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

Responses: 296

By

Updated March 19, 2009

Deborahzubair Shots

YES! I thought it was just me, and when I discussed with my neuro & reg dr. they just suggest cold paks... which do nothing. I have so many lumps that are sore to the touch, and my butt is getting so sore, it's hard to sit at times. I haven't done one shot that hasn't left a sore, red or bruised, lump for at least two weeks.
—kenjara347

MS Pain ALL OVER

I was diagnosed 10/2009. Originally I was getting lumbar steriod shots for four buldging discs. Within secs of getting the 2nd one, my entire right side of my face went numb. I thought it was the shot. AFter two brain MRI's I was sent to a neuro - After three visits - he flat out said 'You have MS." Very cold. Prescribed copaxone shot every day. I switched neuros & had another MRI & spinal tap a year later - same diag. - no new leisons. For the past two months I am in constant pain - neck, back, shoulders, arms, and mostly heels of my feet. Every time I stand up, after sitting or lying down, my heels burn with pain - like ice picks being stabbed into my heels. Somedays, the pain is so overwhelming, I just want die. I am a widow, diagnosed at 60, and my daughter & 2yr old grandson live with me. I watch him at nights, when she works. I love him, but it is becoming so hard to do. I was so active for the first sixty years. I was a very happy person (GLASS 1/2 full kinda person).
—kenjara347

Pain can be limited!

Its great to know that I'm not alone. I have PPMS. Just when I think the pain can't get any worse, it does! I am now on fentanyl patches with the strength increased every two months or so, even then I have a fight with the doctor who says it only proves that the patches are not working, yes they are, its just that they need to get stronger! I'm also on Tramadol, Amitriptylene, carbamazepine, paracetemol and anything else the doctor can think of, now sleeping tablets as well to help with the nightly spasms. When I was first DX with MS I thought it won't get to me, I'll fight it all the way! Now the fight has gone, I don't want to carry on like this for the rest of my life, at least that is something I can manage, the rest of my life need not be as long as I at first thought and I have managed to get hold of insurance in the guise of the small bottle of Nembutal, so I won't let it get too bad. I can recommend this. It helps to know it can be controlled! Even if its never used!
—anneveasey

run a round for ten years

I have been to so many Drs over the years. They told me to have a hyterectomy, that would help, pull my teeth, exercise, take vitimains, fibromyalgia, nothing helped. last week, I began to loose my eye sight, finaly got an MRI that showed 3 lesions on my brain . Dr says Ms. so for ten years I have dealt with terrible pain. I have pushed through and liveed my life as best i could. I have been on Gabepentin, neurotin, amatryipetalien, valium, nothing helped. Now the dr puts me on Iv' infusion for 3 days of solu medrol. that has not helped the eye sight i have lost. the only thing that works for the pain, my dr have me taking one evey 8 hours. Hydrocodone with apap.. ok, that works, so why won't he let me take it every 4 hours. this is nuts. I go to the Neuro on the 23 of this month. I have been to the eye institute, and family dr. No one understands . I want to live my life and I can do that with these pain meds. I have horses I wnat to ride. But the pain keeps me from that. Help.
—Guest Rhonda

i have m.s

I hate it wen I'm bad people don't understand how u feel and wen I go to the doctors to tell them I'm not feeling well they look at me asif to say u look ok they make me feel like I'm putting it all on wen I'm obviously not grrrrrr makes me so mad
—Guest carmen railton

Carol4400

At this time it's the pain in my neck and down my spine; I awake every two hrs. for potty stop; struggle to get back to sleep; I take 2 Neurontin ea. nite for sleep apnea and restless leg synd. Can't find a position free from pain. If needed I take 1/2 Triazolam in addition to 1 Neurontin, but now have been prescribed the 2 Neurontin and that is the only way I get sleep. I'm now taking Tysabri. My doc of 13 yrs. just retired so have a consult with new doc on May17. I've had MS for 53yrs. Had 3 sml. children; noone could figure out what was wrong w/me in 1959; not DX's until 1998; was totally numb on left side of head and body; this got me an MRI which brought about my diagnosis. I've taken Copaxone. I take Baclofen for spasticity; could not shop w/o holding onto a cart; have a cane but am trying to get about w/o using for now. Children supportive; husband in a nursing home for past 3 yrs. from strokes. My first symptom in 1958 was vision loss rt eye.
—CPalmeri

