Tag Archives: MultipleSclerosis.net

I Better Do It Now Before I Can’t—Community Thoughts!

Posted on by
Reply

Recently, one of our community experts wrote an article about the struggle to find a balance between taking advantage of fleeting, “good” days with MS, and potentially overworking your body to the point of putting yourself out of commission even longer.  We received an outpouring of responses from you in the community, ranging from “OMG! Me too!” to personal stories of finding your own balancing point.  Here are some the things our community had to say:

Feeling the Pressure of the Balancing Act

“Oh boy this is the story of my life!! I get that one morning that I feel good (not great) and I am on a mission. By the afternoon, I am starting to pay for it. Factor in the heat or cold, then it is a whole new story!”

“I do the same darn thing…will I ever learn? Those few and far between good days are so great and we can’t help but to take advantage of them. It’s like drinking too much and being surprised we have a hangover. But jeez, we pay for doing something not that fun, like vacuuming!”

“I have a ridiculously difficult time with my “time-to-stop” meter; I seem to operate in an all or nothing mode…if I can remember what “all” entailed in the first place!”

“Perfect timing for me to read this, “so true to my life” article. I’m having one of my “good” days and trying to accomplish as much as I can while I can. Funny how our minds can whirl with so much activity, but our bodies don’t cooperate”

Trying to Take Things in Moderation

“This describes me for sure. I feel so good about myself on those “good” days because I get so much done, but as we well know, another “good” day is always followed by “bad” days. So if things get done, fine. If they don’t get done, well that is fine too. This is one of those things you just have to accept when living with MS”

“I’ve had to train myself to “make hay while the sun shines” and (try) to accept that sometimes good enough is…good enough. I still struggle with overextending myself though”

“This is so true. You feel good and get started with one thing that turns into more as you go and always over do it. I want to do things like I used too, then the monster inside me kicks my butt down for days! We all do what we can on our good days”

“Depends on what I do—but one strenuous day I am out of commission at least the next day. Try to do what I can and after more than 20+ years with this beast, I have finally learned to listen to my body and stop most times when it gets to be too much”

Managing the Unpredictability of Life with MS

“Hardest thing for me is to figure out exactly how much I can do each day and not lose my tomorrow. One day I can accomplish a lot, but another day those tasks will put me down for a day or two. Thankful for my good days, but I HATE the inconsistencies of MS”

“I get so happy and excited when I feel quasi-normal. I try and do as much as I can. I do this constantly, then end up unable to move for a couple of days. Just when I feel I am understanding a rhythm to this truly wacky disease, it throws me for a loop. The learning curve is a slippery slope”

We were so overwhelmed by your great responses, and it’s clear that you are not alone in your battle to manage taking advantage of rare good days, while still taking care of yourself to prevent further setbacks.  Let us know how you manage this balance, or tell us about any of your experiences!

 

Share Button

Challenges With Showering When You Have MS

Posted on by
7

MS has a profound impact on so many aspects of the lives of those living with this condition, both big and small. While the “big” stuff is talked about more frequently, like treatments, doctor appointments, etc, the “little” stuff is just as important. One of the contributors at MultipleSclerosis.net, Devin Garlit, recently wrote an article about the unexpected perils of showering with MS. The simple act of showering can really be taken for granted when you don’t think about all of the factors involved. Between slippery surfaces, temperature changes, and even needing the energy to stand up for an extended period of time, showering with MS is not simple, nor easy. Our community members really identified with Devin’s sentiments, and they even shared their own thoughts and experiences with us. Here’s what they had to say:

Balancing in the shower is a real challenge

  • I can’t close my eyes to wash and rinse my hair unless I’m hanging on for dear life! I close my eyes, I fall! I started showering at night so that all I have to do is get ready for bed. A morning shower will destroy my entire day.
  • Washing my hair scares me. I get so dizzy.
  • Thank God for the three grab in my shower. Closing my eyes and looking up makes me dizzy, so I have to hold on.
  • Thank goodness for shower chairs, grab bars, and hand held shower heads. Still taking showers can be exhausting. I miss my baths. I loved laying and just soaking in the tub.
  • Balancing is such a challenge. I’m not glad that anyone else goes through it but I’m glad to know I’m not just loosing my mind. I thought it was just me. Even looking up at my son’s drone flying around in the sky I must find something to hang on to.
  • I do the swaying thing and usually fall backwards. I’m thankful for a small shower as when I fall back I end up just leaning on the wall.

