Does anyone else have horrendous pain at night? This has been going on for years, but it has gotten worse and is really starting to make me have thoughts I don't want to have. I am so fatigued already and not sleeping much is not helping my state of mind.
Is it reasonable to expect to have relief from severe pain ? I think it is and I don't think my pain is adequately managed and I don't know what might be available to help it.
I wonder if there is a pain patch or something that I could only use at night, or something that would knock me out !
I am weaning off prednisone, down to 5mg, and that may be to blame for the increased nighttime pain, but I intend to get off of it ASAP.
By the way, does anyone have any tips for surviving the taper? Share your experiences getting off of it ?
sorry you're in pain. I think you're probably correct about the prednisone not helping you out with pain management. A taper always seems to do weird things in weird ways!
Do talk to your doctor if possible and if this persists. Think of some good OTC remedies and anti-inflammatory meds if you can tolerate them (and if your doc approves them). I'm known to take Benadryl for a quick fix if needed but I know that's not what it's meant for.
If this persists you need to talk to your doc to be sure there's not something else afoot. Hang in there.
Mimi, I don't have any suggestions for the prednisone taper as I've only done it for a short course, and only a couple of times. But I gather it can be quite a trial.
But I know about night pain. When my disease was really active, the night pain was awful. I would have excruciating aching from the waist down, and also muscle cramping. One thing that helped me was taking an OTC drug that we can get in Canada, Robaxacet. It is a combination of acetaminophen (Tylenol, Panadol) and methocarbamol, a muscle relaxant. In the US, methocarbamol is a Rx drug. But there are others too, like flexeril. Might be worth a try.
Recently, even though Enbrel has me in pretty fine shape, I've discovered that I sleep better if I take Tylenol or Robaxacet when I go to bed. I must be having some discomfort that the tylenol quells.
And you're right, if your sleep is disturbed, it is much harder to cope with your disease during the day.
I'm relatively new to this thing... But my pain definitely gets worse at night! Especially my SI joint. I even go through the day absolutely pain free sometimes, and just when I think "oh, now I will lie down and rest a bit", the pain begins. It's really irritating, I know. I personally haven't figured out how to make the pain go away. I'm beginning to fear that there is no way to actually make it stop. It just comes and goes on it's own account. Or maybe I haven't figured it out yet, I don't know. I take a pain killer, and my latest "discovery" was ice, but that's about it. Usually the pain is pretty bad but I can still sleep. I think the fatigue overcomes the pain. But then I get weird dreams about my rheumy and wake up twenty times :) And sometimes I can't, and I just stay awake reading until the pain diminishes a bit.
Yes ! It's the below the waist pain. My hips, lower back and legs are what ache and throb and keep me flopping around like a fish ! I am highly allergic to anti-inflammatories and I do take pain meds three times a day, but they really aren't strong enough. I am concerned about being able to keep my part time job ! Right now, all I want to do is lie down with my heating pad.
Sorry to hear your pain is worse at nite. Mine is also. About an hour after lying down things begin to ache more. I have found taking pain meds BEFORE the pain escalates helps alot. And a hot shower helps my shoulders. Elavil at bedtime is supposed to help with chronic pain also but i don't know if it is still used or has gone out of fashion.
Cayuse, yes, Elavil (amitriptylene) is an old med that still has a following. Good idea. As I understand it, it’s good for chronic pain and it also makes you nice and sleepy. Definitely worth asking the doc about, Mimi! And janeatiu, benadryl the antihistamine is also used as a sleep aid.
Ugh. Just thinking about that night pain. I wonder if it really is worse at night, or if you just notice it more at night? Naaah, it’s worse at night.
Hi Mimi, from experience I can tell you that the pred taper is making it worse. If you are having trouble sleeping, I’d give consideration to the idea of doing a week or two at the same dose (ie delay dropping your next milligram for a week or so after your schedule). I know that it is not what you want to do - but lack of sleep makes everything harder, and for me, the pain worse, so a week break is worth thinking about. I had to do it both at the 5mg mark, and the 2mg mark.
For hips and lower back at night, I used to use a warm wheat pack.
Nocturnal pain is hallmark of AS and similar axial diseases. Sleeping is one of my biggest problems. It hurts to to flip over. I use to sleep on one side because of this, but the side I slept on became numb. Narcotics do not help with the pain; but a large enough dose it puts me to sleep.
