There is a lot about MS that is difficult for “healthy” people to understand, and one of the most frustrating things is that it can be really difficult to make plans in advance. You just never know how you are going to feel the following day, or even the following hour. One of the amazing contributors at MultipleSclerosis.net, Matt Allen G, wrote a wonderful article about his frustrations with being unable to make plans with friends in advance, and then some people not understanding why those plans may have to change at the last minute. Matt’s words really resonated with our community, and so many other people shared their thoughts and experiences with us. Here’s what our community had to say:
It’s emotionally draining
- My head tells me I can do it but my body won’t let me. For me this is the worst. I look around during my house and there is such that needs done but I just can’t. Depressing.
- I get so sad and discouraged when I see people posting pictures of everywhere they go and the fun they have…and I do well to get to the store once in a while.
- This is one of the hardest parts of staying in the family dynamic.
MS Doesn’t Care
- MS doesn’t care if your children need you to drive them here, there, and everywhere. MS doesn’t care if you got all dressed up and now you need a nap. I have gotten all dressed for church and then as my husband is backing up the van I ask him to stop as I need to go back in the house. Then I take a nap, fully dressed, too tired to undress.
- I have an international trip coming up, and the anxiety alone is killing me, but I figure you only live once. If I let this disease deter me from making plans and living my life as best I can while I still can I’ll always regret it. Tomorrow is not promised to anyone. You never know when there’ll be a “next time”.
- I never know when I am going to feel better; 10 minutes good, then it’s downhill.
- I always get trip insurance and have used it. It takes the pressure off. Make sure it covers pre- existing conditions as most don’t. I think it is Travel Guard. You have to purchase it within 2 weeks of booking a flight or trip. Really truly despise this part of living with the monster.
- My experience has been to make plans with the people who understand that I will do what I can. I go, do what I can and find happiness that I did what I could and had an experience that I will remember.
- I stopped making plans because I never know how I’ll feel. One day at a time.
- Fatigue and meltdowns make it so difficult to do things around the house. I’ve learned to do things as I can because pushing to finish anything isn’t possible for me.
No one understands
- This sums up my life perfectly. I HATE the unpredictability of this disease. Especially when “I look so good!” but my body’s numb. Or I can’t lift my leg. People just don’t understand what its like. No matter how much they try to empathize they’ll NEVER understand it. Like the phrase goes, “no one Gets MS Until they GET it”.
- This is something I wish all my family and friends understood.
- No one understands what MS is doing to you… You have to listen to your body. You will lose people because they just don’t understand… Keep positive and Never ever give up!!
- I wish my grown children would understand this.
I won’t let MS run my life
- It never stops me. I’m going to Thailand, jumped out of a plane, to work I drive a modified car, and I play wheelchair basketball for my local team.
- One day at a time is all you can do.
- It’s not about having a good day. It’s about having a good minute!
What about you? Do you struggle with planning? Do you find that friends and family don’t understand?
Communicating the full impact of MS to friends and family is a daunting, and often frustrating, task. Looking fine and being fine are two very, very different things. This concept rang especially true for our phenomenal contributor, Matt, so he wrote an amazing article titled “Please, Tell Me Again How I’m NOT Disabled”
Our community completely agreed and responded with abundant feedback. Here are just some of the frustrating experiences encountered by our MS community:
No, you don’t “understand”
- I get easily frustrated when a close friend or a direct family member would say they understood, and then get mad or angry when I’m having a relapse.
- I’m in the painful process of a relapse and my family doesn’t understand the facts of any of this. Especially the fact that NO ONE is more frustrated than I am.
- If you don’t understand, at least be human and try. That’s all we ask.
- Sometimes I want to scream, “Stop telling me you understand when you have no idea!”
I might look fine, but I’m not
- I look normal but feel destroyed inside.
- When people tell me I look fine I just respond with “that’s because I don’t wear my brain and spinal cord on the outside.”
- Had to “talk” to my relatives to tell them that just because you look normal doesnt mean you feel normal.
- I just hate the “you look good” comment. What should I look like?
I’m not lazy!
- When your support system doesn’t ‘get it’ and accuses you of laziness, it is infuriating. I hate not being understood.
- I tell myself how pathetic and lazy I am. I don’t need to hear it from everyone else.
- I can’t live up to your expectations. I can’t even live up to mine, and it’s so frustrating.
- It’s amazing to me that people with MS have to fight so hard to “prove” just how disabling it can be
How about you? How has your experience been communicating to friends and family about your MS?