I make adjustments to cope with the struggles of showering

  • I too have resorted to every other day and shower the night before if I have plans the next day. We adapt and adjust. Thank you again. Blessings and positive vibes to you.
  • MS made me give up baths 10 years ago and had to give up showers 3 years ago. Sponge baths are all I can manage. MS is an evil thief.
  • I’ve had to start showering at night and I hate it! I’ve also scalded myself when my brain fog had me turning off the cold water before the hot, ouch!
  • I started using a shower stool about 2 years ago because it helps. It’s hard to stand long enough to shower.
  • ‪ I have learned to work with this by only showing in early evening in case it increases the fatigue. Important not to shower unless someone else is home – safety first.
  • I sponge bathe, and shower once a week. Showering takes so much out of me, the heat, the slipperiness, the drying off. If I need to do something the next day, I shower the day before, and sponge bathe the next morning to freshen up.
  • I’ve got an anti-slip mat & grab bars in our P-shaped shower-bath.

‪Showering can be painful

  • Sometimes the water hurts or feels like it’s burning hot and it really not. When I take a shower I need 2 hours after to rest then I can get ready. I so hate MS.
  • It’s amazing that the water from a shower can actually be painful – people who don’t have MS just don’t understand.
  • It is very hard to explain to people why showers cause me pain and make me so tired that I often cancel plans and need to lay down.
  • I have burned my skin from not being able to feel how hot the water gets. I definitely can’t stand to shave my legs anymore or I will end up outside the shower on the floor.

‪Showering is exhausting

  • It is so frustrating to have to rest after a shower. I do use a shower chair, and luckily we have sliding shower doors. Though not supportive, it helps to have something else to steady yourself with other than just a shower curtain. I used to love soaking in a hot bath, but I haven’t been able to do that in years. I still have a shower every day, but it’s a struggle some times.
  • It’s exhausting! I’m considering a shower chair, but it’s hard to accept that I might need that. Balance, brain, fatigue – it’s hard to believe this is my reality.
  • I have issues with getting very weak with showers and nearly passing out before I am done, barely making it to the bed to lay down sometimes. I take lukewarm showers too. I also have repeated steps as well.
  • The shower has been an issue for me ever since I had my first child. It’s so frustrating having to rest after taking a shower. I feel like I spend my whole day resting between every little thing. I would shower at night but I sweat so much in my sleep it’s pointless.
  • Showering is an Olympic event…all the hurdles are exhausting.

What about you? Is showering a challenge? Do you have any tips to make it easier? Please, share your thoughts with us in the comments!

Share Button

What Webster Doesn’t Tell You About MS

Posted on by
2

facebook_share-14168

Webster’s Dictionary defines MS as: a disease of the nervous system that causes the gradual loss of muscle control. But for anyone experiencing multiple sclerosis on a daily basis, you know that’s only half the story. Our fantastic contributor, Stephanie, wrote an article about the “Lesser Known MS Evils” and the community loved it.

Here are some of the odd, unexpected symptoms our MS community experiences:

“It itches, it burns, it’s even numb!”

  • Itching
    • The itching has been the most annoying for me. It always happens in one part of my back, and doesn’t stop with scratching
    • My hands itch all the time. I always thought I just had dry skin!
    • I get itchy skin all over my face and even my eye lids!
  • Burning
    • My tongue has felt burnt since I was diagnosed a little over 2 years ago. 
    • The burning has been so bad
    • It literally feels like I’m burning. I get so hot and sweat just pours off me!
  • Numbness
    • I can never tell if I’m cold or hot!
    • Sometimes the left side of my face just decides to go numb.
    • I get so much numbness. You would think if it’s numb, it wouldn’t be able to hurt. But nope. I get both 

“It’s like my body forgets how to…”

  • Swallow…
    • Nothing like having to explain that my body “forgot” how to swallow
    • I had trouble swallowing when I first was diagnosed. Took me hours to finish dinner!
    • I regularly choke on my own spit.
    • Mine mainly happens with drinks, especially warm ones, and every so often I “choke” for no reason. It can be especially embarrassing at work
  • Talk…
    • Finally some validation for being a “Low Talker!” Now, when my husband says, “Why are you screaming at me?” I can justify it!
    • The cadence of my speech has definitely altered over the last 2 years.
    • My voice has been shot for years and I can’t seem to pronounce basic words anymore
  • Breathe…
    • Sometimes my body forgets if it was breathing in or out…not a good feeling, especially when I’m alone.
    • I definitely experience the breathing and swallowing issue, that is so painful and scary
  • Write…
    • Itching is one of my worst also my handwriting has gotten so bad.
    • Oh the handwriting. On bad days, my penmanship looks like a 5 year old attempting to write with their non-dominant hand.
  • Think…
  • The only way I can describe it is like a short-circuit feeling in your head.
  • My family has been the saying that I’m losing it. YES! That’s exactly how I feel!
  • It’s like pregnancy brain…but ALL THE TIME

How about you? Any strange symptoms you’ve experienced from your MS? Maybe ones you didn’t even know could be due to your MS? Share with us in the comments!

