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

Responses: 445


Updated March 19, 2009


The pain that hits u all the time like electric shocks runnin through you. Being in the heat makes everything so much worse and the worst thing bout it is everyone thinks your makein it up. The only thing you can do is keep on living and know that what your feeling is what you are really feeling.

ms pain

i have cronic back pain all the way domn with exercize it seems to make it wose the doctor says the less i do the more pain ill be in but nothing seems to make it go away. Has anyone had cronic pain and its gotten better? if so what or how
—Guest lavonne

Not sure if it is MS...

My sister has recently been discharged from the hospital. She was admitted due to the loss of use in her left arm, left leg, and partial parts of right side. This all happened in less than 3 weeks from normal to almost bed ridden. They do not know what it is for sure, but are treating it as MS. However, she has no pain with this. She is on day 3 of a steroid treatment that has only helped her symptoms very little. I am wondering if anyone else has had this experience, as I do not know much about MS, and am wondering if that seems common to go so quickly like that? Her hand is also severely deformed and has a mind of it's own, she has only about 20% control of it. Thank you for any responses you have about this.

My symptoms of pain

Blurry vision, loss of hand function/ability to do most things, i.e cooking, cleaning, folding, buttoning. Vertigo(was in bed and felt like I had been drinking all day, not a drink in a whole month) Made me sick to my stomach, very dizzy..loss of hearing. Numbing/tingling in arms, legs, feet, hands, fingers, shoulder blades. Pain all the time all over. Hot feeling in legs and feet. Generally get sweats and get hot. Fatigued all the time. I get itchy on my hands a lot. Migraines.. After walking for not even 5 minutes, I get very tired. Legs feel so heavy. Small leg tremors. (feels like bugs are crawling inside you) I have trouble even swallowing water on some days. Bladder loss and constipation. Depression and I get really angry at times b/c it just hurts unbelievably certain days. Tightening in torso. I get swollen feet and hands all the time. I was always active in sports in school. It just sucks, 41 and 2 little ones 10/11. waiting on spinal tap now.
—Guest wreck_tangle

h1n1 adverse reaction

Nov. 9th, 2009 I had severe adverse reaction to H1N1 vaccine. Burning in brain, chest, legs, loss of voice, blood shot eyes, swollen lips and eyes, and limp arms and legs. I was not treated in er at hospital and as a result severe neurological problems, speech, numbness, tingling, blurred vision, right eye pain, mouth feels curved, hip pain, and painful joint pain esp. in left arm. It continues slowly to attack mental and physical state and havent been able to go back to doctor in year due to inability to work and lack of insurance now. They only thing that slowed down progression of what i have been told is probable ms and ra is alpha lipoic acid 300mg. by the brand KAL. Truly a lifesaver. Still looking for diagnosis but until then I take 1 to 2 tablets and it helps tremendously with mental capability and physical pain in joints, etc.


My diagnosis was 9/08. I am now on Tysabri (3yrs). After i delivered my son 9/22/10 I had a horrific exacerbation. My Neuro gave me plasma foresis (?sp). It was a miracle! I had no use or my arms or legs and within 16 hrs they began to move. My pain in my legs is constant and just started in my arms. Its as if I just lifted 1000 lbs and they get a heavy ache. It's awful. The tingling is tolerable but this heaviness and ache is wearing me down fast! No matter what... I Stand by my saying, I have MS it doesn't have me! Hang in there friends!!!!
—Guest Jcity88


last year knew something was wrong with me and went to neurologist /physicologist and he did different tests even a spinal tap and said that he did not think it was ms , went to a neurolphysiologist and they did more tests and it took them 3 months to discover that I had ms, so do not give up if you thinkif you have the sympthoms of ms , it is very hard to diagnosis . my doctor works with me and asks me questions every time I come in about the pains I experience, I take lyrica for the electricutions and a muscle relaxer for the cramps both pains usually happen at night and can be excruciating , my legs are starting to not work as well as they did last year, hope anyone who is experiencing pain try to find a compasionate doctor who is willing to listen and help they are still out there I found one in philadelphia god bless diagnosed january 2012
—Guest anna

relief for pain

i know sounds crazu but this WILL help i hv severe leg pain n chronic ms hug pain i put a bar of ivory soap under my sheets near my legs n takes the pain away no pain medicine works for me but my grandmother told me to try this Im optimistic n desperate n it really helped i hv completely reduced the intensity of the pain please try it it will not hurt n youve lost nothing it it doesnt work i hope i can help one peson w their pain
—Guest Lisamarie

