Has anyone been in constant pain, wake up with it, go to bed with it? Well, it has been like that for me for 2 long years. My hands and wrists are so bad. My ankles and back are bad too. People talk about flares, I dont know what those are, I live in pain EVERYDAY. I try to stay positive, force myself to go to work, try not to get depressed. Does anyone else feel this way? I have tried Enbrel, Humira, Symponi, ect. I became immune to Enbrel, it worked the best for me. Then they tried me on Humira, Remicade, and now Symponi. None of them offer relief, nothing is helping. So I dose 4-5 times a day on 10-500 Loratabs just to get moving, just to tolerate the pain. The pills dont even help the pain, barely take the edge off. It is hard to call this life, when I am barely living it. Also, my body is covered in Psoriasis, has been for years, it has NEVER gotten better, only worse. I have tried creams to injectables. Also, side note question: Has anyone experienced shaky tremors in their hands? I have wondered if it is from all the shots and pills I have taken or if the disease is affecting my nerves. Hope to hear some responses. :)
I have had constant pain as well. For about 18 months. I can hardly walk. I spend about 50% of my time in wheel chairs or motorized carts when I leave the house which is only days I have a Doctor appointment. I have a spinal stimulator install in my back and I can focus it on anything lower than my hips. I had if focused on my feet a few weeks ago. It still has made little difference. I am taking morphine about 180 mg per day with no relief. The worst is from when I get up to when I make it to the shower. I had surgery on both hand the first of December and they are getting worse. My hip and knees are right behind my feet and hands.
My back has been bad for years. I am currently only on MTX.
My Rheumy told me in my last appointmnt. that some people w/PsA do not experience remisions. I seem to be one, he says.
No tremors here. Rheumy did say it is affecting my nerves and spine in other ways.
I have been in pain constant pain since September. I also became immuned to Enbrel, which worked well until last March when the psoriasis started and pain on and off in the left hand. I started Remicade in November. He told me it would take 6 months. Just in the last week I have been having pain in my feet, which makes it hard to walk. I take 40 mgs of Predisone a day and my knees are so swollen from them and my elbows are starting.
I also just started getting tremors in my hands sometimes nice to know I am not the only one.
Oh my I never heard about PsA patients not experience remissions. I am sorry you are one, I am praying the Remicade works for me.
I to have tried all the different meds…Enbrel, simponi, humiria, remicaide…enbrel worked great at first then I too became immune to it. Remincaide was helping but started having lung problems. I am now on a trial drug AMG-827. I get two injections every two weeks. I take celebrex, predisone 5mg, pain meds and gabapentin daily. Out of the 2 weeks i have about 4-5 good days. The pain never goes away just able to tollerate. I have pain in spine, hips, knees, hands, shoulders feet…lets just say everywhere. I was in remission for about 6 months then got the flu and the wonderful PsA kicked back in. I stay at home except to go to Doctor and to the grocery with daughter every two weeks. I don’t bathe unless family is home. I have a great support team. Couldn’t do it with out them. remember you are not alone…
In a rare moment, I will confess anyone who says the "pain" goes away is either stoned from their pain meds or a liar.
But with few exceptions (like Don who has a lot going on besides just PsA) those who take a real proactive approach and find a way to move, and work despite the pain improve. Those who rely on the narcos almost always get worse. More and more Rheumys are refusing to Rx them, and more and more pain management specialists use them rarley (a huge turn about) It has nothing to do with the feds and everything to do with the growing body of evidence that that the narcs create pain in time.
I would tell everyone as part of their attack on this thing to work with a pain management specialist to get off the narcs and find alternatives, get some OT and PT, or plan on spending the next years o their lives at home in misery. I was there once.
BTW If your pain is waking you up at night, that is generally NOT PsA. It is either your pain meds, nerve pain, or a Fibro type thing. They are/have developed better meds for that sort of thing even in the last year or so.
Yes. I have an undifferentiated inflammatory arthritis, possibly Reiter Syndrome which I'm told is the same as PsA. I was hit hard with little spurts of relief in the beginning (a few months). Didn't take long until I was in constant agony with no flares. My life is one constant flare.
I have constant pain as well. 4 yrs out of 6 years having PsA. I have tried Simponi, Embrel, Remicade is when my pain started. Humira, i became Immune to it. Doc said it does happen. As for the narcs, pain is so bade some times i want to throw up. I'm on Kadian when needed. I don't like it but it helps take the edge off. I been taking Prednisone for 6 yrs. when i need it. Yes i get tremors to, when that happens, it hurts like Heck. I have PsA in my feet, ankles, knees, lower back, elbows, hands. When the tremors start i feel it, starts at my feet and goes right up my body, it hurts. So your not alone, stay positive.
It may KEEP you up, but it doesn't generally START during the night. and PsA CAN give you some of the "gifts" you mentioned, (so can a lot of other things) PsA can certainly do things that damage nerves.
But there isn't a pain med MADE that will help treat those conditions, Mimi, but they will do is intensify the nerve pain, gradually ramping up for 4 hours or so after you go to bed till the point you want to scream. No matter what you do at that point (even more pain meds won't ease the pain much until you wake up. Even with pain med the first hour or so after you wake up is pure hell. Just about lunch time you start to feel a bit better. So you sit down to relax and enjoy the brief respite only to start all over again until bed time....... the cycle repeat and repeats and repeats.
