Posted , 5 users are following.
Today I arose at 2:30 pm after an 11 hour sleep....I am choosing to label this as Beauty Sleep by JRA. My yorkie Ziggy snuggles with me, and he is becoming cuter by the day...
Tis the season to be jolly.....
0 likes, 22 replies
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mary76396 ihavenonickname
Posted
I've just been given a Garmin Vivosmart (like a Fitbit) that shows my sleep pattern, I'm horrified that although I sleep upto 9 hours only 2/3 hours of that is deep sleep and the rest is light sleep or awake! No wonder I'm tired all the time!
ihavenonickname mary76396
Posted
So what do we do to increase our quality of sleep? Does the Vivosmart tell you?
mary76396 ihavenonickname
Posted
No it doesn't! It tells me when I should 'move' and how many steps taken during the day, what my pulse rate is and a graph over a week (I have atrial Fibrillation so it's important to keep an eye on my pulse) but it could do with a big hammer to knock me out at night I think lol.
I usually take Endep to help me sleep and I also take Palexia some nights if I have pain but I'm like a zombi the next day so I try to avoid it. Funnily enough on the nights I take Palexia I sleep like I've been drugged but my sleep pattern is almost identical to nights when I don't take it with long periods of light sleep.
ihavenonickname mary76396
Posted
my neurologist explained that our bodies release melatonin in preparation for sleep but the lights and screens we have inhibit this release...I take melatonin 3 mg two hours before bedtime....
Jayjay1959 ihavenonickname
Posted
I just love it when I wake up at 6am and I'm still in bed.
Usually I am so restless when in pain I get up around 3-4 am
which is exhausting when it happens for a prolonged period
Of time. no doubt about it its an exhausting deciese. I certainly
Miss my dog most at 3 or 4 am when I am sleepless
Gloria814 ihavenonickname
Posted
Regarding sleep--I now go to bed often before 9pm and get up around 8 AM
But middle of the night often I wake for 2 hr or more and have problem getting back to sleep. I rest a couple hrs in the afternoon. Used to stay up til 11:30 pm but those days long gone.. I no longer try and force myself to try and stay up. I just believe my body needs to rest. I am retired so easier for me and for that I am fortunate
All the best to you and everyone following the posts
ihavenonickname Gloria814
Posted
I agree with you, listening to your body is best...RA has it's own hours...hugs
ihavenonickname
Posted
this is important...
To reduce waking up because of pain
and to reduce morning stiffness
consider purchasing an electric mattress pad..not a blankey, not a heating pad...put it on top of your top mattress...next put a 3 inch memory foam top...and then put a bamboo mattress pad...I keep mine on 1-2 during the summer and higher in the cold months. I kerp mine on 24-7. No difference noticed in the electric bill.
This helps because RA loves to be warm, because warm allows RA to relax, because warm reduces RA pain, because warm reduces RA inflammation.
When we sleep, our metabolism drops and so does our body temperature. That is why we feel so awful...our body needs to maintain warm while we sleep. If we sleep beneath blankets, the only warmth we have is the warmth our reduced metabolism is able to produce. Not enough.
And this way I can sleep in a cooler room.
tory38006 ihavenonickname
Posted
coming in a couple days and that was my thought exactly.I call them
a bed warmer,they are like a heating pad for your body..Oh ya
ihavenonickname tory38006
Posted
chuckle chuckle
mary76396 ihavenonickname
Posted
I have the opposite problem in that my hands and feet are always burning hot, it's like a prickly heat and stops me sleeping. I have to have the bedroom cold (and sheets cold) to cope. Putting body lotion on my feet and sleeping with them outside of the bedclothes helps. Living in Australia it's hard to cool down sometimes (Although I have moved to one of the colder parts now). Before I was diagnosed I lived in Kalgoorlie WA which is very hot in summer and very cold in winter and very often I would stand in the shower in middle of winter letting the freezing cold water run over my feet at night to try and get some respite. I'm now on MTX, and Cimzia biologic but it still happens most days. It's one of the worst symptoms for me at the moment as the pain is mostly under control but my hands and feet are swelling and getting 'lumpy' and this dry burning means that even with pain and sleep meds I can't sleep.
sorry I'm feeling a bit down today, I'm usually try to be more positive :-(
ihavenonickname mary76396
Posted
It sounds dreadful....big, warm hug
mary76396 ihavenonickname
Posted
I have been tested for both which is clear. I had a bone scan which shows high inflammation in both my lower legs and lower arms, according to my Rheumatologist it's cause is definitely RA.
ihavenonickname mary76396
Posted
Wow, 54 years of this disease and this is the first time I am learning this. We need to uncover relief for you.
