Hi, I'm Lacey and new to the group. Does anyone else have problems sleeping because of the pain? I use over the counter sleeping pills but sometimes I still can't fall asleep. Has anyone found any alternatives other than sleeping in a bed? Have you found ways to get comfortable in bed?
I was diagnosed with SS and rheumatoid arthritis in 2013. Presently, I only take sulfasalazine two times a day. (2000mg total)
If anyone has any suggestions, I would greatly appreciate your input.
You might want to try the prescription Trazadone for sleeping. I have never slept well, but found I can get a solid night’s sleep without grogginess in the am.
I take Trazadone, and have for years, but I sleep only 1-2 hours at a time. I was taking hormones for years and did much better but starting 2014, my insurance refused took pay. My MD kept changing to something they would pay, they paid one month each time and then denied.
I wake up because I am drenched in sweat, get up, then get cold because I am soaked, etc…over and over…Every night seems to last an eternity.
You didn't mention if you were taking hydroxychloroquine generic for Plaquenil. My Rhumy prescribed it along with Tramadol (pain Med) and it took a few months but most of my pain seems to have subsided. And I don't have any problems sleeping. I don't take any kind of sleeping pill, but do sweat and get chills sometimes but no pain.
Hi Lacy, I’ve had trouble sleeping my whole life. I have SS, and Fibromyalgia, and a whole alphabet of other things wrong. Talk to your doctor about your sleeping problems. Do you have a good Rheumatologist? Is he or she sympathetic or a good doctor? There are a bunch of prescribed sleep aids out there. I’ve personally tried everything and nothing worked for me. I now take Seroquel, which is pretty heavy stuff.
Although I’m on Seroquel I still wake myself up because I’m moaning. Have you tried self hypnosis or deep breathing before bed? Sometimes self hypnosis will help me. I have purchased recordings for self hypnosis. Also exercising until I’m too tired to think, but because of pain, I’m unable to exercise a lot.
I wish there was a magic wand that I could wave and take away everyone’s pain away. I have yet to find that wand, if I do, you’ll be the second to know. LOL
Hi I take Methotrexate and plaquenil the rheumatoid is under control at the minute but I still wake during the night. The sjogren is worse at the minute and can literally feel my teeth in my gums so I am grinding my teeth so much they are chipping away. Does anyone get really bad spasms in the saliva glands at front of the ears when you eat I look like a hamster and the pain is terrible as are the canker sores and ulsers. Thanks J
Hello Lacey, I am singularly very sensitive to drugs and have tried many for Rh. Arthr. and other problems. At the present time I recently was advised to use capsaicin cream on problem sites for R.A.
I have big problems STAYING ASLEEP in bed. I often come downstairs and put in a few hours on my computer.
Otherwise I go to bed very late and get up very early. I am also on the point of buying a new top class mattress to see if that makes a difference. I have big exaserpations of erythromelalgia which produces a lot of pain and I did use gabapentin but have ceased that now. Everyone does seem to be different both in need, and in suitability for a given drug.It seems to be a matter for trialling under the best guidance you can get. I wish you well Lacey.
Hi...add me to the club of non-sleepers. The doc has said that insomnia is part of SS as it is. But the nights that I have a pain flair up going on, the sleep is much worse. And of course there are those nights that I pass out hard and still wake up exhausted. Its a no-win. I have lots of nights that I just plain can't sleep though... on normal no sleep nights, yoga breathing and night sounds app on the phone do wonders.
As for meds, I was on Gralise (gabapentin) for a few months and it had the wonderful side effect of sleepiness. Now that I am stepping down off it, the insomnia is back full force. I haven't tried anything else yet but am armed with Zquill just in case.
