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

Responses: 296


Updated March 19, 2009

how come i thought all this was normal?

I have been living with chronic pain,numbness,tingling,and every single symptom tht you all describe here,from the time I was very young,thruout my teens,my twenties,and finally at 29,I just couldn't take it anymore.unfortunately. for me,this was in 2003,when doctors were going crazy,diagnosing everyone and their nieghbor with "fibromylgia ".and then adding fool to the fire was tht I was being told by my mother,sisters,aunts and a bunch of others,tht my mysterious pains,inflammation all sounded like fibromylgia, and becouse I told the Dr it ran in my family,he must have used tht. To determine he didn't need to do anything else,but document just the main fibromylgia,pains,apparently he didn't listen to all my other complaints tht have no relation to fibro.so,I am now under belief,seven years later,tht I was misdiagnosed with fibromylgia. Fir years,I have been dealing with not just muscle a he's here n thr,and stiffness,swelling in joints,hands feet,but also pins n needles in feet,that
—Guest mel

All Folks with m.s.

Keep your chin up, When life gets tough you go to fight back. If not i feel your lives may be over. This is "Life" Weaning off the weak. So only the strong will survive. You must prove to your higher power, Or yourself for that matter, That you are worthy of a fortuitous and lavish future with your amazing familys. If being happy, (True Happiness) is what your heart desired. Then my prayers are with you on your journey of happiness.
—Guest Bob/Demott

chronic pain

I was diagnoised with ms in2007 it has been a roller coaster ride I take rebif injection.my body is in constant pain in the beginning I was on so much medicine in addition to the rebif.lyrical.loratab.oxycodone.u name it I was on it.but I got tiered of feeling like I was in a zone I mean I was here but felt like I was walking in a time capsule so I stopped takeing all those drugs I just do my rebif injections my body is in constant pain some days r worser than others but I have to manage I take over the counter pain med.with sleep help.I figure if I'm asleep the pain won't b so bad.huh.that's until I'm awaken with pain my neck an shoulders..wow!and my legs I try not to complain..but I am glad that I am able to vent on this page because if don't have ms.r the pain that comes with it..people don't understand they may sympothize by have no idea..and I don't wish this o any one..God bless u all..one day at a time:-)
—Guest bev


I have had all kinds of test and none come up with anything. I know how alot of you feel. I have pain all over lightheaded,tremors, bladder issues , upset stomach , swallowing issues, vision problems ,headaches, fatigue, low vit d, loss of appetite and swollen neck but they can not find anything wrong. It has been 18 months and I have good and bad days. I just wish someone could shed some light on what is going on. As time goes by my bad days seem more and things are worse.
—Guest becca


I have been diagnosed 3 years and it does not get easlier. I weight training as much as I can, eat clean, go to physical therapy once a week, but I still feel like I'm losing the fight. I will not quit however. I don't think people around me understand what I go through. I'm in pain most days especially in my legs. I've learn to become an actress with the smiles and laughter but I still have pain. When the pain is bad, I withdraw from people. emotionally as well. When I do that, people don't understand what's wrong. All I can do at those times is focus on taking care of me and getting me through this time so that I can start feeling better. That's my advise.
—Guest Angellica

never ending pain

I have ms found out 2yrs ago I first found out when I had this tingling feeling in my foot and it never went away it moved up to my knee then next morning my left hand to top of my shoulder was tingling never had an attack again then all of sudden I start to hurt everyday now my hands shack I looked it up its part of ms can't bend my head down feel like I get shocked all down my back my feet on my heels hurt so bad now to stand on my vision is blury at times then one night i woke up in so much pain in both legs couldn't bend stand walk had to call ambulance I'm 28 and neve r thought I would be going through this I hope one day they find a cure.
—Guest faith

living with the pain

Hi, I too was diagonised with MS nearly 2 1/2 years ago at the age of 56. Like all of you guys with MS the pain is terrible and trying to get around on really bad days can be a real problem. At least I have a walker that helps me stay on my feet and not on the ground. Only take medication for the back pain, which I might add only takes the edge off of it. The most annoying thing that is happening to me at the moment is the severe burning behind the back of my knees when I sit in the recliner or when I go to bed at night. Would like to know what helps that problem. All in all, I say to my self each and every day, that there is a lot worse people suffering than me in the world, and if I wake up breathing every morning, it is another day, and hope that it is a good one.

