Very much a minefield, but I hope enough awareness that a lot of meds can help and many docs just aren't blowing patients off. There is a lot of progress being made in Pain Management centers
Yes I think it could be a minefield as well. Right now, I too will be sticking to "it has nothing to do with my psychological condition, ok?" :) I also think it should be researched more, if it will be helpful for the patients (and not just PsA patients, I mean, if it is true for us, than it is true for a lot of diseases) but of course it is up to the medical researchers :)
Well I think psychopharmacists should definitely come and do their research in my country, because if they can find a cure in this madhouse of a society, that will definitely be a cure for everybody!!!
Well I, for one, have a better mindset since I started Enbrel. And it improved right away, as fast as my physical PsA symptoms diminished! This is very interesting--so maybe depression is an actual PsA symptom and not just a result of having to deal with all the pain?
Well, not depression as a symptom but "depression-like" symptoms maybe? I have a bit of a history with depression. I've been diagnosed with major depression a few times since I was 17 and in most of them, the most distinct symptom of it was that I couldn't sleep no matter what I did. I think it's atypical depression? I don't remember now. And the thoughts that were torturing me day and night, my god. The "biggest" one of them was after I learned about the IBS and wasn't really responding to treatment, and only in that one I slept and slept and slept.
When my second flare began in November, it began with sleeping endlessly. Somedays I even slept for 20 hours and it was the first time I was experiencing such a thing. At one point I thought "could I be in depression?" but it was not "I just want to sleep" but more like "I HAVE TO SLEEP because I don't have the energy for anything else" and the usual "bad-thoughts" were not there (well, no more than usual at least :). Then, after about a week or so, the horrible pain started in my SI joint, and that's when I knew it was something else, something physiological.
And after the diagnosis, being depressed is quite normal I think, since you learn that it's for life and you just have to live with it (like when I got my biggest episode of depression after the diagnosis of IBS). I think something like 30% of PsA patients experience depression at some point? I don't know. What I'm learning is that this is a very, very complex disease.
Yes, it is a complex disease! I didn't have severe depression--I didn't even mention how I felt to my doctor until I was desperate last Spring. I was hard hit when I was told it was PsA 6 years ago. I kept my feelings and fears to myself for a long time. I'm pretty sure my worries about PsA were interfering with all of my thoughts, and the sadness was hard to conceal, but I did a pretty good job of that. Going to bed at night and getting up in the morning were the worst times of my day, haha, along with taking my shower, getting ready and thinking about what I had to do--whether it be going to work, cleaning our house, bbsitting grandkids or doing something more fun--it was a challenge for sure! But, it's so different since I've been on Enbrel.... I hope this lasts. I'm nearing 6 months and it seems like it loses effectiveness for a lot of ppl after this amount of time. :-(
Grandma J, I hope you keep benefiting from Enbrel for as long as it is possible. I would hate to know that you were feeling worse again.
Sybil, I would say that fighting a battle not to sink is "pre-depression", so when you feel like that, fight as hell to stay there! Full force depression is when you lose that battle and start fighting to go upwards again, surface and breathe. And about the insomnia, I think it is weird that we both had sleep problems. Not being able to sleep was one of the things that defined my life. I still go to sleep around 6 am in the morning, because I prefer not to toss and turn in bed but get knocked out as soon as I put my head on the pillow :)
The literature that I’ve read says that depression is “co-morbid” – goes along – with PsA. One of my rheumatologists said that the depression comes from being in pain. Makes sense. But things unfolded for me in a way that suggests otherwise. When I went on the anti-TNF therapy (Enbrel) my depression started to lift within days. It was many weeks though – something like three months – before it did much for the pain. So the “depression follows pain” hypothesis doesn’t make sense in my case.
There has been some research done, I believe, on the role of TNF in depression. Whatever, Enbrel has done at least as much for my depression and the quality of my sleep a it has for my physical pain.
Could it be that once that you begin your treatment, you know that you are doing something that will relieve the pain, even if it might take a while, so the pain and the disease becomes more tolerable and less depressing?
I've had sleep problems for years--it used to be I'd fall asleep just great at 11 pm but then wake up at 2 am and lay awake for 2 to 3 hours, thinking my alarm would go off at 6 am and knowing that, once again, I'd be exhausted all day at work or at home. 4 to 6 hours of sleep during the night was and still is the norm for me. I never took naps up until a couple years ago. I finally started taking one Tylenol pm every night. Sometimes I fall asleep watching TV and forget to take it--those nights I don't sleep well.
I'm fine with a lot less sleep than most people need. 7 to 8 hours are recommended to be healthy, but if you can't sleep, you can't sleep! I have trouble just laying around, too. Maybe I'm a little hyper. I do get tired--some days at work I just wish I could lay my head on my desk and snooze for awhile.
I think, too, like so many of people with PsA, that I had it years and years before it was diagnosed. It was more in the form of flares than steady bombardment of symptoms, though. I especially remember a lot of tendonitis and aching pelvis/hips, lack of stamina--that has been a symptom since I was a kid.
In my case, LL, the sadness and hopeless thoughts lifted right away, like Seenie's, but it wasn't because I felt confident Enbrel would help me, because I didn't.
Grandma J my mother sleeps just like you! She sometimes comes to my room when I'm in my hometown at 3-4am, it is the time she has slept and woken up, and I haven't even slept yet :D And then she is confused and tired all day long.
Lack of stamina was an issue for me too. And (you'd be surprised) I was quite sporty, I did so many different sports, I was especially good at athletics (high jumping, 100 m run etc), but when we were at training I could never run more than one lap around the field (which is 400 m). I just couldn't. So our trainer would let me stop (I think he was scared that I would just drop in the middle of the training :D ) and the team would give me the evil eye as they ran :D
So I think we have been showing symptoms long before diagnosis as well. I've been thinking that my back pains have been so much worse in the last couple of years. I ran to the emergency room every month. And my back was much better when I took the antiinflammatories. So maybe I had it for a couple of years but I confused it with scoliosis. I thought I had diabetes a couple years ago, because of the fatigue again I think. So I made my doc do the tests for diabetes but there was nothing. I was so sure that there was something wrong with me. Sometimes I feel like this disease was trying to make its way to the fore all my life when I think about all the little things. And it finally did.
Sybil, I fancy thinking about myself as an owl :D Owl is my spirit animal :D
Oh, for sure, ladylazarus! Look at all the symptoms that bothered you throughout the years. How long our bodies fight us before we lose the fight--or should I say, win the fight and get the right diagnosis. I, also, could do things in short bursts. I would beat my peers in the 60 yard dash in high school, but, don't ask me to run cross country! I couldn't run around the block when trying to race my siblings as a kid. And, I can't swim more than 10 feet and get completely exhausted. I was diagnosed with asthma about 20 years ago after chronic hoarseness, so I always thought asthma was the reason.
As I we commented earlier, I worry about our kids. Our youngest daughter was checked for arthritis when she was in elementary school. She almost never feels well. She has no skin problems at all, but she complains about feeling so tired all the time. She's only 23 and has ridiculously high blood pressure ever since she had a baby and had preeclampsia 3 years ago. The doctor recently quadrupled her bp med and it' s still not under control. Her older sisters think she's a whiner and tend to think she over exaggerates her pain. I'm worried that she has something "brewing", but I'm hoping once she finishes college and the stress of that, she'll feel better.
Grandma J, I am really sorry about your daughter feeling bad. College is hard, I know, even harder when you are close to finishing. So I hope she feels much better soon.
And sorry about the late reply, I wasn't feeling very good last night, I didn't even have the energy to open my laptop.
Thanks, and no problem!