Hi. I just wanted to say hello and give you a little background on my experiences. I was first diagnosed with psoriasis when I was 5 years old. My dad had the big, plaque psoriasis. I have guttate (raindrop) psoriasis and inverse psoriasis. I started having symptoms when I was about 18 years old that my doctor could not diagnose. Any time I had to grip anything for very long, my hands and arms would ache all the way up to my shoulders sometimes. Hands will swell up after only a few minutes of having to grip something. My doctor said maybe I was overdoing it or weak. Hello? I was very active and bowled on 2 different teams twice a week. No way was I weak. I was in very good shape. I learned to use pain killers and try to limit doing things where a lot of gripping was involved. Other tricks I used was to take NSAIDS before such chores, switch hands and rest often. I learned to cope. Would sometimes have nights where I could barely sleep. About 12 years ago, I started having finger pain and developing nodules on the knuckles closest to my finger nails. My doctor said, yeah, you have arthritis. This year my PsA went into a full blown exacerbation involving almost all my joints. I was in such pain, I was finally referred to a rheumatologist. The rheumatologist diagnosed me the first time he saw me. So, since May of this year I have been having a barrage of tests, lots of blood work and trying different meds. Sulfasalizine messed with my liver, so I wasn't on that for long. It didn't seem to help and the dr. confirmed that. He said my inflammation markers actually rose while I was on it. I just started methotrexate this week. Hoping it will help without hurting my liver. The thing I am amazed at is how terribly tired I am. Can't sleep enough. Hope to learn more about this autoimmune disease I have been diagnosed with. Need to come to terms with the diagnosis. Happy to find this support group. I bet I can learn a lot here.
Extreme fatigue is definitely a strong symptom of PsA. It's actually called "crushing fatigue" a description which really hits the nail on the head. I've had stretches of time when I felt like my body was going to curl together and crumble. I'd ask other people if they felt like that and they'd say no. I wondered a lot if I had narcolepsy, because I had to fight so hard to stay awake, even when I shouldn't have been so tired. Is that how you feel?
More recently, I was just tired-or weak. Taking my shower in the a.m. would make me feel so tired I'd want to go back to bed.
Now that I've been on Enbrel for about 9 weeks, I feel 1,000 times better. Just wanted to tell you that so you know there's a possibility of feeling "normal" again. And, I have no SEs from Enbrel. I was the biggest doubter that anything could help me. I refused methotrexate because my mom had bad SEs from it. Refused Sulfasalazine when rheumy told me it wouldn't help my psoriasis. Had prednisone burst for a couple different things (back pain, asthma, hives). Prednisone is good stuff--it makes me feel light as a feather and clears my head in an amazing way--prednisone is really bad, though. Now that I know that, I'll probably never take it again--it's too dangerous.
I wanted to encourage you and tell you I hope you get the right meds/biologic that works for you. Good luck!
I am ridiculously tired all the time too… I take humira once a week. 10 methotrexate once a week. 20 milligrams of prednisone a day and get cortisone injections somewhere like every 3 - 6 months… Still want to sleep all the time… Sometimes I wonder why bother…
Hi Nelly....I wrote and now rewriting this comment....
I'm so lucky Enbrel really took away my fatigue....in fact,I think it's making me a little hyper and, if anything, I just don't seem to need as much sleep anymore now that I'm on it. Is Humira helping your other PsA symptoms? Does mtx have a SE of fatigue? Or, maybe you just need to be reevaluated by your rheumy and started on a different med routine. I wish everyone would have the good luck I did with Enbrel. If you've been on prednisone for a long time, can it cause fatigue? My rheumy or internist wouldn't give me any prednisone. I don't want to be bossy, but it would be a good idea to stress to your doctor you just aren't feeling well at all.....hopefully, he/she can change up your meds and give you things that work.
nelly said:
I am ridiculously tired all the time too... I take humira once a week. 10 methotrexate once a week. 20 milligrams of prednisone a day and get cortisone injections somewhere like every 3 - 6 months... Still want to sleep all the time... Sometimes I wonder why bother....
Thanks for the great info, Grandma J! I am just starting this battle and an encouraging testimonial like yours is very good to hear.
Nelly, I agree with Grandma J. You need to get back in to see your doctor. Good luck. I hope things improve for you.
Grandma J said:
Hi Nelly....I wrote and now rewriting this comment....
I'm so lucky Enbrel really took away my fatigue....in fact,I think it's making me a little hyper and, if anything, I just don't seem to need as much sleep anymore now that I'm on it. Is Humira helping your other PsA symptoms? Does mtx have a SE of fatigue? Or, maybe you just need to be reevaluated by your rheumy and started on a different med routine. I wish everyone would have the good luck I did with Enbrel. If you've been on prednisone for a long time, can it cause fatigue? My rheumy or internist wouldn't give me any prednisone. I don't want to be bossy, but it would be a good idea to stress to your doctor you just aren't feeling well at all.....hopefully, he/she can change up your meds and give you things that work.
nelly said:I am ridiculously tired all the time too... I take humira once a week. 10 methotrexate once a week. 20 milligrams of prednisone a day and get cortisone injections somewhere like every 3 - 6 months... Still want to sleep all the time... Sometimes I wonder why bother....
Thanks, Sybil. Good to know I can improve and won't always hurt this bad or be this tired. There is some sunshine behind those dark clouds! Hopefully I will have some good news later on and be able to encourage other newbies. =)
sybil said:
The trouble with fatigue (I guess there are all sorts of trouble with fatigue!) is that it's hard to imagine it going. But it can & it does once you get on the right meds and once they start to work, which can take a while. And to accept your limits without thinking of them as a permanent feature. Counter-intuitively it helps to keep moving, to get some fresh air and do any kind of regular light exercise that you can manage. 'Full-blown exacerbation' - yep, been there. This is likely to be the worst part, 'The Gap' as we call it here (a term that one of the moderators, Seenie, coined to describe the waiting period after we've been diagnosed and started meds.) I know I found a lot of comfort, reassurance and hope once I discovered others were going through the same thing and I hope you do too. Hang on in there Bronco's Fan.
Hopefully, you will! And, the sooner the better. For me, there's always this little devil in my head reminding me of all the things that can go wrong, so I need to be continuously telling myself that life is full of surprises and to take one day at a time. Being a negative Nancy (sorry to any Nancies out there) that's a real challenge for me! Which is why I'm on this support group a LOT!!!
Bronco's Fan said:
Thanks, Sybil. Good to know I can improve and won't always hurt this bad or be this tired. There is some sunshine behind those dark clouds! Hopefully I will have some good news later on and be able to encourage other newbies. =)
sybil said:The trouble with fatigue (I guess there are all sorts of trouble with fatigue!) is that it's hard to imagine it going. But it can & it does once you get on the right meds and once they start to work, which can take a while. And to accept your limits without thinking of them as a permanent feature. Counter-intuitively it helps to keep moving, to get some fresh air and do any kind of regular light exercise that you can manage. 'Full-blown exacerbation' - yep, been there. This is likely to be the worst part, 'The Gap' as we call it here (a term that one of the moderators, Seenie, coined to describe the waiting period after we've been diagnosed and started meds.) I know I found a lot of comfort, reassurance and hope once I discovered others were going through the same thing and I hope you do too. Hang on in there Bronco's Fan.