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Hey I’m new here :slight_smile: I’m from the Netherlands but all the Dutch forums have like last posts from September last year and the next 2 months before that…

I was diagnosed at 18 and have been on a downward slope since then… very very slowly hardly noticeable… especially to me… maybe only to me… but no one said anything …

I’m a lazy person… always have been… and I feel like that makes it so people think I must just be faking it to get out of stuff… or maybe that’s what I fear I do?..

When the pain isn’t really that bad I can’t imagine what it was like to have that much pain… I feel like an imposter trying to pase (sp? “control your energy” ) myself so I stay on a manageable pain level…

Yesterday was like that… And I walked 20 minutes to and from somewhere (normal people walk there in 15 minutes when they walk slow). Now I’m on my way to work and every step seems to hurt more and more… Yesterday the pain wasn’t this bad and it was bad enough that I didn’t notice any of the frost on the trees/everything until I was inside at work… right now I can’t remember how I walked to the bus or the train just that it hurt…

And now I’m sitting in the warm train and feeling stupid because the pain can’t be that bad…

2 weeks ago I had a meeting at work with my supervisor who said I have to stop looking grumpy all the time… and when I told her I couldn’t because I was in too much pain and if I should then call in sick when the pain is so bad I can’t fake happy she said no just don’t look grumpy?

I made a emergency appointment with my reumathologist last Monday and he switched me from diclofenac to naproxen (+3000mg paracetamol) the Friday before that … he ordered xrays, blood work and ultrasound… the ultrasound is going to be this Friday and after that if it’s just one or 2 joints he’ll put shots in them (I really hope these can’t hurt as much as I imagine them hurting…) And I’ll start on new medication… I’m guessing another biological (had humira before)

had a meeting with the “work doctor” (the one who says if you can work or not?) And agreed I should slow down when it hurts more and do more when I can…

But this is so hard for me… Everything I (and everyone) hate doing is what I shouldn’t do… Open boxes with little boxes inside and inside that little bottles you have to pull out (did I mention my thumbs being inflamed?)

It’s so hard for me to know when I’m being lazy or when I shouldn’t do it… And I know right now I shouldn’t do it…

I’m trying to ask myself if I would do it for someone else if they were in this much pain… But I would do it if they had a papercut… So that doesn’t help…

I’m rambling… I know I’m sorry… I’m just really in a bad place… (I don’t want to die but I can’t live like this bad…)

I’m wondering… if you say you can’t walk, is it physically impossible (you’ll pee your pants if the toilet is 20 steps away) or you can’t walk and concentrate on anything other then the pain and it takes 2-5 minutes to take those first 20 steps… I feel like if I can get to the toilet in the morning I can go to work… And I can because I’ve been doing it
…

Oops I’ve been typing for 40 minutes I have to get off the train…

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Hello Cynthia. What a very immediate and real post. I hate the fact that you feel so bad but I love the way you express some of the nagging thoughts that many of us must have.

I’m intrigued, particularly, by your description of yourself as a ‘lazy person’. Maybe you are, it’s not a crime. But I’ve long thought of myself as lazy too and now, knowing that I have PsA, I’m not so sure … I used to shut myself away and do nothing whenever the opportunity arose, I’d sleep longer than seemed normal. Looking back I suspect that was partly depression (which can be caused by PsA) and partly PsA fatigue. I know I was one hell of a lively kid and once PsA got controlled I returned to being a lively middle-aged, okay old, woman. A lot of the time anyway.

And yes, what does not being able to walk mean exactly? I’ve asked myself just that. The first rheumy I ever saw told me ‘you can’t walk, this is serious’, though I’d hobbled up the corridor to see her. Your situation right now does sound serious and for a ‘lazy’ person it sounds as if you are busting a gut to keep going. All respect to you for that.

Hope to hear more from you and also that the next stage of treatment really does make a big difference. Welcome!

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Cynthia,

There’s a large difference between being lazy and avoiding things just because of that laziness and being lazy and avoiding things because “oh my god no I can’t even think of doing that right now” levels of pain. That level of pain, by the way, is not necessarily a level 10, I literally cannot walk right now. It can be a 3 or a 4, something distracting and constant enough that the thought of doing anything to make it worse makes it worse.