I too have had issues with sleeping. I am on Methotrexate and plaquenil, that help with the aches and pains. I also take 3 mgs of melatonin just before bed which helps so much, it may take a week or so before it is truly effective, I still wake early about 5 am but have learned to just lay and relax till time to get up. When I am having a flair I do wake earlier than usual. Valerie
Hi Lacey. Yes, sleep problems and pain here. I take Zolpidem (ambien) and Xanax to help with the sleeping, but my other meds help as well: hydrocodone, gabapentin and naproxen. As for comfort? Being unconscious due to being drugged helps. :)
Seriously though- pillows, pillows, pillows, comfy sheets, stuffed animals, pjs- comfy everything.
Find pillows and blankets that you find comfy for different reasons. Some fluffy, some thin... you get the idea. These can be grasped and repositioned for various places on your body. Stuffed animals are also great - they fit into wonderful little snuggle spots and are sometimes simply the most perfect shape, and good for hugging. Remember being a kid and snuggling up in a cocoon of softness- I honestly don't know why any of us decided being an uncomfortable adult made more sense than looking like a comfortable kid.
PJs are acceptable day wear (I've finally convinced myself of this). Basically don't stress your body out during the more active times of your day by wearing things that make you tense up. Socks while sleeping might help too.
Meditate, follow a bedtime routine, let your mind and body relax as much as it can. If possible get a slow light touch message- circulation is a good thing.
Whether you attempt sleeping in a bed, a recliner, or a couch- snuggle up.
(Attempt to stay away from drugs if you can, there are lots of more natural things you can try first.)
I have just written a lot in reply and have lost it. Can't do it again. I take Tramadol.
I have an adjustable electric bed that helps a lot but still don't sleep as much as I'd like to.
I have sleeping problems also - I’ve taken every over the counter med’s - then went to ambien- stopped working for me- now I’m on triazolam - helps some - I have trouble falling asleep but I do get few hours with this medicine-- love this site
I take/tried multiple things. Dropping the airconditoning to low temperature before bed, taking melatonin and valerian root, zzz quil, 2 neurontin...and it's Russian roulette. What works one week doesn't work the next. Unfortunately: it's been like the other cycles of symptoms- sometimes are better than others.
Good luck. If u find what works for u, stick with it. And good luck finding the regenerative sleep we so desperately need!
Just want to throw out the quick reminder to talk to your doc before taking anything. That includes natural or herbal things…they do have an effect on the body and other meds you may be taking.
So true. Many times the herbals are understated as being ‘medications’ which can interfere with prescription absorption and chemical reactions between the 2. Be safe. Educate yourselves and talk candidly to your physicians.
Sleep has been problem for me even before I had mouth problem and had biopsy confirming I have Sjogren’s and rheumatoid arthritis- I took every over the counter med out there - then my primary Dr. Started me on Ambien which worked for few years - I’m now on triazolam and it works for about 6 hrs. With my fatigue Dr. Thinks I should stay on it - at least I sleep for few hours – my biggest problem in addition to fatigue is lump and sore numb lip 2 months after the biospy- finishing 10 days of antibotic with little help- I’ve read since joining this site few others had this happen - sure hope it gets better- I can’t feel hot food so have to be careful - and still have to numb my mouth to eat - sores in mouth and tongue have been there since November- I have appointment with specialist - Dr.Small in Bradenton end of August - takes forever to get referral- I enjoy reading on this site - thanks everyone that shares
I also have trouble sleeping, although I have noticed that if I exercise I pass out from exhaustion, and I sleep longer and better. I also have noticed that if I just lay around all day I can’t sleep well. So here lately I have been forcing myself to get up and do something even tho it’s hard and painful, normally once I get going I’m ok. I wish I had access to a pool but I don’t.
Your so right with exercise - I live in Florida and come north for two months - I went to pool in our park and did water exercise five days week and started s stretch class couple times week - I have no pool here and not doing exercise class and I feel much worse with fatigue and muscles hurting here- plus it’s been cold–
I also have trouble sleeping, although I have noticed that if I exercise I pass out from exhaustion, and I sleep longer and better. I also have noticed that if I just lay around all day I can't sleep well. So here lately I have been forcing myself to get up and do something even tho it's hard and painful, normally once I get going I'm ok. I wish I had access to a pool but I don't.