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

Responses: 296

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Updated March 19, 2009

natalia

hi i am goin for my first mri on 26th of may i am so scared in case i have ms i am 44 years and have 4 children my youngest is 5 i carnt bare the thought of me having that horrible disease im in constant pain all over i find it very hard to get myself motievated i dont like going out .I went to my doctors last week ,my left leg was giving way and my neck was clickin i get worried in case it dosent go back i get pain in both my bum cheekss in my back in my feet my hands i sometimes get numbness in my left side of my fase i ictich my body al over especially my head i burn all over and sleep nearly every day when i drop kids of at school then im back in bed at nine my head has been hurting me this week ive been having some sort of electric in it but have had this happeneing to me since i was 14 doctor never new wat it was i just feel so hurt and im frightened in case i have ms .Anybody help
—sandy

not easy but possible

I am 30 yrs old with 4 kids and I was diagnosed with MS 15 days ago. It started with my legs going numb then within 3 days I was completely numb from the waist down. It has been a total of about 20 days now where I still feel numbness in my feet, weakness in my legs, muscles spasms in my back and abdominal. painful itching that comes and goes, and heartburn. I. have always been healthy so this is. alot for me out of the blue. At first. my husband was very supportive bu now it seems I am alone in this and he doesn't talk it or how I feel at all I. get sad from time to time when can't to as much or when I read information on the treatments they offer where side effects are as bad as the actual symptoms I'm having now so I'm strongly considering not doing the treatments. The only one who seems to understand what I'm going through is God and he is all I can talk to about my feelings. All I can do is trust him to heal me from this
—Guest ms.faith in God

I feel that even doctors dont know

11 years ago was told i had Fibromyalgia had all this pain in my chest such intense and crushing pain , had my back craced all the time all this pain and told that they cant help me . went through so much and just found out i have MS and that my first signs where from MS 11years ago, it went untreated for 11 years
—Guest Jodi

Finding valid information

Most valuable info re MS that I have found is book by Julia SCHOPICK "Honest medicine". It is a life saver.
—Guest John Logsdon

~chronic pain~

This is to the chronic pain post above. Rebif had me in pain ALL week, EVERY week, when I was on it. It also, almost killed me when it started effecting my breathing, the air seemed so thin, as if it wasn't even there.( I also have asthma....it was a completely different feeling) Since I've switch to Avonex, I only experience one bad day a week. I too, take meds to help me sleep through it. I know the shot into the muscle sounds horrifying, but it's not that bad. You may want to switch!!! NOW, to EVERYONE with MS, LUPUS, and FIBRO (I have them all) please listen when I say.....take GLUTEN out of your diet!!!! I know it's hard.....I still struggle with it, but by doing so my prayers have gone from God....please, just take me!!!! To......Thank you, fore I looked in the mirror today, and saw someone I once knew : )
—Guest mysticmoon

like the skin on my head is scraped out

its not a pain pain but an irritation of a sort like some electric shocks r going through the head, cant rest my head on any side
—Guest gijain

Life COULD be worse

I have had MS for nine years, diagnosed when I was 57. Along with all the body pains, my biggest pain/hurt is not being able to play with my three grandsons who have come into the world since my diagnosis. I pray they don't think that I "don't want to play with them". I would do ANYTHING to be able to run with them! But, life is good....I awake each and every morning.
—Guest dimples

"Theres no pain with MS"

Then there's the Trigimenal Neuralgia, my first 'REAL' symptom. It still comes, and more frequently all the time. These past two weeks have been sheer Hades. And best of all it has not only switched sides, but has now morphed - the entire side of my face into the left side of my head and down my throat. And (new) now I can't drink anything without the most excruciating pain searing through my gums, tongue, face, ear, head. Then when the electricity fades, the is the most dibillitating residual slam to all these areas. My eyesight has become increasingly worse over the past couple of years and yet I can't stand my glasses on my face. I've applied for SS disability after working 35 years of my life. I've been going thru it for 2 years, have 0 income, 0 insurance and yet they think I would choose to live this way to scam them. Do they really think I can work when I can't even remember how to sign my name. When I'm exhausted all the time. When I can't even do the things I love.
—GGsNonna

"Theres no pain with MS"

Went to a neurologist a couple of years ago and these are the words he said to me. I didn't go back! So much pain with MS. On an every day basis its the ants biting my feet and the "day after workout" pain in my legs. What I mean by that is that my legs look like a marathon runners. My muscle tone is awesome - hard as a rock. Problem: I haven't done anything more "workout" than walk to the mailbox in 15 years. But I do run a marathon everynight in my sleep. The 'charley horses' in my feet and legs that wake me up at least a dozen times evey night. Then theres the 'hug'. The fact that I can't sit or stand or lay down without moving tryiing to get the pain in my mid back to stop. This lasts for months. Nothing gets done - I can start it but within 30 minutes, I have to move around and the task just sits. Sometimes, I can't even wash the dishes because I can't stand there for 10 minutes without crying.
—GGsNonna

Sholder neck and left head pain.