Newly diagnosed and pain

I was just diagnosed Jan 5, 2012 and started Rebif treatment in March since I was diagnosed I have more and more pains such as the pins and needles, headaches, the hug, loss of strength in my muscles, fatigue I fight to wake up in the morning when I could just stay sleeping for hours just to keep myself from falling into a bad habit. I lay down and have a nap when needed however I have been off of work since Mar to let my body get used to the meds and now will be returning fear that I will get so fatigue that I will have to get a nap in some how this will be difficult :( however I know I have to because noone will pay my bills... and that life has to go one I thank GOD that I have knowledge in computers because if I go blind due to the glucoma and end up in a wheelchair due to the MS I will always be able to find a way to work :D
—Guest nicole

All Pain

Living with M.S pain all alone really sucks. You don't tell your friends how bad it feels when it flares up..... You don't let them know how the everyday pain in the legs and arm hurts.... You just go through life with a smile holding all the pain in.... When the burning legs flare up you just hide away for a few days until it lightens up... I have bin feeling the effect's of M.S sens 2002 .. My then girlfriend left me because she did not want to deal with my M.S .....I am 41 years old and have tried to find other people living with M.S to talk to... I am in Mississauga area... My email is bluejw747@live.ca if theres any one that just wants to talk....
—Guest Jeff Knight

im sure i have ms

i have been made out to be in depresson threw a work injury of my shoulder that why i have pain i have been in so much pain for 6 year when i was 37 started with my right arm couldn lift it pins and needles then the pain with to my legs they would just give way no feeling in then i had maybe about 40 dizzy spells a day massive headachs massive back pain all my muscles hurt all over all my joints always have cramps in my hands and feet the docs have put me threw so much and all mediations that dont work so many times i just wanted to take my own life cause it just getting harder to explain to people what i going threw i did tell one doc just jump in my body for i day and you tell me what i have going threw its taken me to look up my symtems im sure i have ms i going to get my doc to test me for ms at lets this way if i have it i know im not in the dark alone
—Guest fiona

diagnosis M.S./Fibromyalgia/Spondylosis

I too have been in pain with a heating pad, fatigue for years... started having problems swallowing in 2006, than I began to fall.. misdiagnosed; bursitis, impingment syndrom, angina, finally diagnosed with Fibromyalgia in 2010, stopped work, disability insurance paid for a while but wanted more info... been out of work for 2 years in Aug, living on child support, numb-tingles and weakness primarily on my right but on my left too, optic nerve has already been affected, fell and smashed my head pretty good, dr. ordered an CAT, found a lump, Mri ordered, no Lump, but Brain Flairs... after many a tests... diagnosed with M.S. just three days ago.. scared to death.. want to be able to hold my grandchildren I don't have yet, afraid to lose control of body functions, afraid Im nursing home bound... I am going to be 48 in Sept... and been off balance most of my life, I am hard of hearing, always thought it was my equilibrium, I was wrong.. whole body hurts always... hoping the meds work.. HELP

solving pain

I recently been diagnosed with ms about 3 months ago. But before that, I was diagnosed with fibromyalgia 3 months before that. I was dying in pain , I literally didn't want to live any more. I was on a lot of pain med. They worked, except I got addicted to them. So my doctor recommend butran patches. They are pain patches. And they are really strong. I've been on them for a couple months now and I feel really good 80% of the time . For those of you who suffer in pain, I know how you feel. And I highly recommend the butran patches. Hope this helps.
—Guest guest.steph

Not sure what to think

I have been through a lot of back surgeries and was hurt in Iraq 2007. This year I had a spinal cord stimulator put in my back, only to have complications from it and they took it out. Since March, I have had severe numbness, like my butt, legs, and feet are totally asleep. I wake up hurting and always hurts to walk. My lower stomach and left side of testicles are numb. My stomach stings and feels like needles are hitting it. I dont know what to think. I am on neurotin and Opana ER with MS Contin (morphine) fast relief. It takes the edge off but in the long run it is always there. The pain is excruciating. I constantly stay awake. When I urinate, I have to push and squeeze it out, I also pee more than 20 times a day. Are these symptoms of MS. I am 40 yrs old and dont know how to handle all of this. Can someone give me advice. Thank you all for sharing.
—Guest ray

Pain Pain Go Away!!!

I really wish that some of these neurologists could spend a day in our shoes! My feet feel like im walking on hot coals all while having little ants biting at them,my legs feel like someone is ringing out a towel between my calf muscles and my thigh muscles and they feel like they weigh about 100 pounds each..my left arm is like jello and as im typing this I have not gotten any more then about 3 hours of sleep each night for the past week..going to see my neurologist and willing to bet that she will refuse to give me anything to help with the pain!
—Guest Tara

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