Share Button

You’re Hot and You’re Cold

Posted on by
Reply

There’s no doubt that weather can have a marked affect on MS symptoms, but the question we posed to the MS community is: which season is worse for you? The community was evenly split between the two seasons-–for some, the summer heat can be unbearable, but for others, the bitter chill of winter is enough to make you research human hibernation.

See what they had to say and which faction you below to:

Baby It’s Cold Outside

  • Everything is sensitive
    • Even a slight chill causes bone-shattering pain for me
    • Even temps of 50° can leave my feet blistered with frostbite. My shoes in winter are 2 sizes bigger, just to accommodate extra socks.
    • My skin feels like it’s covered in needles
  • Can’t control the spasms
    • Cold causes major muscle spasms in my feet, legs and back!
    • My legs hurt from muscle spasms and I’m even more clumsy because my hands are numb
    • Cold makes me spasm more
  • My muscles are stiff and painful
    • Just being outside for 10 minutes in the snow and I lock up like a mannequin in a window
    • The cold kills my hips
    • My cold body feels stiff and won’t move
    • My legs are in constant pain in the winter

It’s Getting Hot in Here

  • Humidity is my kryptonite
    • Humidity is like wearing cement boots
    • When you add humidity to heat, I’m a dishrag – just done for the day
    • Humidity is intolerable – like having an anchor tied around my waiste
  • Heat sucks the energy right out of me
    • It’s a struggle to walk; I feel weak like I’m melting.
    • It makes each foot feel like 200 pounds
    • I have such a hard time walking; I call it drunk legs
    • I wilt like a weed in the Sahara!
    • Heat makes my muscles like wet noodles
  • I can’t think straight
    • Heat shuts me down
    • Heat causes my brain to just go flat, like I’m in a steam fog
    • My brain just doesn’t work in the heat

Stuck in the Middle with You

  • Any extreme temperature is awful
    • Extreme temperatures, either way, affect me very badly
    • Heat makes me feel rubbery and the cold makes me walk like Frankenstein
    • I hate extremes of both – heat makes me fatigued, cold makes me numb
  • I thought I hated one, now I hate the other
    • I used to say that heat was my kryptonite. It still is, but now I find that any mildly extreme temperature whacks me out
    • It used to be just heat but last year the cold was very hard too
    • My MS hates the heat, but I hate the cold.

The general consensus amongst the community seemed to be that 65-70 degrees is the ideal temperature, so spring and autumn take preference. But how about you? Which camp do you fall in—hater of heat or contempt for cold? With the colder months approaching, here are some tips to ensure you’re prepared for the impending weather!

Share Button

Describing MS and its symptoms – Community Feedback

Posted on by
Reply

Living with an invisible illness like MS can be so difficult in so many ways. It is very common for people with MS to express frustration when it comes to getting others to understand how they are feeling and what they are going through. One of the contributors at MultipleSclerosis.net, Laura Kolczkowski, wrote an article about how she describes her MS symptoms, and a great number of our community members responded. Here’s what they had to say:

This is how I describe my symptoms

  • The MS hug I have feels like the cramp you get when you have a coughing fit and your stomach or ribs cramp up. Also it feels like Braxton Hicks contractions. I’ve lost the motor skills in my right hand. Writing with a pen has become nearly impossible. Those are a few descriptions I’ve used.
  • They keep asking why am I not smiling? I say, “well its hard to smile when it feels like your being boiled in oil, but I will try and do better.”
  • When doctors ask me how do you feel, I say, “Worse than yesterday, better than I will feel tomorrow.”
  • It’s very hard to explain. When asked, “how are you?” I usually say, “I’m doing okay.” Sometimes I say, “I’m doing well.” I wish I could say that with sincerity though! I just don’t want to seem like a downer all the time.
  • I get tired of hearing, “what do you mean you don’t feel so good? You look great.” I just smile and say thank you and stop talking. It’s just easier.
  • I say I am doing unreasonably well.

