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

Responses: 439

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Updated March 19, 2009

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

IS THIS MS

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.
—paulheritage

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

Pain after 28 years of having MS

I have known I had MS for all most 28 years, and have dealt with the loss of ability to control limbs, eye sight, continence, and total disability after a surgery. I regain my ability to walk again after Tysabri treatment, but because of the medication I went through the biggest scare of my life. In the last two months I have had the wonderful experience of having the MS Hug in my back which has been a real pain, but lately the pain has moved into my arms. I have never had this type of pain before, and it is so severe that it has made it so whenever I grasp anything the pain is all most impossible to accomplish even minor tasks. This pain has awoken me up in the middle of the night, and I am now on medication for it but it hasn’t kicked in yet. I am now totally disabled, but reduced my balance which is unacceptable. I am stopping the medication, and just going back to working out to regain what muscles the MS took away again. It is hard to do at times, but trust me it’s worth it.
—Guest Dave

Pain after 28 years of having MS

I have known I had MS for all most 28 years, and have dealt with the loss of ability to control limbs, eye sight, continence, and total disability after a surgery. I regain my ability to walk again after Tysabri treatment, but because of the medication I went through the biggest scare of my life. In the last two months I have had the wonderful experience of having the MS Hug in my back which has been a real pain, but lately the pain has moved into my arms. I have never had this type of pain before, and it is so severe that it has made it so whenever I grasp anything the pain is all most impossible to accomplish even minor tasks. This pain has awoken me up in the middle of the night, and I am now on medication for it but it hasn’t kicked in yet. I am now totally disabled, but reduced my balance which is unacceptable. I am stopping the medication, and just going back to working out to regain what muscles the MS took away again. It is hard to do at times, but trust me it’s worth it.
—Guest Dave

had it 20 yrs

I was diagnosed at 27. Now at 47 small symptoms are worsening. Been married for twenty years- he is a gift from God. He won't let me give in or give up. I just retired in June 2011. I feel somewhat worthless but my two kids keep me going (13 and 16) Now, Iam starting to have pain in my feet and hands. I don't have time for this. Ms sucks worse than Ithought but I am still walking, shopping, doing wash,cooking, dam I have alot to be thankful for.
—Guest CJ

not diagnosed but have symptoms

I have been dealing with chronic pain, numbness, and other odd physical problems for a few years now. I have been to different doctors to try to fix these problems but nothing seems to come of it. Now I have gotten 2 mri's of back and neck with normal results. I am getting a brain mri without contrast next week. My pain has increased over the years to different parts of my body and has changed in different ways making it hard to fugure out. My new doctor (a rheumatologist) wants to rule out MS with an MRI w/ contrast but insurance won't pay unless it is without contrast. Has anyone else gone through this type of situation before they were diagnosed? Is it possible for MS or asimilar disease to be diagnosed with an MRI of brain without the contrast. I am worried that this will be another dead end. I may not have MS but I completely relate to all of the comments regarding the pain and the inabilty to function. It is so frustrating.
—Guest Tara Smith

treating entire body rather than symptom

My pain has been very tricky since I was 16 (Im 30 now), and have been told by every doctor besides the MS center doctors that I most likely have MS. My lesions are all throughout my CSpine and T-spine . The MS doc, not being exactly sure it is definitively MS (maybe for insurance help later on to not diagnose?) . Finally, after 2yrs of tests (almost died in MRI- freak allergy to contrast) I got to a pain clinic, and the pain medication worked for a bit, it was the first time in 10 years of not knowing what I had, that I got relief (but long term pain meds are toxic). I got lucky the pain doc suggested that we treat my entire body, rather than the symptoms, and he put me on a gentle cleanse, and by changing my diet, and switching to more holistic care, I have mostly pain free days and nights. I added lots of ginger, turmeric, cayenne and anti-inflam foods, and CBD extract(cannabis). Im off the toxic pain meds. Doesn't help all the time, but Im able to sleep pain free most nights!
—Guest alexis

pain

I was recently dignosed with MS at twenty years old, talk about a horrible feeling. The pain has been increasing drastically and vicodin doesnt help. I feel like i feel of a two story building right on my head. My arms hurts as well as other parts of my body. I feel embaressed to have this in my body so young I never believed i would have these problems and have no solution. I was extreemly depressed when i found out my own body was attacking itself, what a way to live.... Im sorry to everyone who has to live like this i pray the lord gives me strength to stay on my feet.
—Guest Scared_kia
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