My guts are still off movicol does make you guts twitch.

[minka]

Taking movicol but I don't think I'm doing enough poo. And walking on this leg knee and ankle Is creating a problem in other bones. I'm wondering if I should go for camera down . I'm getting concerned regarding how many problems like bones in foot in ribs ache in back it's all over the place now resting on bed again I didn't do to bad this morning but now I'm washed out a bit.

[solo99]

There is always something. I have records for every department from neurology down to podiatry. In the space of 2 weeks I will be in for an infusion, back for an mri, then a DEXA scan, then foot health and pain clinic for nerve block injections. I read something a long time ago that seemed apt for chronic pain "If I woke up and didn't hurt I'd think I was dead!"

It's a sad reality, but for so many of us our reality is that we are so used to pain we tend to accept it as normal. I wish no-one understood the pain, the frustration that as bad as things are they very often get worse, the reaction or indeed the lack of it from those around us.

You are not alone. We all find the strength to keep going, where and how we get that strength may differ, but I hope you can find a renewed strength and don't forget to be proud of yourself for just getting up each day.

Follow Lupus UK on facebook, some great one liners to make you smile and let you know others do understand.

[minka in reply to solo99]

Hi solo thanks for reply but I don't know why my gut jump about. And feet feel so cold.every day it gets bleeding worse 4 months ago was doing 2.5 mile walks now I have a job to get to end of our path with knee and foot pain. I'm taking movicol which gives me diarrhea. I do me exercises which makes it worse and I've lost a stone in weight. Also need 3 teeth out. Why can't the thing stay in the same place. How long you had yours going on.

[solo99 in reply to minka]

I know, it feels like some vindictive, sadistic being has a voodoo doll of you and they just keep sticking those pins in 😂😂 I have to keep laughing, it's the only exercise I get! I was diagnosed with SLE 23 years ago. I turned 50 last year, have a catalogue of issues, have downsized to a ground floor flat as house and garden were too big to manage, not to mention the stairs. I'd taken to crawling up them and falling down them like it was my new hobby 🤦‍♀️🤦‍♀️🤦‍♀️

I've been on movicol, senna, immodium. Been diagnosed with stomach ulcer, IBS, I've had cameras everywhere. every body part has been through mri, x-ray or Ct scanner more than once. I had an undetected clot that caused a heart attack. My hands and feet feel like they belong in the morgue, even in summer, with vasculitis and raynauds, 3 lots of vasal dilaters and warfarin I feel the cold and the pain. I've had 8 teeth extracted, as they have just cracked or crumbled, sjogrens probably.

I've put all the erratic, unpredictable, embarrassment that bowels can cause down to the concoction of meds. If I take codeine, just 2 tablets I can't go for 3-4 days, then I wish it would stop. But it's the incessant farting ( sorry, I tend to be quite blunt and comical about life) when I can't go to the loo that deters from going anywhere 😳😳

I've fluctuated with weight, meds, flares, mobility or impairment to mobility all factor in.

The pain, even sitting still, the shooting, stabbing, cramping in my joints, muscles, ligaments, tendons. Still, if it hurts it means I'm still here 🤷‍♀️ 🤷‍♀️🤷‍♀️

I've been prodded, poked and treated by the NHS for 30 years now, my social life revolves around my hospital visits, thank God I have such a wonderful network of staff to support me.

My doctor says I'm strong, I'm more inclined to say dense, but probably just stubborn...and a little bit Lupie 😜

I wish I could give you solutions, but all I can offer is support and understanding.

[minka in reply to solo99]

Have you tried magnesium citrate it's cheap. Just watching I tube on this it's on eBay for 7 quid. We don't get it on our water anymore. My feet seem to be flattening out that's probably why they are sore as hell. I'm spending most my time on bed instead of out walking. And boy does this make you ache in the back also. Bet I wasted my time on these x-rays at Leigh infirmary today. What part of UK u in. I'm finding once you get 72 they are not interested. Been 4 times I've had this now then it goes. This time it's different .then it comes back after 6 years. I have a little walks up and down then it's back on bed.

Do you have any back problems with yours. And feet problem like cold toes.

[Poshcards in reply to minka]

cold toes can be Raynauds Disease, I have that in my toes hands and feet and I have lupus amongst other things!

[minka in reply to solo99]

I love you enthusiasm over you condition it made me laugh. Even though I've said bugger it today bleeding foot ankle and knee .not to mention the twitching gut that worries me even though it came out a bit today. It's snowing here I'm climbing the wall for a fag and on the chewing gum for that. And the bleeding attack I can feel tink tink tink on my bones that are damaged. I sit down and can feel the bones of my ass on seat like I got bed sores. I whent for X-rays knee and ankle yesterday and I bet it shows nothing up. Or they say you got arthritis. Hey but I'm still here not walking good with like SI joint gone but hey I'm still here. And all this energy in brain that says go go go but body says bog off.