There maybe something that can be done, but it would required a pain specialist. If you don’t have one, get a referral. Best thing I ever did!
mimiB, I wanted to leave you with another thought. It isn't something that will help for your real symptoms but it might help your long term mood. I saw my rheumatologist last week and were reminiscing about a visit I had with him over a year ago. At that time I was trying to get the dosing of my Humira right. I was having chronic pain at night. I had insomnia, leg pains and spasms, mild nausea and no matter what I took, which pain meds, which sleep aids, it was the same almost every single night. For months. Then, all of a sudden, it stopped. Whether it was that I got better accustomed to Humira or whether I had been in an inflammatory crisis (flare sounds like sparkles and bling) or whether it was the addition of gabapentin to help ease the neuropathy I was experiencing in my feet, I will never know. But it stopped. All of a sudden. And I started to sleep through the night. And in the bed instead of on the couch. None of this is said to diminish your very real pain and the debilitating effects of interrupted sleep but I offer this thought to give you some hope that this too shall pass. Peace.
Definitely worse at night ! I don't even have the hip/butt pain during the day. Other pain, yes, but this is a horse of a different color.
Seenie said:
Cayuse, yes, Elavil (amitriptylene) is an old med that still has a following. Good idea. As I understand it, it's good for chronic pain and it also makes you nice and sleepy. Definitely worth asking the doc about, Mimi! And janeatiu, benadryl the antihistamine is also used as a sleep aid.
Ugh. Just thinking about that night pain. I wonder if it really is worse at night, or if you just notice it more at night? Naaah, it's worse at night.
I have a lot of night pain. It's the worst- I LOVE sleep. I really don't like missing it. I have heating pads, and a tens unit, and I alternate those. I'm also taking tramadol (very modest dose) at bedtime and sometimes later. My moist heating pad- it's an electric one- is a lifesaver, especially for that really bad gnawing, itching pain- don't know if that strikes a chord with you, but that specific type of pain is the bane of my toes' existence. I also have this compound that has all kinds of stuff in it, but it wouldn't help for hip pain- too much flesh in the way there! ;)
I'm on prednisone for the time being- I hope your experience tapering off is easy as is possible!
Hi Mimi, the other thing I use is melatonin - helps me go to sleep, keep a better sleep routine, and sleep deeply and wake up less. Unlike some supplements, when I forget it, I don’t miss it, but rather it sets me up for such a good sleep routine, that I still sleep really well. It’s not going to fix the pain, but for me it’s been the thing that tipped me to healthy sleep once the pain was broadly under control.
I'm sorry you're having such a bad time at night. I'm generally doing ok at night at the moment but this hasn't always been the case and I totally understand how the lack of sleep grinds you down.
For me, the turning point with night-time pain was when my rheumy started me on amitriptylene. Taken an hour or two before bed it makes me sleepy so I can get to sleep but, more importantly (for me), if I did wake during the night because of pain and stiffness or even needing to go to the toilet it kept me sleepy enough to be able to fall back to sleep.
I don't now take it all the time now, just when I need it if I'm particularly uncomfortable or having a bad spell with sleeping. It's reassuring to have a packet in the medicine cupboard and be able to dip in for a dose for one or two nights when needed. Doesn't make me groggy in the mornings either.
Most nights I have a heating pad and make sure I'm nice and warm before I fall asleep. I also use pillow supports underneath my knees otherwise lying flat exacerbates knee, hip and lower back pain. On my side I have pillows between my knees to keep my hips aligned as well as by my sides to support my arms to help with shoulder issues. And I find the pillows also help with arm comfort as I'm wearing a night-time brace on my left elbow because of cubital tunnel issues (speaking of which my left fingers now going numb with typing!).
It's a bit of a "mix and match" arrangement depending on how I am any given day.
You could also try an egg-crate mattress on your bed for comfort sake. It won't help alot, but it does ease the pressure from the mattress that might aggrevate the sore joints. Helped my hips and shoulders but not the smaller joints. Not a cure-all by any means but it does make the bed more comfy.
The pain specialist suggestion by mataribot was great and you might find your biggest help there.
This ritual works for me. At five in the afternoon I take two Tramadol and two Flexeril. One hour before sleep I take Trazodone, put some brainwave music on and meditate. It also helps if you watch something funny before sleep.
I have night pain and sleeping trouble too. I like using a body pillow to help ease pressure on my hip and knee by raising them a bit, and there is always the potential of using it to whack Mr. Chicken if he complains I'm keeping him up lol.
Melatonin helps some, but I've been using Zyrtec and Benadryl daily for years and am tolerant of it so no help sleeping. If I sleep in the same position for long when I move I feel/hear a loud pop that is deep in my hip/spine and takes my breath away, waking me from even deep sleep. Napping during the day does make a difference, if I get a nap in then I usually feel a bit perkier than the days I miss out on one. Naps are a wonderful thing :D