Even when the pain level is not as severe, or, lucky day, not present, the thought of doing something that could make it appear can be enough to put a roadblock up for you, mentally. It’s something that I’m struggling to overcome at the moment, as well.

You’ve made your appointments, have your dosages up, and are trying what you can to manage the pain. That’s not the action of someone who’s using it as an excuse to be lazy - that’s the action of someone who wants the pain to go away.

Try to find some positivity, some solace in that. It may not seem like a lot, but the smallest light can make the dark cave brighter. (I feel like a motivational poster).

Welcome aboard from another newbie to the boards, and I assure you you will find support and help here, even from only being on a few days myself. They’re a good crowd.

As an aside, your supervisor sounds like a bit of a twit.

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Thank you so much for both of your replies! I was so scared people where going to say I was being a baby and the pain could be much worse (which I can’t imagine… or don’t want to…)

Right now I’m so tired and in pain… when reading your messages I think of things to say and the next second there gone… I will reply later but just wanted to say thanks so much!

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Your pain is your pain, not anyone else’s. You’re welcome.

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Hmm, surprised @Seenie being dutch an all hasn’t shown up yet… We get what you are saying. So here is one that will surprise you The right combination of meds will come along. I won’t get into that, but just an awful of whats REALLY bugging you and causing you issues is something else a lot of us forget. That is the ISOLATION that comes with this disease. So the surprise? When you are talking and sharing crying and laughing with others in the same boat even virtually, somehow the walls that isolate you start to fall down. WHEN they do (and it doesn’t take long) Everything gets better. Pain may not change BUT somehow some way you deal with it (and life) gets better. come often reply start threads as you give support you receive far more back. Keep us posted you are with folks who care…

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Ah Cynthia, groetjes!
I’m sorry, I missed your arrival. @Tntlamb, thanks for ringing my bell. I’ve had a very busy day, I did far (far!) too much (and far too little here ) and I’m now in bed, waiting for some pain meds to kick in so that I can sleep. I will write more tomorrow.
I’m glad you found us! I’m a member of those Dutch boards too, but not much happens there. Here it’s gezellig!
Tnt says I’m Dutch, which is almost true: I’m the Canadian-born daughter of Dutch immigrants. I’m proud to speak the language rather well, although I had an oom who used to say that Dutch isn’t a language at all, it’s a disease of the throat. :wink: But your English is typically excellent, so we will just carry on like this, shall we?
Tnt is so right about the loneliness and isolation that comes with this disease. We “get it” here, and we’re glad you’ve joined us.
Seenie

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“Like!” A LOT!

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Thank you guys so much! :slight_smile:

When I first found out I had PsA I was on a forum as well but only the people who couldn’t work anymore where there… I was no where near that at the time and got so down feeling like that’s what happens to everyone… then I realised people who are doing Okey don’t need a forum… But then when I did need it I was stuck in the “forums will make you feel worse” mentality… Tuesday my psych recommended finding a support group and I’m so glad she did… Just reading a bit makes me feel less alone… less of a baby (eventhough there’s still a voice in my head saying it’s not as bad as it can be)

I’m home sick today… which I should have done yesterday… I still have to go there later since I work in the same hospital as where my reumathologist is… (I’m having the ultrasound done later) so my supervisor wants me to come by after to share how it went… which makes me more nervous then the possibility of shots in my joints…

@Sybil I’ve been lazy (or efficient :wink: ) for as long as I can remember and definitely before the joint pain started… I’ve always been tired (“you can’t be tired if you slept 8 hours… stel je niet zo aan/toughen up?/quit whining?”)

This! I feel like I shouldn’t whine when it’s not too much pain but the constant nagging pain takes up so much of my energy and attention…

I am getting help etc right. Now… But being allowed to take it easy and ask for help and people actually wanting to help and try to understand feels so good I prefer this over not being in as much pain but having to work 100% and people accusing you of being lazy… And if someone said this to me I would say I get that! It’s not wanting to be sick it’s wanting to take a break… But it feels like I prefer being sick…

When I have a small cold I check my temperature constantly to see if I have a fever and can stay home… Before I thought I prefer being sick… but I’m already sick already in pain I just want a break…

@Seenie I’ve spend most my online life in English and most TV shows etc here are in English so I’m Okey with it :slight_smile: when it gets specific it’s a bit harder :wink: (sometimes I think I can write English and Dutch the same as I’m always messing up d and DT etc haha )

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Even before PsA I’d do this all the time anyway. I have some weird fixation with my temperature, always have. Probably came from a similar place - wanting to stay home from school, back in the day.

