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

Responses: 296

By

Updated March 19, 2009

MS announced by Trigeminal Neuralgia

Have suffered ungodly pain for most of a decade trying Neurotin and steriods no consisten immprovement. Fianally started a course of Cymbalta 60 mg that took me through two years of controlled pain management where I could talk, smile, and eat easily again. Two years later and a family life crisis sent my facial pain back through the roof. Now on a combined course of Cymbalta 60 nmg, Lyrica 500mg (200 mg in morning, 100 mg midday, 200 mg in evening). I have always been on LDN (a compounded low dose of Naltraxone which helps maintain improvement of otherwise constant rigidity and other fatligue like MS sysmptoms. I believe this may have interacted with the natuaral opiates of my body so this final pain management cocktail has been working consistent only reminding me of the dragon beneath the surface of my jaw waiting to turn me on fire again. I am hopeful the Lyrica will work.Since then diagonosed with MVP and hypertension (effects of the pain meds).So now I am taking 20 mg Benicrar
—Guest katherine

MS and pain

I have also been told by my neurologist that pain doesn't come from MS, well the Dr. I see for my back and leg pain (the only Dr. that would not give up on me since it took 4 years to find the root of my pain) has said that its not true, and has trust in me, so he prescribes my pain meds, and muscle relaxers. I have severe pain on the left side of my body, legs, and feet. I am on heavy meds, and do not like to be dependent on meds, but its a whole lot better then dealing with the pain. I hate that Drs. don't trust you, and new ones treat you like a drug addict which I am not!! I would love to see one of these jackass Drs. spend a week in ANY of our shoes then maybe they would understand what we go through each,and everyday. Its not fun! I did not ask for this disease!! None of us have!! So my advice is...if a Dr. does not want to treat you find one that will. There is always someone willing to help, and not treat you like an addict or say..."Oh hummm...MS doesn't cause pain...BS!!!
—Guest Rob

There has to an answer.

My symptoms started 10 years ago. Was told it was M.S. The neurologist I see now calls it a neurological muscular disorder. For the last 8 weeks I have been suffering so much.One night I was vomiting because things were so bad. I vision get horrid with blurred and double vision. Sometimes distorted. The pain and spasm in my joints, muscles and legs are so bad. I am in tears in the morning. This has been so bad I can't take it anymore. I only know of 3 lesions on the brain and a dymyelating main nerve in my head. I am on Fenytal patches and 3 percocets a day for another problem. It is not helping this pain. I don't think neurologist understand when you tell them.I am at wits end!
—Guest Susan

pain

I have so much pain in my right leg. Nomatter what i take it doesnt help. my worst symptom is migraines. Does anyone know what to do for it?
—Guest Kristy

PAIN!! MS & Sjogrens Syndrome

I started with migrains when I was 14 and it progressed till about 18 when the pain got about 50% worse. I started to have numbness and tingling in my r hand and foot. At the age of 23 they finally decided to do a CT scan and found some dark spots,at this point I was having pain and buring in my toes,horrible neck and arm pain,fatigue,weight loss,vision loss, trouble with my bowels and bladder, so they sent me for an MRI and found multiple lesions. IWas diagnosed with MS and started treatment but got worse . We did more testing and found I also have Sjogrens Syndrome . Having both I cannot be treated for either because it will make the other worse so we just treat the pain. The pain is horrible and nothing seems to work!! I suggest anyone with MS and severe pain to get tested for other diesases its very possible you could have more then one. If your doctor is not listening about the pain keep trying till you find one who will!! God Bless
—Guest Crystal

staceyv

I was diag on new yrs 2010. Its been almost a yr and I was a chronic pain patient for 5 yrs b4 all this. Now I have no idea what to do or how to deal with my pcp or neuro. There are days that my entire arms are numb but not just numb painfully numb I need help from my husband to get dressed some days b/c its soooo bad. To top it off now my hips lower back ankles are all in constant pain and my feet are starting to get that familiar tingly feeling. How do I explain to my doc that I am not crazy or drugf seeking just always in pain. I am sure some1 out there has some kind of suggestions for me. Not only do I have to be colmfortable enough to function for myself but I also have a son who is about to turn 4 on the 19th the same day I turn 30. I can't imagine how the next yr of our lives are going to be if I can't learn how to explain to my docs how bad it is so they can help me get on the correct amounts of meds for me. With out them thinking I am crazy . Any ideas? Pls help any1 help.
—Guest Staceyv

