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Julie  Stachowiak, Ph.D.

Multiple sclerosis IS painful. So there.

By January 6, 2009

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Okay, here goes. Raise your hand if you think multiple sclerosis (MS) is not painful. Keep your hand up if you actually have MS.

I guess that there may be a couple of you out there with MS who are saying, "Pain? Whaddya mean?" However, I am willing to bet that (like me) most of you have felt pain as part of your MS experience, whether it is from the "MS hug," severe tingling sensations or optic neuritis.

The pain that comes along with MS is different for everybody, both in manifestation and severity, given that there are over 50 symptoms of MS - most of which could have a pain component. Surprisingly, it was only in very recent years that the "experts" believed that MS brought any form of pain.

Read the full article (while you shake your head in amazement at that last statement): Overview of Pain as a Symptom of Multiple Sclerosis

Comments
January 7, 2009 at 1:16 pm
(1) jo says:

Judy, Just want to say thanks for talking and lisening to those of us who sometimes dont have anyone else who will.

January 8, 2009 at 3:20 pm
(2) barbara says:

thank you. if one more person says i look well, i am not sure i can be responsible for my actions. yes, there is pain, pain that on a good day is barely tolerable, pain that on a bad day will suck the lifeforce out of you (hugh laurie-house) i don’t think i have ever heard a better description. thank you, thank you, or helping to make this problem known.

January 8, 2009 at 8:48 pm
(3) Sherry says:

Thank you for mentioning that..I was d’xd in 1995, but I believe as others soemthing was obviously happening years before being d’xd.
Even though through the years I have had various symptoms occur. My pain and spacticity have stayed with me like it definitely likes me..not in a good way of course. Mine at the present time is located in lower trunk area, including back, hip and pelvic area and legs. I am on Neurontin 300 mg. 2x a d. and Baclofen 3 x d. And doing stretches 2x d. ouch…now that’s an experience to realize how far your range of motion.

January 6, 2010 at 1:49 pm
(4) Charles says:

At least ten specialists have, over the years, said I did not have MS because I was feeling pain. This goes way back to the 1970s. Even just four years ago a neurologist gave me the same reason for doubting I had MS, this eight years after I had MRIs that conclusively showed MS scarring and were reviewed by four separate neurologists. MS hugs and leg spasticity are my main areas of concern. Thank you for your forum. I only just discovered it. Kind regards to all, Charles in NZ.

January 6, 2010 at 2:04 pm
(5) AA says:

I know a neurologist that needs to see this article!

January 9, 2010 at 8:37 pm
(6) nanci says:

I am 42 yrs. old and had MS symptoms since I was 20 beginning with ON and tingling in my legs. I have experienced a wide range of pain from mild discomfort to excruciating torture in about every part of my body at some point in my life. Sure, there’s been hours when pain is tolerable w/out Rxs or OTCs and then days when the only part of my body not feeling any agony are my eyelashes.

Pain presents itself in a multitude of variations – sharp stabbing pains, redhot blowtorch isolated pain, feelings of being squeezed into 3 sizes less by a corset, deep throbbing pain pulsing deeper and harder every half second in my head, having the sensation of 1,000s of maggots embedding themselves in my leg muscles, and my favorite – having EVERY nerve ending in my body stand at attention lit up with electrical zaps on-off-on-off-on etc. like a Broadway marquee. I could go on, but I won’t.

There’s no sense in complaining. It doesn’t alleviate the pain; it only makes the ordeal worse, bc you are focusing on the negative.

My advice is to think happy thoughts, listen to peaceful music, laugh, smile, rent your fav comedy movie, hug someone you love, pray and find a good nerve pain reliever like Neurontin or Lyrica.

Listen to your body. Really pay attention to it. Do certain foods make you feel better or worse? I found out that if I ingest a trace of wheat, my nerve endings start screaming at me throughout my system within 20 minutes after introducing them. I am not allergic to wheat. However, my body let’s me know it doesn’t like wheat at all. So I avoid it as much as possible.

There’s too much to do in life to get bogged down by pain. My 8 yr. old son and husband need me too much. Believe me, I’ve had my share of pain. I deal with it every minute AND it isn’t easy.

My latest challenge is confronting this super-sensitivity issue. I hurt/pain if someone pokes, touches or brushes against me – especially my legs.

Can anybody else out there relate to my experiences? Write back.

January 16, 2010 at 3:44 am
(7) murphy says:

Anyone who has ever had an MS muscle spasm (that quickly turns into a muscle cramp) knows that MS is indeed painful; very much so at times! These severe cramps leave the muscle they affect sore for days or until the muscle once again finally relaxes.
There is also the tingling sensation that becomes an electric shock pain from time to time also, not to mention eye pain, ear pain and the list can go on, and on, and on…..