It’s really difficult to get people to understand

  • It’s so hard to get people who are around you to understand. There are times that I feel like just getting up and going to the bathroom is a chore. I’m sure people now see me as lazy. I was once not long ago full of energy and got stuff done. Now, doing the dishes or going for walks wipes me out for hours.
  • I don’t bother “describing MS & its symptoms” anymore.
  • I have been diagnosed with MS for over 9 years and my husband who has been with me all of that time still thinks I am faking the fatigue because some days I do have energy! He will never get it!
  • If you can communicate MS symptoms, how awful you feel, balance issues, fatigue etc., then people friends view us as “crippled”, less capable, and then THAT is our label. I am still looking for the happy middle ground. I am not a crippled person every day and that is the difficulty others have problems understanding, even some professionals.
  • My daughter in law had said to me, “if you just get up and try to exercise..” How could I when I couldn’t even walk? My son would say the same thing – there’s nothing wrong with you. I know somebody that has MS and they don’t look like that.
  • I don’t bother “describing MS & its symptoms” anymore.
  • When I am having a horrible flair and my speech and walking are affected, then people act like, “oh, poor baby”, but days that I “look” normal and sound normal, I hear, “well, you must be cured.”
  • ‪ I also don’t bother describing MS symptoms any more. I just say I’m fine. Most people aren’t interested.
  • Unless you look absolutely pathetic a lot of people do not think anything is wrong with you. But I will still have a smile on my face and keep on being positive despite having MS. I am not letting it beat me.
  • ‪I understand people think if they can’t see the problem you don’t have one. Lots of time my back hurts so bad I can’t stand it, but if they don’t see it they don’t understand.
  • I choose to not tell people that I’m sick.
  • I actually I have been accused of trying to be manipulative. It’s terrible.
  • There are some people in my family who, if I’m wearing a brace on my foot/leg, and they think I’m just wearing it to get attention.
  • This happens too many times. MS is truly invisible except to us.

What about you? Do people assume you are fine because you don’t “look” sick? How do you describe your MS symptoms to help people understand?

Share Button

The MS Hug – Our community shares their experiences

Posted on by
45

20130828

MS is associated with a whole host of common symptoms, like numbness and tingling, vision problems, weakness, cognitive deficits, among many others. But then there are symptoms that are less “text book,” and therefore not as well defined. One such symptom is the MS Hug. Cathy Chester, one of the contributors and patient advocates who writes regularly for MultipleSclerosis.net, wrote a wonderful article describing the MS hug, including her own personal experience with this frustrating symptom. It turns out that many of our community members also deal with the MS Hug on a regular basis, and many of them shared their thoughts with us in response to Cathy’s article. Here’s what our community had to say:

I didn’t know what an MS Hug was the first time I had one

  • I’ve had it happen a few times. The first time I went to the emergency room because I thought I was having a heart attack.
  • I had one LONG before I was diagnosed, after the birth of my child. I only recently read about it and realized what it actually was!
  • I have had two – one before I was diagnosed. I took an ambulance ride I thought I was having a heart attack. I then had one about a month ago. It hurt so badly it felt like my lungs were being squeezed.
  • I had my first MS attack when I was 12 weeks pregnant I thought I was having a heart attack couldn’t even lift my left arm up.
  • I’ve experienced the MS hug 3 times in 3 years. It’s a scary feeling. I felt like my entire body was in a vice. I don’t ever want to experience one again, not sure what brought it on. I thought I was having a heart attack, but thankfully that wasn’t the case.
  • I can’t believe this. I just recently, as in yesterday, started having this “hug” pain and wasn’t sure if I pulled a muscle or if it was another wonderful MS “thing” that I was experiencing…thank goodness I came across this.

I find ways to cope with an MS Hug

  • I do adaptive yoga for MS (Yoga Moves MS). They have taught us a banana stretch lying flat on our backs. I do this every day. I use to have the hugs several times a day, but now maybe once a month if at all.
  • I can feel it coming on, so I just have to relax and ride it out! It can take 48 hours or more.

I really struggle with MS Hugs

  • These are the worst ever hugs; I wish that they would never happen to us.
  • I get a quarter hug – just the front on one side – usually the left. That’s enough for me. I don’t like it at all!
  • It’s more like the MS python!
  • It’s the worse hug in the world. I don’t want another at all.
  • I get them sometimes, I think it’s like a big snake wrapping itself around me and squeezing tight! It isn’t very pleasant at all!
  • When I get over-tired, I get squeezed.
  • They are horrible – it’s painful and hard to breathe. Those are the kind of hugs I can do without!!!
  • I had one recently during a relapse…no fun!
  • I take Flexeril almost daily and it still hurts. I also was glad to come across this very thing a couple weeks ago too!
  • It isn’t fun at all, since you never know when it’s going to hit.
  • Hugs are supposed to be nice. This is more like a vice.
  • I call it the death grip because it felt like a boa constrictor was squeezing me for almost 3 days.

