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

Responses: 439


Updated March 19, 2009

your fine just drink quinine

Ma d as heck, unbelievable number of doctors telling me just drink quinine for the muscle cramps how much money I have spent going to doctors telling them about my dizzy spells telling them about my muscle cramps telling them about the pain In my mid section my legs my arms my face stabbing pains in my eyes. I'm so tired at work the brick floor looks like a good place to sleep. Working for 8 hrs on my feet causes anything from a sharp stabbing pain to a tooth ache pain in my hips and groin. Can't sleep because shins keep going into spasms I try to stand pain pain is so intense I just pray and cry until it ends some nights it like a rolling thunderstorms they just keep coming. Ok thanks for letting me vent can't let my family see this side of me.
—Guest sue

totally frustrated

I'm diabetic as well as struggling with the many pains of ms. All the docs want to do is talk diabetes. I need someone to see past diabetes and help with the ms pain. I have sought help and left high and dry. I welcome any and all help.
—Guest GLR

Pain and MS

I have been diagnosed with MS for 6 years. I'm 46/female. I've had optic neuritis and find it's worse when I'm stressed or upset...at the least my vision changes for about a month or I lose sight at my worst. I found during the first few years my Vitamin D level was extremely low. Once I got my level up, the leg pain mostly went away. Please have your vitamin D level checked- by a doctor. My level we so low they told me I couldn't drink enough milk or get enough sun. I had to take high amounts of vitamin d to get it up. I still have pain in arms, back, and a mental fog in the am, but it's much more tolerable when my legs feel better. MS sufferers, please have your Vitamin D level checked. I also take 3 mg of melatonin and 2 tylonal pm..and use ear plugs at night. I used to never sleep. This I has helped with the pain.
—Guest Kelly

life is not life anymore

All of you speak the truth. Everything all of you are experiece is true for me but only we understand. And Ialso have a brain tumor. I just don't want to bother with doctors anymore. Nothing they can do to changea thing Im so sorry all of you feel so awful. If like me nothing makes you feel any better. That is the awful part. I have some hope a neuro/psychiatry can help and if not well I will see then
—Guest polly

Thanks for creating this forum!

Hello all. Hope you are having a "good" day. I was diagnosed 5 years ago but suspect I had MS for as long as 10 years now. I am a 39 year old male. My problem is that I have always maintained an athletic build even with MS. That said, people see a strong man...but I am frail on the inside and the perception that others including my wife and Dr have of me is that he's doing fine while living with MS. However, I have daily pain that appears to be getting worst. My Dr. gave me a pain killer to be used only if I really needed it. The problem is, I seem to need it more and more. It use to be once a month, now I need it once a week. I only do it so I can maintain my job (school teacher) and be the father to my son that he needs. Dr. wants me off of them....don't think he understands the pain and discomfort associated with MS. Feeling lost and dejected for the first time with this damn disease. Thanks for letting me vent, don't let this beat you!
—Guest BD


Im in excrusiating pain from servere osteo arthritis bilateral most of the time. Especoally when i walk. I dont try to show it so it is frustrating. Because it builds up and i just want to upset. Its not becoming as a matter of fact its been going beenon way to long. I want my life back.
—Guest cynthia

please help me

sweet mother this is far too painful for me to stand on my own two feet with these chronic leg cramps that I can barely move you have no Idea how bad I get them as my partner moves my legs but each time he does it makes me cry as he says its meant to help the pain so please help me
—Guest ginger

unconclusive MS DX

Hello long story short 18 months i started have pain in rgt foot , it got worse as the months went on by dec 12 I lost all my fine motor skill went to neuro did 5 mri found brain lesions , compresed disc in neck, missing verebarte and carpal tunnel did 3 surgries 2013 , pain went away for a short while has come back so servre i cant not walk, MS spec put me on 600mg gabapentin, did another MRi oin OCt 13 showed 4 more lesion on brian which would classify as MS, opec nerve to small to dx per dr. congtive issues with memory, problem solving etc. dr says med are to expensive to get on , went to foot dr said it was nerve pain, have to wait until oct 2014 to do another MRi if more lesion will start on meds. going to pain magment dr tomorrow but i dont want drugs i want the pain to stop without them, also have appt with neurosurgreon just to see if she can help i am desprest ...i can barley walk, sleep, any help out there
—Guest cindy

Ms pain

Ms and menopause = your a mess , spastic, burning pain, limits mobility and function. I go to acupuncture which helps with function and pain and a chiropractor but just to get myself out of bed I use medical cannabis Drops It de petrifies me so I can move magnesium can help that a little but I still struggle
—Guest candy

