From the article: Overview of Pain as a Symptom of Multiple Sclerosis
Multiple sclerosis (MS) can be very painful, although many people do not realize the extent to which MS can cause pain and discomfort. I know that it is hard to find words to describe the MS hug or the incessant feeling like ants are biting the soles of your feet. However, the fact that these things are so unique to MS can result in a lack of understanding and empathy, just when you need it the most. This is the place to let it all out, "scream" about how much it hurts sometimes, rant, moan, gripe. Go ahead. We understand. Share With Others
Is it MS pain or something else?
- I was diagnosed in April of 2005. So farm my symptoms are very mild and I am extremely grateful for this. I do have a stabbing pain that occurs in my right shoulder and also in my right forearm. I will feel this for everyday for maybe a couple of weeks and then it will go away for about a month or so before I feel it again. Lately I've been feeling pain in my left thigh & hip and my arm joints. I'm just not sure if these are from the MS or if they are something else. I've had lower back pain & headaches and my neuroligist said MS doesn't cause back pain or headaches! I stay so confused not knowing if my symptons are MS related or not!
- —Guest Kay
Hip and low back pain
- I am going through the testing for MS. I saw my nurologist once in May followed by a VEP, blood work and MRI's, they wanted to do a spinal tap but I couldn't do that my back hurts so bad it goes numb and I didn't want anything else to cause pain in case something went wrong with the procedure. Now its October second set of MRI's a little bit of change but not much they said and I'm in much more pain I'm on Neurontin and Baclofen. I'm taking 2250 mg a day of neurontin and the pain keeps coming. I have the MS hug most of the time and my ribs grate on my lungs and ribs come out of place , it is very painful. Now the past couple of days my hips are hurting and lower back making it hard for me to walk. My feet go into spasm and cause my toes to try and leave my body they pull to the sides. I have an appointment with the Nurologist on Tuesday of next week to see what he thinks, what is so upsetting is the nurse said she had permission to work me in, as if I weren't a patient. What's goingon
- —Jan621947
Frustration with doctors
- I've said that perhaps I am a pain in the neck patient with both a nursing degree and a law degree, but I honestly think that we all must learn to be our own advocates and become as informed as possible. I have had very good experiences with MS specialists (Shepherd Center in Atlanta) and very very bad experiences with the VA and their revolving door neurology residents. I take Neurontin & Baclofen + a massive dose of Effexor to counter my daily pain (draw a line down the middle of my body--right side is burning aching clenching etc.) I once had an episode so extreme that I couldn't stand it and went to the ER at VA...they gave me morphine but then the resident said that basically I was not having an exacerbation and he wanted to put me on Tegretol and send me home. Tegretol is an older medication with dangerous side effects and a narrow therapeutic range. The resident basically just ignored the fact that I was lying there in pain.
- —nurselawyer
tightness on one side of the body
- Dear Susan the way you discribed your symtoms sound much like me. And its not depression it all has to do with dymileanation because of ms. I was blessed to find a research neurologist and understood this symtom right away.
- —Guest cookie
Ugh
- I have had 2 days in the 16 years since I was dx'd with fibro that the pain was so severe I'd have gone to an ER if I'd had someone to take me. I had severe migraine, gerd, and fibro pain all hit at the same time. Just lay in bed and moaned and cried. Seems surreal now. Fortunately, my pain is usually controllable with meds.
- —chrystalheart
Pain so intense
- I was DX in April 2008 and started Betaseron in June 08. I did fairly well the first year as long as I avoided the heat. This year however is posing many challenges with pain. My headaches are so much more intense then they ever have. ( i have suffered with headaches migraines, sinus, allergy my whole life but now they are almost unbearable) The last two weeks I started experiencing intense jaw and head pain. NON STOP my muscle relaxer will allow me to sleep for about 1 hour but i cant pop them constantly. pain relievers dont touch it. I have missed a few days of work and I just want it to quit. I would rather deal with the MS hug than this. I just wonder if others experience a heightened level of pain now that they have MS ? I went to the dentist and all is OK there so I think it is Trigemenal Nueralgia. Not a fun SX. I am on day 7 of it so i guess I am going to have to call my Neuro. I just dont want to do the steroid thing.... I just dont know how to deal with pain that stays.
- —Guest debi
ms pain
- since MS dx in 1996, I've had pain - most often intense, sharp, deep in my knee joints... then also, but gratefully not as often, dull, burning, almost nauseating pain in ankles and wrists. At times the pain is coupled with numbness/tingly pins & needles. Often the pain is so overwhelming, I can barely move, much less walk or think of. I just have to sit tight, close my eyes, pray and wait until it becomes more manageable. Oh, and the "MS hug"... never knew what it was until about a month ago, at one of these websites. So relieved to hear it's an identifiable MS symptom... though at the same time, very bummed to read about so many of us deal with it. But you're not alone... And I'll say a pray for us all. When I let my 1st neurologist know I was experiencing pain, he told me there isn't any pain with MS. Okay. Anyway... found another neurologist soon after, who understands MS can be very painful. Very important to have neurologist who believes me when I say I'm in pain.
