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Readers Respond: What has been the most painful part of MS for you?

Responses: 445

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Updated March 19, 2009

Multiple sclerosis (MS) can be very painful, although many people do not realize the extent to which MS can cause pain and discomfort. I know that it is hard to find words to describe the MS hug or the incessant feeling like ants are biting the soles of your feet. However, the fact that these things are so unique to MS can result in a lack of understanding and empathy, just when you need it the most. This is the place to let it all out, "scream" about how much it hurts sometimes, rant, moan, gripe. Go ahead. We understand. Share With Others

Thank you. We are not alone

Make us sound like aliens!! It's good to read someone saying how you feel, they know. I have secondary progressive and I feel like I am complaining if I say I don't feel well but inside I could scream on days. I now walk with a limp and wobble (sound like a duck). I would like to know a doctor once told me, I should accept my ms as a friend, but its a friend I don't really want want to be honest. How do others feel regarding this. Best wishes Liz
—Guest Lizlorenzelli@aol.com

i know how you feel

i had servere head, neck pain, numbness in my left arm, hand and legs. when pain in head is so servere i get sick , dizzy , histeric and paranoid. i have been to fisios, chiropractors, have been in hospital for weeks and still nothing to make me feel better. i cannot do my work anymore, i have 2 kids and i cannot take care of them like 5 months ago. i am totally depressed. the pain is one thing, but to worsten this all is there is no help for this. the one fisio did mention that i have ms, i just left the hospital after a week for severe pain, and docters say it is whiplash. will i ever get better???
—Guest ksherbrook

flexor spasticity

anyone ever had this symptom, flexor spasticity cause themselves to become totally helpless and in need of help? The pain ,so intense?
—Guest G Ma Sum

Can't stand these legs

Does any one else have that much pain in their legs that they want to chop them off?
—Guest Suzzuki

Can't stand these legs

Does any one else have that much pain in their legs that they want to chop them off?
—Guest Suzzuki

The air we breathe.

I concur with all of you on the pain of it. Has nobody thought of the toxic garbage (chemtrails, weather "modification", geo engineering) that is bringing this out in MANY people??? Do you really thing "your 'g-ment' (not mine) gives a rats arse about any of us!~? Read it, wake up and Unify. +
—Guest Rachel

Early Stage of MS

2012 I started noticing that my arm was twitching uncontrollably and I could not feel my fingertips in my right hand for hours, I was told it was a pinched nerve. Since I was rushed to the ER 4x in a great deal of pain stemming from my neck, shoulder and right arm. I requested an MRI everytime & was denied. Finally I drove myself during an attack to Urgent care and refused to leave until they scheduled one. They found it in the 2nd MRI..abnormal nerve feeds in my neck & behind my left eye, I was tested for the pinched nerve, which I do not have and told that this was MS. What pisses me off greatly, is not only did I have to literally fight to get these tests, but I am in pain on a daily bases, some days tolerable other days not, and my neuro & Dr refuse to give any kind of pain meds outside of IBs and Codiene aspirin. I felt shamed, just asking for it. I want to touch them and make them feel what I feel for a day, I'm sure it would change their tunes greatly!!
—Guest Corey

You feel almost ashamed for having pain

I hate that I feel ashamed for having pain, and having to ask your doctor for help. MS is so invisible to everyone. Even your family members still dump things on you as if you are fine, or as if this disease is not real. They can't see it, so they don't believe it. Such an awful feeling to not want to walk because it hurts too much. If you know someone that has MS have some empathy, we suffer in silence, and are silenced by your lack of education. Pick up some literature if someone you love is suffering so you can have some understanding of what they are going thru. Don't ask if you can help, just do it.
—Addy1102

Devistated

So for the longest time, doctors have told me that all of my symptoms were anemia related, gave me b12 shots but still the symptoms, finally discovered I was not anmeia, took me off the shots. Still, chronic pain in shoulders and the shoulders get real hard in the muscles and stay that way and easy to pull a muscle, then leg cramps that wake you up at night or just to sit and prop your feet up to watch TV and leg cramps or spasms, can not get in the heat for swelling in fingers or toes or hands, extreme tiredness for the most part, foggy headed and eye pain, worst part is my hands begin to tingle and arms, then my hands draw up like their playing puppets!! Go to grip the stearing wheel and hands just go like in a numb tingling grip and will not stop, then finally release themselves and yet still tingle like needles, or my head will feel that way, but even worst are the zapping feelings like a shock in my head when I hear certain noises or even see a bright light or a ziggy line when I close my eyes, or when I want to go out, I am warn out before I can even think about going and I dread to go out or talk to people much which is NOT me, for I am so exhausted, I was once the Cats Meow and now I feel like the mouse the cat ate rather or ready to eat! I have a grandchild and can hardly spend anytime with her from pain or exhaustion or cramps or falling over. I use to dance in heels and now am lucky I can even dance at all sometimes for getting off balance and my Sister said it is a part of getting old but this is MS and to me MS seems to not care of any age, I am 54 and feel 80 and just am not myself at all with this deal going on and then there are days when this MS thing decides it wants to be dormant for a while and then I am the Cats Meow for a while, but when asked on a date, it seems to trigger something more than PTSD, and I decline and that is how MS will make you feel. They say you can live a normal life with it, well I have news, I exercise, and when I do sleep I do, but my thinking can be incredible and then it is like I am a Zombie and want to be left the heck alone for I am so tired or just warn out and cry, well, I am the author of tears so I understand how everyone here feels and I am sure I left out some symptoms like having to pee alot or not really wanting to be intamate if I even get the energy to try when I accept a date and the Doc's well, they pass you around and around like playing Poker or send you to a Shrink, if they do not have the answer that is their answer, Send her to a Shrink! So finally your told your Cerebellum is abinormal by a foreign Doctor and you tell your family and they run like you got the herpies virus rather than hang or tell you to get another opinion after you have been thru scores of test and you know what I mean and some family's are good to stand with you which is sweet but some think your Crazy anyhow, So if it is of any comfort, I understand deeply for I am devistated but will find some ways, there has to be a way for us All. Take care and well, I am going to look up some home remedy's and do a little experimenting of my own, there has to be an answer!
—Guest Frani

