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mdawncooper
01-03-2012, 10:54 AM
I feel like my Lupus symptoms are in control right now but sometimes I wonder how with all the stress I am under. However, I am really glad. The one problem that I can't get control of is the pain in my legs and hips at night. Does anyone have any tips of possibly making these symptoms better. I end up taking a hydrocodone almost every night so that the symptoms will ease. Any suggestions you have would be appreciated.

Melanie

debbie-b
01-03-2012, 01:31 PM
Hi Melanie,

Since I take Ambien every night, I get to sleep, for about 4-6 hours, but after that I wake up with bad back pain, pain in my hip and neck. I don't know, if it is from the Lupus or from the RA, my rheumy calls it Rupus sometimes.
I get up when the pain starts, sometimes it gets better, but most of the time it doesn't, until later in the day.

Debbie

lucky7
01-03-2012, 02:38 PM
Hi Melanie! Sorry you are having this issue. UGH! I have to take Valium every night. It relaxes my whole body, then i turn on my sound machine to "rain" and i meditate myself to sleep. It HELPS TREMENDOUSLY! Meditation is one of the BEST things i have taken up since being sick! I had to buy "Meditaion For Dummies" to LEARN how though! It is honestly HARD to do! I am still working on being able to do it in a "busy" room! The book said it can take yrs to get that part of it down! I'm not giving up though! I noticed that if i DONT meditate myself to sleep i DONT get good sleep that night! I LOVE IT! GOOD LUCK!

steve.b
01-03-2012, 08:10 PM
my lupus is also under control, by my medication.

my fibro is out of control.

i also have pain when i slow down to sleep.
it is not unusual for me to take 2 hours to dose off.

i take long acting general pain relif all day.
one just before bed time.
i also take an anti inflamitory just before turning in.
low level anti depressents also help me to settle down.

everyone is different, but these help me.

shelby
01-03-2012, 08:22 PM
I hate how ambien only gives you 4 or 6 hours of sleep. That knocks you out fast but it is not a good sleeping pill for a full nights rest. I take neurontin now and sleep like a baby. Nothing wrong with taking lortab if it helps. We need pain medication if we can tolerate them. I find that in the night, my pain is at it's worst. Thank goodness for neurontin! I can only do well with tablets, capsules don't work as well. I take one pill during the day and two at bedtime.

Mica
01-03-2012, 08:26 PM
Like everyone else I take different meds, I found that varying my pain meds helps. Like instead of hydrocodone I take a muscle relaxer(methacrabam..I think) with some like over the counter pain pills sometimes. I take trazadone for sleep and that helps me sleep through out the night and with the pain while I sleep. Like I said I found it working better for me if I switched up my pain pills every now and then.

magistramarla
01-03-2012, 10:49 PM
Yes, I wake up every two hours all night with pain, spasms, full bladder, hot flashes or any combination thereof. I can't take opioids (allergic reaction), can't take NSAIDS too often (hard on the GI system) and I over-react to any of the sleeping pills.
The most I can do is take a melatonin and a glass of wine at bedtime.
Trying to sleep is the pits.
Hugs,
Marla

debbie-b
01-04-2012, 05:28 AM
I hate how ambien only gives you 4 or 6 hours of sleep. That knocks you out fast but it is not a good sleeping pill for a full nights rest. I take neurontin now and sleep like a baby. Nothing wrong with taking lortab if it helps. We need pain medication if we can tolerate them. I find that in the night, my pain is at it's worst. Thank goodness for neurontin! I can only do well with tablets, capsules don't work as well. I take one pill during the day and two at bedtime.

Ambien gives me more than 4-6 hours of sleep, the pain does not. If I have pain free nights, I can sleep up to 8 hours, but even with 4-6 hours, I wake up rested and not tired. It is the pain that wakes me up and I can't take painpills when I have to go to work.
What is Neurontin, is it a pain reliever or sleeping pill?

