Woken by pain again in the early hours- and feeling bleak. Methotrexate and sulphasalazine failed to work on underlying disease and non-steroidal analgesia insufficient to manage day to day pain Struggling to cope with work due to overwhelming fatigue. Had a difficult occupational health assessment - line manager had organised it to be "helpful" but the doctor just queried why I had chosen my job and had I thought about giving it up as assessing work reliability and likelihood of being ill was his key role. Not helpful to me! - and now even though I know I probably am too unwell to be at work at the moment I feel I can't not go. Using my holidays to cover sick days and out-patient appts so not ever getting a break when I feel ok. I suspect from looking at other people's posts they've had to deal with similar.
Rheumatologist agrees have failed to respond for sufficiently long period to be eligible for Enbrel - but now need to wait for the assessment tests (not sure what that will entail). Even though only a few weeks till I get those not sure how long after that before I get started on new treatment and then the time for it to be effective.
So would love to hear what helps people get through those bleak morning hours when you look at the clock and see 03:30 yet again!
I've been spending a lot of quality time in the middle of the night on my smartphone in bed. It's rough, isn't it, when the pain wakes you and everything seems overwhelming. I'm about to go to bed myself (perchance to dream.... or maybe just play backgammon on my phone for a few hours). Hang in there. You're not alone.
Hi AuroraB, when I found the nightime stiffness and pain too much to sleep through or get back to sleep with if I woke up, my rheumy started me on a low dose (10mg) of amitriptylene taken at night. Although at higher doses it is an anti-depressant at the low doses we are given it works on nerve pain so you get an analgesic effect, it also makes you drowsy so getting to sleep and, importantly, staying asleep/getting back to sleep after waking is improved. It doesn't make me unduly groggy in the morning either .... bit tough to actually get up (too many slaps of the snooze button on the alarm) but once I'm up I feel absolutely fine.
It is one of the very common drugs that are prescribed for patients with PsA (and other arthropathies) because it really does help avoid the 0330's. Tell your docs you're struggling with sleeping, even ask about amitriptylene, and see if they can help. Good luck.
I'm afraid I know the feeling all too well. I went straight to Enbrel, which some would think that was fantastic. But not for me after 3 months, my body could no longer fight off the smallest of infections, so I had to come off it. I would gladly send you all my left over Enbrel if I could. :) I am on to Arava (leflunomide) but find myself too afraid to start it because of my experience with Enbrel. The only thing I find that puts me back to sleep is reading during those wee hours. My Dr. also suggested Melatonin 6 mg at bedtime, that really helps most nights.Good Luck.
Hi AuroraB, I can sure relate. When pain wakes me up at night (almost every night) I grab my heating pad, try to read a book or listen to music or watch TV and just try to distract myself with something besides the pain. It is so hard when you have to get up and go to work the next day. I really would like to find a timed release pain med for night time use.
You just get through it and then it's over. Slogging ahead is the key. I had the kind of job where at first, where took naps under a desk in the back of the office, and eventually, I went to a few days a week, and then finally just gave it up. A year later I applied for disability (I didn't know better) and since I had been to a doctor regularly and having treatment, I got disability with no problem. They made me wait a year though, till I was 55. I think psoriatic arthritis is on their list and my doctor was cooperative and it just happened. I was prepared to get a lawyer or whatever, but I didn't need to.
My doc put me on amitryptaline as well...but my nephew (who took it for about a week before quitting) warned me that for some people even low doses causes night terrors and horrible graphic dreams. He would take it, go to sleep, then wake up in the middle of the night having horrific nightmares that scared the bejeezus out of him - and he's a pretty rational, logical kind of guy. Luckily I haven't had any of those dreams, and my sleep has gotten better, but I still can't get to sleep. The main difference for me (post amy) is that I tend to stay asleep better. I've started taking my nighttime meds at about 8 pm. By 1 or 2 am I can finally get to sleep. (I was taking them at 10 or 11 and ended up not getting to sleep until 3 or 4 am every single night...and then getting up at 6:30 to take my kiddo to school).
As for keeping or giving up the job - that is a question only you can answer. I started having a lot of pretty horrible physical issues related to my PsA, but kept on working for another 3 years. Finally I got so bad off that my doctor looked me straight in the eye and told me if I didn't quit my job I was going to die. Made the decision to quit pretty easy after that. I had a very high stress job (CEO of a nonprofit organization). My blood pressure was through the roof - even on blood pressure meds. My Psoriasis was completely out of control, my PsA was inflaming so many joints it was easier to point out which ones weren't affected. The muscles in my back and legs would spasm out of control to the point of hospitalization. I was on enough anti anxiety, depression, and pain meds to tranquilize a horse etc. etc. I've been out of work now for 16 months. My PsA is still flaring out of control, and I still have plenty of days when getting out of bed is the most inspiring thing I do all day, but at least I can take naps or lay down when necessary now.
They are working on another study of our friend Amy. It appears rather than a med you take every day for ever. It actually seems to do its deed after a week or two and resets everything for a while. 25mg seems enough.
I have no advice about work other than most of us do better if we do have expectations and "work" The vast majority of folk go downhill or hit bottom and stay there when they quit. On the other hand if we are dealing with a high stress and/or physically demanding job that makes things worse thats not good either.
