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Pain and Multiple Sclerosis - Multiple Sclerosis Pain Experiences


Having the worse two days I have had since being diagnosed. I felt it only right to go out and find others whom may have a story similar to yours or even mine.

We are each individual canvasses which MS creates its own beautiful picture or a horror one due to the symptoms we each share.

Ourpaintings are all different but drawn by the artist known as, Multiple Sclerosis.

Multiple Sclerosis perfers to draw symptoms on women, but men are effected by throw monster artist.

Here are a few stories of pain and their individual stories.


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

"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

how come i thought all this was normal?

I have been living with chronic pain,numbness,tingling,and every single symptom tht you all describe here,from the time I was very young,thruout my teens,my twenties,and finally at 29,I just couldn't take it anymore.unfortunately. for me,this was in 2003,when doctors were going crazy,diagnosing everyone and their nieghbor with "fibromylgia ".and then adding fool to the fire was tht I was being told by my mother,sisters,aunts and a bunch of others,tht my mysterious pains,inflammation all sounded like fibromylgia, and becouse I told the Dr it ran in my family,he must have used tht. To determine he didn't need to do anything else,but document just the main fibromylgia,pains,apparently he didn't listen to all my other complaints tht have no relation to fibro.so,I am now under belief,seven years later,tht I was misdiagnosed with fibromylgia. Fir years,I have been dealing with not just muscle a he's here n thr,and stiffness,swelling in joints,hands feet,but also pins n needles in feet,that —Guest mel

All Folks with m.s.

Keep your chin up, When life gets tough you go to fight back. If not i feel your lives may be over. This is "Life" Weaning off the weak. So only the strong will survive. You must prove to your higher power, Or yourself for that matter, That you are worthy of a fortuitous and lavish future with your amazing familys. If being happy, (True Happiness) is what your heart desired. Then my prayers are with you on your journey of happiness. —Guest Bob/Demott

chronic pain

I was diagnoised with ms in2007 it has been a roller coaster ride I take rebif injection.my body is in constant pain in the beginning I was on so much medicine in addition to the rebif.lyrical.loratab.oxycodone.u name it I was on it.but I got tiered of feeling like I was in a zone I mean I was here but felt like I was walking in a time capsule so I stopped takeing all those drugs I just do my rebif injections my body is in constant pain some days r worser than others but I have to manage I take over the counter pain med.with sleep help.I figure if I'm asleep the pain won't b so bad.huh.that's until I'm awaken with pain my neck an shoulders..wow!and my legs I try not to complain..but I am glad that I am able to vent on this page because if don't have ms.r the pain that comes with it..people don't understand they may sympothize by have no idea..and I don't wish this o any one..God bless u all..one day at a time:-) —Guest bev

frustrated

I have had all kinds of test and none come up with anything. I know how alot of you feel. I have pain all over lightheaded,tremors, bladder issues , upset stomach , swallowing issues, vision problems ,headaches, fatigue, low vit d, loss of appetite and swollen neck but they can not find anything wrong. It has been 18 months and I have good and bad days. I just wish someone could shed some light on what is going on. As time goes by my bad days seem more and things are worse. —Guest becca

THIS SUCKS

I have been diagnosed 3 years and it does not get easlier. I weight training as much as I can, eat clean, go to physical therapy once a week, but I still feel like I'm losing the fight. I will not quit however. I don't think people around me understand what I go through. I'm in pain most days especially in my legs. I've learn to become an actress with the smiles and laughter but I still have pain. When the pain is bad, I withdraw from people. emotionally as well. When I do that, people don't understand what's wrong. All I can do at those times is focus on taking care of me and getting me through this time so that I can start feeling better. That's my advise. —Guest Angellica

never ending pain

I have ms found out 2yrs ago I first found out when I had this tingling feeling in my foot and it never went away it moved up to my knee then next morning my left hand to top of my shoulder was tingling never had an attack again then all of sudden I start to hurt everyday now my hands shack I looked it up its part of ms can't bend my head down feel like I get shocked all down my back my feet on my heels hurt so bad now to stand on my vision is blury at times then one night i woke up in so much pain in both legs couldn't bend stand walk had to call ambulance I'm 28 and neve r thought I would be going through this I hope one day they find a cure. —Guest faith

living with the pain

Hi, I too was diagonised with MS nearly 2 1/2 years ago at the age of 56. Like all of you guys with MS the pain is terrible and trying to get around on really bad days can be a real problem. At least I have a walker that helps me stay on my feet and not on the ground. Only take medication for the back pain, which I might add only takes the edge off of it. The most annoying thing that is happening to me at the moment is the severe burning behind the back of my knees when I sit in the recliner or when I go to bed at night. Would like to know what helps that problem. All in all, I say to my self each and every day, that there is a lot worse people suffering than me in the world, and if I wake up breathing every morning, it is another day, and hope that it is a good one. —chikate