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

Responses: 445


Updated March 19, 2009

What is the most painful part of MS

The pain is so pain some days that I get really depressed and don't know how I can go on another day let-a-lone rest of my life.
—Guest marty

oh the pain

Constant pain in my face joints and legs....... :-( I barely have time to smell the roses without feeling the pain.
—Guest angelina

ms, mmmmm

trigeminal nueralgia, temporal arterisis, pain and tingling in my left leg and arm and fingers, feeling like a tight band around my stomach, feeling of my my windpipe being held in a tight grip, rushing to the loo, very slow flow, i cant pooh somedays, blurred vision, stabbing hot head pain, cant bear the cold on my face, lower back pain, sudden jerky movements, sleepless nights, cant bear my head on the pillow, multinodular thyroid gland, pernicious anememia, tight cramp like pain in my calfs, t hurts to walk, swollen sore tongue, fatigue[like narcolepsy] i just go, sudden bright light and loud noise, cant find words im looking for, concentration poor, very clumsy, sudden short dizziness, and i generally feel like crap, seen a rheumatologist, arrogant get, he not think this ms, seeing a neurologist in the near future, had blood tests not heard yet, having a biopsy on my temporal artery, oh well, got to keep going and stay positive, hard to do but i will, good luck to all us sufferers
—Guest Bernie

Ms and Me

When I was told I had MS, my first response was why me. Then I remembered a saying my mother used to say, but for the grace of God go I. I know the course this is going to take, the pain, numbness. headaches, not being able to walk etc. But when I remember what she said, she was right. There are people and children who are alot more worse off then I, so when I feel down I think about them. I know that as the days and years go by it will get worse and worse, if I can I'll try to think back to that saying it just might help. And when I think why me, the answer I get is why not you, are you better then anyone else? The answer is no but the solution is God. This is just my feelings about me. I want to send out a blessing to all the wonderful people that are here, and to thank you for listening to me. Life can sometimes get the better of you and it's nice to have a place to vent. God Bless You All.
—Guest Sharon

Thank you

I was told I had ms in September 2011. I'm going through my stages of acceptance very slow. I'm in so much pain. Ms hug the dr said. Ha. Hug? REALY ! Whatever my head feels like someone has put a press on all sides. My muscles won't quit twitching. The inside of my mouth is burning and my face is on fire and feels a crushing pain like my face is gonna pop. I walk into walls and alway hit whatever I'm trying to miss. I can't speak well. I am always in a tunnel. Or I get the strobe light in my head and eyes. Thanks for letting me vent.
—Guest Confused

Is it ms

OMG! I typed in all my symptoms in ask.com and this site came up can't belive it so many people with My same problems I have no medical ins so I have not seen a DR and don't know for sure what it wrong with me it's getting worse my body now hurts all over like the flu but worse than that my feet and legs so swollen and hurt so bad I cant stand or walk much my lower back is horrible pain my eyes hurt and I have blurrd vision I get tingling and burning then numbness in my face a piercing pain in my teeth that shoots up into my gums last only a few seconds but the pain from that brings tears and I hold my breath till it's gone. Not knowing what is going on with me I sometimes think it all in my head thus can't all be happening to me it seems stress makes all thIs even worse I keep it all to my self as I am not one to complain I am in my 40's and feel like I am 80 and don't know what to do?
—Guest PamD

MS pain

The pain in my feet feels like the bones are breaking. This happens in my hands too, well pretty much all over but those two are the most painful. The headaches are a monster to live with, as well.
—Guest Sarah


For months now I have been suffering very severe muscle spasms all over my body, there hasn't been a day that goes by that my whole self doesn't hurt, I used to be able to cope with this but not now, I'm so close to tears everyday because of the pain I'm in. My GP is going to do a good few blood tests to see if he can figure whats going on can this be a symptom of MS???
—Guest Fi

hurting emotionally and physically

I have been diagnosed with ms approx 7 years.My kids think I'm. Lazy but I. Just hurt all the time in. Multiple joints.I'm doing physical ttherapy which helps sometimes but I just hurt. And. Noone understands.
—Guest Pam

MS ?

For the last 7 years I have suffered from pain in various parts of my body. This has ranged from lower back pain , neck pain , headaches , electric shooting pains in my face , face pain , numb patches on leg and head , aching at base of skull , exhuxtion , incontinence , vision problems of which I was told I have scar begind my eye , pins and needles , fizzing sensation in legs , inside elbow and arm pain . Tightening of back of legs which is extremely painful . Grinding in neck [ sounds like its graing ] involuntry finger movements and loss of strength in hands , Restless toes , sweating especially head sweats , internal shaking , slight head nodding , loss of smell , hair turned allmost white within a few months of first attack , excessively painful periods , growing pains when I was a child espcially in wrists . Extremely sensitive to unexpected noise .. very jumpy ... over exaggerated response to sudden noise , difficulty recalling words and confusion ... scatty. Does any1 think M
—Guest J

Sounds like me.