staceyv

I was diag on new yrs 2010. Its been almost a yr and I was a chronic pain patient for 5 yrs b4 all this. Now I have no idea what to do or how to deal with my pcp or neuro. There are days that my entire arms are numb but not just numb painfully numb I need help from my husband to get dressed some days b/c its soooo bad. To top it off now my hips lower back ankles are all in constant pain and my feet are starting to get that familiar tingly feeling. How do I explain to my doc that I am not crazy or drugf seeking just always in pain. I am sure some1 out there has some kind of suggestions for me. Not only do I have to be colmfortable enough to function for myself but I also have a son who is about to turn 4 on the 19th the same day I turn 30. I can't imagine how the next yr of our lives are going to be if I can't learn how to explain to my docs how bad it is so they can help me get on the correct amounts of meds for me. With out them thinking I am crazy . Any ideas? Pls help any1 help.
—Guest Staceyv

ignorance

Most people don't even know what MS is and most are not interested in knowing. My sisters don't even want to talk about it., that hurts.
—Guest Monique

Tired of Pain

Ever get tired of taking pills for every ailment we have with MS? Can anyone stop the throbbing burning head pain I have been experiencing this past week?
—Guest Dawn

jean

i cry everyday whit pain,i hate ms ,and i dont hate ,.i worked for 15 years whit ms in a home befor i got it my self.now i know way no one wanted to trun it hurt like hell to be on my sides ,im on my back untill i go to sleep.
—Guest jean

ms confirmed

yes joan u can. i was clinically dignoised in 1994 but the leasions did not appear until 2004.
—Guest joan

Pain

I was diagnosed with RRMS in 1999. Constant tremors, numbness, tingling and burning sensations like I was burned with hot grease, but I wasn't. Slurred speach at times, can't even say words or sentences as I want, words all jumbled or twisted, dropping things, tripping UP Stairs because feet don't raise to take a step. Now having major pain in left shoulder which leaves me unable to lift my shoulder high enough to take my shirt off at night, constant pain always. Went through rounds of x-rays and stress test to make sure it wasn't my heart and now I am just left with the pain. I have MS, it doesn't have me!
—Guest Valerie

kerry

I have daily, chronic pain in my back, neck, feet and legs. However, the most pain I endure is when neurologists tell me ms does not cause pain.
—kerryesh

Headaches

Yes, My MS first showed up in 3 day to 2 week migraines..of course no one made the connection until I was diagnosed. After being on Avonex since it hit the market, my headaches have changed both in longevity and they respond to abotive medications usualy. If not I bring out the big guns, Demoral. Yes for some MS is a life spent in severe pain, think about it...it is a disease of the CNS...your brain and your spine. My pain is weird. I am now going to a pain specialist. My pain is hips, neck and upper arms/shoulders and on any given day my eyes hurt when I move them at all or some bizarre pain that is severe can pop up on my body ANYWHERE!!!! I won't be graffic, but it can show up in weird places. Good luck and do not ever think you are crazy..you are not. Don't let people make you feel that way either, no 2 MS cases are alike...Good luck!
—Sonya.Frambach

MS Pain

Like so many others here I was also told that MS is not painful, despite the awful pain in my joints and bones. Finally, I asked my GP to please look at me as though he didn't know that I have MS and try to find out why I was in so much pain so often. He took me seriously and ran so many blood tests it took 13 tubes to get them all. Turns out I tested positive for a number of of antibodies indicative of Sjogren's syndrome, RA and +ANA. So in addition to MS, I also have features of several connective tissue diseases. I now see a rheumatologist in addition to neurologist. I take Cellcept and plaquenil, + various NSAIDS and untram for pain. Don't forget, once you have MS it doesn't mean you can't have something else too!
—Guest Laura

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