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21

For a socially awkward person, you’re sure nice to have around!

Yes, your story does sound like the “real thing”, and I think that you’re lucky to have had a diagnosis so early on. Have you managed to avoid joint damage? I hope so.

I know exactly what you are saying about “just” … “just” exercise, just eat right, just cook organic whole foods, just get enough rest, just go swimming once a week. Oh yes, JUST! And if you just can’t do it, well then is it any wonder you ache? Yes, I know that psychology, and I know how it contributed to my self-doubt and eroded my feelings of self-worth. Try to look at the things you DO do, and give yourself credit. You have a chronic, painful disease and you go to work. You take the train (good for you!). You stay in contact with family. You are independent. YAY YOU!

You talk about your psychologist. One of the things that we know happens with psoriatic arthritis is depression. Inflammation from this wretched disease can actually get into your brain. Nothing is safe, I tell you! Have you ever thought of going to see a psychiatrist? I finally bit that bullet eighteen months ago, after avoiding encounters of those kinds for years. It wasn’t as bad as I thought it was going to be, and I have to admit that my brain is in much better shape than it has been in a very long time. I had suffered from depression for decades, and never really got it under control. The psychiatrist said “you know, when you have PsA, you’ve come by your depression very honestly”. He suggested tredatment, got it right in one go (after years of messing around with a bit of this and a bit of that) and I’ve not looked back. Think about it.

Well, you’ve certainly made yourself at home, and you fit right in! We’re glad you’re here.

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22

Ah well, that might be something we can’t help you with. But like Seenie says, we think you’re just fine anyway.

And also, when I was talking about hiding away and all, that was many years prior to diagnosis but for quite a few reasons I reckon I already had PsA and the depression ( I prefer to call it ‘lassitude’) that the chemistry of autoimmune disease causes. At the time I would have sworn blind that I was just an inadequate human being, nothing would have persuaded me that a physical disease was playing its part …

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@Seenie thanks :slight_smile: it’s much easier for me to type what’s in my head then to say it out loud… especially in English… and I have time to think about what I want to say and change the beginning after I wrote the end… and you guys are on the other side of the world :wink:

I don’t have any damage luckily :slight_smile:

I’m not sure what the difference is between a psychologist and a psychiatrist except the 2nd can prescribe drugs… I’ve only had an intake so far… I didn’t realise how proven the link between depression and PsA was until I got here… I will mention it when they start the tests…

@Sybil I wondered about that since my depression and exchaustion started long before any arthritis… but I did have psoriasis on my head pretty early though… (well we thought it was dandruff)

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My bf is extremely angry with me because I’m not doing anything around the house… and even worse I’m not even trying to get better! Because all I have to do is go to a dietician and they will magically give me the energy to buy and cook healthy food… and then the only thing I have to do is exercise…

And I didn’t make an appointment with the cleaning lady (after he was mad last time that she was lousy and I should tell her that and get someone else to come… again…)… since I’ve not been able to work shifts I don’t have any free days throughout the week anymore and she only works business hours … (I was home sick 3 days these 2 weeks!!! She could have come then! Because I planned that and could have told her to come a week before)

He normally does a lot in the household… pretty much everything except cooking… but only if we have sex… I told him no last night after folding the laundry with tears in my eyes… Which is why he’s so angry right now…

There’s 4 days worth of plates on the table and we’ve eaten somewhere else last night… Oh and we had pizza one night… (I cooked twice, the other 2 were takeout that need plates) he did do laundry (put clothes in washer, then drier and then throw them on my side of the bed so we can fold together… So I find out when I’m exhausted and want to sleep but stayed to watch one more episode on Netflix… Me folding for at least 10-15 minutes while he’s doing something else and then he comes to do his own socks because I mixed them up before and the towels)

And of course he’s right that I didn’t do much before that either… and he does do most of everything… but only if he feels like it… If he would clean the living room right now he would be done in 30 minutes including vacuuming… If I were to do everything I would need at least 4 hours… and that doesn’t include putting the dishes in the dishwasher for me…

He wants me to just eat healthy but doesn’t want to do it himself… He needs to eat candy because he’s too skinny… (He doesn’t want to hear that eating healthy and not skipping breakfast and lunch would do wonders…)

He’s going to leave me if I don’t just flip a switch and be healthy…

I’m sorry I’m such a mess and spewing everything here… I don’t know what else to do to keep me from doing something stupid…

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25

Horrible, isn’t it, when a disease (which is horrible enough already) isn’t understood by those close to us. It’s a problem that we discuss here a lot. And not only do our nearest and dearest not “get it”, a lot of the time we look just fine as well. With the right help, you will find the combination to the lock on what’s going to make you better. But it will take time. And the waiting, I’ll admit, is extremely hard.

