Last reply


Describing your MS Symptoms

I've seen this list before, but it may be useful. What living with MS feels like..:- When We say we can’t do something because we don’t feel well, put yourself in our shoes by using the examples of our symptoms below… Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now? - Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles. - Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm. - Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down. - TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily. - Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day. - Tingling: Stick your finger in an electrical socket – preferably wet. - Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing? - Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot. - Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink. - Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house. - Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing. - Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzzzzzzzzzzzz - Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens. - Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you. - Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too. - Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensative area. - Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed. - Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all. - Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine. - Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared. - Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course. - Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson. - Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in. - Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper. - Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things. - Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it. - Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep. - Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up. - Swallowing: Try swallowing the hottest chili pepper you can find. - Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms welcome to our world. Then Finally… After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counselling is the answer. :)



The response I dread is: 'But you look so well..'






Fan-bloody-tastic! I'm going to post that on facebook, lol.



I'm tempted to add it to Facebook as well. Especially the fatigue bit. People just don't GET it you know? There's tired...and then there's TIRED! x Thanks for posting.



I posted it and the reaction has been fantastic, it's already been linked by others.



Love it !



I love this list.



I like the explanations,I think I'm going to print it out and give a copy to someone healthy the next time they tell me how the flu that they have had for a whole two days now is draining them, or their feet are tired from walking around all day :)






Thanks <a href='https://shift.ms/community/people/Stumbler/' rel='nofollow'>@stumbler</a> this is excellent! I think I might steal this for Facebook too!



Thank you for posting this stumbler! I read this out loud to my husband and laughed till I cried. I loved it... The hubs said it made him depressed which made me laugh even more.



Nice post stumbler. I've copied the info so can I refer people to it who ask me about ms online or via email. Saves a lot of long explanations or the all too often brief response of 'Well it varies...'



<a href='https://shift.ms/community/people/f3ng5hu1/' rel='nofollow'>@f3ng5hu1</a> , It's not my property as I copied it from another forum. I just thought it needed to be shared further. :)



Nice share, anyways, ty



well I fit all the symptoms mentioned



It's the MS drinking game!!!



I read this outloud to my husband. I think he thought it was exaggerated but I assured him its pretty spot on. The only thing that its missing is that some of these happen at all the same time. I'll be posting this on facebook, I feel like making a statement to all the whiney asses! :) don't you dare tell me you're tired, cuz hun you have no idea!



Do you guys think it is possible to get to terms with the symptoms, I mean just accept them for what they are and try to work around. I am just wondering, has any of you guys gotten that far? I am trying to but am far from there.



You need to get to the emotional stage of acceptance. It's not an easy journey and is fraught with encouraging ups and horrendous downs. But, even with acceptance, you still need to go back and review your journey to acceptance as you will always raise questions. So, acceptance is a journey, but life itself is a journey. That's all a bit deep for this time in the morning! :)



I was diagnosed almost 11 years ago. I've come to terms with symptoms and limitations. That being said, I still get very frustrated when something new comes about. I don't get too freaked out by the symptoms much, but that doesn't keep me from getting pissed at their inconsistency!



I guess after 15 years of being hurled to the ground more than once... I guess the easiest thing to say is, that the symptoms are there and they are damn annoying...!!! But if we accept that as the ordinary, then what about when more comes along!? I have gotten so far that the MS pain, takes my all concentration away from other things. I can break my arm and not notice it until a week later. Last week I managed to get a concussion fro a triple salto with spin on it, down a two step staircase. I didn't notice and got the diagnosis one week after the fall. My doctor was not happy. Any of you guys know about these things, and if so. What to do next?



This is scary but so true i think it will be FBd :)



Soo true, especially the foot drop.



I was looking for this last night, to show my new girlfriend, she needs educating. Now it's back on the front page for a while it'll make it easier to bring her up to speed. I was fatigued last week, she thought I was being off with her. This should explain it better than I can, as I keep forgetting the words to use.