This is how I think of my flares. In the past year I've felt bad pretty much all the time. I call it a flare when I feel EXTRA terrible. For example, if I'm going along most days just coping, and then pain hits me like a wall and I'm feeling like I can't go another inch, and I need to quadruple my pain meds for a week...that's a flare. It's not like I felt great and then had a few days of pain. It's more like dealing with the tide going in and out, and on some days you get an extra tidal wave to cope with!
mimiB said:
I feel for all of us ! I am in constant pain and have been, for years. When I say flare, I mean that the pain is extra or unusually bad, not that it has gone and come again. I don't know if this is how the rest of you would describe it.
Just hearing all these responses gives me comfort. I am sad to hear that everyone is in so much pain, but it is nice to know I am not crazy and not alone. PSA sucks. I think I need to get out of my immobile pain med haze and start seeing a pain management specialist and doing some physical therapy. I need to stop sitting around and masking the problem with pain meds. I refuse to live like this the rest of my life. Who's with me?? Who still has some fight left in them?? :)
I've had PsA for 30 yrs, and I'm super stubborn....I never accept the status quo! I have good years, and bad years. I'm confident that however I feel today, it can change tomorrow. I try and enjoy all of life, and really appreciate the little things, as well as those around me. I think my stubborness has been the one thing that keeps me going!
Lyna, you are doing the right thing by looking for new way to manage your PsA. I am ALWAYS doing that, and it really does help to focus on new things (just don't get drawn in my quack "cures" or treatments). You never know when something you tried last year that didn't work might help today!
Lyna said:
I refuse to live like this the rest of my life. Who's with me?? Who still has some fight left in them?? :)
mimiB, I had that same pain waking me up at night and I agree with you! For me, it was more manageable - I started taking 1/2 to 1 Percocet at bedtime and I got a steroid injection in my trochanter area and now I sleep through the night. Night time is the only time I take Percocet, and it continues to work for me after about a year of use. Narcotics do have to be used very sparingly to continue to work for a long time. I'm really sorry for your pain; it sounds really bad. I think all of us who have had the disease for any length of time have continuous pain, but yours seems really bad. Will pray for your comfort.
I'm surprised anyone gets much help form vicodin. Its been "changed" some to eliminate side effects(and less effective as a result), but is still bound for the scrap heap with darvocet etc. If you must us narcos, it wouldn't be high on the list.
FWIW if you know someone in Canada, have them send you a bottle of 222's (or ACC) They are over the counter (there) but are pretty darn effective at taking the edge off. They have (for me) just the right amount of codeine but enough other stuff to do a good job. IM torodol is by far the best. It gets inflamation under control right now. For those hips and things try a flector patch at bed time.
Lyna said:
Just hearing all these responses gives me comfort. I am sad to hear that everyone is in so much pain, but it is nice to know I am not crazy and not alone. PSA sucks. I think I need to get out of my immobile pain med haze and start seeing a pain management specialist and doing some physical therapy. I need to stop sitting around and masking the problem with pain meds. I refuse to live like this the rest of my life. Who's with me?? Who still has some fight left in them?? :)
Lyna This is the fourth time i have not taken my Kadian. 3 days now. I like to see how long i cane go with out it. Beleave me i don't like taking this Morphine. I have a very positive attitude, i have a lot to live for, great wife of 33 years, 3 grand kids,i do not take this sitting down. Have no problem visiting my rumy just a bout every month. What ever it takes, there is no such thing as giving up in my book. One good thing, i did loose 30 pounds to get the weight off my legs.
I am having a five month straight "flare" if you want to call it that. I was diagnosed five months ago and it hasent stopped. I also have hand tremors. I was diagnosed with MS years ago and now they think it may be related to psoriasis. My neuro is brilliant, and he thinks there is a connection between the two. I don't know. I just know I am in pain daily. My better half got me a dictation program for typing so I am able to still do school work. I can completely relate. i wish I could get rid of the fear and try to get a pain med referall but I don't want to come across as a seeker. My hands are constantly swollen, red, itchy, numb so bad it burns, peeling, hardening, bleeding.... Now ive been told I cannot take my motrin because I started MTX last night. Been in bed almost 24hrs. Everything tastes and smells the same....BAD. Ihope you are having a better day. <3
Flares vary person to person. To me, they are days when the pain is more severe and lasts for a while. When I was diagnosed, I had been in pain for months. When the Rheumy asked me if the pain and stiffness went away later in the day, I was puzzled as my hands were stiff and painful all day. Since under medication, the pain and stiffness got better and is quite tolerable now. Working and keeping busy takes my mind off the pain and it helps keep me moving. I too have had problems with tremors in my hands. I also have weird twitches in my eyes and neuropathy in my toes. Sleeping has been a bigger issue for me. Pain can keep me awake and starts a nasty cycle - the less I sleep, the more I hurt. I am a believer in staying away from the nightshades and I cannot stress enough the difference it makes for me - of course it may not work for everyone but it is huge for me. I have been sneaking cinnamon into my food in many ways as it seems to help. I say all of this simply as what is working for me, it may not work for others but for me, it has been a huge blessing. I don't think I will ever be totally pain free, but I hope to keep improving and surviving. Hope you feel better soon.
Hi Lyna. I also never have flares. The pain is constant. There are no good days, as far as pain goes. I thought I was the only one like this. My doctor also diagnosed me with fibro, which made me wonder if that was the reason the pain is constant. I know it's hard to stay positive, but do your best. It's the only way to get through this life we've been given. Best of luck to you and I hope you find something to get some relief.
Sheila, you are my sister for life 
We just have to keep trucking. When I’m having a bad REALLY bad day (the kind where I ask my husband to take me out back and shoot me like a lame horse) I try to tell myself ‘at least I’m not dying’ some people who don’t have the choice to stick around this world and live it and would take my pain over their death any day. I try to remain thankful, but some days the pain is just too much. 