Cant move in the night, am so stiff: Sometimes in... - LUPUS UK

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Cant move in the night, am so stiff

Sara_A
Sara_A
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!

26 Replies
oldestnewest
Twitchytoes

To me it sounds like severe inflammatory arthritis but I think you need to report this to your rheumatologist ASAP so they can check you over and decide on the cause.

I used to have this kind of stiffness 8 years ago when I was originally diagnosed with RA. I was put on Prednisolone or had my dosage of Methotrexate raised or both. In my case the stiffness eased up to a great extent only once I started on a higher dose of Levothyroxine and AdCal D3. So it may be a good idea to get your thyroid, calcium and vitamin D levels checked as well.

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Sara_A
Sara_A
in reply to Twitchytoes

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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Buckley123
Buckley123
in reply to Sara_A

You sound like me I’m not diagnosed yet but looking at uctd please take a look at my profile

I’m not so bad as can’t move but I get the worst pain in my legs and wrist and hips when I walk too far get stressed cold or damp xx

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Sara_A
Sara_A
in reply to Buckley123

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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Buckley123
Buckley123
in reply to Sara_A

Bless you ❤️ it’s hard I know have you tried yoga ? Even if you start with stretches? Have you considered anti inflammatory diet ?

I believe there is new evidence that actually the thc in the cannabis is also Good for the pain..

xx

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Sara_A
Sara_A
in reply to Buckley123

My partner is a pharmacist so he had said not to bother with the cannabis tablets as I was going to go buy some the other day after him having to lift me out of bed on a work day!

I usually eat that kind of diet looking at it, tho I do find apples oranges and acid fruits and foods tomatoes etc make my joints worse.

Some of my headache meds have totally ruined my appetite I hardly eat a thing I eat no meals maybe one a week or every 2 weeks now just dont feel like it at all.

And then when I up my steroids I just eat masses of cereal and that's it.

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Buckley123
Buckley123
in reply to Sara_A

❤️ worth a shot just in the meantime 🧘‍♀️

Can I ask how you got diagnosed? All my blood is negative so I’m having a hard time with diagnosis.

I have brain scans which shows inflammation and lymph nodes ect ect but not blood work. Any advice ?

Has anyone looked into fibromyalgia?? As well as others ? Hydrotherapy pools are meant to be amazing for joint pains that and deep tissue massage 💆‍♀️ for your muscles..

I find magnesium spray works well also and turamic I think it’s called.

Xx

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Sara_A
Sara_A
in reply to Buckley123

Just my bloods really and clinical presentation of my joints. I have anti ro antibodies and some others.

I am triple positive for aps with high levels and have livedo reticularis, chronic fatigue, chronic migraine,

There has been mention of fybromyalgia over the yrs but my current rheum never really says anything about it when I've said. I have a diagnosis of it back in 2008 deep in my notes but no mention since.

I've tried acupuncture and other things just expensive but now I've got pip again I'll be able to have these things again to help with pain x

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Buckley123
Buckley123
in reply to Sara_A

Pleased you got pip x

My bloods are negative for everything so far apart from elevated ace levels

I wish you luck xx

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Sara_A
Sara_A
in reply to Buckley123

What's ace??

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Buckley123
Buckley123
in reply to Sara_A

I have no idea apparently found in sarcoidosis a lot but my neurologist is a sarcoidosis specialist in royal free he said I haven’t got it xx

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Brooksidecourt

I would agree with all but the cannabis. Idk why the truth isn’t being given to the public, but cannabis changes your brain chemistry (in a bad way). It can also get bad enough that it leads to schizophrenia. I’d stay away. You don’t want brain problems on top of everything else.

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Buckley123

I understand both sides tbh

They do now give it to some children with brain abnormalities it’s been proven to bring down inflammation and has been legalised for some people with ms epilepsy ect.

Have you ever watched the lady with Parkinson’s take it works wonders.

People swear it has helped with cancers

I am aware it can cause schizophrenia but do you not think if used in moderation it could be a good thing xx

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Brooksidecourt

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

Cannabis with out THC is available. I feel any supplement or herbal additions should always be discussed with our doctors before hand. There are possible interactions that can happen according to disease or medications with even "benign" vitamins. Xo

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Brooksidecourt

Totally agree that even supplements need to be discussed. If the THC and CBC are removed from the cannabis, then what is the drug effect that helps the pain? I use a ‘pure hemp’ soap, but isn’t cannabis w/o THC and CBC just simply hemp? Or does this still have the CBC? Which, i’m thinking is just as bad as the THC, or somewhat so? But I am definitely not a scientist.

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Roarah

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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Sara_A
Sara_A
in reply to Roarah

Oh my what have I started!!!

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Buckley123
Buckley123
in reply to Sara_A

😂

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Sara_A
Sara_A
in reply to Roarah

I only mentioned I might try the tablets instead of the oil as I didn't like the taste of the oil as my zomorph wasnt really doing enough and I've caused a riot!! Ha! Only joking!

I just kind of was at the end of my tether trying to go to work in pain and having this pain in the night then having to go to work after having to be lifted out of bed on a morning (I only work 2 days and trust it to happen on a work night!)

Its been raining again today so again I'm dreading going to sleep as I know it may well happen again tonight! Aargh I really hate it!! Am ringing consultant tomorrow, anyway that wasnt about my message to u sorry!

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Buckley123
Buckley123
in reply to Sara_A

You haven’t it’s a healthy debate ❤️ everyone has different views

I’m sure I’ve seen thc helps with pain

My mum used to say 5 a day and 3 puffs a day keeps the doctor at bay..

She was a little out there 😂😂

I hope it dose not happen to you tonight if Must be so frightening

Xxx

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Buckley123

I agree I don’t use cannabis myself but my mum did and it did ease her symptoms a lot everyone has to choose their own path.

I would consider eating it if it would help but if I was desperate and nothing else worked a lot of medication can cause a lot worse side effects

I would never smoke it xx

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strawberryshortcake

If you can get it.

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Bebe76

It sounds like the MMF isn't working. You may need a higher dose or a different medication.

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Sara_A
Sara_A
in reply to Bebe76

I had the highest dose of MMF 5 a day but it kept dropping my immune system too low so had to lower dose to 4 a day and was ok on that.

Tried azathioprine twice but my liver didn't like it.

This is my second and last try on MMF as I didn't want to give up too soon and the next thing to try is methotrexate inj once weekly but at last review about 2 months ago wasnt doing too bad so said I wanted to stick on it and he said that's good cos I was hoping we wouldn't have to change (not sure why??) But now maybe will have to.

Just want to get settled, obviously am without the hydroxychloroquine at the mo too cos of the poss eye damage.

Just haven't really settled since birth of my last child 3.5yrs ago x

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Bebe76
Bebe76
in reply to Sara_A

Sorry you are having so many problems with your meds. It took about 4 years for me to finally find the right dosage and combination of meds. I was put on azathioprine initially but it was damaging my liver and I was switched to MMF. I hope you find relief soon.

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