Many 'most painful' parts of MS

I think the most painful aspect of having MS is after telling my family and friends, many have stopped contacting me. I realize I had been guilty of the same with folks with disabilities. I would look the other way and ignore someone from my hs reunion sitting in a wheelchair. Shame on me. So I can understand why they don't contact me--maybe fear, not knowing what to say, thinking I need to rest, they might disturb me, I cannot do what they are going to do, etc. Another painful part is the 'PAIN" itself. I almost wish we had an internal gauge meter that showed the intensity of our pain(s). I think the non-MSers would be shocked.
—Guest Patricia

I have all the symptoms (Part 3)

Stiffness: I am stiff all over upon waking up in the morning. Specific stretching exercises help. I also have constant spasticity in my thighs which is extremely painful. I notice more spasticity when the humidity is high, cold weather or eating too much sugar. Back Pain: I have had back pain since my teens. I will sometimes get tightness in my lower back, like a spasm which is painful. I usually use relaxation techniques and an Aleve to stop the back pain. Pain from Spasms: I get Flexor spasms in my hands when writing. This is more prevalent in the evening hours. I have difficulty opening jars, screw caps, etc. Extensor Spasms: I have Extensor spasms when I stretch in the morning or raise my arms above my head; I usually have a spasm/jerk that doesn’t allow me to move freely. After the spasm, I am able to move easily. When I take a hot shower, I don’t have the spasms unless I am exposed to cold temperatures under 70 degrees. L’Hermitte’s Sign: I always thought the electric-shock ty
—Guest Patricia

I have all the symptoms (Part 2)

Parasthesia: I have numbness in my hands, arms, shoulders, down to my toes & have a vibrating sensation too. I have burning, itching, tingling all the time. It sometimes feels like a bug is crawling on me. I know it is the MS but still look to make sure it isn’t something crawling on me. Headaches: I have a daily headache of some type. I have 4 or more migraines a month. I have had cluster headaches too. I take two medications for my migraines. Optic Neuritis: I got optic neuritis and lost vision in right eye for one month. My vision returned but remained a little fuzzy. I have lost my depth perception and some peripheral vision. I still get frequent pain in my eyes much like the beginning of the initial bout with optic neuritis. Joint Pain: I have constant pain in my joints. For many years I thought it was arthritis or lack of exercise.
—Guest Patricia

I have all of these symptoms (part 1)

Peripheral Neuropathy: I have peripheral neuropathy in my feet, much like that of diabetic neuropathy. I thought it was caused by calluses on the bottom of my feet. This pain is so severe that I had difficulty walking most of the times and have to wear well-padded shoes with flat heel. I had this neuropathy for four years before I realized it wasn’t calluses. I take medication for this. MS Hug: I get the MS hug frequently around my torso and chest; I have intense pressure like I have on a tight fitting bra. Dysthesia: While giving myself a shot of Copaxone, the needle entered a nerve and caused burning, inflammation, painful and permanent sensitivity on my right thigh. This happened about the same time there was a recall of the alcohol wipes. I have wondered if this caused my nerve sensitivity. Parasthesia: I have numbness in my hands, arms, shoulders, down to my toes & have a vibrating sensation too. I have burning, itching, tingling all the time. It sometimes feels (continued...)
—Guest Patricia

feeling it ! omg !!

Hi , im 32 male . I had a fit when i was 28 .. thats when i was intoduced to hell. I shook all night , loss of fluids , couldnt move my eyes for s week . Im 32 now and in the lsst year it started in my hips felt luke someone was cutting my muscles so it stopped me dead in my tracks. Sometimes lastin a day and a half. Loss of memory short term. . Confusion , cant tell my left from right !!! Forgot that , freaky scary !!! Face keeps spasms and spasms through out the redt of my body. Now my left ear is constantly ringing and pain shooting in my jaw and left jaw joint bone thst moves to the right side so both hurt . What scares me most is the confusion and trouble remembering things , like everyday second nature things . Forgetting how to spell words right and writing forgetting to put the words rigjt and not finishing spelling them correctly. Im also having uncontrolable muscle movements that are presenting themselves in diffrent areas of my body when i lay down to rest at night.
—Guest sunofabit

Dear "All" (Guest like me)

So sorry you don't live near Dickson or Nashville, TN. I have only the highest regards for my primary care Dr., my Neurologist, and my Neurosurgeon at Vanderbilt MS Clinic. Don't give up!!
—Guest phyllis1991@aol.com
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