MTX is the gold standard...but methotrexate does not quiet all rheumatoid. I am on rituximab infusions, have been for going on six years.
I also take Lyrica-pregabalin to quiet my nerves. Typically I take 150 mg per day, I have taken 225, even 300 mg per day for nerve flares. It sure helps my burning and tingling. It was developed to treat diabetic neuropathy.
Does elevation help...as in put risers beneath the foot of your bed to keep the fluids moving back towards your heart. Typically. I would suggest compression stockings to the knee but your weather is so very hot.
You can make your own super ice packs, as in colder than ice made with only water....1 cup rubbing alcohol and 2 cups of water....mix very well...pour into a zip lock type bag...remove as much air as possible...place inside of a second zip lock type bag...freeze.
,
When you use it, be careful not to burn your skin...put a lite towel between your skin and the ice pack.
Have you ever tried a steroid burst, like 50 mg day one, 45 mg day two, 40 mg day three and so on.
Wish you could have some of my cold feet abd I could have some of your hot feet ...then we could both smile.
down?...I didn't even notice...
big, cold hug
Gloria814 mary76396
Posted
my ankle and foot do get hot esp during the night and like you I have to take covers off or go into a cooler room. I don't have it to the extreme you do but it is definitely uncomfortable
we all have our 'down' days and mine happen more often than not as I learn to cope with this new disease that seems to have taken over my life. Trying to learn to be more positive : )
Gloria814 ihavenonickname
Posted
ihavenonickname Gloria814
Posted
hugs
ihavenonickname Gloria814
Posted
Yes, the burst method does work quite well. Just don't allow your body to try a convince you that it needs steroids with any frequency. If I have a mega multiple joint flare, a 25-30 mg initial dose burst will pull things back because my body is no longer dependent upon the steroids like it once was. Awful convincing my adrenal glands that I was getting off of steroids, my body and I argued for more than a year.
Once an NSAID or DMARD or biologic has taken hold, you should have pretty good management using heat. cold, and rest. If you do not have good management, increase your rest (not to be confused with sleep).
,
So, when I travel to my rheumatologist, I take it easy for two days prior only cleansing and laying my clothing out. Then Ihave the long day of travel. Followed by two planned days of rest...television,chatting, reading, easy on the body activities. Pacing will get you very far.
We must each master knowing where our lane is and then drive in it. If you cross the yellow middle line, rheumatoid will poinr it's accusatory finger...
hugs
Gloria814 ihavenonickname
Posted
it sounds like you have a long travel distance to see your rheumatologist
but worth it if that one is knowledgeable and listens. Sounds like that is the case for you
Does a biologic take awhile to work? I just have had one shot and it doesn't help at all. I can't take NSAIDS b/c of Crohns disease so tylenol does very little if anything for me. My abdomen where i gave the injection
is still quite red but no pain. If it works that's fine by me. Thanks for the info.
ihavenonickname Gloria814
Posted
I choose my rheumatologist because she is a physician at National JewishvHealth, Denver, Colorado USA, internationally the #1 respiratory hospital, because I have rheumatoid lungs.. I am very blessed to be one of their patients.
Yes, biologics take time for us to feel the benefit because biologics modify rheumatoid. The biologics will also improve your Crohn's...I also have Crohn's.
Use ice before the injection and after the injection. The rednesd is iritation from the powerful injection. Sometimes it may itch too. Ice will bring the itching down too.
How long depends upon your rheumatoid. Generally speaking, it could be three to six months before you see the differences. Just know that the medication is working.
hugs