LUPUS UK

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Cant move in the night, am so stiff

3 months ago•26 Replies

Sometimes in the night especially when its damp or raining I wake up but cannot move at all. I have to wake my partner to help roll me over cos I just cannot as it's so painful despite taking zomorph twice daily 30mgs. I'm 40yrs old btw with 2 small children.

I have recently woken in the morning unable to move and had to be lifted by him out of bed as cannot move at all.

I am on mycophenolate 4 tabs a day. I already take 20+ tablets everyday for the various issues of my sle and aps.

Even as soon as he moved me in the early hrs this morning I got rolled over and literally stiffened up again straight away??! I have already increased my steroids to 20mgs daily as I do for a flare which I absolutely hate doing!

I just wondered is this something anyone else suffers with, as I lay there 2 hrs some nights in pain as I dont want to wake my partner or if my 3 yr old has got in the bed in the night I dont want to wake her by calling him/waking him to move or lift me.

What can I do??! Why is this happening!

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26 Replies

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Sara_A

in reply to Twitchytoes

3 months ago

I dont have any raised crp or any swelling or anything tho, it's just in the night I get this where I wake up and just cannot move at all.

I'm going to call my rheum Monday and get in to see him, we were thinking of trying methotrexate if the 2nd go on mycophenolate didn't work. I just didn't think I'd need methotrexate as I dont get inflammation.

Just joint pain.

I'm currently thinking of I'll health retirement as having to be lifted out of bed in the morning at 40 yrs old and then wait 2 or 3 hrs to be able to move enough to go to work for 6hrs twice a wk is a bit much really and then when I've laid awake for a few hrs in pain unable to move and have to try and function at work too!

Thanks, btw aged 21yrs they thought it was RA when this all started but started with my hands and wrists.

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Sara_A

in reply to Buckley123

3 months ago

I have some limited mobility issues anyway, I have a blue badge as cant walk that far as usually just so ridiculously fatigued to anyway and some days, really bad days have to use a stick or crutch or just csmt go anywhere at all and cant get up and down the stairs.

I dont get this problem every night but I become so stiff I cannot move at all not even enough to be able to grab hold of the headboard to try turn myself over, I have to wake my partner up to move me or lift me.

I was going to try some of the cannabis tablets(tried the oil but tastes gross!) but the evidence isn't great so will continue on the zomorph and top up morphine and just keep on going I suppose!!

Theres always something!

Hope u get sorted with ur diagnosis soon, it just takes forever and then u never really get settled on meds! I was on hydroxychloroquine for about 10yrs but had to stop it recently as they think it may have caused some damage to my eyes, am waiting to see this wk with eye specialist! See if it's making me lose partial sight in my left eye, even with annual checks.

I also get very severe headaches too like u

I'm ready for the knackers yard at 40!! Dont even feel 40 yet either well mind wise body wise 98!

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Brooksidecourt

in reply to Buckley123

3 months ago

Maybe. I guess that I am one of those suspicious of all medications because of side effects. So when it comes to a known ‘recreational’ drug, it makes me more concerned. There’s an addiction factor to it, which isn’t a good thing. I worry that you would constantly need to use more. Addictive drugs take you down lower than your norm so eventually you need them just to feel as you were before taking them. And then as time progresses, you need more and more.

I’m trying my hardest to take care of things naturally. Foods and exercise, warm soaks with epsom, compression clothing, supplements, etc. It may be a bit longer route, but one with a better view at the end? One med ends up leading to two more to deal with those side effects. Then a few more for the side effects for those, and so on. My mom was on about 20 pills at the end of her life and miserable! Finally, one day she said ‘enough!’ and had her doctors take her off everything. They stopped her meds at 4pm, she went to bed and died in her sleep that very night.

I don’t judge anyone for what they feel works best for them. I would just warn everyone that THC, I feel, is not for consumption. I think the former ‘hippy’ generation has been trying for ages to get it legalized and finally have broken through in their quest. I know there are studies by doctors that are not being given to the public, with important warnings, and it makes me wonder why. Which then makes me even more suspicious. Why doesn’t somebody want both sides given so people can make an educated decision? Maybe I’m the paranoid, but when truth is being kept from the public, I worry, A LOT!

My honest hope and desire is that, whatever everyone here decides to do, and whatever path anyone takes, they find the find success in their journey. I don’t know any of you, but I know, in part, what you are going through, and I feel a connection to you, and I love you. I honestly do. I only want what is best for you. My prayers are with you all.

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Roarah

in reply to Brooksidecourt

3 months ago

The cannabis approved for childhood epilepsy I believe is just CBD not THC.

This is from Healthline.

"Both CBD and THC have the exact same molecular structure: 21 carbon atoms, 30 hydrogen atoms, and 2 oxygen atoms. A slight difference in how the atoms are arranged accounts for the differing effects on your body.

Both CBD and THC are chemically similar to your body’s own endocannabinoids. This allows them to interact with your cannabinoid receptors.

The interaction affects the release of neurotransmitters in your brain. Neurotransmitters are chemicals responsible for relaying messages between cells and have roles in pain, immune function, stress, sleep, to name a few."

The main psychogenic difference is that THC binds with a certain receptor in your brain and CBD actually blocks that same receptor.

Although both are now medically legal where I live, I have no personal experience about how either might work medically. My doctors at this time, due to my dual blood thinners, advise against either for me. But my friends who have used THC for chemo nausea and my friends who have used CBD for joint issues expressed benefits. Placebo effect though is highly possible.

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