Daily Dealing
I was recently diagnosed with MS, realize now I have been dealing with it for a years but have called it other things. I am not in remission and I can surely tell. I have major numbness and pain in hands, feet, legs, chest or a combination of some or all. Hands are always to some degree numb and hurting. I have found that I feel better the later I stay awake at night. I have also found that I begin to feel better when I spend a few hrs doing simple hobby projects that require enough thought to be engaging, but not enough physical accuracy to get frustrating. BUT I can’t do that at work, so can anyone offer suggestions, personal methods, hints, best practices or tricks for dealing with the symptoms to help those of us that are still relatively new at this. I have to keep my job, that means I have to function, even when I can’t feel things in my hands. Thanks
Wes Will,
The first thing is to get on an FDA approved medication (such as Avonex, Betaseron, Copaxone, Tsyabri, Rebif, etc). You'll need to find a doctor with experience in MS. Talk to him about your choices (perhaps do some research beforehand) - but get on a medication soon.
Second, pace yourself. You want to notice when you feel fatigued and try to plan your day around it. Most people with MS find fatigue their #1 complaint. Being able to rest when you can will recharge you to work on whatever needs to get done during your day.
Consider finding an Occupational Therapist or Physical Therapist who can work with you regarding your hands. Ask your doctor for recommendations, and check with your insurance company as well for coverage. I've found in the past that a good OT and PT help sus with our daily living, and are a crucial part of our MS team.
The National Multiple Sclerosis Society (www.nmss.org) is a good place to ask any other questions you may have. They also offer support groups and educational seminars. MultipleSclerosis.net offers a wealth of information as well. Communities such as this one help us feel less alone and filled with useful information.
I hope this helps, and I wish you the best of luck and good health. Please keep us posted.
Cathy
I'm on the meds and something to help with numbness and pain. I have a GREAT doctor that is helping and staying in contact with me, including calling me after office hours.
I'm working the pacing myself part. I was always the poster child for ADHD and have2 - 14yr olds that have enjoyed having a very active dad, but that has been severely impacted. I am my own worst enemy most days because I don't fully know or accept my current limitation. It is good to know it is NOT just me. These groups are helping.
I will talk with the Dr about an OT or PT to help. I have a PT that goes to our church that has already offered to help.
I have joined several of the MS groups and am trying to weed through the massive amounts of information. The hardest part is trying to find groups that have positive information. A lot of what I have found so far is people complaining about having MS but not trying to overcome MS. Hence this forum post, Daily Dealing. I have been dealing with MS for years, in ignorance because I did not know what I had. Now I want to move forward and learn how to deal with this and still be a Husband, Father, Man and function in my daily activities at work and in life. I don’t want to feel like life is over, which is the frame of mind I have noticed, both online and the actual people I have met, have fallen into. Each day I want to go to sleep having felt like I am dealing with or overcoming MS not giving in to it.
You are doing a fabulous job, Wes Will. You know there will always be doom and gloom people with negative attitudes. You are right - you need to weed out those groups and find the good ones. I've left many groups, over the years, because their attitudes were toxic to me. Keep searching - the good ones are out there!
I'm so glad you love your doctor - that is everything!
If you're finding you're having trouble, or any depression, perhaps you could seek some counseling. Therapy, and perhaps a medication, may help ease your load. It's common to have depression with MS, and taking the edge off of any uneasiness you have (like many others with MS do) may be beneficial for you. I'm not a medical person; I go to therapy and it's helped tremendously. No shame in helping yourself toward wellness. (Someone once told me that and he was right)
Keep us posted, and good luck in your journey.
Best,
CathyI am a long-termer, diagnosed in 1988 . The above comments would all have helpful ideas in them for 'newbies'.