I have had an angiogram, that's fine. I've had ultra scans on liver, kidneys and my bits. t That's ok. i've had several blood tests they have all come back fine. But the pain I go through is so sickening. I have pains up and down my right leg and sometimes left. I get feelings as if someone is crushing my bones in my arms, sometimes I feel it's muscle related. Now I have shooting pain one the right side of me up inside my neck to my head, which feels like the shooting pains in my legs, they feel like someone as put a red hot poker inside. I'm due an mri scan on my spine, I am hoping this will give me answers but if does not then I will start to think I have Ms.

Deal with it

cont..I was saying. I take Lyrica which i have found helps so much with the muscular pain-kinda like restless leg syndrome-which I thought it was.but no Along with all of the back pain I use a heating pad-moist heat is the best source-I am a therapist.the shots suck.Im sure we all agree.It is scary once you are diagnosed-I have only known for less than a year.but I knew something was wrong. I take my thyroid med.Which it is very important to get checked often with MS.If your thyroid is off it contributes to the fatigue.I have been diagnosed with ADD-Attention deficit disorder-I take concerta to help concentrate,memory, and motivation.I had Encephalitis as a child-which some say may contributed to the lesion on my brain.I take Xanax to decrease my high levels of anxiety.Now depression is very common with MS-But I refuse it. I refuse more meds,only trying to decrease more meds. My recommendation for pain mgt. is Core strengtening-Yoga is great,take VitaminC,B12. Have faith/Believe in God
—Guest WhyMe

Deal with it

I was an athlete Volleyball, Softball full ride in college actually.I was diagnosed with arthritis in my knees in 2004-I was perscribed Loratab then at age 20-I got dependent then statrted suboxone,I couldn't shake it-doctor din't know why-I tried hard so- then my short term memory started going (VERY ANNOYING)but much more annoying is the pain and fatigue.I have the electric shock in my lower back-thats your tingle sensation/nerves firing.being a therapist-I knew something was wrong.then found I have scoliosis,spondylosis,bulging and herniated discs,and spinal cord flattening. My pain management consists of my suboxone 2 8mg/day and core strengthening exercise-walks with my dog.I use heating pad on the HUGE knots in my back around my scapulas.I have Chronic Fatigue Syndrome Hypothyroid but I take 44 dose of Rebif and my Dr wants to switch me to Methadone-I dont want to.but I was approved for medicaid I'dbeen on suboxone for pain.butWV doesn't approve of suboxone for pain mgt,I take
—Guest WhyMe

Why Me

Pain..Some believe there is no pain with MS.Well there are some that don't.I have a history of auto immune disorders in my family, I never thought I would get MS.Yep just diagnosed at the age of 28.For a woman that is the most common age. Its crazy I have treated people with MS, and I see what has happened to them,SCARY! My short-term memory started to go, then I began to notice balance,tingling in my legs.Now electric shock when I bend my head to my chest-I also have hypothyroid, and Chronic Fatigue.The pain I experience the most is in my back.Didn't know what it was until the 3 tests that must be ran in order to get an actual diagnosis.MRI(and get from head through the entire spine)VRE-Visual Evoke Response test., Spinal tap. MS was found in 2/3.Thank God not my eyes. I was a college athlete.Strong as an Ox, now I feel weak the majority of the time. There is relief from this all/the muscle spasms,joint pain. DIet! Exercise!very importanteven if you have to exercise in the bed.I do.
—Guest OccTherpist/Casey

Genetic History of Multiple Sclerosis

For as far back as i could remember, my paternal grandmother had suffered from Multiple Sclerosis. I witnessed her face twitching, the numbness, her being wheelchair bound because she was unable to walk, and the electric shock type pains that would randomly course through her body. When I became a teenager, we found out that my uncle, my dad's baby brother also had multiple sclerosis. My dad has two girls, myself and my sister. It used to worry me because I figured that, with this disease being in our family, it was possible that one of us could get it. I am now 32 years old & have been experiencing random electric shock pains near my left eye for about a year now. Recently, my right foot near the arch has been feeling like ants are attacking it. I rub & scratch it in an attempt to soothe it but it doesn't work. it goes away, comes back, sometimes its worse than others. My left eye twitched for almost two weeks a few weeks ago. It's gotten to the point that I can hardly wear high heel
—Guest Mary

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