Multiple Sclerosis,Struggling with exercize due to pain. Need Ideas!!

Hello Everyone!

       &nb sp;        I am a 45 yr old who struggles with MS and im having a hard time exersizing due to pain issues,and sleep issues. I am by nature a night owl,but try to get down at a reasonable time.Also I keep a wood burning stove going all night, so thats an interruption!!lol But I am having trouble getting motivated to get my butt up early and go walking like I want to (in the evening and AM),and im napping during the day to catch up on lost sleep,(which you can never do!)Eating at weird times,not on a schedule,and really struggling with the pain! I get a limited amount of pain meds and take blood presssure meds and Cymbalta for major Depression. What a mess I am!!lol I try to stay positive and in a good humor. I am in a very poor class,no health insurance, no income,and waiting on SSI for 5 yrs. My case is now in the Fed . court waiting to be heard. I live on my sons 10 acres of beautiful land in Ky., and he pays the elec.,water ,phone,etc. so I have a roof over my head.No rent , trailer is paid for.Thank god!  Is there anyone else on the site who has MS, or similar struggles with pain, scheduling,sleep,etc.???    I need some ideas,   Thank you so much for taking the time to read this,,and thx in advance for any support. Maybe in the future I can start a forum for MS sufferers who are trying to lose weight and stay healthy!  Good Idea!  I have been reading alot of the forums and havent seen any other sufferers of MS, and I really would like some freinds to add to my list,but that will happen I guess . Im kinda new to the site,2 weeks, and have tried to jump in and communicate . Sorry this is so long,,lol , but hey any help is great!!!!              &nb sp;    Thx!   Lynn

I've found the Sit and be Fit videos helpful when my arthritis is acting up

Sit and be Fit

Hi Lynn,

I'm 51 and also have MS with ALOT of chronic pain...complicated by an auto accident.  I certainly know how hard it is to get motivated to exercise!  Walking used to be so enjoyable...I loved it!  Now it's more like torture on my bad days :-(   I've gotten myself a recumbent bike & a treadmill so I can exercise inside. This way I can control the temp & if I only feel like doing 15 minutes of riding/walking I can get in several short workouts during the day. (or night...also a nightowl!)  Also, I don't have to worry about walking too far from the house & wondering if I'm going to make it back!

I don't take any pain pills or anti-depressants....I have tried MANY over the years & do not tolerate them well. I feel much worse when I'm on them!  I take Ativan which is an anti-anxiety medication...it calms me down when the pain reaches the unbearable point & helps with the muscle spasms (a little).

Sleeping is a huge problem for me,too!  The pain makes it impossible to get comfortable...my sleeping habits are horrible!!  I recently started taking over the counter Benadryl...it makes me sleepy & also helps with the strange itching problem I have due to the MS. I'm not sure about taking Benadryl with your other meds though.

I wish I had something helpful to pass along to you...I have tried so many different things: exercise programs, physical therapy, medications, different diet plans, acupuncture, chiropractic, chinese herbs, vitamins, supplements, etc....and haven't found anything that has really helped. The best thing for me is to eat healthy & try to be as active as my aching body will allow. Keeping a positive attitude is important...as is trying to limit stress.

I'm scheduled for shoulder surgery next week and am terrified. Afraid my MS will kick in even worse from the stress...and am not sure how I'm going to handle the post-op pain. My surgeon highly recommends I NOT try to go without pain meds....but they really do make me feel sick. It's gonna be a long recovery that I'm not looking forward to...but hopfully it will elieminate at least one source of pain I'm having.

Sorry I haven't offered you anything really helpful (especially for how long this post is! lol)....but I can relate to your situation & if you ever want to talk feel free to email me.

Sue

A couple of links that might be helpful to you....

MS World-Message Boards: (Exchange info with others with MS) http://www.msworld.org/html/message_boards.ht m

National MS Society: (Search for your local chapter & what resources/support they have to offer in your area) http://www.nationalmssociety.org/

Thank you so much Calisue, for your help,and links. It is greatly appreciated. I guess I just need another kick start to get me going,its not that Im unintelligent ,I guess its cuz I havent got  a good sounding board,and just dealing with it makes your mind numb or something!!lol  Have a Great Holiday!!

       &nb sp;               &nb sp;               &nb sp;    Lynn.

Hi Lynn!

I don't have MS, but I do have MG (myasthenia gravis). It's a little different, but it is also an autoimmune disorder.  I would suggest getting as much Vitamin D as possible (through sunlight or supplements or milk with Vit D added). It is supposed to help with autoimmune disorders (according to Dr. Oz from the Oprah show.) In home walking videos are good because you don't leave home. You don't have to use the bungy cord thing that comes with it. It's also important to stretch.

I am fortunate enough to have fought my illness tooth and nail, and can now do taekwondo. I recently found out that I have rheumatoid arthritis as well. I don't have a lot of pain, but instead I have severe fatigue and stiffness. I have to stop and rest quite a bit during my taekwondo class, but that's ok. I just rest and then keep going. I'm also swimming, but if you don't have the means to pay for a health club, that's probably out for you.

I get very frustrated at the illness; I know you can relate. And people don't understand. "just get up and do it" is easier said than done. We should form a group for people with muscle diseases or autoimmune diseases. The problems that we deal with are very similar. Sorry, I have no suggestions about sleep. That is not a problem that I have. Would like to add you as a friend if that's ok.

Long time on the SSI. My husband's only took 2.5 years. Good luck with that. The good thing is that when you get it, they have to back-pay you!