People who don’t have MS don’t understand what it’s like

  • I stopped telling anybody about the hugs and any other issues or pain. Nobody understands unless they have experienced it. My husband says, “just work through it!!” For everything. Really?
  • My husband doesn’t get it. When I am going through a 24 hour fatigue he says I get tired to I just don’t sleep like you do I just deal with it. Ugh! It’s just not worth an argument

Even my doctors don’t know what an MS hug is

  • The first MS hug I’ve ever had I thought it was a heart attack. The hospital checked me out and I was fine. My Neurologist said that it was a MS hug, like I would know this. The doctor at the hospital did not know this. Go figure.
  • My doctors don’t even know what it is, like usual with my symptoms they say its not related.
  • Had one of these 5 years ago and I was rushed to hospital with a suspected heart attack, as the medical staff had never heard of an MS Hug!

How about you? Have you ever had an MS Hug? What have you done to find relief? Share with us in the comments!

Share Button

Community Thoughts on Apologizing for MS

Posted on by
1

The impact of MS on a person’s every day life can be profound. There are good days, and then other days that are just downright terrible, for a whole host of reasons. One of the contributors at MultipleSclerosis.net, Nicole Lemelle, wrote an absolutely touching story about one of her particularly bad MS days where she had embarrassing trouble with incontinence, and her husband stood by her side. She shared: He asked me “Are you alright?” Totally embarrassed, I shook my head yes and continued to softly cry. He lifted me to my feet and walked me over to the toilet. I sat there while he helped me get my clothes off and then assisted me as I got into the bathtub. I ran the water and he got me towels. As I sat in the tub soaking he cleaned the urine off the floor. It was taking him a while as it had spread throughout the bathroom. I sat in the tub watching him. I started to think that he didn’t sign up for this. If I were only normal again this would have never happened. I just kept saying, “I‘m sorry. I‘m sorry. I‘m sorry.” From his hands and knees while crouching in urine, he looked at me and said, “Don’t ever apologize for having MS.”

Nicole’s story struck a chord with our community, and so many people reached out to share their thoughts and stories with us. Here is what they had to say (and to read Nicole’s full article, click here.)

It’s hard to deal with bad MS days

  • Reading anything from Nicole usually makes me cry, and today is of no exception. I’m stuck in bed going on a month now with my latest “perfect storm”. Ear infections in both ears, a sinus infection, and the recent diagnosis of Mono is simply too much to handle right now. I also got the bad news that I’m too sick to fly to Florida and see my son graduate from high school. MS has taken so much from me that I don’t recognize myself anymore.
  • ‪I wish we MS people could all just get together and have a good cry sometimes.
  • I feel so out of place at times.
  • I can sadly relate to every word! I don’t remember what normal was like. I find myself often wondering what my life would have been like, if not for MS.
  • I’m saying a prayer for you. Your post made me cry, for you, for all of us. I’ve missed “normal” the past few years, but especially the past few months. It’s gotten very hard. I almost don’t remember what “normal” is, and maybe that’s a good thing.
  • I work a full time job and also have epilepsy (seizure free 10 years now). I have to do my shot on Friday night which, in turn, takes my Saturday away because I am sick. Not much of a life. Makes me so angry
  • I’m forever apologizing!
  • I feel like I have been put in a corner my family buzzing around me. I feel like a nonentity and like I shouldn’t be around
.
  • Thankfully my husband and now grown children understand completely. However my mom, who is staying with me for the next six weeks, just worries and does not understand if I take a nap that lasts until the next day. She fears something is wrong with me but won’t accept it MS that is wrong with me. My husband is away on business for the next three weeks causing me to do all the tasks at home. Cooking, cleaning, shopping. Things I could always do without a thought or care and now I struggle to complete and suffer after.
  • When I got my diagnosis last summer I cried on my husband’s chest as he hugged me. I have so much guilt of putting him through this life with this and that I may have given this to my kids. I miss me and I miss our lives before this. We were long distance cyclists, runners, skiers, scuba divers, horseback riders and now…?

I no longer apologize for my MS

  • I used to apologize all the time for being unable to do things and finally I woke up! I was at a family event and my mother was pushing me to do something I was unable to do and I apologized, and then suddenly it dawned on me, and I said NO, I do NOT apologize! I can’t do this and it’s NOT my fault, whether you want to believe it or not I’m ill and you shouldn’t even ask me to do it.
  • Reading your words made me feel more normal (what’s normal anyway?), made me sympathize, made me cry for myself and for anyone else with any nasty disease to deal with BUT your words made me realize that I don’t have to be SORRY for having MS.
  • I like everything you said about not apologizing. Right now I’m in the hospital and asking so many people to help do things at my house. I HATE IT!!! Someone is going to stay there. Meanwhile I have no clue what my body is doing this time. I’m scared I won’t return to how I was last week. I want someone to be there for me like your husband. Mine left years ago because I was no fun

