MS Pain
 

Within the past five years, I've been diagnosed with three autoimmune diseases - Vitiligo, MS and Hashimoto's. That makes it difficult to discern what's going on with me sometimes.

Recently I went to my primary care doctor because of pain in my left arm. It's a dull ache that spands from just below my shoulder joint down past my elbow and about half of my forearm. There's certain movements that exasperate the pain, such as extending my arm out to align with my shoulder. The doctor said he feels weakness on that side.

My primary care doctor suspected an rotator cuff issue although I have no pain in my shoulder itself. He assigned some band exercises, ice and motrin for 2 weeks. I did as he told me to. By the time of my follow-up, nothing had improved. He suggested a shot of cortisone. He said that if it didn't feel better within 24-48 hours, it was most likely pain caused my MS. It's now been 5 days since the shot and it doesn't feel any better.

Beyond the arm pain, which is becoming unbearable, I have random dull aches in both arms, my legs, knees, fingers and toes. Sometimes I experience sharp pangs. But of the time though, it's a dull ache that just doesn't go away. I also get cramps where I am unable to move my feet. Everything I look up either says people with MS don't experience MS related pain or the pain described does not match what I am feeling.

I have an appointment with my neurologist tomorrow, but I'm wondering if anyone has any thoughts or ideas as to the type of pain I am experiencing. Thank you in advance for your input!

I frequently have random joint pain in my hands and arms. Not sure if it's MS related or age (I'm only 53!). I take Aleve when it's severe. That seems to take care of it. Rain and damp & cold weather make it worse which makes me think it's arthritis.

Heat and cold don't seem to have any effect. And OTC pain meds do not help to alleviate the pain. The pain does affect my fingers and knees, but the pain is usually where there are no joints. There's no swelling or redness.

Sounds like the type of pain I experience from fibromyalgia...an ache that isn't relieved by normal OTC drugs for me...

I've been wondering about Fibromyalgia, not that I need yet another diagnosis :winky: What type of doctor would I see about Fibromyalgia?

hello and welcome to NT,

for fibro you would see a rheumatologist.
i've had my MS dx for 11 yrs. i was dx'd with fibro long before that. i've had muscle pain for many yrs.

about 5 yrs ago my pain was getting very bad. it's generalized. what worked well for some of it was heat and therapeutic massage.

my neuro finally referred me to a pain dr; one who specializes in pain. he prescribed PT which did help but not significantly. i was initially taking tramadol for pain which worked for yrs but then didn't. (tolerance...?)
i then was given oxycodone. for better or worse and all the buzz about it, it has helped me live a fuller life but i'm by no means pain free. i only take one a day and don't abuse it.

so, i'd ask your pcp or neuro about seeing a certified pain physician. no other dr will give you pain meds. but, i'd try to rule out any other condition that may be causing your pain and try any other tx first before a narcotic.

pain is said to be the 5th vital sign; besides heart rate, blood pressure etc.
ethically drs are supposed to tx pain. it's not something that should be ignored.

i just got my latest issue of the NMSS magazine. in it they have an article about pain and MS. they say "MS related pain can be associated with faulty nerve signals in the brain and spinal cord". they also talk about some alternative therapies like meditation and acupuncture. they also say that 2/3 of folks with MS have pain.

keep advocating for yourself with your drs. don't let them tell you it's depression or hormones or any of that stuff. pain is real to those that feel it and should be taken seriously.

keep us posted. sorry this was so long.

Your arm pain sounds remarkably similar to what I had. hint: waking from pain in the middle of night is a classic sign of a shoulder injury (usually a rotator cuff or impingement isssue).

or, as a dear friend once said: Hey, you have a lot of "issues" so just think of making those doctors work for thier money to figure it out" LOL

good luck on getting this resolved

Thank you for the reply, Judy. I went to my neurologist this morning who, I feel, completely dismissed me and told me to go to an orthopedist even though my pcp who specializes in orthopedics told me it wasn't my shoulder. I also mentioned to my neuro about the random aches and pains throughout my body that were less pronounced than the pain in my shoulder. He shrugged his shoulders and said, "it could be MS or it may not be" and proceeded to schedule me another MRI. I'm following up with my PCP in a half hour. I'm so beyond frustrated!

sorry your dr isn't really paying attention.
keep pushing. a consultation with a pain dr can't hurt.

My PCP is "starting from scratch". I have get an x-ray scheduled. I do not think this is a shoulder problem or a skeletal problem. The pains I feel throughout my entire body cannot possibly be attributed to a shoulder. I honestly feel like giving up and just dealing with it. So sad and frustated with this whole thing. I've found that when you have MS, people seem to disregard how the rest of your body feels. I can see why so many people with MS fall into depression :(.

I had shoulder pain last fall, that became so bad that I ended up going to an ER twice in one day for pain medication. (that didn't touch the pain at all)

It turned out to be adhesive capsulitis. (also known as Frozen Shoulder). Which is what it sounds like they thought your problem might be, since they offered you a shot of a steroid. Did they give you the shot of the steroid directly into the joint, or just into your arm like a normal shot.

I had to get three shots of cortisone directly into the shoulder joint the day the shoulder specialist saw me. (not as bad or scary as it sounds) That was the first time anything helped the pain. I went back one more time, and the doctor gave me another two in that shoulder, plus a couple in my other shoulder. I haven't really had a problem since then. I did PT for a month or so for it after that too.

I live close to Johns Hopkins in Maryland and see a MS specialist Neurologist there. During his vacation I had severe pain in my elbow joint (like somebody was stabbing an ice pick in it!) and called a covering neurologist there. "MS doesn't cause pain" she said. No, that did not make me feel better.

I am lucky to have a MS specialist neurologist at a great hospital who treats symptoms whenever I contact him and have seen how uninformed about MS other doctors can be. Some doctors are a better fit for you, keep looking and don't let them make you feel it's all in your head.

please don't give up. you shouldn't have to live in pain.
it doesn't matter if it's MS pain or not. pain is pain and it's real to the person that's having it.

when my pain was getting bad and interfering with my quality of life i made an appt with my pcp. she knows me. i told her how i feel. even my pain dr was getting in a routine rut with my appts. seemed to be just herding me thru the appt and giving me my refill without really listening to me, even tho i tried to tell them.

when my dr summarized my complaints in a very articulate way i offhandedly said "i should bring you with me to my appt". she ended up sending my pain dr a letter summarizing my situation and i was well received my next appt.

maybe something like that may be helpful. don't give up. you are still your own best advocate. sometimes we have to take a step back, think and regroup. then try again.