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!
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!”
- 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!
- 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!
- 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…”
- 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
- 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
- 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
- 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.
- 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!
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!
Tick, tick, tick…boom! That’s the sound of explosive “word vomit,” the result of a broken brain filter, the final moments of a shortening fuse. Many MS-ers have experienced this 0-60 build of anger in situations that would normally cause little concern. So, our fabulous contributor, Lisa Emrich, decided to do a little digging and see if this shortening fuse was actually linked to MS. Her article was a hit! While the research data may not be clear-cut, the community’s reaction certainly was:
This is so me!
- THIS IS ME!!! I have a very short fuse and very little “filter” on what I say when I “blow.” I don’t mean to act like that and it upsets me when I lose it, but I can’t seem to stop it either.
- This is me, too. I’m a really nice, caring person but…with a really short fuse. I also tend to speak without thinking, which has gotten me in trouble.
- I’m the same way! And I don’t mean to be. I have never been like this before and when I say “it’s the MS” I get the “yeah, right” look from some people.
It’s worse when I multitask.
- I find that when there is too much going on around me I cant keep up, and it is so aggravating!
- If I’m doing just one thing and then end up having to multitask AND answer questions or listen to someone talk, I break down.
- My fuse goes when there are multiple people/activities demanding my attention. I’ve discovered that I can only focus on one thing at one time. When that one thing is taken care of, then I can usually move to the next thing.
Sometimes I just want to scream “Shut up!”
- As soon as it starts I try to tell people to stop and hush for a bit, but they don’t understand, or they roll their eyes, or they keep talking,. Then they comment on how they AREN’T talking. My point is, there is never silence, and sometimes, I need silence.
- The fact that people in the office feel the need to yell because they don’t seem to have inside voices just makes it that much worse.
- Some people just know how to push the hell out of my buttons!!!
My poor family gets the brunt of it.
- The only way for me to deal with it is to declare to my three teens “I’m way off my A game today, so please bear with me.”
- I am so frustrated, and it is ruining my relationships with people, especially my poor child!
- I’ve found that too many demands for my attention at one time creates a very unlovable person—my family puts up with a lot.
- I hate it. It requires, love, patience, and understanding from the spouse!
I’m not me; this isn’t who I am.
- I have done a complete 180 since my diagnosis in 99. I used to have a REALLY long fuse, but I’ve started snapping more and becoming more passive-aggressive.
- I don’t even know who I am anymore!? It’s so hard.
- I can blow up in a second if things aren’t the way they’re suppose to be, and that’s not me!
- I never had this issue before. Now I tell people that “my bitch switch has a hair trigger.”
Does this sound familiar? Have you experienced an inexplicably short temper? Share your experience with us!
There are so many aspects of living with MS that are frustrating, and sometimes those frustrations occur when interacting with people who do not have MS. One of our amazing contributors, Ashley Ringstaff, shared her feelings about people comparing their experiences with things like fatigue, pain, numbness, and other symptoms with those symptoms in someone who has MS. Many of our community members shared their thoughts and experiences with us after reading Ashley’s article, “You Can’t Compare…”. Here is what they had to say:
“Healthy” People Just Don’t Understand
- This is something that I just cannot seem to communicate to certain people who don’t have MS or have never been chronically ill. “Healthy” people just cannot empathize, and I know because I used to be one and now my experience is completely different.
- The best is when people who know I have MS contact me and tell me they feel they are having symptoms and think they might have MS too – as if I can diagnose them! I try to see it from their perspective but it’s very difficult. Also when I say I’m fatigued- they say they get that way too all the time! I want to explain to them that they have no idea. But I just smile.
- When I try to talk to family members, they say they get dizzy, or they stagger around, etc. I just stop talking and tell them they should get checked out. Even my husband doesn’t totally understand what I go through on a daily basis. I just get so frustrated that I can’t do everything I use to do.
- I hate that my best friend who I haven’t been able to see that much in the past year constantly compares my issue with MS to her chronic pain in her hip, telling me she knows exactly how I feel.
- When I tell people I can’t be in the heat (for me it’s anything above 70) they say “I don’t like the heat either”. I just look at them dumbfounded. I want to yell “When was the last time you got warm and couldn’t lift your legs to walk or think yourself.
- You know, it is natural to feel this way. I am a 15-year stroke survivor and am irritated when someone (who has never experienced a stroke) says they know how I feel. The best common factor I’ve found is any type of trauma.
