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Living daily with the Pain of MS

I wrote this about my pain in MS this morning as i was trying to explain to someone just what it is like to have pain. I thought i would share it. Sorry its a bit wordy.

MY PAIN with progressive MS. (grab a cup of coffee lol).

My very first symptom went blind in 2000 on holiday, it took until 2016 with lots of stuff in between and tests to finally get told “sorry you have progressive MS”, THE final test positive was another VEP which was positive again for ON, i had one in 2007 positive for bilateral ON. I have just had another bout of it before xmas after loosing my husband in October.

Pain in MS. Well for me it was controllable by using CBT my own kind. I run a group on facebook, i kept bantam chickens well my husband and I did, and I used to hatch rare breeds for people to keep me active and my mind of my nerve pain. I tried every way i could to keep on my legs. My doctor said if you dont use your legs Rosie you will loose your legs, so it stuck with me. No matter how hard it was or how much it tired me out i would walk around the house and garden tending to my little flock.

I took my dog out every morning on my scooter as i have trained her to walk besides me.

Since i suddenly lost my beloved husband and care giver in October my pain has gone out of the window, the levels are just all over the place. I have lost interest in my birds, half have been re-homed now sadly. I only have a few left which get me up in the morning.

The pain well its not like when you have broken a leg or have joint pain, its like the worse ever aftermath of the worse ever flu. The tingling and burning, fizzing, and buzzing and vibrations are sometimes on such a high level i swear you can hear them.

Its mainly in my lower limbs down from back and my left side is effected more. I have very weak left side leg now but the pain in my left foot some days i could chop it off. One of my toes is permanently stuck in a spasm which makes it hard to walk. I was falling a lot in the garden as it had too much stuff in there, but its all been redone now at a huge cost but it is now safe for me.

The pain is very odd, how can nerve pain be so painful? It is though but its weird. Sometime the noise in my head well i could scream with it to shut up buzzing, hissing, like bells almost like a steam outlet going off. If i get it loud boy I know its going to be a bad day.

Even the fatigue is painful yeh I know how can fatigue be painful? I used to be active much more active, now i get to 10am and I am on my recliner just resting. Yep everything buzzing, tingling, vibrating, prickling, itching you name it, and then the worse stabbing pains will just get me and I will YELP out loud like a little puppy who has had its tail pulled. It makes anyone in the room with me jump I can tell you, but when you have an evil genie sitting on your chest with a pin sticking you anywhere it feels like it every day, you kind of cant help but yelp out loud as boy it hurts

I have had the worse pain in my shin front of it right side so bad it felt like someone had a knife stuck in it, for nearly 2 weeks I endured that. How did I cope with that? I did more then, got up, did a bit of gardening (i could then), took dog out (i could still walk then), I played games on facebook, i refused to let it get to me. I took no drugs what is the point. All the stuff they give you for MS nerve pain is designed for depression and anxiety they only found out by error that it helped nerve pain, but sadly everyone i tried turned me into a zombie which made it impossible to do anything so i decided to go naked and take nothing.

The pain in my shin was the worse i have had I think. My doctor felt sorry for me, and ordered me a blanket cage. I use it even now in my bed, it keeps the heavy covers off my legs which were making me hot which made the stabbing worse.

Finally that pain went phew…just like that.

MS sure keeps us on our toes. I can have the worse night and the best day, and the best night and the worse day. The pain however, is ALWAYS with me, but on different levels.

My coping is to do things i run groups on facebook, watch funny old series which make me laugh, I help people on a bereavement group, I just do things in my head, which kind of shuts off the pain in my mind, yeh its still there but in the back ground.

My doctor at the pain clinic said if you can manage without stuff do it as the stuff i can give you will just make you feel worse in the end, and i believe that as i have friends with MS who are wiped out all day with no motivation.

I EAT well why i have no idea do i bother as i just feel like crawling into a cave and never getting out again until they find a cure, but i have my animals that need me, and my grown up daughters too and grandchildren and my family and friends, so i have to stay strong for them. I eat really well, my doctor told me my bloods are amazing. I eat fruit and vegetables and chicken and fish, never processed rubbish or too much sugar. My mother was Italian so i know how to eat well. I cut out the main sources of gluten, (which makes my legs burn), i am very very committed to eating well, and i keep a steady weight, without starving myself.