‪



.
  • I also have been struggling for 20+ years. I’m 47, and I feel exactly the same way every day but we are alive and on this earth if only just to comfort & support…be strong inside.
  • I have never felt the need to be normal, before my diagnosis and after. Normal is boring. I have always been different and always embraced it. As they say, “different stokes for different folks.
  • And I thought I was the only one with a husband that goes above and beyond! He’s always trying to fix things-it’s sweet, but every now and then I have to remind him I’m not fixable at the moment! He means well
  • Oh my God. This is my story as well, but it happened in the hallway on carpet. My husband didn’t bat an eye. It’s just carpet he said.
  • I don’t feel I need to apologize for not being able to do something.
  • After your initial diagnosis of MS there is no normal. I have learned to appreciate the good days and plow through the bad days. Reading what everyone writes helps me know I am not alone. God bless you all.
  • Sounds like my husband. I am totally blessed with a man who loves me despite this horrid disease
  • Please don’t be discouraged. Your life has become something different. It’s hard to imagine, but life has a strange way of presenting new realities sometimes. Your husband is an angel sent to help; I too have an angel and I am thankful every day.
  • I remember before 2006 I would go out have fun, dance. I don’t do any of that any more, especially at night. At around 3:00pm I start going down hill. If I’m up and out I try to be home around 3. Having MS truly changed my life. I have a truly wonderful caring husband who loves me unconditionally. GOD made that possible.
  • This IS normal! And it’s not like we camped out at MS headquarters to get a jump on anybody else so we could be first to get this great disease. Nobody knows why we get MS, but I’m pretty sure it’s not our fault. We do the best we can on any given day. And if wetting our pants is part of that day, then so it is. It’s messy, but how bad is that? I’m glad you have loving patient partner to help.
  • I have been re-reading this article over the last couple of weeks. It so touchingly addresses the fear and shame that underlies the diagnosis of MS I’ve been getting my head around since February. Always the strong person, the one who is leaned on, who am I if my strength is gone? Well, reading your words shifted that perspective. Your sharing of this shows your strength, the strength of your relationship and the guts to look at things in the eye. Thanks so much for sharing this.

What about you? Do you find yourself apologizing for your MS? Please share your thoughts with us!

Share Button

The first “Ask Me Anything” on MultipleSclerosis.net!

Posted on by
2

facebook_share-ask_2x

You may have heard of one of the latest trends in social media discussion forums, called “Ask Me Anything”, or “AMA”, popularized by websites like Reddit. An AMA is a common chat topic or general discussion forum thread in which people ask someone who is an expert in a certain area questions relating to his or her life or expertise. Last month, MultipleSclerosis.net hosted our first AMA event on our Facebook page, and it was amazing! The event was hosted by our team of moderators in honor of MS Awareness month, with the goal of providing a set time where members of our community could ask our team anything about MS symptoms (our chosen theme for this particular event). The results were tremendous! Our first AMA prompted over 240 posts in just one hour – including questions, comments, and replies – which averages out to about 4 posts per minute!

Though the main theme of the AMA was MS Symptoms, a wide variety of topics were discussed, including rights at work, discontent treating physicians, how to provide support to relatives and loved ones who have MS, how to manage fatigue, what it means to have secondary progressive MS, and what to do upon first receiving an MS diagnosis.

Our moderators and team answered the community’s questions based on personal experience as well as the wealth of articles on MultipleSclerosis.net. Here is a brief summary of some of the topics that were discussed!

I’m unhappy with the treatment I’m receiving from my current neurologist. One place to start is by taking a look at a registry of MS experts here. The National Multiple Sclerosis Society may also be able to provide recommendations for practitioners in your area. Additionally, attending patient meetings can be very helpful for coping with many aspects of having MS, and they also serve as a great source of information like names of good doctors.

What can I do to manage my MS fatigue? Believe it or not, exercise actually helps some people with MS manage their fatigue. – It stimulates certain chemicals in the brain to make us feel better. Working full time while taking care of one’s family is exhausting for MSers. Another idea would be to try meditation or yoga for its calming and healing effects.

What are my rights at work with regard to disclosing my condition, and receiving the support that I need? The ADA requires an employer to provide assistive equipment/aids so someone who is disabled can continue doing his or her work. It also prohibits the employer from firing someone for being disabled, but does not protect you from termination if the employer cites other reasons. It is also important to contact someone in your Human Resources (HR) department if your company has one. Those who work in HR are experts in this subject. Our expert, Cathy, also wrote a great article about helping those who are disabled look for work.