lamanhere

I have had MS for over 22 years, and I have had the same nurologist ....I had to go far and show him, through testomonies and and studies....that over 65%of MS patients exp. Opain. I will write more shortly...all I can advise is, take control of your health care.
—Guest lamanhere

lamanhere

I have had MS for over 22 years, and I have had the same nurologist ....I had to go far and show him, through testomonies and and studies....that over 65%of MS patients exp. Opain. I will write more shortly...all I can advise is, take control of your health care.
—Guest lamanhere

the pains real

i went to my doctor told him about my feet and legs i didnt likr taking the pills he give me but he said he woukdnt give me any pain pills so i guess i have to give into this pain
—Guest betty

MS Pain

I have been living with MS for many years and so far the pain hasn't gone away. Some days are better than others but I'm never out of pain. My right shoulder and arm are the worst. I have been from bedridden and couldn't move or feel from my neck down to back up and walking and resuming and fairly normal life with limits. You can live with it if you want to stay with your family. It's merely a choice you have to make. There isn't a medicine to take all of the pain away. Today I'm hurting so bad I barely can make it through the day. I have a daughter-in-law who totally doesn't understand and thinks I should do everything normal and thinks I'm lazy because I can't.
—Guest Kathleen

is it really ms?

Had a 3rd MRI 2 days ago... I'm having sever back pain that comes from between my shoulder blades and shoots pain all the way through to my chest. Also, right arm is constantly burning and painful. MRI Report- mild discogenic sclerosis Is that the same as MS? Any help or info would be greatly appreciated.
—Guest Liana

my niece

My niece was recently diagnosed with ms she is in the hospital now and has been in constant pain for 2 weeks she is 16 her doctors have her on pain mecidine every 4 hours so that she can transfer to a rehab center to learn to walk again her nurses want give her medicine when she's sleeping so when she wakes up she is in so much pain she screams most of the day by evening she can focus and by night she can sleep some then the cycle repeats itself this has been going on for 3 days it breaks my heart to hear her scream I don't think that the nurses appreciate her pain they are worried that she will become addicted. It is really an eye opener just reading all the stories and learning so much about this ms. Thanks for sharing
—Guest virginia

Pain Management

I was diagnosed with MS in 2005 and have had a few relapses since. The pain started 2 yrs ago with unbearable headaches. Then neck pain, tingling and numbness on the hands, legs and feet. When I am sitting down, I feel like I am walking on rocks and just a few weeks ago, I felt like needles were stabbing me on my arm. I am not a huge fan of pain releivers and I have explored several options (massage therapy, chiro, pain clinics, physical therapy, etc). The two things that I feel are the most effective for me is exercise and physical therapy. When I think of when I feel less pain is through exercise (yoga, cycle, running, etc). I continue to go to physical therapy where they show me exercises to strengthen my muscles and help with joint stiffness. I've come to the conclusion that this pain may not go away and possibly get worse. Therefore, the best way to deal with it is to manage the pain.
—Guest LM

lower back pain

ive had m.s since i was 17, i am now 24 and recently i have been getting lower back pains, like near the tailbone, i have no idea if this is m.s or bad posture or something like that but its really starting to bug me, excersize helps a little, i also get pain in my fingers and everywhere really. if anyone ever needs to talk i would gladley give out my email or facebook address, hope everyone is doing well
—Guest ashley

another option for a diagnosis

I was looking for info on pain in the feet for MS and reading quite a few of these posts made me want to tell you to look at a website - rsdhope.org - for those of you who have not had any relief from some of the meds you are taking you may be experiencing Chronic Regional Pain Syndrome. It's a terrible diagnosis but the website will give you TONS of information. I emplore you to look at it, it may help some of you immensley. I personally know the people who run the non-profit organization, they are extremely knowledgable and please, please, please read the site before you try any surgical treatments - they will make it worse. Thank you for the information you gave me, now I understand that the foot pain I am having could be related to my MS. Best of luck to you all.
—Guest nettescats
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