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seadancer1

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 #1 
Hi all, I am finding lately that I just can't sleep at night, and catching up during the day only makes it worse. My rheumy has prescribes sleeping tablets, but I really don't want to take them....has anyone any good suggestions for getting to sleep, and sleeping through the night that they have found works, as it's starting to get me down. TIA.
wings65

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 #2 
Hi sedancer. Good to see you back on the board. Generally, I don't have a problem falling asleep. I said "generally." There are times when, if I'm overly stressed and/or carrying around a lot of garbage in my head, I have difficulty falling asleep. It becomes more difficult, as time passes, to drift off into sleep when I realize the lateness of the hour and I'm still awake. Sometimes reading a book will help me nod off. Now, staying asleep is another matter. I often have to get up at least a couple times during the night to urinate. Oddly, if I drink iced tea, I have to go to the bathroom up to six times during the night. Of course there's no sleep to be had then.This doesn't happen with any other beverage so I try to limit my intake of tea.

I don't nap well in that I never feel refreshed when I do - just the opposite; I feel drained and lethargic, which makes for a pretty bad day for me.

Lack of sleep can take its toll on you, as I'm sure you're aware. I understand not wanting to take pills to aid in falling asleep. Perhaps if you change your daily routine, e.g., your bedtime, limiting liquids immediately before retiring, reading or some other activity that generally makes you sluggish, that might help. If not, don't be afraid to take the pills, per your doctor's instructions; they might aid in your getting some needed rest.

Let us know if you've found something that works for you. Sweet dreams.

Gwen
seadancer1

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 #3 
Thanks Gwen...listened to a relaxation tape of rain, didn't go to sleep,but it was very soothing and stopped me from clock watching. I do read though, but as soon as I switch off the light, I'm wide awake again.. I will let you know but. ☺
taffylinden

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 #4 
I had insomnia during the nightmare years of my marriage. The funny thing about insomnia was that I'd get so excited when I felt myself drifting off that I'd get wide-awake again. I listened to ocean sounds and foundthey sometimes helped soothe me to sleep, but I'd wake up a few hours later and couldn't get back to sleep. I used an herbal product called Mid•Night. (I wasn't diagnosed with SLE yet so didn't tell my doc.) It had melatonin in it, which I didn't think would work, but it had other herbs as well, and maybe it was the placebo effect, but I always went back to sleep within 15 minutes. 
Cakelady

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 #5 
Don't fight it. I keep good books handy and tv programs recorded. After reading a couple of chapters or watching a couple of shows I am usually able to go back to sleep. But so I don't wake up my hubby I do move to the frontroom.
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Robinj

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 #6 

From Johns Hopkins:

(5)    Melatonin and Rozerem (ramelteon)

Melatonin is a hormone secreted by the pineal gland in your brain that regulates other hormones in the body that control how your body reacts to daily patterns of light and dark. Melatonin release is suppressed during the light hours of the day and stimulated by dark, helping you stick to patterns of nighttime sleep and daytime wakefulness. As a result, melatonin is often used as a sleep aid over other medications. Melatonin and melatonin-containing supplements should be avoided in people with lupus and other autoimmune disorders because they may stimulate the immune system. In addition, people with these conditions should also avoid the prescription sleep aid Rozerem (ramelteon), because it mimics melatonin in the body. It is important that you understand the necessity of avoiding both melatonin and Rozerem, since sleep aids are often used to help people with fibromylagia and other conditions to attain normal sleep patterns. In general, be sure that you speak with your physician before taking any new medications or supplements.


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taffylinden

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Yikes! Wish I'd known that at the time. Do you suppose most rheumatologists know this? I hope so. Yet another reason for knowledge and self-advocacy. Thanks for the heads-up, Robin!
seadancer1

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 #8 
Thanks all for your help....still trying but determined to get there in the end. ☺
Ladybug

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 #9 
Hi everyone, I have found that drinking hibiscus tea helps to fall asleep. Usually I drink a cup during the day and one at night 1/2 an hour before going to sleep, hopefully it will help others.
Lifesclue

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 #10 
Many of these suggestions are very helpful and I may take some and use them myself. I currently take my anxiety meds to help with sleep and they work well, I could also take benadryl to help me sleep. Things like unisom and melatonin give me a good night sleep for a few nights but then flip my cycle and I am drowsy throughout the day and wide awake at night. The doctors were against sleeping pills for me because they felt addiction could be a problem and wanted me to try other options before it came to that. I still suffer from insomnia though if I do not take my anxiety meds I am not sure I would sleep at all. The prednisone is what exaggerated my insomnia but I was never a good sleeper in the first place.
Cakelady

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 #11 
Hey Life I could be wrong and someone correct me if I am but people with lupus should not take melatonin but the tea sounds nice and I live on Benadryl:)
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Robinj

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 #12 
You are right Cake:

If you have lupus or  a condition that predisposes you to lupus, such as undifferentiated connective tissue disease (UCTD), there are certain foods and medications that you should avoid. The substances listed below have shown to induce lupus signs and flares and should be avoided by people with lupus or autoimmune diseases suggesting “pre-lupus.”