How can I be helpful to a loved one who has MS who lives far from me? One of the best ways to provide support is to be there for loved ones when they need to talk, and show an interest in how this is affecting her or her life. Ask her how she’s doing, and listen to her response.

What is secondary progressive MS? Secondary progressive MS is a type of MS. While relapsing-remitting MS is the most common type of the condition, secondary progressive MS impacts many in the MS community. Here is some more information on SPMS.

What does it mean to be in remission? Being in “remission” doesn’t necessarily mean that your symptoms completely disappear (some people will return to feeling exactly as they did before the exacerbation began). Stephanie wrote a very comprehensive article on relapses and remission in her MS 101 on understanding relapses.

Where should a person who was just diagnosed with MS start? You should start with a request to see a neurologist– preferably one who specializes in MS – and have a complete workup of your history and an MRI. Unfortunately, it can take a long time to find answers.

We truly appreciate all of our community members who participated in our first AMA, and of course our amazing team of moderators who were feverishly responding to all of the questions during a very exciting hour! We will definitely be hosting more AMAs in the future, so we will keep the community updated when we have the next one scheduled!

Share Button

When people say, “but you look so good!”

Posted on by
1

One of the more frustrating things about having an invisible illness like multiple sclerosis is having people tell you, “but you look so good!” It’s incredibly difficult to explain to others what it is like to live with MS, and because so many of the symptoms associated with this condition are not apparent on the outside, it seems impossible for those who do not have MS to understand. We recently posted a story from one of our community members who expressed her frustration about people telling her she “looked good”, and our Facebook community responded in support! Here are some of the comments that our community members shared!

People just don’t understand

  • I understand, I have had MS for 11 years and I hear it all the time, “you look good!” Well I don’t feel good! People just don’t understand this disease!
  • Don’t waste any more time trying to explain what you’re going through. Most people just don’t get it. If you have a support system, terrific. It takes too much energy to try to educate everyone you know about MS. Don’t be afraid to say NO. I’ve lived with MS for 25 years. In that time, most people I know have “gotten it” through my behavior and actions. Check with your local MS chapter. They have literature to explain MS. Join a good support group. It helps.
  • While these words are true most folks mean well its more an issue of them not understanding MS. They understand what they can see, that’s all.
  • I get “how are you feeling? You look good!!” almost daily. Some days I wish I looked like I felt so then maybe people would realize “oh, she’s a mother of four and looks like she feels terrible despite her busy/demanding daily routine”. Pep talks are good, and positive reinforcement is also good. Telling me I look good is pointless.
  • I always tell the people that I look so good at the outside because there is nothing beautiful left at the inside. It is rotten, so I will do everything to keep my outside pretty.
  • I just wish they could be in my body for one day!
  • That statement makes me feel like I do not have the right to feel bad, or to “sit out”. It says the person talking has a total lack of understanding of this disease.
  • It drives me nuts when I hear that! It diminishes my feelings. No, I don’t want to roll around in “whoa is me,” but heck, this is real.

People think I’m lazy

  • My family thinks I’m lazy and expects me to push through it. I’ve been a plumber for 25 years and a timber faller logging for 7 years… I could get disability, but I want to work, I just can’t over do it.

People mean well

  • I think many people mean well by saying it. The truth is, I don’t venture out when I don’t feel well. I had a cop question me using my handicapped permit earlier in the week – checking my ID against it and he said “these aren’t for convenience”. I told him that he should be thankful I felt like crap or I would tell him what I was really thinking.

I don’t feel like I look good

  • MS made me gain weight, changed my shoulder and my legs, and my eyes cross. My body hasn’t felt fit in years, so please don’t say that I look good
.

I don’t mind if people tell me I look good

  • I don’t have a problem with people saying I look good. All I can say is thank you.
  • I still like to hear, “you look good,” even if it’s not true.
  • I rarely talk to anyone about how I feel because they “know exactly how I feel because they do too”. Even though they don’t have MS.

What about you? How does it make you feel when someone says, “but you look so good”?

Share Button

The Heat and the Cold Can Impact MS Symptoms – Our Community Members Share Their Experiences

Posted on by
6

For many people with multiple sclerosis, heat can exacerbate MS symptoms. One of our contributors at MultipleSclerosis.net, Matt, even moved from southern California to Colorado, partly to escape the heat. However, another one of our contributors, Jackie, experiences MS symptoms, especially in her legs, when it is cold. It seems that temperatures affect people with MS in multiple ways, and in a recent article, Stephanie shared her experience. While she is extremely cold during the day, she finds herself turning into a “human torch” at night. As it turns out, many of our community members also overheat at night, or have other issues regulating their body temperature. More than 30 people in our Facebook community commented on Stephanie’s article, and here’s what they had to say:

I have night sweats too!

