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Living with Psoriatic Arthritis (PsA)

Not sure what's normal and what's not


#1

I’ve felt crappy the past few days. Pain pretty much everywhere. Kinda feel like I’m coming down with something but I know I’m not. Fatigue for no apparent reason. Still going to work cause I must. Doing everything 1/2 a$$ which I hate. Do you guys feel like this too?


#2

Yes.

It’s my usual response though … get the best treatment you can and you will massively increase your chances of feeling a lot better in general as well as protecting your joints.

I still have a disconnect when I feel ‘blah’. Partly because we are talking something quite vague … everyone feels tired sometimes, everyone gets fed up. I always question whether it is due to PsA or just to life, especially as I have responded well to the drugs and the fatigue etc. is not as dramatic as it was.

There’s a recipe for feeling better, but no magic dust, it all takes work. It goes: Drugs - especially biologics. Regular exercise even if you’re busy as hell. Rest when you can. Eat the best diet you can afford / can be bothered to.

Oh, and personally I have had to work on the half a$$ thing. I am gradually realising that I can leave things half-done and go back to them. That my somewhat grubby house will always be this way. That when I go out I might not look quite as nice as I’d like to because I cannot be a$$ed. That I can’t always be there for people and so on & so forth.


#3

From what I understand this is pretty common with PsA. I definitely have this issue a lot over this past year. The best way I describe it is that tiredness and body ache that come with the flu, just without the flu. I still have trouble accepting it myself. I feel so unhappy not being able to get things done, and yeah half-assing it at work and other parts of life. But it is what it is. Sorry, I don’t have any good advice, just know that you are not alone in this.
I find myself humming that ditty from Finding Nemo “Just keep swimming, just keep swimming”


#4

I am sorry you are having a rough time! I can really relate to the “flu not flu” feeling. Since I started the biologic Enbrel that feeling has greatly improved. PSA is such a hard disease to deal with but in my experience the right medication can really help the fight. On bad days, I try to not be too hard on myself for not accomplishing everything I need to. I only have so much energy I can give and that is okay!


#5

Thank you for your input. I really need to see my rheumatologist and get on a biologic so I can feel better.


#6

Thank you. I needed to know I wasn’t alone.


#7

Yes, Fatfinger, it’s a yucky feeling. I remember feeling so sick all the time I kept saying there’s no way I’d make it to 70 (I was 60 when I started Enbrel). The constant achiness and stiffness made me feel weak.
Consequently, 2 years after I went on Enbrel, even though I felt a lot better, I had a coronary blockage and got a stent. I wouldn’t doubt if all the inflammation I dealt with for several years had something to do with that!
So, knowing what inflammation can do to your body is reason enough to get a biologic, and hopefully it will work well for you.


#8

Yes, I fell like you explain too often. Fortunately, my office allows employees to telewor 3 days a week and have a medical accommodation that allows me to telework up to 5 days a week.

Can you ask for a work accommodation to help when you’re feeling poorly? Perhaps, be allowed to take a break to lie down some where or work from home?

A biologic + methotrexate helps reduce my symptoms a lot. I’ve noticed if I stop taking the methotrexate I’m much more fatigued and feel yucky with flu-like symptoms.


#9

I work in retail so it’s not like I can sit and do my job. It’s actually a very physical job and I am grateful that it is. I feel like I would have lost more of my ability to do just about anything if I didn’t have my job. On good days I push myself hard and on bad days I will go to the stock room and sit on the step ladder more often than I usually do. They can’t keep me from going to the restroom so I go there too. When at work I walk about 7 miles in 8 hour day. May not seem like a lot because it’s spread over time. I really doubt that they would make accommodation based solely on my request. I hurt myself at work once and basically they just didn’t schedule me until I didn’t have to have any accommodation at all. So if I want to get paid I have to work like usual.I know that there’s the Americans with disabilities act and that they have to accommodate but I’ve not been declared disabled and if anyone ever saw the way I work they’d never give it to me! I can only work because I have pain meds. :confused:


#10

It’s very difficult to deal with a PaA diagnosis I think. I’m not doing it very well because I’m going to battle with it & being in denial. I am still determined to do everything I did (work FT go running/cycling go out socialising ex) and think that I’m not going to be cranky & exhausted. I went to work every week while being really sick on methotrexate tabs because it wasn’t going to be a thing. I put it to the back of my mind & pretended it’s was not happening. I think you need to somehow learn to coexist with it & not use up energy fighting it. I’m still quite far away from achieving that tho


#11

Good luck, @Su26.

I tried that for several years—I mean forging on without any meds and trying to keep living a normal life…my pain kept getting worse, though. It actually sort of snowballed. I was doing everything as I always did but was getting more and more exhausted and the pain kept increasing. Finally I got desperate and went on Enbrel. I’m pretty sure avoiding meds—the important meds such as biologics—was not good. I have lots of damage in my feet and back. I have a stent in my heart. I truly think this is all due to my untreated PsA. Maybe it all would’ve happened anyway, I’ll never know. But I feel so much more “alive” since being on Enbrel, I’ve never regretted taking it.

Maybe you’ll be lucky and your PsA won’t become more severe, but if it does, know there are good, safe meds to combat it.


#12

You’ve just summed up my whole personality.


#13

It can be difficult not to be when you are so tired that it just hurts. Tired doesn’t really even cover it. I am fairly newly diagnosed and will admit that I’m struggling to come to terms with my diagnosis. It feels so bloody unfair but that kind of thinking isn’t helpful at all


#14

I am in meds I’m on Methotrexate & as hard as it is (I do feel like chucking it & taking my chances) I’m sticking to the program & doing exactly what the Rheumatologist advises.


#15

No way @Sybil! Somehow you don’t seem like that at all!


#16

Actually, I shouldn’t doubt that you’re exhausted! But, cranky? Well, I don’t live with you so I shouldn’t say you’re not cranky, either! :hugs:


#17

Su, have you asked your rheumy about Mtx injections instead of tablets? If it’s nausea you get, the injections can help prevent that.

I’d be much more miserable without the meds. At least I have a life to battle through grumpily (at times anyway - I do love a good exaggerate), prior to Mtx etc. there wasn’t much going on at all.


#18

Sybil. Yes I spoke to him & he changed me ages ago. This has improved the sickness a lot. I still get sick the night I take it & sometimes the next day but it’s much better. I can’t expeess how kind & understanding my Rheumatologist is. He has (& continues to do) everything in his power to help me come to terms with things. Methotrexate is helping for sure but it Just makes me so tired and muddled. This type of medicine feels like a high price to pay for being well. I’m really just at the start of this tho and am still working on coming to terms with it


#19

Oh that is great that you have such a good rheumy.

Thing is with meds, it is not just about how well we feel in the here and now (though I for one feel immeasurably better than I did with uncontrolled PsA) but, importantly, about slowing down the disease and preventing joint damage. Any degree of joint damage is likely to be very painful and, lets face it, disability is a real possibility too.

Perhaps in time you will proceed to biologics … many of us find that there are very few side effects with them. Plus, although Mtx can be very useful in adding to the effect of the bios and makes them work for longer, it is often possible to reduce the amount of Mtx taken when it is in that ‘support’ role.

And one more thing … I guess you’ve seen all the recommendations here to drink plenty of water all week long when on Mtx? That seems to be something even the best rheumys omit to mention. H2O helps reduce Mtx-related tiredness I think.


#20

Remember though @Su26 there are other DMARDS than just mxt. Mxt hated me and consequently I simply loathed it, but sulfasalazine loved me and even worked well for a while. It really worked well for a while.