Sleep and sweats.

[minka]

I keep waking up at 2.30 sweating like wet through bed. And it's s cool room. My knee and ankle I elivated it all yesterday and still when I walk on it I go to the better leg. I don't think this predistone is doing a good job .and after a walk my back feels week . Oh and not to forget ankle on inside of leg. What the heck is going on. MRI is not showing inflammatory in bottom of back. Anyone on here get no refreshing sleep.

[PMRpro]

Pred on its own isn't a universal panacea. I have muscle and ligament/tendon problems and they require physio treatments and exercises as well to sort them out. I don't live in the UK and it is easier for me to get the sort of treatment I need - your GP may be able to help with access to physio. MRI shows a lot - but even it cannot show muscle spasm/tightness or facet joint damage in the spine. It is used to rule out injury and structural damage but that isn't always what the underlying problem is.

[PositiveT]

Hi Minka. Sorry you are having sleeping troubles. The Prednisolone is probably causing the sweats. Try and speak to your rheumy department as they might have some suggestions to support you.I am on a tapering dose and did experience night sweats along with chemotherapy induced menopause. Since determinedly reducing the Prednisolone the sweats have greatly reduced.

The back of my ankles always hurt from 6pm. I keep them elevated as much as I can. Waist of back and joint pain too. This is caused by a mixture of Myositis and Lupus and RA for me. I go for a walk every day even if it hurts. Once I have walked the pain eases.

Nothing worse than disturbed or little sleep. I will keep my fingers crossed for you that it will settle soon.

Take care.🌻

[minka in reply to PositiveT]

Thank positive t. I have been on 5 mg pred for 2 weeks I've decided to come of for 1 day see what happens what do you think. Mine seems to be ligaments and bone and the pred seemed to be making it worse.

[PositiveT in reply to minka]

Hi Minka. I have been on Prednisolone for over two years. I have been told that if I missed one in the past it didn't matter and I probably wouldn't notice any pain difference. I have always taken them like clockwork. I was on 30mg and from 1st January down to 1mg. It has taken me six months of reducing 1 mg a month to get to this point. I don't believe missing one day will make any difference. I really feel your best way forward is to speak to a nurse from your rheumatologist team. They will give you the best advice. I was informed that it takes several weeks to months to get the full effect of the Prednisolone. I can remember it helping after two months but everyone is individual and I was /am on other immunosuppressent drugs too and I have had chemotherapy. Please do get in touch with your team. They are there to help you.

Best of luck and keep me posted.🤞🌻

[LuzyCLL in reply to minka]

don’t go completely off before you talk to your dr, you may need to taper the dose to stop

[SamRigs]

Hi i feel for you having disturbed sleep - I too wake up at least once per night sweating like you wouldn’t believe and then after throwing the duvet off I start shivering - can’t win! I am also in pain all night long from my neck down to my toes so even if I do have sleep it isn’t what I call quality sleep as im constantly aware of my body hurting and trying to get comfortable. I hate taking tablets but have just started a 10mg dose of amitripline - last night I slept all the way through - my partner said I hardly moved at all which is good news for me .. I really hope you get something sorted and manage to get a good nights kip soon - you could enquire about these tablets .. may be worth a try? 😊

[minka in reply to SamRigs]

Thank sam

[jilk]

minka, might be worth a look at vit b and vit b1 in relation to lupus. I t would not hurt to increase vit b foods in diet especially if eaten raw

[Poshcards]

I don't sleep when on steroids either x

[ijeasike]

I have been off steroids for awhile now, but I still struggle with sleep. I am always very cold but I wake up soaked in sweat. This past few weeks my sweating seem worse. I don't know the cause but It tends to wake and stay awake. Inability worsens my fatigue too. I just take each day as it comes.Take care xx

[sarahsch]

Hi minka,I suffer night sweats even though I'm not on prednisolone. My husband set me up a fan on a remote control socket so I can simply turn the fan on/off from my bed as needed.

It's ridiculous. I suffer with Raynaud's affecting my internal organs. I can be both cold around the kidneys & sweating around my top half at the same time. 🤷‍♀️ It's a case of strategically positioning the duvet, but this Christmas I got a knitting kidney warmer (like a boobtube for the lower torso) which is helping to keep that bit warm.

Take care

Sarah x

[SamRigs in reply to sarahsch]

I wasn’t aware that raynards affected internal organs. I have it too - came as a shock to read your comment x

[sarahsch in reply to SamRigs]

My understanding is that it is not that common. It was worse in my lungs. It started as a burning deep inside the lung on inhalation of cold air which wained on exhalation & spontaneously resolved on coming indoor. Over the years it got worse & I started being chronically short of breath during hot weather until all I could do was like on the bed gasping for air. It took a total of 14 years to get diagnosis and I passed through 3 NHS hospitals without treatment before deciding to go straight to the Royal Brompton privately. I hand-picked a respiratory consultant who had an interest in CTDs & he recognised it straight away. I take diltiazem & the difference is truly life changing.

Unfortunately I have been left permanently short of breath on moderate exertion & my experience in the NHS has caused mental trauma & it now looks as if I have PTSD. I am still struggling to get NHS treatment for my other symptoms.

Sarah x