I don’t know what you’ve done in the way of seeking out a specialized rheumatologist, but you might want to think about that. Those of us who have (I, and several people from this site in Canada as well as several of our British members who have decided to go to one of their “Centres of Excellence”) have generally found that there’s a big difference between the kind of treatment you get from a general rheum and one that is specialized. The effort and the travel seems to be well worth it in terms of getting control of the disease.

Some of our members have also found that having their partners attend some of the specialists appointments can be very helpful too.

Have a relaxing Sunday, and stay in touch!

S

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26

It’s Monday morning already :wink:

He has palindromic arthritis…

http://www.arthritis.org/about-arthritis/types/palindromic-rheumatism/

So he gets pain… which makes it worse I guess… he thinks he gets it but his pain goes away in a few days…

He’s not going to hear anything the doctor says except yes excersise and healthy food are good… And translate that to I’ll be completely healthy then… he’s right I’m wrong… nothing grey…

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It must have been hard for your bf to come to terms with having Palindromic Rheumatism, assuming he has come to terms with it, that is. You’d think he’d be able to get his head around your PsA, but it certainly doesn’t sound that way.

It sounds like a very difficult situation, a big challenge for your relationship. Can you envisage going it alone? If not, then you’re going to have to pull out all the stops to get through to him. Heck, sorry you’re going through this.

I’m so glad Jules replied to your other post and mentioned fibromyalgia. I don’t have fibro, but I have seen what it can do close to home. And to be honest it has been on my mind as you’ve explained more and more about how things are. I’d say it is definitely worth raising that possibility with your rheumy.

Thing is, something has to give. The pain and the daily struggle do sound overwhelming. I think I’d flip flop between fury and exhaustion if I had the same things coming at me. Clearly the ideal lifestyle changes are a step too far just now, I hear you when you say that exercise etc. are mightily difficult to achieve. But to get to a better place you will have to identify what you can do to start the ball rolling. Even when this disease is doing its worst, there is always something, big or small, that is the key to living with it better / getting it under better control.

I think Seenie’s dangling that key with her suggestion about a specialised rheumy. You may decide that the way forward is to put a firework under your current rheumy’s backside. Could be he is not listening or that you have not yet explained fully just badly the disease is impacting on your life. Or … it could be time to find Holland’s best PsA rheumies and get an appointment lined up with one of them.

I’m not saying ‘do this’ ‘do that’ ‘do it now’ The choice of what to do is yours alone and only you can make that decision and decide when the time is ripe to take action. I’m guessing that just being here, being able to vent and find some understanding may be quite a big thing in the circumstances, and hopefully it is helping in some ways.

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28

@Cynthia, I’m so sorry that you’re having to go through all of that with your BF on top of everything else that you’ve got on your plate.

I’m not sure if you’ve tried this, but with my own wife (who has been nothing but attempting of understanding what I’m going through), I found it useful to share some of the links on this site and other articles explaining what it feels like, even if they’re not 100% accurate. It’s incredibly difficult to truly explain what this disease feels like in an accurate way - I just don’t think we have the word yet.

She found them super helpful in understanding, at least a little, what it’s like on a day to day basis, and why I can’t do certain things anymore. It sounds like with the Palindromic Rheum he’s at least got a starting point - just seems like he needs to understand that it’s that but all of the time.

It would be hypocritical of me to stump for the psych route, as I’m currently stamping my feet and refusing to do the same, but I’m gonna do it anyway. Do as I say, not as I do :stuck_out_tongue:

And just so you don’t feel alone on this point - I spent this weekend in agony. Then it abated a little before bed, and I had to ask myself “am I just over blowing it? Am I making it seem worse than it is? Am I making it all up?”

