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

Responses: 296

By

Updated March 19, 2009

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.

what helps the pain

I see my dads gf having trouble moving around anything we can do to make her feel better
—Guest Damian

legs

We have followed all your articles since I have been suffering from MS for many years. Is it common among MS sufferers to have severe attacks of leg pain ? None of my pain killers could help relieve the pain now. It has progressed to daily pain, as soon as I put my feet down to sit. Pain attacks even in my sleep. They wake me up. Pls if anyone suffers the same kind of pain, can you share us any useful suggestion? Julie, we are very sorry to know that you suffer too. You have been very helpful to people like us. Thanks.
—Guest Herman May

A new and painful diagnosis- Neuropathy

I have had MS for 17 years. I did not realize my original MS attack site could hurt me again. The EXCRUTIATING pain goes from my wrist to jawline. It does not stop. You realize with MS it can get much worse quickly!
—cher57goingon85

ms nightmare

I was diagnosed with ms 5 months ago. I have had foot surgery for unions,knee surgery for meniscus. Finally a Dr looked far enough to find white spots on my spine,brain mri showed lesions and was diagnosed with ms lately I have had severe hip pain radiating into my legs and feet.scheduled for another mri this week.I as always have headaches which cause me to vomit. What brought me to this diagnosis was chronic pain. I also have degenerative arthritis,severe headaches and I went from not needing glasses to needing bifocals 7 years ago.if you know there's something wrong don't give up. Keep searching for the answer. Nobody knows you like you do.
—Guest patti

Drug companies do help w costs

I read suzhusseys post about going off beta seron due to cost. If that company doesnt have a program to help defray or give it to you cost free, I can tell you there will be one that does. Just talk to your neurologist and they can help you get on a program or on another disease modifying drug from a company that does. I was on free Rebif for 2 yrs till Medicare kicked in. It is so important to be omn something to slow this disease down. I am meticulous in compliance. I wont give the rats gnawing on my wiring (nerves) any advantage at all. No fuss about shots or anything else is going to keep me from doing my best to stay functional as long as I can!
—triara1

Not what I expected

I have had MS for over 40 years. The first 25 years were 'remitting/relapsing' and since the late 90's it has graduated to 'secondary progressive'. I realize now how fortunate I was to have a long run of manageable symptoms for so many years. I now live with a neurogenic bladder, self-cathing, loss of mobility and lots of recent brain damage. And a lot of pain in my hips, shoulders, back and especially in my brain. My cognition is so impaired that I stare at words like E_I_G_H_T and wonder what they mean. I never expected MS to become like this for me. Although people around me don't tend to 'get it', I know that getting plenty of rest, eating right and not overdoing it are the keys for me to enduring this disease and still finding some joy in life
—TBrentS

Background Pain

Dx in 1989 with RRMS and i have had severe optic neuritis pain, L'hermittes sign pain, muscle tightness pain and the pain of frozen toes that lasts from October through April every year. Nobody can see pain in another person but it does put stress in every day living.
—Guest oSandi

Pain Increases Immobility

I have been diagnosed with MS for 12 years. Thank God, I can still get around and use a roller walker for longer distances. For me, the pain of MS is very debilitating so my efforts are concentraled on getting rid of pain. For this, I use Arcixia 120 mgms once or twice daily, every day. This limits the pain to tollerable numbness in hands and feet and the whole of my right side. I also take Betaferon alternate days to control the attacks. I have strong faith that God will see me through each day, and He always does. He has provided me with a job I do from home, so I can still pay my bills.
—Guest Daphne Phillips

TO Much TO HANDLE ANYMORE

I have had MS/seizures since 2007, my life has been a roller coaster , very lucky to have a good husband he even proposed to me in the hospital right before my diagnosis, the told me they thought I had a large brain tumor on the R frontal lobe or MS. well ..the tumor may have been easier, I live in chronic pain now and have peripheral neuropathy funny thing I am on pain pills, gabapentin, dilantin, copaxone seems like the more they put me on the worse I get today I just wanted to pack a bag and walk away from my kids and my life...I even have a RN degree that I can't use, I used to say I have MS it doesn't have me well zoloft doesn't even fit the thoughts of sadness to go with that one so for everyone out there some day we will all have new bodies in heaven if we can keep our heads up and be happy.
—Guest Brandie

My Bones are Bursting!!

