of a conscious movement. I wear an ankle weight on my right leg and this helps. I’m hoping to get back on my bike this year (fingers crossed, touch wood).
I hope you manage to find a way back to some better stamina and balance.
very best wishes,
K
Oh mir!
Firstly, here’s a big, big hug ((( )))). Secondly, remember that you’re not alone dealing with this s$%£t and thirdly, never say never.
Sadly, Multiple Sclerosis is as unique as a finger print. Whilst we may each share a few similarities, unfortunately, the progress, or not, of this disease is different for each and every one of us. I learnt that very soon after joining this forum.
My MS journey does not make sense to me at all. My last MRI scan in June looked pretty grim. Large, white lesions were clearly evident on my scan like newly formed continents encroaching on my poor brain. I was diagnosed in June with RRMS having suffered what I had initially thought was a TIA (mini stroke). But, even that didn’t make sense!
I had, until then, led a life in which exercise, fitness and endurance activities etc, played a very large part. I was supposed to run another half marathon in June, before everything kicked off, but, unfortunately, MS had other ideas!
During June, I deteriorated rapidly and spent the rest of June, July and August in Hell- no question. Each day was punctuated with countless episodes of painful muscle spasms and spasticity. With each episode, my energy levels plummeted until I was left virtually lifeless, by the afternoon. At that time, I just wanted out. Enough is enough.
Thankfully, by the beginning of September, life was returning to normally; albeit rather slowly and on Sept 9-13th 2013, I was in hospital receiving Alemtuzumab (aka. Campath).
Long story short, I completed my first half marathon since diagnosis on Sunday 2nd March 2014. I was a little disappointed that I had missed my PB by fifteen minutes, but as I crossed the finish line I was overcome with emotion. After all, I had managed to run 13.1 miles and made it to the finish line. I feared that my running days were over- but thankfully, they weren’t!
Getting around that course was tougher than I would have wished. It never used to be that hard, but I did experience significant neuropathic pain on my left side, particularly my left arm. On top of that, my right arm was in plaster because I had slid up on ice during a training run two weeks before. I really must have looked a sight!
All that said, I am now very proud of myself.
As i mentioned earlier, according to my MRI scans etc, I shouldn’t be walking; let alone running- But I am.
I’m completely with Hobs. Exercise is the key!
Come on mirs- make it happen- YOU CAN DO IT!!
Tracyann xx
Blimey Tracyann well done you, I could not do that my stamina sucks more than miley cyrus. But even when I was 12 I hated cross country running.
Anyway thought I reply as thats very cool
I started walking again today after 3 weeks of being housebound hope you recover soon x
Hi-five Hobs!
Thanks so much. I’m not going down without a fight.
Anyway, we soldier on!
Best wishes
Tracyann xx
hiya all (tho specifically hobs and tracyann)
i totally get what u r saying and i agree to some extent but may i add…
i was doing similar to you-aerobics several times weekly, lots of walking, bellydancing, still driving, volunteering etc etc. 18 months ago i had a huge relapse and have been left with permanent damage (speech difficulties, whole of right side affected, doubly incontinent, use powerchair as can only wobble a few steps holding on to furniture-cant manage at all on my own) this isnt a sob story! its my reality! initially my right side was totally useless-so heavy i couldnt move it at all. after months of my physio-by that i mean i was determined to make the limbs move if i could. it took several months before my hand could rise above my head-it still hasnt got the strength to stay up there so just crashes back down but thats improvement from 18 months ago. it took til 2 months ago before i could move my toes. so yes-i agree with u both re exercise and its benefits but i hope this will help you understand where i was coming from when i said what i did. everyone should have hope! i do. what i have read on ur posts u r still fairly active-brill, long may it continue! as i said i agree re exercise being good but for me there was/is a point that the damage done has been so severe then exercise makes no difference in that context - the messages have no chance at all of getting through.
thats were i was coming from re not fighting. for me i have i have had to find a way of coping-just as we all do! usually we get several days/weeks to do that-mine was literally transformed in a few hours.
for any new folk reading please be rest assured what has happened to me is very rare! in fact, i have had more attacks since then resulting in permanent loss of eyesight in my left eye amonst other things but i still aint fighting! i am accepting and living life as fully as i can-thank goodness for carers!
continue with exercise as long as u can-not just for general health benefits but to hopefully remind the pathways how they are meant to work. i do believe thats how i have got the very limited movent that i do have because of the near 30years of exercise i did do-that included cross country running and ladies champion in my athletic club days!
ellie
I get what your saying chocorange and that must have sucked.
All I’m saying is many years before diag even thinking back to 90’s I could not do press ups or lift weights or even feel fit for that matter, I use to smoke 20+ cigs a day, worked in a office, didnt drink that much and had way to many Kebabs with extra chilli sause. After diag I thought it was all doom and gloom, limping everywhere or left leg would give away and the dreaded foot drop.
With the foot drop they gave me a foot brace and after 6 months of using it my foot drop was worse and unable to lift foot.
As I said above great results with gym it won’t work for some but could work for others I think everyone should give it a real go for at least 6 months to see if they notice a difference.
In a few years time I could have a massive relapse or my rrms(highly active) could change to rrms(buggered) but that would not stop me from fighting I like fighting
I see on this board so many similar posts to what I had be it leg pain, hip pain, foot drop, shoulder pain etc etc and there can be
a real way to fix it instead of swallowing a pill or clamping on a leg brace. A lot of the pain can be down to bad posture if your left or right weak you over time will lean towards the stongest side all core muscles, thigh, knee etc will try to take up the slack pulling
everything out of whack. This was confirmed by my old physio.