Then I shifted onto my side and pain shot through me. Nope, not making it up. Doubt was still there though, even after that pain, though, a little niggling worm stuck in my head. This morning, I feel, relatively speaking, fit as a fiddle - I’m only limping a little bit and have pressure more than pain in my joints. Again, doubt.

The questions you’re feeling yourself, I’m sure most of us have, and I know I currently am. Am I making it up? Do I want to feel bad so I can spend an entire weekend in bed binging a Justified marathon? Do I just want sympathy for my pain?

In order of question, no, no (yes to Justified marathon), hell no.

Like you, I’m a socially awkward person. I keep myself to myself. I don’t want people to look at me with sad eyes and give me a soft “oooh, that looks rough,” when I’m in enough pain to have to shuffle along.

I know what I know, and I know I’m in pain, that it’s not getting better. I still question.

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29

He doesn’t deal with it… except for the few days every couple of months that he has an active inflammation… and then he still keeps going since it’s only a few days…

I need a physical therapist who can be proud of me when I do 10% of what he says but still can encourage me to do more… I feel like they all want me to hit the ground running when I can’t even take 2 steps…

It does help talking about it… It puts things into perspective… I’m trying to convince myself you’re all making sense… I have such bad memories especially from childhood that I don’t remember if I had any trouble… and when the extreme fatigue started… I do remember hating to stand… but I can’t remember if it was because it hurt… I do remember convincing myself that I wasn’t tired because I couldn’t be…

How do I find a PsA specialist? I googled but I find all the hospitals who mention PsA and most other kinds of arthritis… or do I need to ask at my reumathologist?

I feel like I’m misunderstanding you here? I am seeing a psychologist but I’m on a waiting list at the moment… There going to do a broad test to see what’s wrong with me… I’ll print out articles about the links between PsA and depression when I go.

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Hating to stand … me too! During my 30s anyway, which was about 13 years prior to diagnosis. I told myself I had bad posture or that maybe everyone hurt just standing up but unlike them I couldn’t handle it.

How to find a centre of excellence for PsA in the Netherlands … that’s an interesting one. I first heard about the 2 centres of excellence in the UK on this forum. Wonder whether those sleepy Dutch forums you mention might wake up if you put out a call for such information? There again, it might be something to ask your rheumatologist or your primary care doctor. I googled ‘psoriatic arthritis Netherlands’ in the hope of finding clues that one hospital or another has particular expertise around PsA, but everything was in Dutch, surprisingly! If you find one that runs clinical trials for PsA, for example, it might be worth giving them a ring to ask if the disease is a specialism of theirs. Perhaps Seenie could help here …

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Nope, I’m the one who misunderstood, sorry! Thought you weren’t going, must have misread.

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This… Honestly… every explanation I think of off how to describe the pain I have no clue if it’s something that hurts me more then others… people can hold an (-30°C) ice pack (we use them at work to cool down water) for a while if there’s a table a little bit away they can put it on while talking… it hurts so bad in my bones when my fingers get cold I would never keep holding that thing for a nano second more then necessary…

I know it doesn’t matter because if it hurts me that bad that’s how bad it hurts for me… but I had kidney stones… and if I put those on 10 my other pain gets to 13… I mean they were annoying in keeping me awake… but it was manageable…

I once stood on a Lego and couldn’t get off it because the other foot hurt more…

Right now I’d prefer Lego on the floor over what I’m feeling now… And add some kidney stones… I can hardly hold my phone… but not holding it means laying in bed having nothing to think about but the pain…