(1)    Sunlight

People with lupus should avoid the sun, since sunlight can cause rashes and flares. Some people are more sensitive to sunlight than others, but all people with lupus are advised to be cautious when they are outside. Of course, it would be impractical to completely avoid going outdoors, but try to be prepared. Carry a sunscreen with an SPF of at least 70 and be sure that your sunscreen contains Helioplex, an ingredient that blocks UV-A and UV-B rays, both of which are harmful to people with lupus. Apply sunscreen to all areas of the body, even those covered by your clothes, since most normal clothing items only protect your skin to the level of SPF 5. In addition, carry a hat with you when you know you will be outside. Certain sportswear manufacturers now make hats with SPF built into the material, which may be helpful for people with greater photosensitivity.

(2)    Bactrim and Septra (sulfamethoxazole and trimethoprim)

Bactrim and Septra are antibiotics that contain sulfamethoxazole and trimethoprim. They are grouped as “sulfa” antibiotics because they contain a substance called sulfonamide. Bactrim and Septra are often prescribed for bacterial infections, especially urinary tract infections. They are also sometimes given prophylactically (i.e., to prevent infection), especially in people taking immunosuppressive medications. However, it is very important that you avoid Bactrim and Septra, because these antibiotics are known to cause an increase in sun sensitivity and lower blood counts in people with lupus, resulting in lupus flares. Several medications can be used instead of Bactim or Septra for the prevention and treatment of infection; perhaps the most frequently used substitute is Dapsone (diaminodiphenyl sulfone) to prevent Pneumocystis pneumonia.

(3)    Garlic

Scientists believe that three substancs in garlic—allicin, ajoene, and thiosulfinates—rev-up your immune system by enhancing the activity of white blood cells, particularly macrophages and lymphocytes. Scientists also believe that the sulfur components of garlic help to prevent and suppress cancer in the body. For this reason, garlic is often used as a supplement to combat colds and infections. Unfortunately, the enhancement of immune response is counterproductive in people with autoimmune disease such as lupus, because their immune system is already overactive. As a result, people with lupus and lupus-like signs should avoid cooking with garlic and adding it to food. Of course, a tiny amount of the herb will not harm you, but try to consciously avoid purchasing and preparing foods with garlic.

(4)    Alfalfa Sprouts

Alfalfa sprouts contain an amino acid called L-canavanine that can increase inflammation in people with lupus by stimulating the immune system. As a result, people with lupus and similar autoimmune conditions should avoid alfalfa sprouts completely.

(5)    Melatonin and Rozerem (ramelteon)

Melatonin is a hormone secreted by the pineal gland in your brain that regulates other hormones in the body that control how your body reacts to daily patterns of light and dark. Melatonin release is suppressed during the light hours of the day and stimulated by dark, helping you stick to patterns of nighttime sleep and daytime wakefulness. As a result, melatonin is often used as a sleep aid over other medications. Melatonin and melatonin-containing supplements should be avoided in people with lupus and other autoimmune disorders because they may stimulate the immune system. In addition, people with these conditions should also avoid the prescription sleep aid Rozerem (ramelteon), because it mimics melatonin in the body. It is important that you understand the necessity of avoiding both melatonin and Rozerem, since sleep aids are often used to help people with fibromylagia and other conditions to attain normal sleep patterns. In general, be sure that you speak with your physician before taking any new medications or supplements.

(6)    Echinacea

Echinacea is often used as a dietary supplement to boost the immune system against colds and other illnesses. However, because Echinacea boosts your immune system, it may cause flares in people with autoimmune diseases such as lupus. In fact, Echinacea supplements sold in Europe bear warning labels that advise against use by people with autoimmune diseases. As a result, people with lupus and other autoimmune diseases should avoid these supplements. In general, it is important that you speak with your physician before taking any new medications or supplements.


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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
Lifesclue

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 #13 
When I was taking melatonin I was not yet diagnosed with lupus. I was unaware that you shouldn't take melatonin with lupus but I have almost always been unable to take it due to my lymphoma. The doctors do not approve of supplement and vitamins that aren't regulated. I took it after my diagnosis of lymphoma for sleep before I knew it switched my sleep cycle and before I knew that it wasn't a good idea on chemo.

I am however going to save your list of things I shouldn't use on lupus. I was aware of some of these but it is good to know. Thanks.
upstater

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 #14 
I think back on when I started having symptoms.....I had been taking echinacea while in Florida (because I thought I was getting a cold) and laying out in the sun.....a lot. 
Cakelady

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 #15 
I really dislike the garlic rule
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