Is there a group on here for Multiple Sclerosis
harleigh67
Posts: 131
Do you have MS? Are you trying to get into better shape to fight this disabling illness?
I AM and I was friended by another person today who also has MS.
I am wondering is there a group for people who have MS?Or do we need one?
They should call MS...The "BUT YOU LOOK SO GOOD"disease.
When You have MS its hard to understand what we are going through because we look so normal, although our insides are throwing a major hissy fit..... I feel others who have MS may be able to understand what your going through and be able to make suggestions on how to adjust exercise to make them fit an MSer better.
I AM and I was friended by another person today who also has MS.
I am wondering is there a group for people who have MS?Or do we need one?
They should call MS...The "BUT YOU LOOK SO GOOD"disease.
When You have MS its hard to understand what we are going through because we look so normal, although our insides are throwing a major hissy fit..... I feel others who have MS may be able to understand what your going through and be able to make suggestions on how to adjust exercise to make them fit an MSer better.
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Replies
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HAHAHA..RIGHT?! I don't care how I LOOK, I am a TIRED biotch. I have MS too. I don't let it dictate excuses for me, I use it as an excuse to do something about my health, instead of stopping me. Luckily I don't have many problems with it. I think in part because I refuse to give it that kind of power in my head. i am too young to be stopped by that. Though I realize there are others that have it much worse. I would be glad to be a friend to you. I have worked my way up to working out with Jillian Michaels, after doing this and walking for a month to get my body used to it. That way i am not putting too much stress on myself physically and MS can't get out of hand and act up.0
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Hi - I don't have MS but my Father does... I can tell you that exercise is the best medicine for MS if you can do it. My dad gets out of bed every morning at 6:00 AM and lifts weights with his one good arm. He cannot walk and his left arm does not work. but, that does not stop him from doing what he can do. And, believe me, it has kept him going for about 20 years (he is 72).
Please keep moving as long as you can and fight for your well-being. You CAN do it because you are WORHT it.
:flowerforyou:0 -
The problem I have is I wake up and feel good and want to do as much as possible while I can, then I OVER DO and get fatigued, have you found a way to NOTdo this? I was unable to walk or get out of bed most days a year ago(vertigo full force and injury from a fall) I could barely walk a 1/4 mile a day so am excited when I feel good and can do things now its hard to find that happy medium!0
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The problem I have is I wake up and feel good and want to do as much as possible while I can, then I OVER DO and get fatigued, have you found a way to NOTdo this? I was unable to walk or get out of bed most days a year ago(vertigo full force and injury from a fall) I could barely walk a 1/4 mile a day so am excited when I feel good and can do things now its hard to find that happy medium!0
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I'm new to MFP, and just thought I'd chance there might be someone with MS out there. Doing as much as I can while I can is a way of life with me. Unfortunately, the fatigue gets me and I end up not being able to keep up and end up farther behind than I was. The "happy medium" seems like an unattainable goal.
I have started taking breaks throughout the day and that seems to help. I'm also trying to accept that I can't keep a scheduled exercise program. I've started walking on a regular basis as much as I can, but when I can't I do something when I can. This means I have to be flexible in what and when I do it.
I like what tiggerbounce 411 says about not letting it dictate excuses for me.0 -
Hi there
I also suffer from MS and I am finding it very difficult losing weight due to lack of exercise, plus I`m going through the menopause at the moment which has caused me to gain a stone.
Maybe we can help each other with advice and tips?
Linda x0 -
:flowerforyou: Glad you are finding your way! xx0
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I think a group is a great idea. I was diagnosed almost 3 years ago (weeks after my 30th birthday) and had many ups and downs ever since. Exercise, for me, is the best medicine and I'm thankful every day that I can do it.0
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I was just diagnosed, so if there is a group, I'd love to join it, since everything is still so new to me.0
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If there is a group I would love to be a part of it. It is great being able to talk with others that understand what you are going through. I am 34 and was dx in 2000 at 21. So I have pretty much been dealing with this disease my whole adult life.0
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I'd love a group of *kitten*-kicking MS sufferers. (I deal with MS among other things and feel a bit alone.)0
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I'm not the only one! Right now, the heat & fatigue are kicking my a**! I still get to the gym at LEAST 5 mornings a week. My day is usually "over" by noon. I stay indoors and try to rest. Boring! My main goal is to get to the gym every morning and concentrate on eating right.0
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I've was diagnosed with ms 5 years ago. I'm unable to run anymore due to foot drop. I now use the elliptical bike to get in my cardio. That piece of machinery has been a blessing .0
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I am in the process of being diagnosed (possibly) with MS. Just had my MRIs with contrast and I'm seeing the Neurologist on Friday. I have a plaque on the brain MRI and symptoms that started a year ago. Symptoms include weakness in both legs, loss of balance, abnormal gait, I can't run anymore and have a difficult time just walking. Any suggestions for excercise??? My legs feel so unsteady at times. I'm worried that if I work out they won't hold me? What is your experience?
Thanks! Chris0 -
I was diagnosed seven years ago at 25. Luckily, since the first couple of years after getting on copaxone my relapses have nearly stopped, and my most common symptom is fatigue. I started trying to get healthier around march this year and since then the exercise bike and elliptical machine have been my go-to exercises every morning. Having access to A/C while I work out is a must, and because they're both stationary with handholds I don't have to worry about falling. But what works for me may not work for you, everyone I know with MS has a different experience with it. <shrug>0
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a loved one was recently diagnosed with MS, it's changed our lives. I did the MS Walk with my team just 2 weeks ago. Clearly we don't know enough about this disease, and just slowing it down is unacceptable.0
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I do not have MS but my husband does. If there's a group, I may just make a MFP account for him to see if that motivates him to get off the couch. He is tired a lot and I try not to push him. We do go on walks but one thing that man does is eat junk! Irritates me to no end so I stopped buying any junk food and now (especially this time of year) the only time he gets it is when Halloween is here and he gets into the kids' candy. But I would join the MS group to find things for my husband.0
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I just want to wish you all the best, from the bottom of my heart.
My mum was diagnosed when I was 18 months, and I'm 20 soon, so a while ago. Spent nearly all my childhood in a wheelchair (I have no memory of her not..) and so I've seen it all first hand.0 -
i have MS. I started this journey on MFP back in February after a relapse and round of steroids brought me to 200 lbs,
decided to quit smoking, and start moving...
I am now almost fifty pounds lighter and I walk or run(jog) almost every day.
The more I do the better I feel.0 -
Hello,
I wanted to mention that the website Everyday Health has a lot of information and tips for dealing with MS, including what foods might help. Here's the website - http://www.everydayhealth.com/multiple-sclerosis-basics.aspx - and if you sign up for their emails, they'll send you articles and tips. Only sign up for the emails that you REALLY want though (or use a non-primary e-mail address), because they will send at least one e-mail every day.
Best to all of you.0 -
If you look up on the community tab, you are currently under message boards, click on groups right next to it and type "Multiple Sclerosis" a bunch of groups pop up, hopefully that helps you with your search0
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I am going through the same thing except my legs only feel weird in the morning when I wake up, Sometimes during the day not much, and If I stay outside too long walking I become fatigue feeling like I am going to passout, First sign happen this summer I passed out and both of my legs loss all feeling and I couldn't walk. I had a Normal mri with contrast but still seeing double in my right eye and I will be making an appointment to see a second neurologist, My regular doctor put in another referral0
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I have been adding people who mention having it as I do too!0
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