I doubt a gym will help people with really poor mobility, but there are alot of newbie rrms that can benefit from a gym workout, once they get a dmd that calms the MS down.
A couple of people at the gym have terrible spacicity they either take Sativex, Baclofen or both but they still suffer and there is only so much they can do with their legs if the muscles refuse to go into a relaxed state, it’s so sad as they really put the effort in.
It’s such a shame Neuro’s or someone in the UK do not do a real study in gym workouts, free weights and mixed MS types.
It would not cost much and its easy to measure and get the data.
Anyway shutting up now as I’m rambling
lol!
basically i think we are agreeing-just using different meanings of the words we use…professionals do why cant we?!
ellie
LMFAO
This is an interesting argument or should I say discussion. Can someone give me a greater understanding. I got a stern lecture from my mother a month ago telling me I’ve always been a fighter and to try and get some back, I was 3rd in worlds in dancing the year I would have came first or second I fractured my pelvis 10 days before the world championship having won all year. Did it by doing stamina training at the gym as my foot was sore and I wasn’t to hop on it till the worlds. Didn’t tell my mum I’d hurt my hip went Into a leap pulled the tendon off the bone and took the bone with it. Got told I would need wheel chair crutches for 8 weeks slowly learn to walk and get intensive physio. By week 4 I was sneakily walking into room with crutches running within 8 weeks no physio required. Didn’t start dancing again for 4 months to allow me time to properly heal. But the sore foot wouldn’t go away I was in agony fast forward a few months represented Aberdeenshire came second eating nurofem and icing between dances. 2 days later results of MRI was in I’d been dancing on a stress fracture for9 months. I was just about to learn to drive and practiced driving on my then bfs farm while in plaster. Not to be advised. But I’ve always been a fighter. And this has knocked me for 6. In the last 12 months I’ve have up my dancing. School I’d a horrendous pregnancy. Had a baby, left my husband. My right side stopped working from foot drop to not being able to lift my arm at all, to not being able to write. They said it was stress and put me to see a psychiatrist. I left my husband not the other way. Yes I’d had a baby but it wasn’t my first. The psychiatrist said I was highly anxious. I then got dragged round the streets to get my legs working as it was just stress. Got readmitted to hospital and eventually month later MRI. Got told CIN so was told to pretty much ignore everything g get on with it when another massive relapse hit in November. I have seen physio to strengthen core but the exercises I got I’m too weak to do, Id pretty much given up as I knew I kept relapsing extavia doing nothing but have a scan on wed with Gilenya and tysabri in the running. Not fighting isn’t getting me anywhere. So get the next few weeks past and I want to start excercising. I’ve a 10 1/2 month old daughter who sleeps at my parents, and has every right to look to them as her ‘parents’ effectively I just gave birth to her. But when I go in her eyes light up. Changing her nappy is so sore on my arms. And my legs are seiZing when I kneel. I’ve a 4 head old who has been amazing. He said to me today mum why did you ask dad to move out. Diplomatically I said because grown upa fall out of love. He them replied I don’t really want to be the only man in the house you need tl get a boyfriend. I said oh I don’t think so and he ran off shouting well I love you to bits and backs to bit and back. So I owe it to them to fight and be the best possible mum I can. I live in a small town and it didn’t take long for everyone to find out ‘the dancer’ has ms. And a lady said to me ‘I’m so sorry to hear you’ve ms I used to think your a really good mum when you left the shop your son was so well behaved.’ I don’t want to be pitied. I just want to be a good mum. So hopefully when I start this new treatment and start to get a break the gym can get me strong again. I’ve let my teaching certificate expire might need a grovelling phone call. As I got asked to do a class for someone I know and I neec to be Emma again as well as being the mum my kids deserve, Anyway sorry for listening to my rabble but after traceyann post and hobs. I neec to try. I know it may not work as I’m a realist Ellie also. Apologies again Em x
hey em
only one thing stuck out for me in ur post…
stop blooming apologising!!! u have nothing to apologise for!
i personally dont like the term fighting for the reasons i have already said BUT i also understand why folk do! so if thats the term they want to use who am i to challenge that? this ms malarkey is difficult enough without those that are supporting each other squabbling amongst ourselves! i have read many things on here over the years and initially i though what an idiot or similar but i soon learned that we all cope differently,use written language differently and what i do now is ask myself why they be asking such a question or why they be feeling that way. off course i still dont fully understand from thats persons perspective but i do always learn something and do feel for anyone thats suffering (in any shape or form) and hope thats making me more compassionate towards others.
Blimey you have had it rough. LOL at your son I bet he keeps you busy.
I tried 4 sessons of physio and gave up with it, the things they wanted me to do was so light it was like I was being wrapped in cotton wool.
I hope the Tysabri or Gilenya works for you I have seen some amazing results with people on Tysabri in infusion room over the 5 months I was there.
Pls go slow with the gym as if you do what I did and go on everything staright away your end up with pain in places you
didn’t even know you had
You know what parts of your body are weak alot of the sitting machines all have body picture with highlighted muscles they work on.
It may take a while before you hopefully feel any difference. It was about 3 months with me and its all very slight but build up over time.
Best of luck with it Emma maybe take a friend with you to talk and pass the time it does make working out easier.
Ok ellie I’ll apologise for apologising
Gre I wrote more than than and one lines appeared