Sara

Happy New Year Lynn!  It looks like your desire for new friends has been fulfilled through this weight loss site. 

I also just joined this group due to a dear friend of mine, Molly.  She's been a huge blessing and an incredible source of humor, motivation and good ideas.   She has just broken below 200 pounds and has done it all the hard way.  You might look for her postings.

My history with MS is a long one, over 25 years.  I've learned a few things that I'm happy to share with you, understanding that each of our bodies are different and what works for one may not work for another.  With that said, one of the givens seems to be the difficulty sleeping.  I struggled with that for years and it just seemed to get worse.  The other,  is the weird pains that we get.  No one can see it and unless our legs aren't working, it just seems like we're lazy, or trying to get attention or whatever.  

The pain is real.  I've also tried all the common meds and even stayed on some for a full year.   They took all my ambition away and made me into a zombie.  I was in a haze even while I worked, drove and took care of a household.  Not good.  The thing that I went back to, with my doctor's consent, was Ibuprofen ( Advil).  It cuts the edge and makes life much more bearable.   You have to talk to your doc. but I take it 3 times a day.  I try to keep it at 600 - 800mg each time.  You have to have blood tests done every 6 mo. to watch your liver  and kidneys.   I also take 5 mg of Zolpidem which is the generic for (can't remember right now but they advertise it on TV) for sleep.  It works really well and there's no hang over the next day.   As for depression, everyone is different and you just have to try various drugs to get the right one.  I take Effexor.   Be sure and check anything that you try as some have a side effect of weight gain.   

I've found that the fewer heavy meds that I'm on, the better. 

As far as getting your fanny up, shoes on and out for a walk, its the toughest thing as we just want to sit.   I have to look at friends in wheelchairs and ask myself, if I'm able to have an influence, will I do what I can to keep myself out of that life?   It usually gets my shoes on and out the door or on the exercise machine.   Remember that muscle has memory and when you start using them, they build up again.  Not only does it help our weight and legs but it also helps to keep our head in a good place and all our inards working better.

Well, I thinks this is enough of my story for now.   Please feel free to put me on you friends list if you'd like to.  I'd enjoy hearing from you too.  

Lynn, may the Lord bless us and give us His hope,

Sooozine 

Hi Lynn!

I am 48 and have had m.s. for 30 yrs lol.. mild relapsing-remitting thank goodness.

I have tried taking the Rebif...allergic lol..talk about sick! Right now I take ibuprofen

twice a day at 800 mg...but I also take a lot of supplements lol...

Mornings: multivitamin, vit c, allergy pill, acid reducer,

evenings: vit e,allergy pill, acid reducer, b-complex, potassium,

I also take melatonin (an herbal sleep aid) when I have spells of insomnia.

I also drink herbal teas during the day...chamomile (helps me relax and helps the darn constipation!) and chamomile/lavender at bedtime to help me sleep.

I have a recumbant tricycle for when the weather in Iowa is decent and an exercise bike that I bought at a garage sale for when the weather doesnt want to cooperate.

Last May I went for my every 2 year MRI and there was NO activity!! First time in 20 years that had happened! Neurologist said "what ever your doing keep it up"

I have recently started to do some pilates to try to limber up my muscles and help with the aches and pains and maybe loose the weight I gained when I quit smoking! Over 40 lbs! I make sure to take Ibuprofen  just before I exercise! 

 I just found this forum so I am hoping that it will help with the motivation issue! Thankfully hubby understands when I say "I just don't feel like it!"

Hey everyone!!

I am 35 diagnosed with MS at 24.  Thank God I am doing pretty well now, my first 5 years I was having 5-6 attacks a year.  I haven't had a "bad" one for years.

I would suggest ding simple excercises that a PT can give you. You know simple leg arm movements.  Anything is better than nothing!  Also I take Calcium Vitamin D and C supplements.  My neuro had me take 30,000mg Vitamin D supplements for a few months becuase it was so low!!  New studies show that people with MS have low Vit D but of course don't know why (how many times have we heard about that with this disease!).

I second forming a group.  I am 5 10 154 and want to get to 145.  It is a vanity thing but also eating better and excersing has given me so much more energy.  Also after having a child, solumedrol, prednisone, ect the body is just different.

I am also on rebif

Peace and love,

Jenny

Hi Everyone :)

I am 43 and was finally diagnosed with MS 4 years ago.  Thankfully, I have "mild" MS, so I am on Copaxone, seizure meds for my weird MS symptoms, and my doc immediately put me on lexapro for depression.  I have been doing great with no additional relapses since I began treatment, and my follow up MRI showed no new leisions!  Thankfully, I am not in constant pain, but I do have alot of "restless leg syndrome" and numbness that drives me nuts.

Like y'all, I have come to this community to try to get back some control of my body.  I let myself go for a while with all of the new worries, and since I have never really dieted before, I'm hoping this website will be a good guide.

I also read some MS research on the value of Vitamin D.  I started taking nutrition shakes (www.reliv.com) and through their advice also took the supplements with extra antioxidants, etc. for fighting disease.  I noticed that these shakes did a great job of helping with fatigue, alertness, and general wellness.  Unfortunately, the shakes are not covered by my health insurance, and for the time being, I have stopped taking them.  I can definitely tell the difference and really should get back on them.  Isn't it strange that the insurance will pay for these MS therapies, but not pay for the stuff that actually makes us feel better?

Anyway I am very happy to have found this group!  I hope you are all still doing well and that we can continue to encourage each other!