This was hilarious! And bleakly accurate..... Still, nice to have things so succinctly and entertainingly explained for those who fortunately don't have the first hand experience. Think I'll be saving this list for future reference as when people ask me what these things are like I can never do it as well as this. Partly for the same reasons as pottypete above, I can never remember the words! Well, I remember lots of words and they all start with the right letter, it's just the correct one that refuses to come to mind!






This needed bringing back to the front for newbies here to read, so here it is!



<a href='https://shift.ms/community/people/Stumbler/' rel='nofollow'>@stumbler</a>-- thanks for sharing! I've never seen this list before.. incredibly funny, but frighteningly true.



I think we need this to stay on the front page, haha.



thank you



think i'll print this off and give it to the doc! :)



Thank you, this needs to be on a shirt!



Thats gonna be one big shirt Traveis15



that's excellent! some doesn't apply to me, some did but a lot of it does. if you don't mind, i've copied and pasted it with the intention of showing it to people. thanks <a href='https://shift.ms/community/people/Stumbler/' rel='nofollow'>@stumbler</a>



Fantastic wish this was a handout for all your family and friends sometimes I don't have the energie to explain how I feel this should do the trick !



<a href='https://shift.ms/community/people/femke/' rel='nofollow'>@Femke</a> - get it printed & framed (well, parts of anyway) and hung up on a wall somewhere :-) I think it's absolutely brilliant and hell, well worth the read and great for a laugh.



Spot on! Well shared.



<a href='https://shift.ms/community/people/Stumbler/' rel='nofollow'>@Stumbler</a> Ty, this seriously made me laugh... What bothers me the most is when people say things like 'Oh but you r too young to already be such a sick person...', seams they think Im seeking attention, exaggerating or trying to justify being unemployed cause they cant actually /see/ proof neither of the migraines/insomnia/MS. -.-' Yeah, well...its not exactly like I /want/ to be sick is it?? To at times have migraines so strong that I can barely walk straight. To feel so tired that even opening my eyes in the morning feels like too much of a chore and, to top it off, managing only a max of 3to4h sleep per night. Its usually very difficult to make me loose my temper but that never fails to set it off. -.-'



Thanks for posting this <a href='https://shift.ms/community/people/Stumbler/' rel='nofollow'>@stumbler</a> ... I hope you don't mind but I posted it on my Facebook wall for all those people who keep asking me how I'm feeling lol ...... Hope ur well x



That's no problem, <a href='https://shift.ms/community/people/sef71/' rel='nofollow'>@SEF71</a> . I've actually sent the list to my MP as well, as I continue to talk to him regarding the DLA/PIP reassessments over the coming years.



I love this! How can we make everyone we know read it? !



LOVE IT <a href='https://shift.ms/community/people/Stumbler/' rel='nofollow'>@Stumbler</a> I'm definately putting it up on my FB page when I get the time. I agree it should definately stay on the front page of post it's!



Added it to my Google+ page!



Im actually really glad I read this, Ive been having a lot of weird leg stuff, and heavy is the perfect way to describe it. I really didnt know how to explain it, just saying they were weak feeling, and sore if I walked too much, but that didnt really fit! Thanks :)



<a href='https://shift.ms/community/people/Stumbler/' rel='nofollow'>@Stumbler</a> - congratulations sir, you've surpassed yourself with this post. I've not laughed that hard in ages. I'm still suffering with a couple of these though - fortunately - not too many. Loved the description of foot drop, vision problems and side effects of the shot. Made my day!



oh these are so true! Although i'm now a wheelchair user I remember the drop foot one so well. I think i'll post this to Facebook too!



Sorry, but I had to pinch it and save it on my pc, ready to dish out to spread awareness. Excellent!






I saw this a few years ago, printed it off and handed to my manager who after reading it put it on my personnel file. They refer other managers to it so that they have some awareness



Just brilliant.