February 4, 2010 at 2:58 pm
(8) Cari says:

I’m an MS newcomer just Dx 10 months ago!
I have already had optic neuritis twice! I’m wondering what the sensus is on the meds that work the best! I’ve been taking Avonex and my Dr may want me to switch if I have another relapse! I’m 31 years old and have a 5yr old daughter to keep up with. Hope to get some feedback!

December 14, 2010 at 2:04 pm
(9) Deb says:

I’m so grateful there are other people like me, the last time I went to see my Primary Care Dr, he wasn’t in so I half-heartedly settled for his “fill-in”, , After going through the whole shmeel, (she must not have looked at my records), she had the nerve to say “MS IS NOT PAINFUL” mind you this is after I complained of the 2 bulging discs in my neck, a numb thumb, and neck and shoulder pain for 2 years straight no break in between, 2 years straight. She might as well have looked me in the face and said You are a Liar” that’s what it felt like.

March 15, 2012 at 4:07 am
(10) Angela says:

Ok Nancy ……..my legs hurt so bad I have had it for 11you years now….I know what your going threw ….my legs hurt even worse when I have a flare I can’t walk…I get sent to the er and they just think I’m seeking pain meds….so now I pull up that ms does cause pain then they want to treat me ….but trust when I say its not easy…….contact me any time……

503-410-4484
Angela

March 15, 2012 at 4:07 am
(11) Angela says:

Ok Nancy ……..my legs hurt so bad I have had it for 11you years now….I know what your going threw ….my legs hurt even worse when I have a flare I can’t walk…I get sent to the er and they just think I’m seeking pain meds….so now I pull up that ms does cause pain then they want to treat me ….but trust when I say its not easy…….contact me any time……

503-410-4484
Angela

July 17, 2012 at 5:49 pm
(12) Diana Benton says:

I look fine. Unless I’m having a flare up u can’t tell. I don’t talk about the pain so u don’t know. What u don’t see is when I excuse myself to the restroom for a break bc it hurts so bad. U don’t c my sleepless nights. Until u have this disease u don’t know. So u can’t judge. Am sorry momma I never understood until i was diagnosed a month after ur death. I had a severe flare up n almost joined u. People plz don’t judge I did n now I know. It’s no joke!

November 10, 2012 at 8:06 am
(13) jeff hodapp says:

hell yes it’s painful. people in the us hate disease and blame the person that has the disease. they are so afraid of illness, they deny its existence. easier to think that it’s a personality disorder so they don’t have to feel guilty about their negative behavior. eugenics is live and well in the us. i hide my illness because my emoployers dispose of the chronically ill.

ms is terrible. there is terrible pain until the nerves fatigue, then numbness. i always drop things and cut my feet, stumble and fall and amble along and fall down. i won’t go into the crap i’ve heard from others.
they don’t wake up screaming from the spacitity at night, throw up or try to dress with one dead hand and one numb hand.

the medical expenses have reduced me to poverty.

January 19, 2013 at 4:51 pm
(14) sea legs ny says:

Yes, my MS is also extremely painful. I feel as if my feet are being broken by an insane construction worker crankin up a crack-ass jack-hammer. It’s always my poor aching feet and then the pain slowly runs up my body. No one can possibly know my pain and no one particularly cares. Not even my family members. “Oh poor you, now can you help me with this heavy construction because I don’t feel like paying someone to do it., and I’d like you here Saturday at 7 in the morning cuz it’s freekin convenient for me at that time.”
Yes, that’s the way it is.

May 8, 2013 at 3:25 pm
(15) Crystal says:

Im not sure if I have this disease but the DR is doing a lot of test to fine out. I lose my balance, have headaches , have numbness on left side that is very strong. My brain MRI test shows that it could be! My Dr is doing a lot of test to confirm. I pray its not but I will deal with it! Im 61 and very active. I DO Have muscle pain in all parts of my body but only from time to time! Please pray for me as I will do the same for you! Thanks

June 7, 2013 at 9:10 am
(16) Derek V. Green says:

I am a 41yr old blk male, that 1 month ago, I was diagnosed, with Primary Progressive MS. It has truly change, my life. But through, it all I have a wife & family that luv me, n no that the devil is a liar, n the truth is not nowhere in him, n I serve a God that is a jealous God & I believe in healing, n getting closer with a man, that sit High, but looks down on the low, AMEN!!! So with this being said, I say 2 U, keep your head up, keep the faith, fight a good fight, because in the end, u will win !!! AMEN!!! GOD BLESS EACH & EVERYONE OF U!!!

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