Why am I awake because of pain, stress and no kidding fatigue. I just can not seem to sleep well anymore. I have taken my pills, done my relaxation routine and still I am trolling the board looking for some kind of wisdom. Finding lots by the way but still exhausted but unable to sleep.
Apparently this year is going to be the coldest since 1990 in the north. When I say north I am just a couple hours south of Santa. The minus 30-40 weather is ( I believe ) making my joints nuts and the cold-dry is sure not helping my skin. Then skin on my hands not affected by psoriasis is smooth like a baby but the patches are like cracked reptile skin. Ugh. I have so many different lotions, ointments and creams I could open a shop. I see a GP, internal med doctor, a naturopath and a rheumy. Consulted a dietician and a neurologist. I have been having major nerve? Weakness in my hands. Not sure what is worse pain or numbness and weakness?
Why am I writing all this? Not sure if it is just to vent or for suggestions. Ideas are always welcome. My Rheumy is so happy I am doing this well and I keep thinking this is it? This is the best I can be? I have two young kids and work, as what who knows. I did work in an ICU but my docs have all no-no’d the shift work so am in the process of finding a new job. At least my employer has an accommodation policy and are being really, really good about helping me get something meaningful and interesting.
I just feel very burdened and freaking tired of being tired. I am tired of pain all the time. I know this too will pass but oh my heavens- when??? Why can my friends and family not understand this. Am I just whining? It is ok to tell me. I would rather know I need to suck it up than not. I just do not want this to suck my life away.
Kirsten, you are not the only one. I go through periods of not sleeping well. For past cople of weeks I think it’s from being off mtx and humira. Started prednisone for first time Friday and that has helped pain a bit, but increased the insomnia, even though I am very tired. I am lucky enough to work for myself so I can adjust hours I need to work so that does help tremendously.
What helps get through nights like this is reading. I use a kindle app on my iPad. I am in bed bed with lights out, the darkness is great, reading with just light from the iPad. I think the reading in the dark does help to relax me. Hid really helps keep my mind occupied and not thinking about the pain.
I have a supportive family, friends so-so. U are not whining, just gets frustrated when people do not understand. I will explain briefly if I can, otherwise I just ignore them and let them kow they should be glad for their health.
For me, I think it is a matter of finding the small things that help me cope. It’s an adventure to explore and find them, then using them to help.
Don't worry about complaining here - at the moment anyhow, who's here but us in the same boat. You have a lot on your plate right now and worry is keeping you up besides the actual pain. And one of those two causes the other to cycle up. Maybe an antihistamine would help but the timing of the normal start of the day might be a issue if you did use Benadryle. Finding/creating flexability in your work would really be nice.
Additionally -- people tend to hear "arthritis" and think of old people with aches but have no idea how big and deep it can be and if they don't see a limb hang by a thread they don't remember and don't understand. If you try to educate too much at one time they will end to zone out and probably think you are just whining. So educate them but in small but impactful ways if you can.
Yes, pain sucks the sleep out of me. I know it is a difficult life the one we live, and it can be too hard to take it in some days. Somehow, thinking I am not alone in the battlefield makes me feel better. I also challenge myself. If they can be brave, so can I.
You are not whining but venting frustrations. The day we were diagnosed we were given a proper and legal license to creatively and positively get it out of our system periodically. I know how it feels. I understand, and I am sorry to have you at my 2:30 vigil for your sake. I assure you. Morning comes every day with the chance of a better day. Of that I am completely certain.
Oh, Kirsten, please do not think that you are whining. People just don't understand things that they have not experienced. I love it when they tell you they know someone that got incredible relief with Glucosamine and Chondrotin. This is the best place to come for people who understand your pain and fatigue. I see a pain management specialist and about a year ago he put me on time-release morphine. There is now a slight rift between my Dad and I because his girlfriend does not believe I can be on morphine. I don't get to see him as often because of the narrow-minded woman.
