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MSer

Pain in Multiple Sclerosis – is there MS pain or am I imagining it?

14/08/2017 By Savanna Robinson 2 Comments

Pain in Multiple SclerosisWhat 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. Multiple sclerosis pain.

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 of someone with MS 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. Multiple sclerosis pain. MS pain

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. Multiple sclerosis pain. MS pain Is there MS pain or am I just imagining it

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. Multiple sclerosis pain. MS pain

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. Multiple sclerosis pain. MS pain

How MS pain feels

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. Multiple sclerosis pain. MS 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. Multiple sclerosis pain. MS pain

Back to my story

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! Multiple sclerosis pain. MS pain

Is there MS pain or is it just in my head

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. Multiple sclerosis pain. MS pain

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! Multiple sclerosis pain. MS pain

Interested in knowing more about what life with multiple sclerosis is like? Check this out.

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Filed Under: Health Tagged With: invisible symptoms, MS, MSer, Multiple Sclerosis, Spoonie life, symptoms

Living with MS – A day in the life of an MSer

18/07/2017 By Savanna Robinson 1 Comment

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Hi! My name is Savanna and this is me living with MS. The MonSter which is Multiple Sclerosis. I’m also a Spoonie.

Not every person who has MS is incapable of walking and uses a wheelchair. This was the image that many people had when I was young and would do the MS Read-a-thon in school. (I know that’s what I thought all MS people were like at that age!) Now I know differently! Most MSers look quite normal from the outside usually, as a lot of the symptoms are invisible. It’s hard to see numbness and sensory problems when you are just looking at a person.

Living with MS v2 pinterest womans hands holding cup

I’ve had 3 major relapses with my MS (even though the minor relapse of symptoms is quite significant to you still as a person, neurologists think they don’t count). I’ve never needed a wheelchair or cane to walk yet. I have had some cases of my walking being greatly affected though! Think waddling like a heavily pregnant lady and feet refusing to pick up off the floor at all! Enough that the Occupational therapist left me a walker ‘just in case’.

So here is a sample of 2 days in my life as an MSer.

Day A-

It’s hard to get out of bed as I rarely feel truly rested, especially with a toddler who still wakes occasionally at night. It takes an hour to get breakfast for my toddler and myself…my mind just seems to take longer times to process stuff in the morning. We go to a mother’s group playdate, where I get to chat with other mummy’s going through similar stuff with their child. But I spend a lot of time chasing my very adventurous girl. Lunch is had at home, right before her needing a nap. I hope that she’ll go down for a few hours, as my MS nurse insists I should rest (nap) while she does, yet I still have a whole list of things I need to do while she won’t be constantly on my lap. I just manage to doze off when she wakes up. More occupying the toddler inside (as it’s too hot outside for me)  and trying to do things around home. Welcoming my eldest daughter home from school.  Wondering if I have enough energy to cook something for dinner or if we have the finances to get take away. Bathing the toddler, getting her into bed…which still requires an evening breastfeed as she’s not convinced about this weaning business. Then trying to complete more tasks before bed, which probably won’t be overly late as I’m so worn out.

Day B

living with MS woman hooked up to IV with toddler plahing in lap

I’m in hospital to get IV steroids for a relapse that has been going on for over a week. I’ve had numbness/pins and needles in my legs up to my chest, and starting to get that duck waddle back again. My feet don’t pick up properly and trip over any uneven surface. I’m afraid I’ll drop my 11 month old as my limbs feel weak. My reflexes test has hyper reaction to them…extreme jolting movement when they do the bottom of my feet. My muscles ache as it’s over 36 degrees Celsius outside, and even in the air conditioning my central nervous system just seems to know.

Living with MS hospital bed Jamberry catalogues
Hooked up to my IV steroids, and doing business stuff to keep busy.
living with MS cute baby playing with mobile phone cover
Juggling a toddler and time in hospital.

 

And from one day to the next, I don’t know if it will be a Day A with basically no symptoms, but still have to watch myself to not over do it as I’ll pay for that with fatigue later on. Or if it will be a Day B…or worse!

I find I still try to keep positive about it all, as there are worse things I could have than multiple sclerosis. And it’s not much of a life if always looking at those negatives. Life goes on, whether we like it or not! We may as well try to enjoy what we can!

I hope you now have a clearer idea of what MS can be like. Click here if you’d like to read about what is MS.

Pain in Multiple Sclerosis – is there MS pain or am I imagining it?

Breastfeeding is hard. Breastfeeding is easy. The pros and cons of breastfeeding in modern society.

Please subscribe to my blog if you’d like to keep up with my future posts about MS.

 

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Filed Under: Health Tagged With: invisible symptoms, MS, MSer, Multiple Sclerosis, Spoonie life, symptoms, what is MS like

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Tell me how your bedtime routine is going? As I’ll probably be awake four hours at this rate.

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Instagram post 2067438180681202950_1389733818 Having a laugh to myself tonight. After daddy looked after her for the weekend, Ellie wanted daddy to sit in her room while she went to sleep.
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Every time I sit down to have a hot breakfast is when Ellie says she’s going off to the toilet. And 10 seconds later she’ll be back saying “Mummy come with me!” So I get up to go help supervise. If I’m lucky she’ll just go and not be distracted by singing a song or asking questions about something else. 
But my hot breakfast will be cold by the time I help her put pants back on, wash her hands and get back to the kitchen. 
And yet I’ll do it every time while she needs me. Because one day she won’t need my help as much.

These are the sacrifices we do for our kids. This is #parenthood

Do you still get to eat hot breakfast while it’s hot? Share with us below.

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