I just went to the Doc's and was told I could take up to 4000 mg of tylonal to cope. I am taking two exceededra .migran tablets every 4 hours to control the pain whoever said MS doesn't hour doesn't have it it's 4:30 in the morning and I'm awake because of the pain I'm sick of everyone telling me is all in my head this shit hurts it travels fr place to place. It's in my gut the gas is unbelievable, going out is a night mare. Does it get Amy better or is it all down hill from here?
—Guest Sheryl B

relapsing remitting ms

Tara, you sound just like me. I had symptoms for years that were just brushed off by the dr,,,, but I switched dr's and they said that after a person has 3 episodes that more than likely it is ms. I had the spinal taps and mri's and thats how I got the diagnosis confirmed. I have new pains and symptoms come up all the time. I guess is a progress in learning. Good luck to you Tara !
—Guest kathy williams

M S Pain

I was diagnosed with ms 1995. It has gone in remission few different times now my DR. said i am in my last stage of ms my family,and friends dont understand what im going through i wish they did im always in pain also tremors in my sleep. My two hands hurt too now alott.
—Guest annonomous

misdiagnosed fibtomylgia

.. so as I was saying,I told him all my symptoms,and asked him about lupus,he just went along with it,he should have recognized tht something wasn't adding up,I understand tht primary doctors might not get it,bit he is a pain management/physical therepist,he deals with these illnesses daily,I don't understand,how e could have not caught this.so,I have basically been being treated for two illnesses that I am starting to think I don't have.ok, so here,I am, 37,we moved 500 miles away to get me to high dessert as its suppossed to help fibro.it has lessenned some issues,but now other things are acting up,like never before,ths has put me in er as I have no Medicaid for Idaho yet,and wont be able to establish primary Dr till April.thank you Jesus,for tramadol,gabapentin,heating pad,and a husband who loves me,and gives me several masseges a day, to her the knots out,and try and help my spine.it has never been this bad,I have all three things tht are wrong with my back,all acting up at.....
—Guest mel

misdiagnosed with fibro

Anyways...ok,so basically ontop of my most apparent,blatent symptoms,of pain,inflammation,fatigue,the underlying stuff tht had just been once in awhile,and just kinda irritating,started manifesting,and necomming very debilitating!this was in 2009,I began researching ontop,becouse people I knew with fibro didn't have ths other junk o was beginning to think I had lupus,becouse one of my friends had it,and she dealt with a lot of the same secondary symptoms,so I documented everything I had,and took it to my Dr,and told him I thgt I had lupus.he agreed thr was definetly more going on thn fibro,but becouse my bloodeork kept returning inconclusive,Medicaid refused to pay for me to see a rhumatologist.so,I just accepted it, and wrote it off as lupus,and tht has been documented in my records tht I have lupus,along with fibro.jump forward another year,I moved, had to establish primary care,in order for new Dr to keep me comming pain meds,I had to see a pain specialist.when he saw me,I told him
—Guest mel

thought i was only one

I tried to post comment before,but it wouldn't let me write anymore,and I hit post,phone died,so ill try again!!ok,basically,I'm 37 ,mom of two,and happily married.I have suffered from chronic pain, neuropathy,fatihgue,tremors,spasms,motor skill issues,cognitive issues,etc,etc,etc,all my life.I finally broke down,when I was 29,and told Dr everything, but he only heard a few key things,and fact half my family has fibromylgia, and it was just easier to assume thts what it was,and I didn't know there is a huge difference in the type of pain fibro people get,compared to ms patients.I also have a ton of secondary ailments,that I know now,tht they are all in line with m.s.,thy are not fibro,or lupus,simuliar but no where near wht I experience, you guys on here,your descriptions,are what I've had all my life,tht I didn't know how to explain,I don't feel alone anymore. After several years went by,and the secondary stuff,got worse,to piont it was auctually going from,annoying,.... Hold on...
—Guest mel

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