when there is no end try God

my pain is there but god was there before the pain. i ache constantly. lossing my memory and thoughts daily. i however found one answer that would beat all other serins. i looked to the hills from which cometh my help all my help come from the lord. he lives in my heart and makes pain toleriable. it has not gone anywhere, but i cannot allow it to determine my fate nor my future.
—Guest sabrinatrusting in god


I had optic neuritis about 1 1/2 years ago and after lots of MRI's and spinal tap- i was diagnosed with MS, I also have Rheumatoid Arthritis, and Psoriasis- (joy) so today i had a regular appt with my rheumatologost- he told me he thinks i have fibromyalgia ??? I have pain all over - some days I don't think I can get out of bed-is it just the MS or also Fibromyalgia??? Help
—Guest carlene

fighting to stay positive and creative

I was diagnosed 2 years ago with M.S. I have had the electrical shocks from my neck down my spine and into my legs. have experienced the burning in my legs arms hands and torso. But the worse right now is fighting the fatigue and I have severe pain in my left arm from my shoulder joint all the way down worse is around my elbow 3 inches either side of the elbow the pain is so bad it wakes me up at nite and my arm is numb but the pain is so bad I get sick to my stomach. I wish there was something that could help this I have tried Montel's diet, I think that what helps one person doesn't always work for all. I would be open for some ideas on what others are taking or doing for the arm pain. I find that staying busy with the mind helps alot, but not at night time when it attacks so bad.
—Guest Debra

I hurt

I was diagnosed with MS in August of 2011. Since then and before I was diagnosed, I have experienced leg and hand aches, migraines, loss of vision. Left side of my face also losing function. Started out in July of 2011 with my legs from my hips to my toes going numb. I've had such a hard time dealing with this as I am 31 year of age with a 10 year old daughter. It breaks my heart thinking one day she may be caring for me and that is not how it is supposed to be. She is a strong one and knows of MS as my sister-in-law also has it. A very big girl she is and she shouldn't have to be. I feel as if I have taken her childhood away from her. I will be strong for her on the outside but not sure if I can hold up on the inside...
—Guest chelle


Hi, i am 36 yrs old, i have ms. I have such pain at the moment in both my legs and forearms, feels like i have pulled all my muscles. Its also a hot feeling. I got up now to discover its not easy to walk. I get so upset and angry. Just want to scream!!!
—Guest Janeen

So much pain

While reading all of the entries there are so many That I have the same. I was dx 10/2003 and just a few years ago I started having major left shoulder problems and I just wanted to die. I was told I had Bursitis and had surgery 7/10 the surgery Did nothing still major problems then I was having problems with left elbow and wrist thought it was work related had surgery 7/11 for carpal tunnel and ulnar nerve. The pain is just getting worse by the day. I take percocet everyday but That doesn't seem to touch it I also take Cymbalta. There is so many days that I just want to give up
—Guest CRISSY79


I have almost all bulging disks, burning in the back, chronic fatigue, inflammations in the knees and back, muscle aches all over, weaknesss. but have not been diagnosed with MS. Sounds like all of my symptoms.
—Guest lorraine

My pain from MS

The worst pain so far is the trigeminal neuralgia pain. For years I've had whole body pain; before MS was dx'd it was thought to be fibromyalgia, but then I went blind with optic neuritis pain and they found the MS lesions in my brain and spine. My upper back, neck and lower head hurt all the time with movement; they are stiff and sore. Once I had pain from my elbows to my fingertips that felt like a tourniquet was shutting off the blood supply while my arms were in ice water. Neurontin took care of that and it didn't return. The worst to me, though, is the chronic leg and body pain that wakes me up every night, caused mostly by my muscles getting stiff as I sleep. What's worse than all of this is that nobody wants to treat the pain with anything that works.
—Guest Patty
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