Now I do it cause I constantly feel flu-ish without any other flu symptoms.

Glad to hear you’re feeling more positive today!

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They didn’t see much on the ultrasound… And I’m starting on drugs I’m pretty sure I’ve already used and discarded before… Leflunomide/Arava… he said he had a list of everything I used when I was going to my previous reumathologist… but I’m pretty sure it’s just the list of things I could remember taking of/on? the top of my head… Because I remember them complaining about how little information they send over… And listing what I could remember using…

So 8 weeks of waiting to see if that’s going to work… 3 months before my psych evaluation starts… and here I am just wanting to crawl into bed and not come out ever again…

At least I won’t have to take the MTX tonight…

The psych said after the intake that she thought the pain was “imaginary” (more pain there should be according to my illness) and the reumathologist can’t find any inflammation… So there’s nothing wrong with me… I’m just faking it…

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Many of us know the frustrations you’re feeling, Cynthia. The waiting to see if the drug is going to work. The feeling that it’s imaginary. Wondering if you are, in fact, crazy. (That’s one of my blogs.) Or lazy. One of the things that confuses the PsA picture (for doctors as well as for patients) is the tendon inflammation, because it’s painful but not really in the joints. It can be painful everywhere, but the doctor can see evidence neither in the blood work nor in the joints.

Enjoy your methotrexate-free weekend!

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Okay. My very down to earth, plain-speaking rheumy agreed with me that I probably have a high pain threshold. Lucky me. He then told me that some of his patients may have just one swollen finger and genuinely be in agony, in other words, my good luck with pain (which doesn’t always hold out) is just that … just good luck, something to do with nerves or neurons. Conversely, if you are feeling a lot of pain then that is what is happening, you are in pain. You are not faking it, faking it would involve you sitting at home plotting and planning to fool people.

I am so sorry that your psych took this approach, it does not seem helpful. There will be a reason for the pain, perhaps tendon inflammation (enthesitis) as Seenie suggests, perhaps one of the add-on conditions that PsA attracts, perhaps it is just the way that PsA affects you personally, I don’t know the answer but I hope you can find a way through this. Please keep talking to us about stuff.

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I think I was really set on getting those shots and they would work like magic and I’d be pain free… I knew that wasn’t going to happen but still its so disappointing…

Thank you for that blog :slight_smile:

I’ve been holding everything in and pretending I was fine for so long that now that I started saying I’m not Okey I keep crashing… hard… Before when I started crying I would tell myself to stop being a baby and feel foolish for crying… But now I go full out panic attack like hyperventilating can’t stop crying…

When the pain is bad (like now…) I know I’m not faking it… But when it’s not there/less it’s hard to remember how much it hurt… and thats when the doubt starts again…

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Cynthia, tell us what it was that got you a PsA diagnosis in the first place. How did your disease appear, and what made you go to the rheumatologist? How bad is your psoriasis.

Just being nosey … :wink:

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I had an inflamed knuckle in my left middle finger for about 6 months… and then after that the knuckle on my index finger for about the same… went to the doc with both he said I must have just bumped it… then after that I got a sausage toe and could hardly walk… (well I had a way I could wobble along…) my family send me to the doc with that and told me to demand action… he started with you must have bumped it again but did send me to a reumathologist… who pretty soon started checking my skin (if he asked me if I had Ps I would have said no) and found a tiny patch on my elbow and send me to a dermatologist… turns out I didn’t have bad dandruff :wink:

The patch on my elbow is about 4 times as big now… which is still small enough to be just on the tip… and my scalp is itchy and annoying but not bad enough to get the stinky shampoo again… both have been less before when the pain was more under control…