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Hi Cynthia,
I finally got to trying to read this thread, it’s very interesting, all that you have to say and the replies, but my eyes are driving me nuts right now so I quickly scanned through and just wanted to comment on a couple things that were said…I agree with you on exercise being not so helpful, because before my PsA was under control with Enbrel, exercise helped and it hurt! Not pain hurt–just so much fatigue it felt good while I was in motion, but just completely draining afterwards! And, pain, too, does not have to be a 10 to be unbearable…a persistent 3 or 4 pain level can be just as depressing as pain that’s at a 9.
But you hit the nail right on the head about so many things–and, no, you aren’t lazy, but I feel like that, too, when I’m not completely ambitious! IDK how old you are, but I have a 25-year old daughter who always feels shi**y and I’m so worried she has something lurking. She doesn’t have any psoriasis or pitted nails or anything, but she has such high BP and her thyroid is noticeable in her neck, but doctors always say her thyroid levels are fine. Whenever someone young here–and I usually just guess that they’re young–comes on and tells us how bad it is, I feel so sorry for you because I can’t imagine feeling so awful at a young age…and I know my daughter fights through it, she goes to work everyday, but she’s depressed a lot and so tired all the time. I hope there’s something on the horizon (med) that works even better than the biologics and works for everyone!

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Thank you so much for reading even though it bothers you!

This struck a chord… I feel like you have to constantly want more, better, bigger things… and have to take each opportunity with both hands… especially at work… I can’t just be happy with what I’m doing now I always have to want more…

If not for the pain I have a great life… I don’t need more, bigger, better… And just for that I’m already lazy…

I’m so sorry about your daughter! It must be frustrating… it’s much easier to be in pain/depressed/tired yourself then to watch it on someone you love…

I hope they will find the exact mechanism that causes this and other auto immune diseases… and develop a test that they can use to scan everyone with vague complaints… Cause when they are that far meds won’t be far off either…

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35

Cynthia have you told your rheumy about these things that you are so sensitive to (Including light, sound etc.)?

I could have pushed for treatment sooner, a lot sooner. But I’d have been taking all these intangibles to the table: fatigue, feeling ‘blah’ all the time, insomnia, random pains that stopped me in my tracks etc. I got diagnosed once I couldn’t walk any more and both knees were swollen up like footballs i.e. PsA was glaringly obvious. Even by then it had taken a bit of perseverance to get answers, as is all too often the case. But what I’m saying is that I didn’t know how to present with the invisible symptoms and I think it was lack of self-esteem that stopped me from trying. I’ve got a different mindset now.

Well I know you’re long over the diagnosis hurdle, but I think these extreme sensitivities that you describe really need a rheumatologist’s serious consideration. I just can’t help thinking that you might have one of the add-ons, such as fibromyalgia. These symptoms could sound bizarre to some people but I think a good rheumatologist wouldn’t be fazed at all. If you haven’t done so already, I think it would be a good idea to lay the whole lot on the line, itemised, clear, assertive.

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Not yet… I’m really struggling with the fact that everyone keeps telling me to see another doctor… well the doctors do… I’ve told my family doctor pretty much all of it… but everyone else only what I think they should know… and the big things… (migraines, kidney stones heart palpitations)

In 5 years I’d seen a reumathologist, cardiologist, ophthalmologist, psychologist, ENT specialist, podologist, physical therapist and one …ist that made a brace for my hand…

I will be telling him next time I’m there though which is in 5 weeks…

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Yes, Seenie’s on the hunt!

38

Yes, Sybil is right about asking your current rheum for a recommendation, but that doesn’t always work if your doctor feels that’s a defeat.

So here’s one that I found that looks hopeful:
https://www.lumc.nl/org/reumatologie/medewerkers/9011511291653

It’s a start.

39

Thank you :slight_smile: they only mention PsA once in that big text though… and only when listing 3 kinds of arthritis… the other 2 listed get more mentions and explanation what she did for them…

I’ve checked my own doctors and there’s no mention of PsA anywhere… so maybe that is what makes a specialist…

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Look a bit further:
http://ard…com/content/early/2015/12/11/annrheumdis-2015-208466.abstract
And here’s some work she has done with Coates, Kavanaugh and Mease (some of the biggest names in PsA research and treatment):
http://www.nature.com/nrrheum/journal/v12/n12/abs/nrrheum.2016.183.html
And she has also done work with Dr. Heliwell and Dafna Gladman (who has devoted the largest part of her professional life to improving the lot of patients with PsA):
https://www.ncbi.nlm.nih.gov/pubmed/25779603
She has worked with the biggest names in the PsA business: not your run of the mill rheumie.

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