Hello folks,
I’m wondering who else has symptoms like mine.
I am unmedicated at the moment for various reasons. Thought I would get hugely worse! Yet my disease seems to come and go on a daily basis.
For example, last week I had sacroilitis so bad I couldn’t sleep and walked bent over double.
This week - nothing in that department.
My core symptoms are still there, toes, tendonitis in elbow and Achilles, and wrist. They hurt/swell daily but sometimes worse than others.
I’ve been googling throat cancer - that’s how sore my throat on right side has been recently, but dr thinks it’s the PSA, albeit he thinks it is unusual.
Today I’m walking fine, throat mildly painful and back knees etc all good.
Just feel so bamboozled by this disease sometimes.
I’ll be going for biologics soon - but I feel like maybe I don’t really need them.
I just go round and round in circles. Still find it so hard to accept I have a serious condition when it’s possible to feel so good. Somebody slap me!
Oh Koala I am so travelling that road with you. …sending best wishes across the continent to you. I am also on the track to biologics as you know. But whenever I have a day where the symptoms are really mild I convince myself I can manage… that I dont need more drugs and that perhaps even I dont have this disease…a misdiagnosis perhaps? Then things change again! …It takes me seconds to convince myself I am better, not as bad as I thought, not needing biologics BUT weeks to accept I really am not well.
.A friend asked me today about disability this illness has caused me…i was quick to say I dont have any disability. … within five minutes I was talking about how I wished I could bend over without pain
Hi Koala,
As PsA started for me, it was mild and the symptoms would come and go, like yours. But, over time, the symptoms were more and more steady, where I would have a “feel good” day about once every three months (I’d actually write it on the calendar!). That’s when the pain became more intolerable, because it just wears you out to deal with pain in many locations constantly. I waited too long before going on Enbrel, and found out too late that by enduring that pain and not treating it with a biologic sooner, I ended up with damaged spine, SI joints, feet and hands. The worst of it is my spine, because having a bad back has really slowed me down.
So, I would recommend the biologic sooner rather than later. I know we all have our reasons–I, a fear of meds and worry that a biologic wouldn’t work anyway…but Enbrel does work really well for me. Whatever you decide, you know your own body and when you get to the end of your pain rope, you will know what to do!
I am still frequently bamboozled, in fact that might be my most consistent symptom. Some years back I had a series of old Citroen 2CVs and Dyanes which occasionally went very well, sometimes conked out for no apparent reason, often struggled but sort of worked, occasionally burst into flames. My body reminds me a lot of those cars these days.
On a more serious note, both my parents died of oesophogal cancer so for obvious reasons that is one disease I fear greatly and I find it hard to stay rational about any throat problems. My throat has been troubling me too, though on the left side. I think it’s PsA too, but I’d like to understand exactly why so I’m interested in what your GP said.
Enjoy feeling good, you’re allowed to! I too can often rev up a bit and cruise down the motorway and in a way, dare I say it, that can be the best thing about having PsA rather than anything else because for some of us it does ease up at times!
However … good days don’t mean it’s not serious. Oh I wish they did!
Thanks Grandma_J! Everything I hear and read seems to tell me that Biologics early = good. I guess I will have to decide (or maybe not, if I don’t qualify anyway) soon.
Thanks Sybil, lol at the old car description! I can surely relate
My rheumy was the one who said that the throat looks likely to be a manifestation of the PsA, as I still have it without MTX and it waxes and wanes. Apparently throat cancer would be more likely to just get worse and worse.
I think I will go back to GP though as I have been getting headaches, and have the smoky smell in my sinuses again, and feeling tired and slightly nauseous. My googling has revealed that some of these symptoms belong to brain tumours - but also many other things too, of course. I do suffer greatly with seasonal allergies though, and so this could be put down to a sinus problem/infection. I’m so tired of worrying about all this stuff and its been causing me anxiety, which makes me not sleep, then I drink more coffee to get by, can’t sleep, feel anxious … and so on.
Okay, thanks for that - waxing & waning is reassuring! I’ve noticed that quite a few people with PsA (and RA too) seem to have sinus problems. I find that alcohol (even pathetic amounts) and dust and travelling get the old sinuses going. Perhaps the inflammatory response we have makes them extra sensitive or something.
Count me in on the waxing and waning throat, sinus and Eustacean Tube issues. Oh, and eye issues. Two weeks ago thought I was going to end up in the emergency room with a throat which swelled up and started to affect my breathing … now have to carry antihistamines and prednisolone 24/7 and fast track to the ER/A&E if they don’t stop it.
I find warmth affects my sinuses the most … which a nuisance when it’s cold and all I want to do is sit in front of a roaring fire.
There with you too koala. Hang in. It is indeed so frustrating. I looked at my husband the other night and told him I hate what this has taken from me. It is unpredictable, never know how you feel, can’t plan, and weekends are shot with the methotrexate. But, I try to stay positive. I see the rashes almost gone so I know i am improving but the pain seems to get no better. Fortunately, I have shared with most people in my life so they get it if plans are cancelled or things change. The hardest for me is watching my husband want to help but able to not. It seems like very few good days come so we try to really take advantage of them when they do.
I’m glad you can relate (well, not really glad, but comforted, I guess!)