m.s.nightmare

I also feel that neurologist are not helping with our pain and treating this monster disease that eats away at our brain. Causing such horrible symptoms. Pain in my legs,spine and the bugs crawling in my sides. Which I learned this is the m.s. hug. Now it is moving to my left side only now it feels like my ribs are laying on rocks that are moving around. My pain management Dr. Looks at me like I am crazy, they just don't get it. I am allergic to neurontins. And he puts it in a cream and tells me to rub my legs , saying it would act different since I am not taking it orally. Well guess what I had terrible reaction from the gabapentin an d the cream broke me out in a terrible rash. He blows both reactions off and doesn't even apologize knowing I am allergic . Then he doesn't give me anything for the terrible rash. I think all m.s. people should form a group against doctors who just don't' get it. We all can write our nightmare stories but really we need to help one another.
—Guest debra

ms too

I was 29 when I got the news that I too have ms.I so hate it,all the pain I have to go though.I used to to work all of the time,now I can know longer work.Does anyone think there will be a cure??It has been here since 1868.
—Guest jill

the pain is so bad

Its Been five years since I found out I had ms started out with left side numbness I guess I've been in denial hopping the diagnosis was wrong but the pain is so bad in my feet I can barley get out of bed my back hips legs hurt so bad I don't know what to do I try and stay strong but all I want to do is cry the pain killers only help for a little bit and I am suffering again I work full time and have four teenagers its hard and I didn't realize that this was caused by ms till I read all your stories I'm sorry all you are going threw this but I'm glad to know I'm not crazy and I hope you all have someone in your life who understands what your going threw I have a wonderful husband thank God because you can't even get the doctors to understand what your going through they make you feel like your a junky and just want drugs stay strong any advice on easing the pain please help
—Guest Jocelyn

Will this pain ever stop

Have been diagnosed with RRMS and this pAin never stops on treatment but that never stops the tingling neck heaviness and spine spasm s numbness not been able to sleep at night had to go back to work as to much burden on my husband been hard the most pain I get which is like a knife stabbing me and a rope tapped around my neck and it gets so painfaul that it causes me bad headaces oh just wish this pain would stop nubthg helps it stop fully have taken pain killers creams to relax muscles and sooth chiropractic massage and this only numb it for a hour and then its all back wish people that don't have pain know how lucky they are
—Guest Beck

I UNDERSTAND

The most painful part of my MS, for me, is the emotional part of it. I can't just get up and do like I used too. I am in pain on a daily basis and the past week and been the worst of it so far. What I have found is that there are other people who feel just like I do and that in itself helps me get through this. The pain has been unbearable, the muscle spasms, the needles and pins, the electric shock feeling. I don't feel like my doctor is helping me, all he wants to do is another test another test another test, my gosh, how many tests do I have to have done. I just want the pain to stop. Is anybody out there taking anything that truly stops the pain, or at least relieves it temporarily?
—Guest ROBYN

HAD TO GO OFF BETA SERON DUE TO COST

MY HUBBIE'S INSURANCE ONLY COVERS TWO MONTHS OF BETA SERON/EXTAVIA. THE OTHER TEN MONTHS WE MUST PAY THE $4,000 PER MONTH. IT WAS SO STRESSFUL--I HAD TO ABANDONE MY SHOT THERAPY. I HAVE HAD MS SINCE 1982--SECOONDARY-PROGRESSIVE. I AM SO AFRAID OF THE FUTURE I'M STILL STRESSING OUT. IS THIS RATIONAL? I'M AMBULATORY (WOBBLING BEHIND A WALKER) BUT FOR HOW LONG? I HAVE SSDI, BUT HAVE NEVER USED THE PRESCRIPTION COVERAGE. WILL THIS COVERAGE EVEN MAKE A DIFFERENCE? AM I SUICIDAL FOR CHOOSING TO END MY SHOT THERAPY? IS THERAPY A GUARANTEE FOR SLOWING THE PROGRESSION OF THIS INCIPID DISEASE?
—suzhussey

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