LET ME TELL U A STOREY: IT ALL STARTED WAY BACK IN 199... - NRAS

NRAS

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LET ME TELL U A STOREY

minka profile image
10 Replies

IT ALL STARTED WAY BACK IN 1991 WHEN I STARTED TO GET ACHES AND PAINS EVERY WHERE AFTER 9 MONTHS OF THINKING I WAS GOING MAD EVERYTHING CLEARED UP YIPPE.

THEN IN 2005 IT ALL STARTED AGAIN KNEES ACHING AND STINGING LIKE NETTLES UNDER KNEE CAP SAMRE AGAIN 9 MONTHS EVERYTHING CLEARED UP BACK TO WORK AGAIN

THEN 2011 CAME AFTER I RETIRED CAME BACK STINGING UNDER KNEE CAPS NOT A BLEEDING GAIN. This time it was much worse knees back ached feet red raw then going cold tried to walk through it like last time but to no way was this quiting i was seeing knee specialist who said nothing wrong in your knee nothing showing on mri and going in wont fix your knee.

i then whent private to see a rumatologist who thought it might be a spondurophathy who gave me a kenolouge injection well that heeled the hand and i felt a lot better. i insisted on the knee opp and the mri showed nothing after the opp he said acl severly streatched medial side like the dark side of the moon etc etc but ive cleaned it out little did i know that when i saw the phisio she said you need half a knee. me thinking i would be alright So i did me exersises etc etc and pulled that knee back weather it needed half a knee or not (and i did) Next i whent to sdee the rumi woman who sent me for brain scans nerve tests all sort and then they came up with lupus sle and put me on 5mg steroid predistone after some oh 1 1/2 years i cleared everything up brilliant for 3 years.

The i thought i had twisted my ankle walking rested that for 6 weeks and exersised would not heal felt like my ankle was going to come out. We whent on holiday me on walking stick then the knee started off. came home other knee started of feet started red and sores guts a bit off little lumps appearing in hands at joints . and thats where we are up to today hard walking on damaged ankle that affect the back knee moving with no stability in it THING IS WHERE DO WE GO FROM HERE I CAN STAND 3 TIMES PUT 4 IS PUSHING IT.

My doctors doing all the bleeding blood tests she wants but its and ankle and knee that need fixing then we can try the big push again I HOPE but will anyoperation make things worse ITS SORT OF CATCH 22

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minka profile image
minka
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10 Replies
sylvi profile image
sylvi

You can't win darling what ever you do. Hugs from me.xxxx

Bloody frusterating isn't it? RA sucks.

I wish you well

Sue

smithfield profile image
smithfield

At the moment both my knees have toothache! The only way I can describe the pain.

Yes some days it is just out to get you

Caza profile image
Caza

Poor you John, sounds like you've been through the mill yet again. Hope you get some answers this time & treatment that works.

Take care

minka profile image
minka in reply to Caza

well i hope so caza its one tyhing after another little sores on hand when ankle whent first then knee im walkining like a prat all the time and teeth are starting to hurt on left side hope i get a good nights sleep tonight caza hope u r feeling better to

Caza profile image
Caza in reply to minka

Hi John, that's strange I have a lot of trouble with my teeth too & also on the left side. Strange old decease isn't it. Hope you get to the bottom of it

andyswarbs profile image
andyswarbs

You seem to be close to your wits end. I was in a very bad place around 4 months ago, unable to walk and inflammation out of control. With NSAIDs ineffective I felt the only solution was to take responsibility for my health problems.

I am now in a very good place, comparatively. The solution that worked for me was changing my diet. I was vegetarian but am now 99.9% vegan & gluten free (exception is goats cheese). Along the way I have eliminated some foods that really cause serious flares, and added foods that actively reduce flares & pain.

My journey is not over, but a couple of nights ago I dreamed of running 100 yards. I have never been a runner, but that dream will come true - I can feel it in my joints!!!

minka profile image
minka in reply to andyswarbs

hope so mate i could never run but i could speed walk and im sure its the predistone that DONE IT

andyswarbs profile image
andyswarbs in reply to minka

Also I have never been a runner. Until last September I played badminton. Tonight I walked to cast my vote and walked at an almost "normal" pace and v.pleased with that.

But I will run my 100yds once just to prove I can do it.

minka profile image
minka

its good to know some people on here reply they dont on the lupus site but hey i started here i was going to go on that week it happened to tell u all how i was doing but now im back true style on here

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