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  • Caza
    MS has become more of a daily worry for me and, after 20 quite symptom free years, I feel like i'm being dragged down by the nasty beast. I've been feeling a lot of leg pain the past couple days, making my walking gait very tentative and off kilter. The pain is there whether I am moving about or lying still. It's a deep constant ache that feels like it's right inside my bones and both legs are effected. I'm hoping someone here may have some advice? Magical cure? Wants to grumble about pain with me? :)
  • Kimberly
     BOY do I know that pain!!! Im so sorry that you have it, alot of professionals love to say..there is no pain with MS..but we know diffrent, right? Sometimes I want to just go sit on a railroad track!!!  YOU are not alone my friend. Im right there with you! xoxo
  • Tina13
    the pain is real have you ever gotten the medical canibous food-  pain free up to six hours and the function and moblitiy improves you don't have to smoke it-you don't end up high it just makes a world of difference-YOU can just live
  • Avatar
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  • Ravi
    Caza - I am usually only a casual obserber of posts, but yours hit me right in the gut.  After @ 5 years of "no new symptoms" for the past several weeks I am getting the same leg pain that you describe.  I have also started limping more and initially told people I twisted my ankle (MS is essentially mine and my family's secret - unfortunately it initially ended a very active career for me and I fear it will happen again).  Telling people I twisted my ankle was a mistake because after a few weeks they want to know why I am not healing?  I used to run marathons and participate in triatholons now suddenly I struggle to jog/walk a few miles! 
    1.  Grumbling:  So yes, first off I want to grumble....this sucks!!  I hate MS more than I can possibly put in words, but at the same time I know it could be much worse and unfortunately is for many others.
    2. Advice: Stretching!  It seems to work for me.  I will have my wife or daughter help stretch my leg straight up in the air and slowly bring toward my chest.  I am not sure why but I think it helps loosen up the "spasticity of the muscle".  Muscle fatigue is also a big factor.  The less I walk, stand, or "try" to jog the less spacticity and pain I have.  I have tried to swim more but it's difficult with work and two busy sports-minded kids!  But, try the stretching I am hoping it will help you.
  • shorty32982
    The warmness so early in the year is killing me.  I feel like hell and just want to able to walk.
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  • joynerthedad
    MS has become more of a daily worry for me and, after 20 quite symptom free years, I feel like i'm being dragged down by the nasty beast. I've been feeling a lot of leg pain the past couple days, making my walking gait very tentative and off kilter. The pain is there whether I am moving about or lying still. It's a deep constant ache that feels like it's right inside my bones and both legs are effected. I'm hoping someone here may have some advice? Magical cure? Wants to grumble about pain with me? :)
    Oh no.  Leg pain has become a constant with me.  It is a deep ache.  I am afraid I have no miracle cure to share.  After a number of years of just accepting it, I did have to turn to modern science for help.  I believe the ache I have and the ache you are describing is what they call  muscular / skeletal pain?  Not quite sure if that is correct, but it comes from muscles in the legs not quite functioning properly and over time it does effect the skeletal system....putting more pressure here...having to adjust your gait there.  I do some self monitoring on the pain medication, only using it when needed.  I have found taking it at bedtime helps me with a restful nights sleep.  A good night's sleep is good for all the symptoms...meds not my first choice...but the benefits I really appreciate.
  • Caza
    The weather has been lovely here too! I sat yesterday and watched my boys play street hockey and longed to be able to jump up and join in. I did try but I wound up using the hockey stick more like a cane and kept worrying I would topple over! I soon headed back to the porch and took up role of cheering squad! I miss the long walks too, and the spontaneity spring days bring. Wishing you brighter days ahead... :)
  • CFL
    shorty32982, I couldn't agree  with you more.    I love New England and its four seasons but MS and the heat are not friends.  I had two fans on last night just so I might sleep. A little cooler today.  CFL
  • shorty32982
    I feel so bad for my kids they want to go outside an play and I don't.  Trying not to let MS punish my children is so hard.
  • joynerthedad
    I feel so bad for my kids they want to go outside an play and I don't.  Trying not to let MS punish my children is so hard.
    Hey shorty.  I am a big fan of talking about kids.  MS punishing your children?  I don't think so.  I am sure there are a number of things you do for your children and family.  Children are funny and believe it or not, adjust to situations quite well.  You may find a great deal of strength within them.  You will find a way...one that is good for you and your family.
  • Caza
    Anon - Sorry about the the shot to the gut :) I'm so glad you took the time to share your story and frustrations. It's good to relate to others in this crazy MS club we find ourselves reluctantly members of. It sounds like you have fought some nasty battles in your career life and I hope your current work place can be more accepting and understanding of your challenges. I imagine secrecy is not easy at all. I've recently enrolled in pilates and yoga classes and, like you, have found stretching to be helpful in easing the pain and cramps etc. My husband is also a runner/triathlete and the other day I watched him return from a run, energetically bounding up the drive and jumping on his bike for part 2 of a workout. When he returned, I told him how much I wish I could join him on a run. He looked at me and we both burst out laughing... For years, he had tried to get me bitten by the triathlon bug and I had always insisted I was more than happy to be the water girl and supportive partner on the sidelines. Funny, the things we now long for that were once so taken for granted. Thanks for your support, suggestions and kind words. Wishing you all the best.. Caza
  • MSVee2011
    I have been reading everyone's comments and I can definitely relate to the leg pains.. I have noticed that the pain has been happening frequently. I'm a little confused about the changes I might experience with warm weather. I seem to have issues with any exposure to dramatic change in temperature. Right now the COLD weather has been my enemy. Medical canibous sounds a lot more NATURAL than all of the prescriptions they have been trying to introduce me too. I was diagnosed 11 months ago...so I am still struggling with the MS roller coaster... I really wish I could get off
  • DollyBMsFit
    I experienced severe deep leg pain for over two years prior to MS diagnosis 6 months ago. I read about large doses of Vitamin D/Calcium & Magnesium and asked my MS specialist about it.  She prescribed 2000 IU of Vitamin D with calcium/magnesium 4 months ago.  I no longer have the deep pain I used to experience when sitting at my desk for long periods of time.  I also changed my exercise routine - no more impact activities such as running or walking.  I do 45-60 minutes of cardio 6 days a week on elliptical trainer, stationary bicycle or KangooJumps rebounders.  I also perform flexibility work 4-5 days a week.  With the combination of elimination of impact activities for cardio and taking high doses of Vitamin D with calcium/magnesium, my leg pain has all but subsided.
  • shorty32982
    Thank You.  My 8 year old reminds me that we use to take a walk every friday.  He is not happy I can not do it, I have tried then found myself on the couch for 2 days.  Then I feel bad the baby will never get to do those things with me. 
  • Caza
    Kimberly - Thank you for your words of support. Isn't the pain horrid!!??!! GRRRR!
    Fortunately, there is a great team of docs/nurses at the MS clinic here (Hamilton, ON, Canada) and I was able to talk to someone and make a plan. I'm taking a big 'ol dose of Advil over the weekend and then I'll go to the clinic on Monday and explore other treatments if necessary. The Advil is not doing a heck of a lot right now, although my headache that I was ignoring is now gone :)

