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

Responses: 439

By

Updated March 19, 2009

In the same boat

I've suffered Infections Allergic to Dust and dirt in animals.Colds Flue and Bronchitis and ammonia with fever up to 106.I've been. Anemic in before I was a teen.I've Always had something wrong.Each yr Hurting worse.Sick or Unable to walk at times bc Pains in my lower back spine hips hurt to badly.I've Always been Independent Women and Mother.Single 95%of my life.So to be told "ur always hurting" When do you feel good" U just Dont want to go" or I've Never know Anyone who's sick or hurting as much as u.Your too young to hurt.It makes my depression worse.Tho I act as if im ok.Im 42 and I Can't even wash dishes w/o fighting back tears.Lower back pains.Spine feels like it was used as a Polo stick.Crushing pains under my breast den to my waist.Facial Twitches.Highly sensitive to the touch of my spinal area.Feels Electric shocks throughout my Spain.Dizziness And so forth.Ms is the Only thing that Descides Me.Older I get I get New problems over the past 6yrs.My throwth Swelled 90%closed
—Guest Suffered too long

PEOPLE THINK I'M CRAZY AND JUST DON'T UN

I WALK AROUND SO MANY DAYS PRETENDING THAT EVERYTHING IS OKAY WHEN I'M REALLY FALLING APART AND DYING INSIDE. I HAVE PAIN 5 OUT OF 7 DAYS A WEEK AND WHAT HURTS THE MOST IS MY HUSBAND DOESN'T REALLY UNDERSTAND. HE TELLS ME I'VE SEEN YOU WHEN IT WAS BAD, HOW MANY TIMES HAVE I'VE TAKEN YOU TO THE HOSPITAL OR PICKED YOU UP OFF THE FLOOR. BUT WHAT HE DOESN'T GET IS THAT MOST OF THE TIME I SAY NOTHING ABOUT HOW MUCH PAIN I'M IN. HOW DO I GET HIM OR PEOPLE TO UNDERSTAND? A LOT OF TIMES I WIAH IT WAS JUST ALL OVER WITH.
—SDJFRICKE

pain in feet

I was diagnosed with MS about 7 years ago. Rrm MS. Within the past 6 months I have been having extreme pain in my right foot. My right side is the one that was affected with my first "noticeable" episode of ms. I have wondered if I have bone spurs or have broken a bone in my foot.....
—Guest cwebst01

MS Pain

MS for 20 plus years now, first 2 attacks the worst, now it has morphed a pain syndrome. Lower back (also bulging disc), feet, by far the worst of it, legs and neck. Tried every med for pain, and settled with Opana which I switch with fentanyl patch, because it makes me nauseous and Norco 10/325 when it gets bad. Non opioid meds were useless and made me a zombie. I'm glad my neuro is not afraid to Rx opioid meds, they are the only ones that work, but cannot take too much because they make me sick, but work. Tried cannabis, made me feel worse.
—Guest paul

pain and skin itching

I have been back and forth with test for a month my mri's and ct scans are normal but my sedimentation rates were high and c-reactive protein were abnrmly high. I have numbness right hand and toes, pain in my hands and feet. Trouble with extreme exhaustion then insomnia, back pain, blurred vision, at times and dysphagia, dizzy off balance and trouble breathing at times... doctor wont send me for lumbar puncture. I know its MS. I cant work out anymore im too tired or weak or in pain This is driving me crazy. I dont want to be disabled before they find it. God please help.
—Guest chaneta

MS Head and Neck Pain

For the past 4 days I have had the absolute worst migraine, spasm, type pain on the right side of my head and neck. They are saying it is TMJ...I was diagnosed with that before I was diagnosed worn MS in 1990. Well the Motrin 800 had torn my stomach up but had helped me deal with it... until tonight. Supposed to last 6 hours, 1 hour after I took it, bamm... its back. Suppose I'm lucky I just started having these symptoms but I really think I cannot take the pain anymore. Is there help out there? The pain on a scale of 1-10 is a 20 for me. Never ever had such pain before. Worse than childbirth.
—Guest steknimorfer

MS patient for the second time

No one totally understands what you are going thru. They expect you to be all cheery and happy, but how can you when you feel so much pain al the time. From not being able to do the things you used to, like just walking around the neighbor. It's depressing. And having to give yourself shots every day is torture.
—Guest KO

ms is painful everywhere!!

