I’m new to the site and would love to know what everyone does to manage pain day and at night. I have not slept more than 4 hours at a time in 4 years and would appreciate tips…
Hello Mcr, welcome to LWPsA. Sorry you're a member of this 'club' too! It's just after 6:00am here in the UK .... yeah, another bad nights sleep that I've given up on after several hours of being disturbed by pain. I get by during the day, I have pain but for the most part can manage it by adapting and reducing what I'm doing, resting, a bit of warmth or ice, using my splints or compression and only reaching for Tylenol or NSAIDS occasionally because they don't help a great deal. Nighttimes and sleep issues need better management and I find the only thing which helps me is taking a small dose of amitriptyline, it helps me get to sleep and although I still wake it seems to aid returning to sleep rather than have the pain and discomfort bring me to the fully awake state ... except I didn't take one last night!!!! I feel a bit resigned to never again sleeping the sleep I enjoyed for the first 48 years of my life before PsA struck .... probably until I'm six foot under, LOL ;-)
Hi Mcr!
What I was wondering is how long have you been on Remicade? Could it be that it hasn't fully shown what it can do yet or, possibly, not even started to do so?
It's not usually pain that keeps me awake. I don't often get severe pain these days and I think that when I'm very relaxed I can sleep through almost anything. I once slept through a burglary. But sleep has been a problem most of the time, for most of my life. I've tended to blame stress but these days I have my doubts and I wonder whether some insomnia is actually connected to the disease process itself. Certainly an awful lot of us here are unwilling members of the club Jules mentions but I like to think my membership's expired .... I've slept better than I've ever done over the last year or so and that coincides with getting PsA under good control though doubtless there are other factors in the mix, there usually are!
I have noticed that a lot of folk swear by amitriptyline. I realise you have a very busy life, do you get the opportunity to exercise at all? And does stress at work contribute to sleeplessness do you think? Sorry for all the questions! But just as there may be a combination of strategies you can use there are likely to be several causes I think.
I think I'm very fortunate not to be on amitriptyline or any other of that type of medication. If I can't sleep, I usually take a half a muscle relaxer or a Benadryl but still have those occasional white nights. I'm still not sure whether they're from the PsA or simply that my mind won't shut off for whatever reason. Thankfully, now that the PsA and Graves disease are properly medicated and I'm on the right amount of Progesterone, the white nights are further and further apart. Exercise also helps (for me it's swimming twice a week and frankly, "being physically close" with my husband).
To manage pain and sleep in the winter, I sleep under an electric blanket and have a heated throw when I'm sitting on the couch. I also have a small blanket in my office so I can throw it over my legs or shoulders if need be.
In the summer, I sleep under a flannel sheet, sometimes with my feet out, sometimes not. I have to make sure my shoulders and arms are covered, even if I have an "air hole' for my hands.
Stress at work definitely contributes to sleeplessness. I also agree with Sybil that getting PsA under good control makes a world of difference.
I started remicade in April of this year. It has helped a lot. I have more energy than before, and generally have a lot of improvement, with the exception of restless or no sleep. My rheumatologist says the damage already done by the disease is slow or irreversible and believes that the damage done to my spine is what’s keeping me restless. I do walk everyday, and was an avid practitioner before I got sick, but have been unable to get back to that. I get remicade every 6 weeks and I wished I could do it closer together. I think I really had hoped for a quick magic fix so through research I am realizing that I have unrealistic expectations about my life returning to exactly how it was. I think stress and worrying I may lose function of my hands, etc keeps my mind going at night since I need to work for 20 more years …and want to work! I also worry about my family and feel badly how this is affecting them. I am glad I joined this site as I think getting advice and seeing how others are living life is helpful mentally and certainly makes me feel less less isolated. How long did it take others to "stabilize " after starting remicade and methotrexate? Does anyone know me have spondylitis as part of their psoriatic arthritis? Someone mentioned muscle relaxers? Could pain at night be muscular? Thanks to all for support and sharing your wisdom about this. I could have never imagined I would end up as a chronically ill patient having spent 23 years caring for others…
Hi, Mcr and welcome to The Club. When I went on my biologic (Enbrel) in addition to MTX, it was about six months before I got a good effect, and another three after that before I felt that my improvements had plateaued. It all happened very slowly with me, although I knew within a week or so (from fleeting bursts of energy and mental clarity) that it was going to work. And then there is the question of how much of the improvemnt because of the drug proper, and how much is because of spin-off effects from moving more easily, sleeping better, being able to pay attention to other things in your life besides your pain. It is, as they say, complicated.
Before going on the biologic, I had terrible pain at night: my whole lower half was stiff, sore, on fire and aching, added to periodic violent muscle cramping. Muscle relaxants helped me tremendously. I’m no doc, but I have to wonder whether the chronic joint pain creates muscle tension as you try to move through your day.
Anyway, be a patient patient, and take good care of yourself first, so that you can take good care of others down the road.
Thank you Seenie for sharing. And I am a terribly inpatient patient… And you are right…trying to find something’s big else to focus on helps a lot…it’s as much mental as physical I think and reaching acceptance that some days will be less than ideal…I certainly appreciate the days I “forget” I have this and look forward to having more and more of those days. It makes me more hopeful that for some it took 6+ months. I’m getting better at taking better care of myself…and telling people when I can’t do things. Talking about it here will be helpful because I know people have an understanding of the frustrations that accompany this diagnosis…and reading the things shared by others certainly helps me see that in time it will get better…
Thank you again for sharing. I’ll ask my doctor about possibility of muscle relaxers. I wish steroids did not have so many terrible consequences as when I was on prednisone I felt great…but I’ve been told they do not want me in regular dosing.