Weakness

[Corella]

I have had this a while but lately am in a full flare and feel so weak, like someone has removed my bones - it's a weakness that actually wakes me up early hours of the morning, I think its a muscle weakness, and all I can do is lie down.

I am looking for a job and am terrified this will affect it, it is not an option to work part time either, do any of you get this weakness and if you do, how do you cope?

I could cry.

[KellyG999]

Corella,

Yes, I have this quite a bit. Don't let yourself get worried about tomorrow. If you need to work FT, then go for it. I do it, and I do so one day at a time.

If you need to cry and let it out, that's OK. I know I do. Since I have been uswing Restasis, I actually have tears when I cry.

You'll be OK, it will pass. I am sorry you feel so very weak. Hang in there!

KellyG

[Corella]

Thank you Kelly, I feel frightened by it all, my Rheumy liaises with my GP with regards to care as he gets booked up for months, he tells him what treatment etc.  I start plaquenil tonight (nervous!)

We dont have Restasis here, so I have to put drops in every 5 minutes or so.

I got up at 6.30am and went for a walk round the block but now feel weak as.  Just hope I can find a job.

My Vit D levels are stupidly low, my skin cancer doctor whom I see for a check up each year said my Vit D levesl need to be raised significantly and sjogrens patiens cannot maintain them  - its a common issue and once mine reach normal levels, it should help with the bone pain.

But this weakness - well nothing helps, its as though I have been filleted like a fish if that makes sense, all my strength gone.

[Carolina]

Yes Corella,

Your 'core' your inner body strength just disappears.

It will return.  Rest and hope the plaquenil will do its job.

Keep us posted.

Hugs

Elaine

[susanep]

Corella, I am sorry you feel so weak. After I was on the plaquenil for awhile it helped me. I never stop feeling weak, but before the plaquenil, I could not hold my arms up over my head to wash my hair or hardly to brush my hair. Most of the time I would have to just lay down either on the couch or bed.

I remember then when I laid down that I felt like a rag doll. Now the weakness is the worst if I overdo. (which I did today)

Please take care, and I hope you feel better soon.

susanep 

[kellyk]

If your muscle weakness persists.. it might be a good idea to have it investigated... to make sure you don't have a muscle disease or something.. some muscle diseases are treatable.. so why suffer if they can treat it.. justsaying..
good luck I hope the plaquenil works.. it helps my fatigue but not my weakness..

[Corella]

Thanks everyone. I have taken my first Plaquenil - it said take 400mg every evening with food, I never eat late so had to take it at 5.30pm with my main meal, its now 6.46pm so just hoping I dont get any nausea or anything.

[LizPetillo]

  I start plaquenil tonight (nervous!)

Ahhhh ... that will probably help a bunch!  Once I started plaquinel I started to feel a 'lessening' of severity of symptoms within days.  Within 3 months I could tell a good size difference.   The symptoms aren't all gone, but they have lessened so much that now I can get out of bed and breath normally.  Before the plaquinel I had such bad fatigue I couldn't do that.  (no exaggeration)

I started my plaquinel in small bits ... 1/4 of a pill the first day .. 1/2 a pill the second day ... two half pills the third day ... and worked my way up to 400 a day.  I still split the pills taking 1/2 a pill four times a day with meals.  Works best for me.

I too was VERY nervous about the plaquinel.   Still am.  But I literally can't get out of bed without it.

My Vit D levels are stupidly low, my skin cancer doctor

Double ditto .... My vit D levels are almost not even there .. and I've had skin cancer twice.  You aren't alone with that ... Dunno' if it makes you feel better knowing you aren't alone ... nothing else I can say except that 'I hear ya' and 'me too' ....

[Corella]

Oh god, took the plaquenil nearly 2 hours ago and now I have hunger pains, like really bad hunger pains - feels like the sort of hunger pains I get on steroids.

I have and I am ashamed to admit, snarfed two squares of chocolate from the fridge, apples dont cut the mustard!  How can I be hungry, I took them with a bowl of pasta?

Seriously, I am going to eat my dog, this has to be psychosomatic, how on earth can I get hunger pangs from them, I heard it can make you nauseous?

[Babs659]

Hi.  I've never taken 400mg all at once.  I was prescribed 200mg twice a day, and don't have a problem if I take it with a meal.   

Can't hurt to try that and see if it helps

[Sooki]

My rheumy said it doesn't matter when you take it, so to try different scenarios.  Some people take both before going to bed.  Others, spaced out with meals or without.  You might try taking one with b'fast and one before going to bed.  Your tum was probably upset from the plaquenil and maybe your brain interpreted it as hunger?   I hope it works out for you.

[jazzlover]

Oh god, took the plaquenil nearly 2 hours ago and now I have hunger pains, like really bad hunger pains - feels like the sort of hunger pains I get on steroids.

I have and I am ashamed to admit, snarfed two squares of chocolate from the fridge, apples dont cut the mustard!  How can I be hungry, I took them with a bowl of pasta?

Seriously, I am going to eat my dog, this has to be psychosomatic, how on earth can I get hunger pangs from them, I heard it can make you nauseous?

-
It's not pain, then?? Maybe it's similar to the steroids because it does suppress the immune system.

[Corella]

It was deffo hunger pangs, like i really needed to eat, thank god I did.

I had the weirdest dreams ever last night, really vivid and colourful - like it was so real and I have woken up itchy but that is probably in my head, they dont make you itch I wouldnt have thought.

But otherwise all good. (so far)

[Corella]

Day two of Plaquenil

Today I have been so itchy but that could be in my head, I took tonights dose with pasta, now feel a bit unsettled, so having a hot milk.

I wonder how long it takes for any possible unpleasant side effects as in tummy upset to take place? I have had wind though - belching a lot but hubby said that is normal for me!!!! (cheek)

[Scottietottie]

Hi Corella 

Plaquenil can make you itch.

I'm surprised you were told to go straight on to 400mg. When I was put on it my rheumy told me to taper up to the whole dose. He told me to start off by taking one tablet every other day and to do that for a week before taking one every day. I was told to always take them with food.

Eventually I was up to the 400mg and I take them with breakfast but I know others who prefer them at night or who prefer to split the dose.

I hope you adjust to it as it can definitely be helpful. If you areaving discomfort though it may be an idea to try to wean yourself onto them slowly.

Take care - Scottie