- —Guest wendy
pain and more pain
- I have fibromyalgia and am being tested for MS. The MRI was inconclusive, it showed lesions but would not confirm or deny MS. My next step is to see a Neurologist. I suffer with pain on a daily basis. During a bad episode of pain that lasted 3 months, I could not lie on my left side. Like one writer, it was like a line had been drawn down the middle of my body and all my pain was on my left side. I was taking 3 oxycontin a day and I still had unbearable pain. I had to use a cane and even a wheelchair part of the time. No one seems to believe me when I tell them that no matter where I press my finger on my body I feel pain. Even the top of my head hurts. It hurts to move my eyeballs and I have trouble focusing at times. I used to have headaches all the time. I can remember going for 4 years with a headache every day just in varying degrees of pain. I think that my pain stems from something other than only the fibromyalgia. I think I have MS also.
- —Guest Donna
HALF BODY PAIN
- I have had ms for fourty years and have suffered from pain coming and going for days or weeks at a time. The strange thing is it is like you can draw a line straight down the middle of my body and always the whole left side of my body aches and the muscles get tight. it only helps a little but i usually try to stretch a lot . i have tried over the years to tye it to some trigger but have failed. Has anyone else experienced this? my current Dr. thinks it is related to depression. I have been on antidepressants for 30 years and do not feel depressed except when the pain hits and lasts a long time. thanks
- —Guest SUSAN
pain
- I have been diagnosed with Sjhgrens, Parkinsons, and Rehumatoid. I still believe I have MS MRI's are negative, not had a spinal. I am in constant pain, I have tingling, numbness, spasms, electrical shocks, vibrating or buzzing feelings. blurred and double vision, I cannot raise my legs with them jerking so bad if I miss a step I am on the ground, never been constipated in my life about three months ago started with that. I was on Humira for the RA had to quit due to infections and it actually made me worse. white flashing lights out of the corner of my eyes, hip pain cannot stand for long period of time due to pain and leg weakness. you said I could vent. it all actually started around 1980 then it went away for a while then I went back to college at 32 all of the sudden I was haven pen prick feelings in my arms, I made it through college but the fatigue was awful then it went a way for several years and has not left. the complaints did not happen all at once they come and go
- —ThomasHoffmann
"You're too young to be sick..."
- I had to listen to that over and over again before finally getting diagnosed with MS. I had lots of symptoms, the most severe being the pain. My doctor has me on Rebif, and it only seems to make the pain worse, not to mention the medicine feels like battery acid when I inject it. It hurts in my back, my neck, my head (headaches and migranes all the time), my joints, and my legs. My doctor perscribed me Vicodin and Trexamet, but they don't help. How do I make pain stop?!?
- —Guest MeganW
Pain in general with MS...
- I just had to come out and say that two years after my initial diagnosis of MS, I am still living with a lot of the symptoms and limits that a person living with multiple sclerosis would typically (or not so typically?) have. Most of my pain occurs in my head; and literal meaning here, NOT figurative... I get headaches each and every day (and have had them daily for even six months prior to diagnosis) and have had to control my chronic headaches/migraines with oxycontin 40mg twice daily; just getting my neurologist to prescribe a pain medicine like that, to myself, well it was no easy feat. Also, I will often (daily) feel electrical discharges stemming from the inside of my brain and head; one fellow friend of mine with MS described these as "head sensations" - I thought that was aptly named for the symptom. I too suffer from pain on the soles of my feet, with itching/burning sensations in my right shoulder, which are controlled with gabapentin 3x a day. We need a cure,NOW!
- —Bushrod21
no one will listen to me
- i am recently dx 05/21/09 and one of the main reasons i went to dr in the 1st place was b/c of pain. my hands and arms tingle and hurt constantly with sharp shooting pains down my shoulder blades and then down my arms to the elbow. my dr keeps upping my dose on my gabapentin n told me yesterday if i want refill on my vicodin ive got to go to pain clinic... i think they think i'm lying and i hurt so bad some days and i've got 2 small children...my quality of life suffers and some days all the muscles in my back hurts so bad some days...
- —Guest desirae
no one will listen to me
- i am recently dx 05/21/09 and one of the main reasons i went to dr in the 1st place was b/c of pain. my hands and arms tingle and hurt constantly with sharp shooting pains down my shoulder blades and then down my arms to the elbow. my dr keeps upping my dose on my gabapentin n told me yesterday if i want refill on my vicodin ive got to go to pain clinic... i think they think i'm lying and i hurt so bad some days and i've got 2 small children...my quality of life suffers and some days all the muscles in my back hurts so bad some days...
- —Guest desirae
Pain never ceases
- I have constant burning pain from ribcage down. Have leg spasms,too. But, the worst thing is when my toes (do not curl under,but) snap bachwards. If it happens on the left foot, I'll try to hold them down with my right foot. It's very weird and very painful. I haven't met anyone with this problem, yet.
- —NorvelleJ
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