It’s really not possible to compare
- You can’t even compare your symptoms with others experience who do have MS, or for that matter, I can’t even compare the last time I had a given symptom to what I experience this time.
- I know there are many people in the world with diseases that are even worse than MS, so who compares what anyway? Just try to feel good for yourself and forget about complaining.
- It’s next to impossible to explain what having multiple sclerosis is like to people.
“Healthy” People offer a lot of unsolicited advice
- They ask how I am feeling, so I tell them. The response is always “have you tried such and such” or “that happens to me, too.” Now I only share my symptoms and feelings with medical professionals and a couple of friends who truly do understand. Family? Forget it.
- I love when people say “you would feel better if you lose weight or eat healthier” or the classic “exercise would make you feel great”. My family and friends mean well but don’t always say the right things.
“Healthy” People are just trying to relate to us – it’s harmless
- I like to be more optimistic – I believe, most of the time, they are trying to relate. Unless they are significant in my life, I don’t try to differentiate.
- I feel the majority are trying to empathize. Most just don’t know how to react when you tell them you have MS because they don’t understand what it means.
What about you? Do you find that “healthy” people try to compare their symptoms with yours? Share with us in the comments!
Fatigue is one of the most common symptoms among those with MS, but this fatigue is not the same as just being tired. And to make matters worse, it’s possible to be completely exhausted but unable to sleep. Our amazing contributor, Ashley Ringstaff, recently wrote an article called “Extremely Tired….but Can’t Sleep.” She says, “I can be completely exhausted where I can’t do a lot, I have no energy to even move all day, and when it’s finally time for bed, I will lay there hoping I will get some much needed sleep. But sometimes, that’s not the case.” As it turns out, many of our community members could relate to Ashley’s story. Here’s what they had to say:
I find that I’m always tired but have trouble sleeping at night
- I need naps in the afternoon and then can’t fall asleep at night. I seem to wake up at 3:00am almost every night. I’m lucky if I sleep more than 4 hours at a time. It’s very frustrating, but at least I don’t have to get up for work.
- This has been a new symptom for me in the last 12 months it is driving me crazy. I take trazadone for sleep, and it has worked for over 20 years but it doesn’t seem to work anymore. The summer also seems to make it worse. I am barely functioning during the day.
I haven’t slept more than a few hours a day for the past 6 months. I can feel the effect on my whole body.
- MS has given me insomnia.
- This happens to me all the time. I used to sleep 10 hours a night, anywhere, anytime! I miss that so much. But even getting some sleep now does not mean feeling rested.
- This was me last night. I was tired but up until 5:00am, then slept until 9:30am. I’m exhausted but my body is ready to party.
This is me exactly! One reason I had to leave my job was because I was falling asleep around 3pm. At night my mind goes 100 miles per hour, so hard to shut it off but during the day I can’t remember what I was doing.
- I’ve gone 7 days now with only 15 hours of sleep. In my opinion, this is this is the most irritating part of this disease.
- People don’t believe me when I say how tired I am. They just don’t understand.
Even when I do sleep, I’m exhausted
- I slept 10 hours last night and woke up exhausted. I spent the day riding around with a friend looking for yard sales. My body is so tired my legs don’t want to work now.
- I think I sleep well for a while, and then I wake up. It takes hours for me to fall back to sleep, but I wake up every morning fatigued, and some mornings dizzy and disoriented.
I’ve found a few methods to help with my insomnia and fatigue
- Meditating can help to “shut off” your brain when you’re trying to go to sleep.
- I have tried multiple drugs, techniques, yoga, baths and meditation. I exercise frequently too, which helps when I am up for it.
- I have had this on and off since being diagnosed in 2004. Some things that might help include taking a warm shower or bath a little before bed time or using a little lavender essential oil on your chest.
- I only get about 5 hours a night if I’m lucky. I lay down at 11 30 but my brain won’t shut down. I read and listen to music to relax enough. Last night I had to take my lorazapam to finally fall asleep at 3am.
- I’m lucky to get 5 hours of continuous sleep any night. I have done the sleep study. I lost significant weight some years ago, which resolved the sleep apnea. I take naps when the fatigue has taken its toll. I have accepted insomnia as my normal. I find it easier to work with it than to fight it. I do some of my best work at 0 Dark-Thirty AM.
What about you? Do you have trouble sleeping despite being tired? Share with us in the comments!
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?
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!