    Anon - Yes! Thanks for reminding us of that option for pain control.

    MSVee2011 - I also struggle with pain in the cold weather. When my legs get chilled, I feel like they are painfully thawing. I also hold the more natural therapies dear to my heart. I have never taken any modifying meds for my MS although, as things progress, I'm becomming more open to the idea. I'm scared of the side effects both short and long term.

    Joynerthedad - I actually had a great sleep last night and woke up and felt relatively pain free for about an hour. It's just starting to settle back in again now. But, I think you're right...rest, rest and more rest! Thanks :)

    shorty32982 - Oh my goodness...I can soooo relate to what you're saying about kids. My boys are now 9 and 13 and I am always concerned about how my MS will affect their lives. I'm get so tired of saying, "sorry guys, I'm not up to that today".  Fortunately, they have a super active father and he picks up the slack, which then leaves me feeling a little left out. I have such mixed emotions when I see the 3 of them run off to the park to climb and play soccer, or they all head out for some mountain biking. Of course, I'm so happy to have them bond with their dad and enjoy sports and the outdoors but there is a little, ugly jealous piece in me that I find hard to deal with. I have to remind myself that I too give them so very much and that we do have our own rich relationships...it's just different.  We are building strong, caring and compassionate kids...something to always remember :)

  • joynerthedad
    Thank You.  My 8 year old reminds me that we use to take a walk every friday.  He is not happy I can not do it, I have tried then found myself on the couch for 2 days.  Then I feel bad the baby will never get to do those things with me. 
    I have no idea what to say other than as a father, the thought of that must be heart wrenching.  I do not know your situation, but have you ever considered a middle road?  Maybe there is something that can assist you in your walk, maybe a motorized chair, that would not tire you out so much and you could still spend time with them outside?  I am sorry, just with kids, I am all about finding a way.
  • MSVee2011
    As a mother of 4 Diagnosed with MS... I can relate to everyone's struggle about the worry of our children and ourselves. My kids are 22, 18, 13, and my baby just turned 10... My oldest is Junior in college, my second is a senior in high school, and my third isn a senior in middle school. That means that I have several upcoming graduations and my goal since the diagnosis is that I want to be able to WALK to their graduation.... Not just the High school but all of their college graduations as well.... Today I attended my first MS family event with my girls and honestly.... I feel petrified when I see the other parents with MS using their walkers and wheelchairs... I am so scared of not being able to be there for my kids and to not be able continue being the dedicated and strong mother that they are use too.... The pain, emotional and physical drain is unexplainable sometimes and the people that love and care for us want to understand but realistically they can't... The doctors sometimes pretend they understand or they brush it off and make it as if it is due to the added on mental strain.... Doctors can study all about MS and absorb all of the book knowledge but.... The real deal cannot be absorbed in any medical book... Being able to read or to vent some feelings about this intruding monster is so supportive .... I want to thank everyone for sharing their story's and information.
  • shorty32982
    I guess a lot is my own stubborness, I will be 30 next week and they want to give me a walker, I use my stroller.  A shower chair to reduce falling in the shower which I do.  A wheel chair for summer days when I barley can walk.  I am dreading next thursday and becoming 30 and already having these things offered to me that my grandmother who is 83 is just getting.  I know it might be better for me kids but I am having issues thinking they have to worry about their mom getting around when I am so young.  Wow the tears are rolling off my check as I write this... I guess I have not put some of these feeling out there.  I am so happy I finally found people that understand my pain I feel I have been alone for a long time.  The hardest part is when the 8 year old looks at the one year old and says its your fault that mom is this bad.  Trying to explain having a baby with MS is not off the wall and it is not the babies fault. 

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