Spot on.. I can relate to quite a few of these :-)



I'm going to send a copy to my (MS nurse) sure she don't realise. Lol



Though I think this is a perfect explanation for the way most of us feel. At one time or another, and can so relate to lots of it. (Wish I couldn't) still think (you don't get it till you've got it) so 90% of the people you get to read it still won't have a scubby. lol



im nicking this m8 for my facebook feed lol hope thats ok



Me too @Stumbler :-)



Absolutely brilliant. Thx Stumbler x



Fantastic, I actually had no idea the crawling spider one was a MS symptom? I constantly smack my legs or arms or brush things away thinking there's something crawling on me but I turn my hand over to see I missed it again but it was never there at all was it!



Nice one @Stumbler and still true today :) Sonia x



Great find @stumbler I've posted it on Facebook to let people know what some of us go through.



Awesome post @ Stumbler. Made my day!!! I can relate to quite a few of these.



Best post ever!!! Never knew just how many symptoms someone with MS could suffer from.



That post is brilliant - please can you publish it somewhere? Very well written, very true and yet very funny too. Thank you! Lucy



Wow!! Very powerful message, it definitely explains every aspect of MS and you never sugar coat at all. @Stumbler, you are the best and you always give great advice



@stumbler, thanks for posting this. This is so accurate. Well said.



This is a great post, try ‘but you have had treatment surely you are now a lot better’ 🙄



hi love this , i have the walking and balance most . When it was colder most people would think that i was drunk now its hot they panic and get concerned that i might faint or have heat stroke . I think that this is quite funny in the change in perception of the same thing.



Awsome post



Great read and true to the point



Spot on mate



Love this!!! :)



Actually cried reading this, thank you.



@stumbler Absolutely fantastically Brilliant !!! Well Done 👍😊 Print this, mini book form, it's worth a gold mine stacked with jewels,



How can I post this.on Facebook would be very help full as I am currently having all of this and have been for the last 3 months. Hopefully I should actually get a full diagnoses in 2 weeks fingers crossed



I'm lucky in respects that I only feel fatigue, maybe brain fog on occasion and numbness and tingles. The one thing that does resonate with me is the going to sleep worrying I'm gonna wake up and not be able to move, I have nightmares about it. I'm very much the glass is half full kinda girl and that I'm positive about it all but it doesn't stop the nightmares sometimes. Who knew others thought that too 😂😂.



Didnt realise this site had been going so long. Great example discovered symptoms i have are shared . Thank you Stumbler. x



This is the most accurate thing I've ever read



@stumbler this is hilarious, but sadly very relatable! Thank you for sharing!



@stumbler - so many symptoms there resonate with me! Thanks for sharing, Colette



@stumbler definitely saving this one ;-0 but changing many of them...like strapping weights on ankles and thighs...it is important to strap twice as much weight on one side vs the other ;-0 the imbalance adds to the challenge and fun of this game we call life



@stumbler Outstanding post, this is for others to be aware of and to realise just exactly what we go through. All the best mate!



Absolutely brilliant! Just read it and yes ppl just don’t and will never understand



Who finally diagnosed you. I've had diplopia for 2 years now, can't walk in tandem feels like you're walking a tight rope. As well as "carpal tunnel" feels light hands are burning and / or wrists feel like circulation is being cut off at wrists. Spinal injuries. Can't pick things up and cant support Any weight. As well as ankle problems heel spirs



Incontinence, Chronic back pain and many falls



Love it, MS described it perfectly!



I don't think I've laughed this much in ages but MS had to play a part because I was wheezing with each laugh, but thanks for the read. Hilarious. I'm going to print this and post it on my wall.



I have lived with MS 14 years ( now SPMS), I’m housebound but I’m not in wheelchair! I walk and balance a bit dodgy !! I try to exercise so I don’t seize up and I teach other warriors exercises too !! It’s great mentally & physically! It increases fitness, endurance, strength, flexibility, gait, posture, balance, coordination! Decreasing spasisity, pain, weight, fatigue!! If you have MS like me ... If your balance is not good... If your walking is dodgy... If your body is seizing up... If your symptoms are exacerbating... DO THIS, SEATED, STANDING, LYING ONLY: “Multiple Sclerosis Fitness with Jayne MSer & Warrior “: YouTube U.K. 💋Big hug 💋