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

Responses: 439

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.

been suffering with Ms pain and lupus

I have had Ms and lupus not to mention fibromyaliga. I currently take 50 mg of oxycodone every 4 hrs. SOMA colozaplam ketrelick and still feel like my body and mind wanna pack it in fortunately I have a wonderful husband and family to support me but I need something stronger to cope with just daily life just once I would like to say hey it's all good please anyone can tell me what seems to be the best relief for this hell I live in doctors tend to think we are all living the same square box I just want to feel less pain been on copoxone gabapantin. lyrics all bad results please help
—Guest stacia

Tamara

Remit/Replase since 1997 I indured a year of vertigo…I had the typical MS issues, brain fog, extream fatigue, migraines. Now fast forward it's 2014 I have all of the above PLUS, extreme pain. on my left side… from my jaw, to my toes..on a scale of 1-10 somedays are a 10 when others are a 5….I'm wearing a leg brace these days… My Neuro, is of the thought that MS does not cause pain… I wish I could trade bodies with him… DUH…Pain is part of Multiple Sclerosis….
—Guest Tamara Alexandris

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

Occasional pain

I know that I am blessed because I don't have constant physical pain. but the emotional pain is always looming. I get SO frustrated at all the stuff I can't do anymore. Then something physical pain will pop up, like the MS hug. Lately I've been getting pain in my knees, too. Glad the med is keeping the trigeminal neuralgia at bay. There never seems to be any reason for any of it to kick in, so am always in fear of it. I really really hate being such a burden for my husband. Then there's the expense brought on our household. Jim has to work to pay for the changes we've had to do to the house. Since I need care when he's gone, that's the biggest expense. Depressing to see our savings plummeting, and knowing I can't add to it, except for the once-a-month SSDI deposit.
—Guest Renee

I understand

Im a single mom with 2 children.One is 20 and the other is ADHD .It's hard to take care him because i suffer from chronic fatigue and chronic back pain.The headaches comes and goes.I understand when people say that the are ashamed to tell others how the really feel.People tend to think that you look ok than you must be ok.Oh i suffer from constipation and stess urgency with my bladder and depression.does anyone else hve these problems.
—Guest Chinita Long

Leg pain

I was diagnosed in 1989. I had to stop working in 2003 because the pain in my legs was so bad. I have been bed-bound since 2009. I can no longer walk. It is too painful to sit for more than 2 hours and I can only sit in my wheelchair. I have tried many different meds to just take the edge off of the pain and nothing has helped. I have been on Copaxone for 22 years. I have no idea what it has done for me, but my body rejected any shot that contained Interferon. My legs are stretched 5 out of 7 days by a physical therapist. I originally had RRMS, but now deal with the pain and restriction of PPMS. Coping is a daily struggle.
—Guest tjdearth43

losing my grip on life

Guest Christian....hey...u r so blessed. I know it sounds crazy....but as I'm sure you all ready know...God has a plan...for you...for all of us....your symptoms sound very similar ...the hurting teeth also....I imagine your parents are in board with your care...I'm hoping...sweetheart..stay close to God...educate yourself....keep a few close friends. Love your life it is a gift..I care. If your ever in need to talk.....Dawn. here's my email
—Guest dawn

fire

I want to cut my arms off. I fantasize about this. Onset usually at night. The pain is so intense and can last for days. I can't even describe the pain. Fire, yes but that's not all of it. My sister asks me what does it feel like and I can't describe it except to say I want to cut my arms off. They say it isn't the MS. Anyone else have this?
—Guest fire

Severe Leg Pain

Leg Pain is something I have been dealing for years with my MS. For the most part I can deal with it. it is moderate to severe that most could not really live with on a daily basis. but when summer comes it gets much worse... 2011 and right now in July of 2014 it has topped the charts. I can't seem to get anyone to understand how bad the pain is... I went to the ER cause it was so bad and they told me it wasn't an emergency and I should call my doctor in the morning they did nothing at all, What is the point of going to the ER if they do not even understand the pain of MS. My doctor, is starting me on Solu-Medrol but that is going to be days before I see any relief. I am being forced to use phenergan in large doses to knock my but out so I can get relief and it really isn't relief. It is just putting me to sleep. Why don't people get the fact that the pain can be so intense that you cannot function in anyway shape or form I get tired of crying when it gets like this.
—Guest Vickie64
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