  • I had no idea that this was a symptom of my MS, which I was only diagnosed with 2 months ago. I also found out in an earlier post that “sensory overload” is part of it. Just ask my family, Saturday I was a complete jerk with EVERY little noise and I had no idea why. At least I can feel validated and not completely crazy!
  • I thought I was the only one who suffered from these strange symptoms! I prefer the heat over the cold, which makes my extremities hurt. And I freeze constantly – until I go to sleep. I bury myself under the covers to get warm, but wake up in the middle of the night kicking them off of me because I’m drenched in sweat. It’s miserable and ridiculously confusing!
  • I’ve been having night sweats for awhile and my neurologist keeps saying it is not my MS, but it didn’t start happening until a year after my diagnosis.
  • Fantastic post. This is something many people with MS experience as part of life with the condition and will help other people see they are not alone.
  • I, too, prefer the warm, not hot, weather. I freeze all day, but I can’t stand the covers on in bed.
  • I thought I was the only one who had the strange symptoms. I haven’t slept because of it for now 3 weeks, and it’s driving me insane.
  • I thought it was menopause possibly starting early. I never thought my MS did this. It’s horrible, especially when it’s actually cold.
  • I have the same problem with night sweats. I’ve had every test and no one can explain why I have them. Thanks for the article. I don’t feel so alone.
  • Yes, I definitely relate! I turn into a Bunsen burner especially late at night and no matter how cold it is I sweat like crazy without even getting all that over heated or hot. I still wake up sweaty.
  • ‪I sleep with ice packs all year long here in Michigan.
  • This is me, 110%! I’m freezing all day then a human furnace at night. And I can’t handle sleeping without a heavy blanket either from years of doing so before these symptoms.

I’m cold sometimes, and really hot at other times.

  • My husband and I had to resort to having our own bedrooms, and I often keep a fan on and have eight blankets. This is all because my body temperature is yo-yoing.
  • My feet always feel cold even though they’re warm especially when I’m in bed
.
  • I get really cold then I get really hot. It’s off and on.
  • I have that problem too. I thought it was just me, so thank you for posting this. I get night sweats to the point that my shirt will be wet.
  • I know EXACTLY what you mean! I am freezing cold, and burning up at the exact same moment. But it’s not just at night. I am always uncomfortable.
  • I thought it was just me! My body is like a house with no insulation. I’m either too hot or too cold.
  • I’m always warm – my hot flashes ended some time ago. My feet are always cold, even when it’s 100° outside. My circulation is getting so bad.

My Body temperature is hot all the time!

  • I’ll trade with you! I am like a human torch all the time. I never cool off even in the winter. People think I’m crazy because I don’t wear a jacket even in the winter. It makes it very hard to sleep because my husband is always cold and I am always hot.
  • I live in IL and it’s Dec. 22. I still wear shorts and a short-sleeved shirt to bed. I still sometimes wake up sweaty.
  • I don’t get cold often, but I’m always really hot since being diagnosed. It’s winter and I’m running my fan on full blast!

I’m cold all the time!

  • The only time this overheating ever happened to me was when I was taking Rebif. Now I am a thermostat nightmare – freezing cold all the time, layers and layers of clothing, and at night I have found the one thing to help go from hot to cold with minimal effort – believe it or not –  is a sleeping bag. The silk of the bag stays cool, and it warms up like a champ too so it’s easy to toss on and off at a whim without too much effort while TRYING to sleep.

Other:

  • I also find that using a sleeping bag helps me better adjust temp at night. I found this out by accident in September. Long story short, I was homeless from March of this year until December first. I was living in my car and when the season started shifting here in New England I finally borrowed a sleeping bag for the cooler nights. I slept much better with the sleeping bag than I did with blankets. My car would get stuffy at night with all the windows rolled up yet it was also chilly. The silkiness of the sleeping bag was comforting when I was feeling chilly and it was soothing to lie on top of it when I was feeling a little too warm. Now I have finally moved into an apartment and I don’t want to give the sleeping bag up.
  • I don’t do well in the heat. AC is for me in the summer, but I have been having cold hands and feet this winter nearly all the time. I am sitting in front of a floor heater nearly all the time now, and I live in California. There’s no way could I ever go or live where there is snow!
  • I don’t usually get hot or cold, but lately in the last 6 months I have sweating episodes that last about 20 minutes where I am drenched. I’m way past menopause so I know that can’t be it.

What about you? Do you have trouble regulating your body temperature? Do you have a hard time with either hot or cold temperatures? Please share with us in the comments!

Share Button