I have problems sleeping too. Most of the time it is because I am in too much pain to sleep. I get up and wander around for a while or read with my Kindle. Most of the time getting up for a while helps me to sleep a little longer. I also find that falling asleep in a reclining chair helps too.
I moved to Georgia almost 35 years ago and I am so glad I did. My son has plaque psoriasis and it looks like he has PsA too. I don't know how you tolerate the weather where you live! If you have an opportunity to move south, grab it. When you feel badly, just come here and tell the people who understand you know how you are hurting. Slow down and be good to yourself.
Hi Kristen,
I understand the late nights and whenever I’d have one I always wondered what the main cause was… I narrowed it down to the Prednisone. There’s a natural sleep remedy that works pretty good… not that we want to add another pill to our arsenal but it’s worth getting some good nights of sleep. Ask your doc about Melatonin.
Wishing you a better 2013!
Don't give up. I too have difficulty sleeping but seems to have gotten a little better it seems I sleep better if I can spend time outdoors not really doing much but just getting the fresh air I guess.. As far as the cold goes we had a blizzard here in Southern Indiana (or at least what we call a blizzard about a foot of snow and 50 mph wind gusts). I have osteo arthritis and psa with psoriasis but since I have been spending time out in the cold on the tractor cleaning drive ways and around the neighbors mail boxes I have been feeling better. The cold is really drying my skin especially on my elbows and knees but they never are psoriasis free anyway. I know you couldn't spend time out in the 40 below stuff but it sure seems to helped me and I don't know why. I wish you nothing but the best and believe me venting does help. If it wasn't for this group and family I would be a lot worse off. Also have they ever put you on prednisone? My Rheumy does that occasionally when I have a bad joint pain flare up.
Kirsten, don’t ever think you’re whining…we all need to share the burden of sleepless nights. Its the worst feeling of being alone, in pain, frustrated, worn out, its the time I sometimes can’t help but cry.
Have you ever tried Amitriptyline? I was prescribed it years ago as a low dose (10mg) pain moderator for migraine headaches which seemed continuous and used to suck the life out of me. Its also used as an antidepressant at a higher dose and helps you sleep. I up my dose (with the docs blessing) when I’m in a flare and not at work.
Hope you get some rest, thinking of you x
Dear Kirsten, You're definitely not alone - I go through weeks sometimes months of having 2hrs sleep a night (if I'm lucky) how I manage sometimes I don't know - somehow I just do, I think keeping a positive mind and lots and lots of silence (meditation). As for people understanding - I worked for many years in disability services and with our frail aged, you would think I would be used to the lack of understanding - but it's different when you're advocating for others. I find it much more difficult to advocate for myself without feeling like I'm whining... Again, learning to keep a positive attitude and don't over explain anything - the more you try to help others understand they more they seem to resist - so pick your times when to 'educate' :) lots and lots of love from Annemarie in Australia
Lousise hit it! Amitriptyline is a wonder drug. It took 2 days to change my life (really) I started sleeping the second night but the help it gave for pain management was the real plus. PsA is so stress directed that it can develop its own wheels. A few sleepless nights can create a whole new flare.
Its an old school antidepressant (tricyclic) that has gained a new life in treatment of arthiritis and other autoimmune chronic pain diseases. there are a whole new raft of studies.
Lamb…I love Amitriptyline, its been a life saver during this current flare. I locum doctor at my GP practice told me he wasn’t going to renew my prescription a couple of months ago as I should try not using it…I actually had visions of me dragging him over the desk by his tie! Luckily I didn’t but told him firmly it wasn’t his desicion to make but the neurology and rheumatology consultants and they wanted me on it, and if he wanted to argue it with them I had their secretaries numbers
I just wanted to echo that you're not alone. Two of the most difficult things about PsA are exhaustion and trying to get others to understand what you're going through. One HUGE lesson for me is that I can try to give them a glimpse at what I go through, but they'll never really understand.
