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A MyLupusTeam Member asked a question 💭
Boston, MA

Anyone else experience the feeling of arms and legs being asleep at night? It's a constant battle with numbness and tingling. It seems to effect what side I'm sleeping on and will alternate during the night waking me several times resulting in a poor nights sleep.
I also have aching in both my legs all night. Any advice on how to get a good nights sleep?

September 6, 2015
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A MyLupusTeam Member

I am experiencing the same. started in December my right hand goes numb and my fingers feel like they are going to pop

January 11, 2016
A MyLupusTeam Member

I take gabapintin for that it helps me a lot and I only take it at night

September 7, 2015
A MyLupusTeam Member

I'm having numbness throughout the day.. It makes me walk funny.. Hope u feel better

September 7, 2015
A MyLupusTeam Member

Reynaud's syndrome seems to affect some lupus patients. It seems that the lupus affects circulation to the extremities and the numbness usually starts with the fingers and toes and moves upward. Sleeping poses special
problems because we are still. Movement causes blood to circulate better. I find that it is also temperature sensitive - coldness causes exacerbation of problem so stay warm, even in summer.

September 7, 2015
A MyLupusTeam Member

I also prop both arms up with soft pillows and have a pillow under my knees. I am lucky enough to have an adjustable bed so I can adjust the inclines of my head and feet...but on the negative side I can only do so to a certain amount as my spouse has to live with the adjustments as well lol and it isn't the same comfort level for us both so thus the reason for needing the extra pillows. I never used to be a back sleeper before but lllloooonnngg hospital stays over and over changed that. That's also when I started adding in all the pillows. The nurse staff thought I qas was a pain and nuts at first for asking for so many pillows..doctor's even questioned me as to why I felt I needed so many...I guess the staff noted it in my chart and I was made aware that my hospital stays were not "a hotel visit" or the nurses at time would try to say there were patient limits to the number of blankets and pillows (as I was also always very cold and asked for extra blankets)....I tried explaining why I felt I needed them...the arm ones took pressure off my shoulders, shoulder muscles and my neck muscles too that helped my hands feel better and decreased my upper body pain overall. The pillow under my knees helped give my lower back relief and decreased my pain levels there as well...although thinking back, I usually didn't require the knee pillow as much in the hospital since I could adjust the bed as much as I needed too since my wife wasn't sleeping in the same bed...anyways, it wasn't until I explained all this OVER AND OVER EACH VISIT and they saw a proven decrease in the amount of pain medication I'd need with and without the pillows...and numbness too...that they finally got it. I would tell them that I hated pain meds, I saw how my family members got hooked and it ruined their lives so I was ultra sensitive to the subject of using them and addiction in general due to the fact of my OWN addiction issues as I overcame an eating disorder and nearly every member of my family tree had an addiction problem be it others with eating disorders, drugs, alcohol, etc and if I could take less medication PERIOD of any kind that's what I wanted and if I could get the same relief or more from a few pillows versus pain meds than that's what I wanted...of course the hospital and drs don't like it as it reduces the amount of.$ they get if I use a pillow for relief over a pain pill or IV medication that has nearly a doubled cost compared to the same medication prescribed to take at home but it is my body so I'm ultimately responsible for what does and doesn't go into it. Sorry to ramble/vent. I hope I helped some. Long story short I increase the incline of my head and use a pillow under my head, both arms, increase the incline of my feet and use a pillow under my knees. I also use Neurontin (Gabapentin) which helps with the neuropathy...tingling and numbness in my extremities.

August 29, 2018

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