Debbie

chinadoll
01-04-2012, 10:20 AM
I have the same problem...finally get to sleep and wake up every hour or so in so much pain that I can hardly move. I take tramadol (Ultram) 3 times a day for pain, the last dose at bedtime. My doc has also prescribed a vitamin supplement called Myocalm, but I have not noticed that it helps much. If someone has an answer as to why this happens or what to do to help, I would love to know. The pain sometimes brings me to tears and definitely increases my daytime exhaustion.
Blessings to you,
Kathie Lea

SleepyInSeattle
01-04-2012, 10:21 AM
...The most I can do is take a melatonin and a glass of wine at bedtime.
Trying to sleep is the pits.
Hugs,
Marla

Just wanted to post this link...dunno how accurate the info is, as of course everybody who studies Lupus says something different, but it's something to be aware of, anyway - it's form the Johns Hopkins website on Lupus: http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/

Things to Avoid

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.”

.....(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.

lucky7
01-04-2012, 02:40 PM
Yup! Melatonin is BAD to take! I USED to use it and I thought it was working BUT it was making things worse I just didtn know it at the time!

magistramarla
01-04-2012, 10:59 PM
WOW!
My rheumy was the one who told me to take it!
Hugs,
Marla

magistramarla
01-04-2012, 11:05 PM
Kathie Lea,
I have a theory about why I always wake up about every two hours. I read once that the average REM cycle is a little over 90 minutes. As we cycle out of one REM cycle and into the next, we rouse up a bit from that state of not moving at all. Most people can turn over and go right into the next REM cycle. I think that for us, when we rouse a bit, a spasm or a wave of pain can hit us and keep us from transitioning smoothly into that next cycle.
It's a viscous cycle, isn't it?
Hugs,
Marla

steve.b
01-05-2012, 04:56 AM
i have been taking magnesium tablets for my fibro, for quite a while.

i have talked my wife into taking it at bedtime. (as a sleep enhancer)

it works really good for her.
after 7 nights of using it.......
7 restful sleeps.
we take 600mg tablets,
and i reccommend trying it.

but a dosage this strong..........
speak to your doctor first.

magistramarla
01-05-2012, 10:34 PM
Steve,
Yes, I take magnesium at night, too. I'll have to check on the dosage. It doesn't seem to do much for me, though.
Hugs,
Marla

Nonna
01-06-2012, 01:11 AM
Muscle relaxers help with the spasms and cramping. I find that they extend the first sleep cycle from 2 hours to 4 hours, sometimes longer. Marla love your theory about REM. I know that I do wake up because I can't physically turn in my sleep anymore. I don't like things like ambient. I feel like I take too much meds as it is. I have too take the muscle relaxer for the PD symptoms. But it does work. I'd be asleep right now except I have a cold.

Hugs and I'm lurking. Just not up to par.

Desleywr
01-07-2012, 03:45 AM
I find that if I wake and it is too early for the next pain relief I get a heat pack and lay on it , a long one and that is so beautiful in relief and I go back to sleep in min.

chinadoll
01-07-2012, 07:45 AM
I have severe restless leg syndrome (take mirapex 3 x per day to help relieve symptoms) and have to be VERY careful with medications I take. When I took melatonin to help with my sleep disturbances (at my doc's recommendation), it caused dyskinesia (defined as anything from a slight tremor of the hands to uncontrollable movement of, most commonly, the upper body but can also be seen in the lower extremities. Discoordination can also occur internally especially with the respiratory muscles), which frighteningly, could have become permanent. I have the same reaction to Phenergan and Compazine. After doing some research on my own, I discovered an article in a medical journal under neurology that stated that melatonin is contraindicated in patients with Restless Leg Syndrome. So...if you suffer from RLS along with your Lupus and have had any adverse reactions to phenergan and/or compazine (such as dyskinesia)...check with your doctor before even trying melatonin. Dyskinesia is a miserable condition and it can become PERMANENT. My medical records are flagged so that if I am in an accident or have surgery, I am NEVER prescribed phenergan or compazine. Oh...and I threw away my bottle of melatonin.

tgal
01-07-2012, 03:48 PM
I too have night pain. Same area actually. Back, hips and legs mostly. We changed up my meds so I guess I will see if it helps that. As usually, a great thing about being here is that we are not alone

mdawncooper
01-07-2012, 04:26 PM
I am amazed but glad to know many of you also have night pain. I take sleep meds at night but have noticed lately that they are not working as well. I wonder if it is interacting with my Lyrica so I have tried taking the Lyrica earlier but it still doesn't seem to be helping. I am also taking Elavel and it worked for a while but not so well right now. I meet with my pain management doctor soon so I will see what suggestions he has. Supposedly I don't have RA so I guess my joint and leg pain is from the fybro or lupus.

Melanie