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

Responses: 296

By

Updated March 19, 2009

painful to be touched

I was dx's with R/R MS in 1996. I have gone through many symptoms. The one that I think is related to M.S. that bothers me the most is the unbeivable pain I feel in my feet when they are touched. I cannot stand tight shoes, etc... Biggest problem is that my hubby tries to snuggle and accidentally touches the botton of my foot and I come unglued. I can stand up immediately from a dead sleep. He thinks I am a cold bitch. I do not like thr snuggling..restricted feeling either.
—cwf1965

sorry folks, forgot:-

9. I also have very swollen ankles, feet, toes and fingers in heat...so much so that I now have stretch marks on my ankles and baggy hands....is this another sign of MS?
—Guest rolo

waiting MRI

Hi guys I have had numerous symptoms for over 12 yrs now, some of my symptoms include:- 1. double vision (I can actually feel my eyes pulling inwards and feel like I have gone cross eyed but they look normal). 2. Pins/needles in side of face, jaw, arms, fingers/toes. 3. Painful toes, legs (particularly thigh areas), arms, fingers, shoulder, neck. 4. Sudden cramping of calf resulting in both feet being pulled downwards, very painful, retracting right arm intermittently. 5. Burning eyes, also very painful. 6. Dancing muscles (usually top of thigh in front, feels like lots of small muscles dancing, also get in arm and in my side. 7. Shooting pains in head, if I press on the area it goes for a while. 8. Weakness in one ankle. 9. Cognitively not great, missed my mouth tonight whilst at chinese restaurant, daughter mortified...lol. It is only in the last 6 months that symptoms have become more noticeable. I have an MRI next month (Nov) as consultant suspects MS.
—Guest rolo

guest deb

have been going to dr every 6 weeks since march 4 mri's 1 spinal and alot of you must of had a virus that caused you to not be able to walk or talk and electric shock in right arm from shoulder to finger tips killer pain in neck lower back and left buttocks down leg ...... HELP me please ... 1 dr says sounds like onset of ms other dr just wants to keep seeing me every six weeks :(
—Guest deb

ms sucks

I have had ms for three years now and the pain in my back is so bad it hurts to stand. I have missed so much work from all of this how are we suppose to cope all the doctors want to do is give you more pills and medicines that mess up your body I wonder if the pain every stops.
—Guest antizzy

MS pain

I was diagnosed with MS in June 1997. Have had two MAJOR flareups that have severely affected my vision with diplopia. I also had minor ones along the way. I have gone out of my way to keep from reacting to stress which seems to be directly related to my flareups. That was a good policy … until this year which has been non-stop stress. Now I am having increased pain - and I, like so many others, was told there is no pain with MS. LOL! Decided to look up pain issues and MS and found your site. I am having spasms and heaviness in my legs; my gait is affected; and now I have pain esp in my left foot that feels like someone is stabbing it. Since my husband and I recently moved to another state, I no longer have a neurologist and now must start all over again. And I will fight tooth and nail before taking any pain meds. I am a nurse and I see firsthand what happens to people on narcs. That is so not for me. If this is a progression of the disease, I am not liking this at all
—Guest Jo

still haven't been diagnosed

I've been going to the doctor for a year, test after test for tingling, numbness and pain. Everything is normal...now they want me to see a neurologist and think it could be ms. they want to do a spinal tap. is there any other way to be diagnosed without a spinal tap? I've read all these posts and I'm so sorry for each of you and the pain you're in. So many of you are way to young to have to deal with this. People say stay positive but it sure is difficult to be positive when you hurt and are so exhuasted all the time.
—Guest tina

The pain is such a pain!!!

I am sick of feeling the ants that one person mentioned. The tightness in the hands, arm spasms and having days that it feels like a complete ovetload of pain from the neck down.. Prain fog damm I know that one. I was pre diagnosed in 2010 after an optic attack and fully fiagnosed in 2011 after another attack and many many tests. Wishing it would go away and hating things due to me having a very active career and wishing there was help so I could be retrained for a new career. This blows and kills your career and family life.
—Guest S. Michael

Stubborn Italian

For the last 6 years or so I've been suffering with numbness and tingling but always associated it to my back problems. Then a few weeks ago I lost feeling in my face vision loss ringing in the ear. So I went to the er. They checked me for everything except MRI I have metal in my back. I have to have it removed to get the MRI. Since then I have gone down hill. I'm clumsy drop things feel like I'm in a fog I keep getting that le hermites thing the neuro sai it's normal with ms. He's been treating me with the IV steroids now I'm down to the oral ones. This is all so scary and so much to take in. I don't want to be a bourden on my family. I have 4 boys ages 15,11,3,1. This is hard on them and I know my husband is stressed. Thank god for forums and places to go where people understand. Whithout them I may just be lost. Thanks for letting me rattle on. Hugs from jersey
—Guest Nicolemm

Not sure if its ms

I hava been suffering with dizziness, loss of balance, eye pain, extreme muscle and spine pain about 4 years now. My doctor thinks its ms but nothing shows up. She prescribed me prednisone to help with my attacks and it helps a lot. I know she thinks its ms, but I'm at my end and can't deal with feeling like I am.
—Guest Chris

Living with Ms and the pain

I was first dianosed with Ms in 2001 i was drivin and went blind in my left eye. i had all kind of test done .spinaltap and aMRI and it showed several leions on the left side of my brain aday later i could not talk and then i could not walk .i had to learn how to do all those things again and the pain is unbareable my head my legs hands feetand my neckand back is pain full but i inject my self every other day with betaserion and stay sick from the sideaffects Ms is no joke please god help the scientist to find a cure to help the ones who still suffers.
—Guest Cheryl B.

walking pain

I have no idea if it's MS related or not - can someone help me answer that? I've had a sharp pain in my heel (like when you step on a rock barefoot) that hurts so bad I find myself walking on my toes, which only draws attention to my gait, which is embarrasing, especially at work. I have no idea if this acute paid can be attributed to my MS or not. Does anyone know if perhaps it is and I should let my neurologist know about it?
—Guest Sherri

help please!

i have so many syptoms like ms but Im not sure someone please help? guest ashley I would gladly take your email or number for advice .Please help
—Guest mira

Had MS for 18 years

I have had MS for 18 years and not too many problems until 2 years ago. Now I have trouble with my right leg and limp, and my right hand is in pain and swollen. Specialists do not know why my hand is swollen and my finger deformed, they ruled out arthritis. Worse thing: I switched neurologists because my previous one refused to treat me with steroids for the relapse, well the new neurologist thinks I am faking it, that I do not really have MS! So I fired her and no longer have a neurologist, will se an internal medicine doctor instead. It is very frustrating. Does anyone know if MS can cause nerve damage so bad that it would deform a finger?
—Guest Frustrated Too

MS pain...unrelenting

Dear Lord in heaven...I just can't believe this is happening! I was diagnosed with MS in Feb. 2010 at age 57. Symptoms for me are pain, pain, and more pain. Difficult to describe pain. When it's the muscles, it feels like a million razor blades cutting at me..when "joint pain" it feels like something has grabbed the joint(s) and are ripping them out of my body. I was forced into retirement...I try to do a little consulting work here and there..but it takes so much out of me. Constant pain, I do have relief most nights when I am asleep...unles IT wakes me up...I am trying meditation, yoga, and Ayurveda...I even signed up with Dr. Deepak Chopra Chopra Center University to learn more about the Aurvedic lifestyle...will keep you posted, there is something to it! I wish all of you courage, strength, endurance and much much love....let's hang in there...there is a cure around the corner they say!
—Guest Elsie
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