And then the nails… I’ve always had ridges and those tiny black lines, and pitting but thought that was normal… then the nail on my ring finger on my left hand started to lift off… slowly but growing the wrong way… It hurt a lot and almost got to the top but then suddenly it started growing back… It did that twice which didn’t hurt anymore so I didn’t care as much and then my pinky started… Which was so much more annoying because apparently you bump it way more often then the ring finger… (I had a cap off a lip balm around my finger to sleep lol) that one as almost gone as well before starting to grow back… but now they both just go back and forth between 25-50% attached… its ugly but it doesn’t hurt anymore…

It’s funny to me how little people notice it… I thought they just didn’t say anything until a little while ago one of my colleagues noticed it and said she never saw it before… as did the others that were around then…

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You must be exhausted by this constant struggle. There could be some practical steps you can make to move this forward but I realise it’s very hard when you’re just desperate for some rest.

How about seeking a second opinion? Rheumys do vary in how well they understand PsA. It seems a little odd that your rheumy is going for Leflunomide, I’d understand replacing one traditional DMARD with another alongside a biologic, but it looks like you’re getting Leflunomide instead of a new biologic drug(?) You may get lucky, perhaps Lef will help, but I’m wondering how your rheumy explained this decision. Just seen your new post too and wondering whether your rheumy is looking at your symptoms as a whole or over-concentrating on joints …

And also (and I hear you on how difficult it is to walk or do anything much) is some gentle exercise something you’ve tried or might try? I wonder if 30 minutes leisurely swimming would help with pain, for example? Movement really can help pain loads, not the kind of movement you do when hurrying to work, but exercise you can do at your own pace. The one sure fire thing that does makes me hurt like hell is being stuck in one position for any length of time.

Main thing though … I hope you have an okay weekend.

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It’s been over 10 years since I tried normal dmards… maybe he has to try 3 of them again before being allowed to prescribe a biological again?.. I don’t know I was so overwhelmed with the result of the echo I didn’t think to ask…

If I want to go swimming it takes me an hour to get inside of a pool… and even longer after getting out… and that is when my bf goes with me… If I have to go by bus it takes even longer…

I can’t sit still either… but exercise doesn’t give me the good feeling everyone says it does… It never did… I did pretty much all the sports I could do in my town (and that’s a lot) and I hated them all… (or in the case of group sports they hated me)

I’ve tried physical therapy… but the people I’ve met have such huge ego’s it’s impossible to not follow every little thing they say because then you stepped on there toes… And I can’t be perfect… it’s too exhausting…

I’m a socially awkward person… I don’t click with people easily… People hate me before even knowing me… and people who become physical therapists or doctors are people who were drinking and partying there way through school…

Everyone I know acts like it’s soooo easy… But I don’t even know how to say hello to someone… let alone explain what’s bothering me and why I know it won’t work for me… Because obviously I don’t know myself…

All I have to do is eat healthy and do sports for an hour a day… but where do I get the time for that? I barely have time to cook now (at most 30min)… but then I have to try and find 100 ingredients in the store on that same day… so? Just go swimming once a week… that’s my Saturday gone… when do I go visit my family? I haven’t seen them since half December and then only because they came here…

If only I could just be someone else… Then everything would be perfect…

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I might look up the treatment protocols for Holland, that’s the sort of thing I do for fun, lol.

I felt I had to mention exercise because as you say it is highly recommended for PsA and for me it works. It’s a bummer about the swimming pool, I can see a journey like that would be off-putting.

Some of the best people I know might be described as ‘socially awkward’. You are very hard on yourself, we can’t change our characters completely can we? And when we’re feeling very vulnerable, it’s hard to see that some of our ‘weaknesses’ may in fact be the basis of real strengths, often quite unusual strengths.

You made me laugh about the sports groups … at school I was thrown out of one gym or sports lesson after another. The P.E. teachers just took one look at me and showed me the door. Funny though 'cos I ended up quite fit & strong … apart from this stupid PsA lark. I am sorry you are having such a tough time, there will be a way through for you though, I always believe that.

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I know you mean well and I wish I could just do it…

I agree on the best people being socially awkward… but those people don’t to go to bars either… So where do I find them?.. lol

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