Its one thing to refer yourself to the vocational rehab system (in the US) but if you have an employer "help" you by reffering you for a work evaluation watch out. the chances that he wants to help and figure out if there are accommodations that can help are a lot less than he is looking for a way to can you.
Thank you all so much for your kind comments and helpful suggestions. It is great to hear from people who have had the same experience. I'm going to try using some heating on my elbows etc to see how that helps with the pain when it wakes me. I'm going to check out those iphone games too as a bit of distraction! I have no problem getting off to sleep, I think the painkillers just wear off in the 4-6 hour time frame, and the long acting NSAID isn't doing its job (am on my second variant of that). If no improvement with those measures I need to then think about seeing the GP and low dose amitriptyline.
I love my job with a passion and will do all I can to keep it and do it well, and I'm lucky in that my rheumatologist understands how much that aspect of my life means to me. I've now contacted the rheumatology day clinic and they are going to send me out some more information about enbrel. I know that the enbrel doesn't work for everyone, I'm really pleased to be getting the chance to try it, I just need to not pin all my hopes on it too much - realistic optimism is what I need to go for.
This was my first post -thanks for sharing your experiences, much appreciated.
Mines closer to soon after 4. sigh! I jump on here or read a bit, all depends on if I'm still tired or not. I often don't get the luxury of 'waking up" I have chronic insomnia and get better rest during the day but don't get that chance very often either. Hot showers will ease the ache and sometimes make me drowsy again. Sometimes things work and sometimes they don't. I hope you get relief in one form or another. Will keep you in my thoughts
Now that you mention it.... I wake at around 11:30, 1:30, 2:30, awake at 3:30, stay in bed till 4:30 then I get up. I'm good for a few hours in the morning, then the rest of the day is a bust. I haven't had a chance to talk to the doctor about it, but that is coming up. It started around the time changed. I never had a problem on Enbrel, but am not on Humira. I don't know what is causing it, but it would be nice to sleep better. I would probably feel better in the day. The witching hour is getting earlier and earlier, it is now noon.
Oh, how I can relate to 03:30!!! I wake up at either 2:32 or 3:23 most mornings. On the dot. It depends on whether or not I go to bed at 10:30 or 11:30. LOL! What I do is get up, heat up my rice sock (heating pad), go to the bathroom, get a drink of water, take an additional 1mg of melatonin (I take 3mg before bed), climb back in bed, apply the heat to whatever area is bothering me most (usually lower back), and at least 2/3 of the time fall back to sleep.
I take12hour meds....but they do not cover me for 12 hours. My doctor prescribed Tramadol for breakthough pain....It would be nice if it worked.
I am on the computer in these early hours....time when I will not be distracted by "chat buddies"...I have my prayer and quiet time in these hours also.
SOmetimes around11:00 AM I will nap for an hour or two which is lovely.
Right now I'm excruciating post surgical pain....poor kitty coudn't understand why she couldn't sleep in her favorite spot under my arm, soaking up the love.When Itold her "NO!" she looked at me quizzically and then hopped off recliner and went to lay on my bed.I wish I could make her understand..
2:30 am and I'm up with my hands swollen up like crazy, in terrible pain, despite taking all the pain meds at my max dosage. My husband helped me change into my pajamas at midnight, I couldn't even do it myself. UGH.
So sorry you're having such a rough time. I also have had extreme bouts of fatigue, but I'm doing better now and I'm not sure why. Enbrel seems to work for a lot of people, so you may be feeling much better soon after starting Enbrel - I started it over a month ago and doing very well.
When I was having extreme fatigue the advice I got from this forum was to eat lots of protein and someone suggested making a protein shake in the morning. I've been making a whey protein shake with almond milk, fruit and kale or spinach every morning for about 6 months. I can't taste the kale or spinach in the shake. Of course anything with protein will help. And I do think it helps me. Also, exercising will help boost your energy when you have enough energy to get started.
I still have problems with fatigue, in fact today I'm very fatigued. But I'm having ,many more fatigue free days.
Its a pain, those hours of darkness when you feel all alone.
I now don’t try to fight them, I just try to get some useful things done, bill paying online, research, catching up on reading. I just roll with it now. Its ok if I’m not working the next day but makes my work life a bit hairy at times.
I have, on occasion, had a nice hot bath then gone back to bed and slept again for a few hours
Just been discharged from the local hospital after several days treatment for sepsis -admitted shortly after my opening blog. I wonder if things were brewing up then. So seeing 3:30 in pain in a hospital bed and being unable to help myself is so much worse than being in my own bed at home - so now I'll just be grateful for being home. The doctors were busy at night but when they turned up they did try different analgesics of increasing potency for me. Consultant was great each morning trying to make a realistic plan each day. I seem to have come home with enough drugs to open a small pharmacy! Absolutely shattered now, arthritis flaring badly, but so happy to be back in familiar setting.
A large Enbrel info pack has also arrived so will read through that when I'm able to concentrate a bit better. Being ill has made me appreciate that things are not so bad after all, need to hang on to that feeling for as long as I can. Need to see the glass half full rather than half empty, although not always so easy to do.
Aurora, how awful! When things go wrong with us, the wheels just come off. I’m glad they’ve reattached yours and that you’re on the mend. Take those meds (painkillers too, they are very important to keep you moving!) and keep us in the loop.