I think diet plays a great part in MS to be honest and any other chronic disease. Keep internally healthy and it supports our auto immune system so we don’t get bothered with too many viruses and colds that can increase our core temperatures and give us an exacerbation of our pain. Oh yes HEAT is thy enemy. Having a shower for me is like running two marathons, i know when i have a shower i have to cancel TWO DAYS. It takes that long for me to recover and boy heat triggers off spasticity and cramp who wants that.

The other horrible pain i get is my BLADDER oh joy how i hate my bladder. Constant painful UTI, and when not a UTI spasms in my bladder even down to vibrating so bad I could cry with it. Its a HORRIBLE sensation. Not vibrating in a good way either. UGH I hate my bladder. It was one of my other first symptoms.

So yes pain well i think a lot of people get it, i know its called Dysesthesia. I have had it all, MS hug too i dont wear bras now as it made it worse. I have had such bad nerve pain in my left arm the doctor thought i was having a heart attack, heck so did I. Neuralgia it was called, then i got the shingles the pain of that was a piece of cake to some of the pain i had already experienced with my MS. I have had the dreaded Trigiminal Nerualgia too now that was the WORSE pain ever, and i have to say i actually had to take pain killers for that one.

So I cope the best way i know how. I just don’t want to be drugged up, I convince myself if its neurological and mixed signals then its not really there so will go away and it always does just go away (well the worse pain does), the one i am left with all my life 247 unless I am asleep is the burning, prickling, and aching feeling in my legs worse in my left and the constant jabbing pain which can come from anywhere at anytime. 16 long years of it, getting worse now and my last bout of ON was really painful in my left eye but thankfully doesn’t last very long.

To cope with the pain in MS and any other chronic pain syndrome I think we have to learn to attack it from different sides and try a mixture of things which suits us, not every treatment will suit everyone, as everyone with MS has it differently now that is another story with MS. Perhaps as there are different types of MS, RRMS, PPMS, and SPMS etc, each one has a different form of pain? Could that be possible, as when people talk about MS i AM assuming they are lumping all of them together. I know my PPMS is way different in some ways to my friends RRMS. Mine is mostly waist down, hers is more fatigue and cognitive not sure if that is classic to either but just an observation. (Primary Progressive MS or Relapsing Remitting MS (periods of being well).

I am blessed in a way though as I was given a very high threshold of pain.

I remember falling once more down the stairs some years ago now before all this kicked off (no i wasnt drinking lol I dont now), and i fell badly well actually I missed the penultimate step as i forgot to step down why i have no idea, and landed some how on my back. The ambulance guys thought i had broke my hip. They tried to put one of those things in my hand, “why are you doing that” I asked, “so we can put morphine in, oh no you dont I said”." I dont want anything".

The xray showed i had fractured my coxic, the doctor was trying to push me to have pain killers could not believe i didnt want any. NO THANKS I said. (I had a very bad experience years prior with pain killers that is another story). I coped anyway and was back at work within a week sat on a rubber ring. I have broken both wrists another bad fall stupid me going down an icy slope with a mad dog and was back typing in 2 weeks. I have a very high threshold so in a way i am lucky.

Mind you like my hubby said maybe the reason i wasn’t taken so seriously to start with is because i give the impression i am coping way to WELL with things, so perhaps being a strong person with a high threshold for pain with MS is a curse after all and at 66 believe me I have had some really bad painful times in my life I have lived through.

Now i have to spend half an hour checking my work and rewriting it a bit as i make so many mistakes now and add words that dont even make sense. See there you go I have taken nearly an hour to write all the above and check it, and i havent thought of my pain once. See it does work WAFFLING works for me lol. xx Ciao Rosie.

Hello Rosie. Thank you for sharing your daily troubles and pains.

It’s already ringing bells with me. I have found that I am often visited by a “guest” symptom or pain which disappears as mysteriously as it arrived.

The neuropathic pain is also excruciating and like you, I refuse drugs for it. I am on an ant-depressant (citalopram) which has helped my eyesight. (How weird.)

All I can say is that the pain is most definitely real and debilitating. Sometimes I twitch in a whole body, defibrillator style way. It is like an electric shock.

Losing your husband must have sent you reeling. I’m very sorry to hear that; I’ve just lost my father.

It’s always worth staying strong for your family but it always helps to have a little bit of hideaway cave grovelling.

Best wishes, Steve

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