I was daiagnosed with ms in 2008 , I had my first grand mals seizure and in while emergency room I found out was pregnant. Long story short I been on rebif since september of 2008. Since then I have had memory loss, numerous seizures including partial, complex and grand mals. Worst has been my pain! My back constantly hurts, sometimes feels like something sharp is going into my back. My legs hurt sooo bad as well at times. Feels like little sharp things biting everywhere on leg/ legs. Also have severe pain in back of neck at time...... just to mention a few! Recently I was told I was having another exacerbation, so was put on solu medrol infusion for 4days. I am now awaiting clearance to switch from Rebif to Gilenya. Every since last day of the steroid I have had a constant pain and discomfort in the top of my right foot. Only way to describe it is- feels like something is pulling top of my foot in to different directions...... Has anyone else experienved this
—Guest april

HAD TO GO OFF BETA SERON DUE TO COST

I'm right with you as far as the wobbly behind a walker...maybe I can alleviate some of your stress and back away from the ledge. :) If you contact Beta Seron directly and explain your circumstances, most times they will absorb the cost or reduce it to the point where your portion is $25.00. I have primary progressive MS which there is no medication for yet the doctor still prescribes "just in case", but I don't notice it doing anything...the most I can do is treat all of the symptoms with a bunch of other meds. Just look for the 800 number and give Beta a call.
—Guest --Debbie M

never stops

I was diagnosed in 2006 when I was in for back surgery, now that the MS is rearing it's head my back pain has increased also, non stop for both now. I thought the back pain was bad.....the MS is horrific and non stop......at least with cancer I would it would finally end.
—mydogyuma

MS or FM

My doctor was doing the work up cause he thought I had MS I'm in serve pain all over I have burning sensation going down my legs and arms. I woke up one morning in my left foot felt like it was a sleep for 3 days. I now have moved in have seen neuro first time, he said its FM. Gave me Neurotin in sent me on my way. I'm confused because I'm very active in now I can barely do anything, from running to walking, and the stairs in my house is a chalange. My kids keep me on my toes but I always forget the small stuff so now I have to write stuff down to remember. Any suggestions would be greatly apprciated. I'm only 35 don't want to feel like I'm going crazy anymore, as half of the doctors make me feel.
—Guest Tri 35

severe pain

I have been fighting this for years. Have been told im everything from a hyperocondract to wanting attention. I have finally been diagnosed with ms. Put on copaxone, oxycode, and mscontin. Alot of good that does. Mind you all very small mg. It works for a few minutes then pain is back so bad i pray god will give me the stength to cut my spinal cord just to stop feeling the pain. I can not stand on my two feet. The pain is so horrific it shoots straight up my back. I cant talk without slurring, misusing words, or even what im doing. I wish everyone who doesnt know what ms is would have to endure it for one month. Just to know what it felt like to pee on yourself because you have no idea you even had a full bladder because you cant feel it. Or to feel a full bladder and are unable to pass it. Or the fact you cant even swallow. Lets not forget your legs dragging behind you because it feels like there are millions of pounds strapped to you. And the pain so bad all you do is lay and cry.
—Guest buttaphlygurl

severe pain

I have been fighting this for years. Have been told im everything from a hyperocondract to wanting attention. I have finally been diagnosed with ms. Put on copaxone, oxycode, and mscontin. Alot of good that does. Mind you all very small mg. It works for a few minutes then pain is back so bad i pray god will give me the stength to cut my spinal cord just to stop feeling the pain. I can not stand on my two feet. The pain is so horrific it shoots straight up my back. I cant talk without slurring, misusing words, or even what im doing. I wish everyone who doesnt know what ms is would have to endure it for one month. Just to know what it felt like to pee on yourself because you have no idea you even had a full bladder because you cant feel it. Or to feel a full bladder and are unable to pass it. Or the fact you cant even swallow. Lets not forget your legs dragging behind you because it feels like there are millions of pounds strapped to you. And the pain so bad all you do is lay and cry.
—Guest buttaphlygurl

The pain of ms

Imagine having all the ms symptoms, urinary retention to the extreme, numbness & tingling, heat intolerance, fatigue, pain in all 4 limbs, blurry vision, muscle spasms & knots in arms & legs....the list goes on and never getting a diagnosis because they can't see lesions in my spine yet. It is so frustrating and can be derpressing. I get it and I'm not even diagnosed yet. I can't work because of the fatigue and I am on 1600mg of gabapentin a day. I'm only 53. If anyone says there is no pain with ms they are absolutely misinfomed!
—Guest D Blair

i know the feeling

i used to write, now i cant write a single word, am a strong person but i cant take it anymore and i cant show my weakness to my family i dont want to be something they worry about, am only 20 years old i have been diagnosed with MS a year ago and the PAIN omg its annoying and painful at the same time and above it all the docs tells me i might have a clout in my legs with the needle and tingling sensation i have the burning in my feet and hands all the time, one med that helped me a little with my pain is lyrica but it takes time to kick in, and when i ask my doc to increase the dose cuz its not helping anymore he just talks to me like am a junky i wish there were more understanding of the pain
—Guest Maha
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