I was dx'ed with MS in 1994 at age 42, and went through all the "common" symptoms, weakness, fatigue, cognitive problems, bladder problems, extreme heat intolerance, these symptoms were NOTHING compared to the pain in my legs that began about 3 years in and has gotten nothing but worse to date. My first neurologist was of the "old school" and said pain is not an MS symptom. Thankfully my PCP was tender and proactive, he finally put me the fentanyl patch + oxycodone for the breakthrough pain. I have been able to live an OK life with this treatment for 18 yrs. I do not feel "doped up" To describe the pain would take more space than I have, it is leg pain that feels like my bone marrow is bursting out of my bones. It can be very capricious at times and travel all over my legs. One night recently I felt like there were pain "bubbles" popping all over my legs. Cymbalta has reduced one type of the pain that washed over my ankles at night and was totally agonizing and is worth a try.
—Guest Leigh Barlow

Your body tells you smthgs wrong ms

29 recently diagnosed at middle of last year had optic neurtitus in both eyes each attack 3 months apart tingling in my arms legs and stiffness and pain in my neck and lower spine stiffness tremor dizziness when move my neck up and down feel dizzy some days buzzing on my fingers bad headaches and emotional problems with depression insomnia loss appetite then weight gain pricking in my right eye like a needles gone through it very painfaul and Random stabbing pains all over different parts if my body always tierd optic neuritis in both eyes like a white vial on my eyes had that for a month and a half colour loss in my eyes minor but I rekon everythg about ms is the painfulness about this disease and Iam a lucky person I got in emergency and further test and seen 2 specialist then a greatfaul to have a fantastic neuro to get me in for spinal tap as had the sighns for the test and Mir to find out new that my body was telling me something is wrong and no it's not all in your head get help
—Guest Beck

looking for solutions

Hi Everyone, I have read many of the post here and my heart goes out to everyone in pain. I can understand to a certain degree because I was diagnosed with MS officially in December of 2011. Since that time I have exxperienced a number of things from mood swings to excessive depression. I really don't have alot of motivation to do anything and that is not helping me at all. I am experiencing pain in my lower back, migraine like headaches, vision changes since 2001, and the list goes on. But in all this I still thank God that it is not worse. My question is has anyone here experienced any type of activity or technique that has assisted them in feeling better. I don't know how to swim, but I went into a pool a few weeks back just to rest my body and I noticed that it really helped. My work schedule hs prevented me from returning, but I found it to be very relaxing and I do plan to return. I also experienced an infrared sauna and honestly it helped me feel a bit refreshed.
—Guest Tonia

Juke

I was diagnosed with Fibromyalgia 11 years ago; and before that it was both rheumatoid and osteo arthritis....tried all the "miracle" drugs like Viox, and they all had severe negative affects, so I'd drop them quickly. I tried Lyrica for FM and it was the same thing. I have perpetual pain (in the spine, all joints, muscles, and what feels like the bones, a very deep-seated pain, almost a burning; very dibilitating. I feel the FM is a catch-all phrase which doesn't cut it for me. I've tried morphine; too hard on the stomach; been taking Demerol for a couple of years, and I know it isn't good for my system, either. I took Cesamet for three years, but gave that up, too, as it is all-encompassing, the effects, I mean, and it makes it difficult to function daily. Doctors are in such a hurry to get you out the door and to see the next patient, and that is always frustrating; all tests show no results, ever. Where do I go from here. Thanks.
—Guest DD

pain..weird & (not so) wonderful...

i've been dxd for just over 6 years now & have been in constant pain since..i do suffer from back pain but tbh, that fades compared to the pain from ms. I take cocodamol, tramadol, amitriptyline,baclofen, butrans patches to mention a few...i cant honestly recall a day where i didnt have pain. i get all the tingling, numbness, nerve pain in my face, my hips & other joints hurt so bad..but thats life these days.i still try to do whatever i can but the pain slows me down so much at times i might aswell be going backwards. there is one little bit tho that kinda makes me smile at its weirdness..when i got to the toilet for a pee i get burning sensation in my feet & if its not my feet that hurt i get real intense pain in my hands..given a choice i'd take the feet option lol but as we all know, we dont get the choice with ms.
—Guest Ellen

better now, but it was horrible!

When I first came down with this I was having the most terrible spasms. They got worse and worse until I was screaming. The emergency room gave me cat scan but not an MRI, told me that the cat scan "proved" there was nothing wrong with me and treated me, most rudely, like a psychiatric case. Then they kicked me out, in terrible pain. It took several visits, and rude nasty kick-outs, before a doctor saw me that ordered an MRI. There is more to my story,but I can't tell it all right now.
—brigid_o
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