[Biggsi]

Hello, I am hoping that some of you lovely lupie people will be able to share some ideas for coping.

I have been diagnosed with Lupus for over 18 years and also have Fibromyalgia and Rhuematoid Arthritis.

I am finding it incredibly hard to cope with constant aching in my legs every night when I get into bed. The pain is in the knee, hip and ankle joints but I also have very severe muscle spasms and pain.

I was diagnosed as also having restless leg syndrome and prescribed muscle relaxants but all they did was make me feel groggy in the morning.

This unremitting pain night after night is really getting me down and I would love any suggestions that anyone might have.

Thanks in advance

Oh thought it might be helpful to add that I am currently taking, prednisone, methotrexate, gold, plaquenil, humira injections and pain meds (not that they seem to touch my pain!)

 

[Maia]

I hate it when I'm feeling that way. It is awful to just lay in bed at night with those aching legs. There really aren't many options. It would be best to talk with rheumy about possibly changing medications around some to see if additional ones or different ones do the trick.

Are you not on anything for the fibro? There are meds you could try for that condition that may help the pain you experience such as amitriptyline or Lyrica. The amitriptyline may also help you sleep at night.

Short of that, I have found sleeping medication helps. Even just taking full dose Benadryl for a few nights helps put me to sleep quickly within an hour or two if you don't want to go the prescription route. Sleeping meds are ideally just for the short term - hopefully better meds can be added/substituted to get your diseases under control more than it is right now.

 

[flutterbye]

Sorry that you are having such a time of it at the moment. I can empathise with the lying there in pain all night, and the achey/pain feeling, and have lupus and fibro.

I have recently started to take amytripaline, and after fiddling with how much I take have started to find in is helping, it does help with the pain and helps me to get to sleep as well. For me I have to take a tramadol and 2 amytrip about two hours before I go to bed, I think it is a bit of playing around to find what works for you, I know how much the unrelenting pain and sleep stuff can get you down, so hope that you will find something that will be helpfull to you.

Best wishes xx

 

[acard]

I know exactly how you feel-that is my nightly routine lately. I have found using Icy Hot cream or salon pas spray(which is better than Ben Gay). It soothes the muscles aches and it helps me to relax my legs. I use an electric blanket too. I also will take a hot soothing bath right before bed.

Good Luck and let us know how you do.


Hugs,
Becca

 

[SingleGirl]

That's the worst part of lupus for me so far... I first got sick about 13 years ago... and the nights are the worst...

I'll lie there and wake up every 45 minutes to an hour in severe pain with either my ear (weird), shoulder, or hip KILLING me ... they burn like fire.

Of course, that just makes me more tired... etc, etc, and so goes the lupus...

Advice? I have none... I do better when I'm just the right temperature... too hot and I dang near have a febrile seizure... too cold and it aches that much worse...

Ibuprofen helps me... if I take 3-4 before sleep, it can be a good night as long as I'm not in a major flare... I've tried everything from drinking extra water to bubble baths before bed... I don't know that anything works better than another...

Sorry I can't help... hugs and hope all of you feel better soon.

 

[BaumshellLupieMom]

Yeah, I've been going through the same thing for years myself. I take Ativan (Lorazapam) 1 - 2.5 mg per night. Helps with the pain and getting to sleep. Still takes me about 1/2 an hour or so, but it helps tremendously. Hope you feel better and can have some restful nights soon. Hugs.

Love -- SusieBB

 

[cemc]

Amitriptylline at low doses can be a really effective drug for things like nighttime twitchiness and pain. In higher doses it is an antidepressant drug, but in low doses of 10 mg to no more than 75 mg at night it works on a paticular part of the brain that really makes a difference with some of that type of pain. It can make you groggy in the morning, though I suspect you get used to it gradually. I was told to take it at least 12 hours before the time I wanted to wake up in the morning, and that seemed to work OK. I ended up not being able to take it for other side effects (it made my heart race) but it did give me a lot better sleep.

 

[Sage Hen]

Hi,

We are al so different in what helps us with our differing pain and symptoms.

I couldn't take Nortriptyline, or Amytriptyline, though I know, it is very helpful to many here on the site.

Cymbalta helps me with the severe Fibro pain, and really warm bathes. I couldn't take hot bathes..because I would itch terribly, and feel like passing out in the tub. A heating pad helped in the winter time.

The best rub, that I found to help, and the longest acting, is Tiger Balm Ultra.

I won't lie, it hurts to have it rubbed on, but quickly subsides.

I understand what you mean, when you say your pain meds don't help a lot.

On days that are really bad, mine are not as effective either. Still, I know that they are better than nothing.

My nights, are much less painful lately, because of Cymbalta, Neurontin, Depakote, Ambien, and Percocet..Cell Cept is helping my lupus symptoms and the terrible headaches..

Before treatment..I wouldn't and couldn't lie in bed..I hurt worse. I would get up, and make a cup of decaf tea, or such, crochet or anything..to try and get my mind off of the agony.

I do hope your Drs. can help you find relief soon. Try different things to find relief..but, your Drs. need to find the best med. combo for you to help you feel better soon.

Best Wishes To Feel Better Soon!

Sandy

 

[Jirel]

I take muscle relaxers to help with my back pain. For the first several months I had to be super careful when I drove to work in the mornings, I could tell I was kind of 'out of it' even though I was cutting the pills in half. Now I can take a full one without any problems. You might want to see if you cut the muscle relaxers in halves or even quarters and work you way up. Put up with the groggyness for a while, it should eventually go away, but I have to admit it didn't happen quickly.