What the doctors say
Is there MS pain? There are a lot of doctors out there who will constantly tell their patients that there is no pain with Multiple Sclerosis. And that might be true with how ‘real’ pain is caused with injury or infection. But there is still an aspect of pain they usually aren’t considering, but that affects many of the people I’ve met online with this disease.
As this disease is caused with interruptions in the central nervous system from lesions, there are all sorts of funky things that end up happening to our bodies that shouldn’t. Messages don’t get from the brain to certain body parts telling them to walk, to pick up things, to relax or contract those muscles sets, etc. The body also has a lot of misfiring messages that get read by the body as pain because it doesn’t know what else to do with the signal that has been sent back to the brain. There is no injury or cause for it, but because of those scrambled signals it thinks “oh boy, something is wrong, we must be hurting’. And so you do! And it hurts just as much as any other injury you may have.
My latest experience
The last two days has had some of that thrown in for my enjoyment. It’s been unseasonable warm for the last month of winter, and my body’s internal thermostat is already broken with this MS. It is said a change of half a degree can set off the heat fatigue symptoms and that can be true with me. The change over from winter back to spring can be agony for my body, not knowing what to do with these changes.
Yesterday I had no energy and spent a lot of time on the lounge while our toddler played. Today was worse. I woke up with pain in my forearms, hands, and lower legs. It was a real struggle to get breakfast done for the little one, as it hurts to do fine motor activities like manipulate spoons. But she’d be pretty hungry if I didn’t grit my teeth and do it.
Then my husband was back home from his early morning haircut, and I could collapse in bed. Not being particularly tired, but it’s just the best place to curl up when in a lot of pain. And ironic as it sounds, even though the pain can be started off by heat, I need heat to start feeling better again. My hands and feet felt icy cold.
Now the pain. It’s like a deep ache inside my hands and makes them feel weak. But it’s more throbbing on the top of my hands and then extends back up the forearms to the elbows. Massaging the places I ache gives a temporary relief, but it’s hard to do that to both your arms at once. But it is a common action I will do in hot weather, rubbing my arms and legs to try and distract from the pain.
I was thinking this afternoon while lying in bed, what would it be on the pain scale they ask when at the doctors. I’m always wary of those scales, as people who live with chronic pain conditions have a different idea of 1-10 then someone who doesn’t. We get used to a certain amount of pain as ‘normal’. I even have a friend who has CRPS, the most painful condition ever, that completely screws up the neural pathways and has the body shut down with seizures because of being in so much pain.
Anyway back to my comparison. I’ve had two babies where I needed an epidural for the pain level (even though I’m one of those people who tells the massage therapist to do hard pressure). The pain I was experiencing today was at the point where I’d be asking for serious drugs in hospital. Or at least that gas which makes you forget what is happening. That’s probably why my go to before I had baby #2 was to take Mersyndol and be knocked out for the day. Normal pain killers don’t do a thing, because it’s caused by the nerves. It’s painful enough to have me in tears from it some of the day…because it stops me doing any task I want to do. And after a sleep of a few hours, my brain says “Nope, not going to sleep any longer, but as you can’t get up and do anything, I’ll just start thinking about all the stuff you want to do and make you feel worse’. My GP has always been wary of trying anything stronger. And by the time I get to a neurologist appointment, I forget just how much pain I am in those days and to mention it. Something I must learn to do better…report on ALL my symptoms that have been happening. There’s probably an app for that!
Is it just me?
And I’m not the only MSer who reports that pain can be a deal with Multiple Sclerosis. Check any online MS forum, and there are many others reporting varying degrees of pain from things to do with their MS. A biggie can be the MS Hug, which thankfully I haven’t had since my first year of diagnosis.
So if you have just been newly diagnosed with MS, and are asking your doctor those questions of what you can expect with this diagnosis, and will there be any pain, remember they may not know the true answer for your body. It might not be their medical definition of pain. But if it hurts you, I surely class it as pain!
Interested in reading of my experiences with multiple sclerosis? Click here.