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As someone very new to this whole MS thing, does anyone have ANY suggestions for the fatigue? I can relate to all the other symptoms and have been dealing with them (some days better than others) but the fatigue is a killer. I am working and everyday I have to force myself up and to get moving but it is difficult and I pay dearly on my days off. Yesterday I think I was awake all of 8 hours (and these hours were not consecutive). At what point does one stop working? As anyone with this knows how you feel changes daily and if you are working, you don't have the luxury of taking care of yourself when you need to. I *wish* I could stay home when it is really bad but employers tend to lose patience and sympathy for you if you are constantly calling in sick (not to mention loss in pay). So I guess I have two questions:
How do YOU deal with the fatigue?
When did you decide that you couldn't work anymore?
Thanks!
Jill
Ritalin is commonly prescribed for the fatigue associated with MS. Many docs have found it can also help with the depression that can accompany MS.
off the top of my head, I would have to say staying hydrated is important. Water is very refreshing.( of course you might have to deal with running to pee more often
Trying to have a consistant schedule is important...regular sleep times and wakening times. Regular meal times.
No sitting too long in one position, frequently stretching, little mini breaks. When I did work, just walking around a couple of minutes helped. Not getting too focused on one thing...I guess being able to multitask instead of grinding away at only one thing, keeps your mind more alert I do believe. Deep breathing type exercises and even just rolling your head around and relieving stress by rolling your shoulders around might help. I feel tired easier by just sitting, instead a keeping on a slow but steady rate when 'working'.
hope that might help some
( i'm not working currently ..just by choice not necessity)
Ritalin is commonly prescribed for the fatigue associated with MS. Many docs have found it can also help with the depression that can accompany MS.
EEK! Is this sorta like speed? I remember in high school kids selling their Ritalin to others. I have heard adderall is also prescribed. I get really jittery after drinking coffee so I cannot imagine what this may feel like.
Yes, I see this alot, both on forums and in general day to day discussion. It is usually the position of those that have not experienced a particular illness at close hand that have the most to say about what everyone else should be doing.
My position on these things has always been that people need to follow their own path and that they should be supported to make whatever informed choices they are able, to deal with their disease as best they can. It's very easy to be anti big pharma and think your MD is an uninformed pawn if you've never had to go to them with a serious illness. When you do see the ramifications and read up on these things and see the statistics and projected outcomes, I know very few people that are willing to risk soley relying on the unsubstantiated claims of the alternative health industry even if they've never been a big fan of big pharma. It's a rock and a hard place situation as far as I can see.
I am all for utilizing and exploring as many alternate therapies as a person feels is appropriate for them, and using those tools in adjunct to traditional medicines but not at the expense of their health. And the fact remains that there are usually no controlled studies of the efficacy of alternative medicine. When it comes to disease people need quality statistics and quality information in order to choose the correct path for them.
I do have MS, I have a young daughter and a wife, I would not put the hands of my health in unstudied alternative medicines. MS is a progressive disease and I need to hold it at bay as long as I humanly can, therefore I am using Copaxone.
I don't know much about MS, however I have been touched by it. My best friends mother has it. From what I have seen, its has a slow progression-at least with my friend's mother. When I met my friend in college her mother could still walk, although very slowly. and she could still drive. Now, 6 yrs later, she cannot walk, and has no mobility. She cannot hold up her own head. She can still talk, eat, but has no mobility. She has a pain pump as well. Whatever the case I recommend learning as much as you can and helping. Some people tend to act like it does not exist but it does. My friend is one of the only people in her family that tries to help her mother. We have held garage sales to help raise money for her. She has to get home care now for she cannot bathe herself. It takes everyone joining together and trying to help.
the last study pre DMD's (disease modifing drugs) showed that 70% of MS patients will remain able to walk (with the possibility of assistive devices like a walker or cane)
the disease is different for everyone. I know several others with MS that have lightining fast progression while I have extremly slow progresison.
some have the fatigue, while others do not, some have vision problems while others do not. It is very very different for each person.
Just because you have not heard of it does not mean it does not happen!
I've had many emails from people who tell me that "people don't die from MS".
Well, apparently they do, according to Patricia McDonald, executive director of the Michigan Chapter of the National Multiple Sclerosis Society: "less than one percent of the estimated 350,000 people who have the disease in the United States die from it.
Fewer than 10 percent die from complications of multiple sclerosis...."
I think this too. I also think that the advent of the birth control pill is what's increasing the numbers of women who are being affected and diagnosed.
don't forget, there are men with MS as well, there are half as many as the ladys with MS, but we do exist.
lol... Just found this thread so I went though and awnsered posts I found interesting (sorry for the long line of replys)
Let me tell you my story, it is quite short, but worth the tale.
I am now 27 and was diagnosed earlier this year. Thinking back I can remember these types of symptoms since I was 15. when my daughter was born I was in the midst of my first full blown flare, although the doctors at the time thought it only to be a pinched nerve. My entire left leg was numb and tingly. I had what I now know is "MS gait" with foot drop. It was very hard to move around and get to where I was going without getting extremely tired from the work of pulling my "dead" leg around with me. The problem cleared up about a month later, I never thought anything other than a pinched nerve. Well around thanksgiving last year I woke up with my right leg this time, my right arm and the right side of my face numb and tingly. Same feeling as when my left leg was going weird. I went to the doc and that is where the fun began. I had a whole battery of tests, MRI, spinal tap, vision tests, blood tests, cardio tests and what not. What they found, bands in the spinal fluid, 5 nondescript lesions, and an answer. I was diagnosed and was told to study up on the treatments available. A month after the second flare It went away like the first. the only thing left is my right hand feels like there is a very thin film of plastic when I touch things. My fatigue cleared up, and everything was peachy. I was diagnosed with RRMS (relapsing remitting MS) which most are in the beginning, and progress to SPMS (secondary progressive MS) I am stable, and non progressive at this moment. I have no fatigue, no permanent disability, and very little left over from my last attacks. I do suffer cognitive problems here and there which is common (frustration, and forgetfully ness with short term memory) but it clears like someone turned on a light switch, then comes back again slowly over a few months time. I decided to go on treatment because of my 2 year old daughter and my wife. I do not want to risk my health without it. Anything I can do to slow this disease I will give it a go. Copaxone was my treatment of choice, and man what a blessing it is. Very easy to take (once per day injectable) and it is not as bad as you would think having to give yourself a shot everyday. It is the DMD with the least side effects, usually burning for 15 min. around the injection site and a HUGE lump. Whereas the others have Depression, and flu like symptoms for 24-48 hours afterwords.
ahhh, MS...it was my christmas present a few yrs ago. I call it my gift that keeps on giving...just don't know when or where kinda like Let's make a Deal...what IS behind curtain #2
You go Noahma!! Glad you have a treatment that you feel is working for you. That is the oddest thing about MS, no one is the same in how it affects one, but you have to choose what and how you deal with it individually...
ahhh, MS...it was my christmas present a few yrs ago. I call it my gift that keeps on giving...just don't know when or where kinda like Let's make a Deal...what IS behind curtain #2
You go Noahma!! Glad you have a treatment that you feel is working for you. That is the oddest thing about MS, no one is the same in how it affects one, but you have to choose what and how you deal with it individually...
we're kicking MS in the bootie
ohh defiantly. One other sign that MS is different for everyone. While I hear that heat sensitivity is very common, I have cold sensitivity, I get very stiff even in the slightest of cold. heat is still my friend.
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