That’s good then. And thank you for being so gracious.
It’s useful to have the flexibility this provides, and if you’re prepared to pay for an ‘extra’ appointment, that could be especially helpful at this stage in the game.
I have started to do things this time that I feel might help me stay focused when I’m seeing the Dr. My two major problems so far have been that, to some extent iv been in denial about having PsA & so not really asking what I needed to ask. The other problem is that I have underwent foot surgery this year & my recovery has been extremely challenging. So last time I focused on that thus again avoiding the PsA. That really is my issue & I do sense that my Rheumatologist gets a little frustrated with me but he knows that I’m struggling I think so kind of just lets me talk. This time iv kept a pain/symptoms diary so that I can clearly see what is reoccurring most & thus focus on what is actually troubling me.
I have bits of osteoarthritis (elbow knees foot - hence surgery) but my Dr has said they are separate issues from the PsA. My question there is, well is one causing the other. If not then does this mean that I have OA as well as PsA?
I don’t know that the methotrexate has stopped working as such but I have had a significant flare this week & a return of symptoms. My expectations are always to high about everything & so I imagined that when on treatment - no more flare ups. It’s quite difficult to be so negative when your sitting with the Dr who is so pleased with your progress - no swelling Methotrexate seems to be working. When all you can think of is - what is this it then. Is this as good as we are going to get it because I’m still in pain here. Maybe it is & that’s a new reality for me to have to deal with
Yep at the moment it feels like everything I loved to do is gone. It’s all went to hell in a hand cart. Without those stress busting activities that basically always kept me from spending way to much time in my own head, I’m in there all the time now. I wouldn’t say that I was depressed but I can see it from where I am (if that makes sense). There are some pretty dark days if I’m honest.
I hear you. You commented about the pain in spite of the doctor being pleased that the needs are working. Some of that may in fact be damage or secondary osteoarthritis. I know that my disease control is overall good, yet I continue to have damage occurring. The fact is, for me it’s slowed damage, but certainly not avoided it completely. I’ve learned to accept this overall, even if it’s occasionally frustrating, and even if I do are that there will be surgeries over time to deal with the damage. I’ve been dealing with this for 11 years now. I guess I’ve learned to accept it as what it is, even while advocating for myself.
It was foot surgery that ignited my PSA. I had a bunion correction operation, it was a very gross bunion, causing incapacity and far too much pain and then after the operation, I simply never got better. Within weeks, (around 8 weeks later), I had significant inflammation all over which turned out to be PsA hitting me like a truck road traffic accident. So I’m not at all surprised your recovery was horribly ‘challenging’ actually.
This is in my view the only way to present your history at a next appointment and it so helps Su - it really does.
Therein lies a significant issue. Personally I think one causes the other but others (including many doctors) think they’re separate. Certainly both aren’t the same but…I’m not sure this almost stubborn adherence to the argument they’re both so ‘separate’ is actually that rational. You know the nursery rhyme about all parts of our bodies being connected? How does it go? ‘The x joint is connected to the y joint and the y joint is connected to the z joint’ as a means of teaching children the names of parts of the body? I think all parts of our bodies are far more interconnected that we think and I don’t believe any such issues are always that ‘separate’! But that’s just my view.
Given you’re just starting and have not yet been treated with more than mxt, for example by a biologic or even another DMARD, I think it’s better and more rational if you think instead that there is a lot of hope that you can feel an awful lot better than you do presently. Honestly. Please have more hope than this.
It’s just horrid when you realise that isn’t it? Taking long walks (as in several miles long) in the woods or by the sea on my own with just the dog, always but always keeps me more emotionally stable, more ‘up’ and dare I say it sometimes just more sane! I too thought initially that everything I loved to do was ‘gone’. But actually it wasn’t all ‘gone’ and indeed there’s been times in the last 3 years that much of it came back, for just a time too. Whilst this disease can be progressive, it also waxes and wanes a lot too, even though it still might be progressing. And it doesn’t always progress for everyone either. I found that hard to deal with initially as I felt it should either be one thing or the other. The not knowing which it was going to be was maddening.
Now I get less depressed about any progression because despite it I can still have days of significant capacity too. I grab them always and they help me get out of my head. It never stays the same and
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Why did it post when I hadn’t finished???
The end of that sentence is - ‘It never stays the same and’ that fact is now more helpful to me than I ever thought it would be. That and staying with my psychotherapist who so helps me deal with the ‘bad’ and ‘darker’ days much better than dealing with them all on my own.
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I actually went to see my GP last week & she was the first person to just ask me right out if I was struggling with things. This just led to floods of tears & me really admitting for the first time that I am actually quite traumatised (& a little depressed) by my diagnosis. I’m going to consider counciling I think because I am really struggling to move past the fear/anger//disappointment and guilt that I will become a burden to people. I rielise now that iv stuck my head in the sand a little… if I don’t look at it then it’s not happening. I should have been communicating much better and been more focused than I have been with my Rheumatologist.
I’d highly recommend counselling - and remember that it’s a strength to reach out and ask for help. It rarely turns things around suddenly and spectacularly, but for most of us, it can be the start of a sustained turnaround, so good on you 
As I think I was trying to say earlier I too was very ‘traumatised’ by my diagnosis. I ended up at my GP and was signed off for two weeks just to come to terms wth the shock of it.
It wasn’t what led me to psychotherapy but it was certainly what led me back there. I still go. And it helps, it so still helps now two further years down the road. That and time passing and also finding out things can get better for a time at least as in the meds can work.
It helps build up resilence and that feels so much better. Also for me what really helped was educating myself about this disease too. Finding out as much as I could about how it operates, the latest research, what the good stories looked like which were harder to find not because they don’t happen but more so because people who have good outcomes rarely share them. All that helped centre me more,
So well done you. But as Jen said, it’s not a fast resolution but it can be a sustained one.
I find you to be a massive help Poo. Everyone here is
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Thank you but that’s the true worth of forums like this. We all help eachother. You should have seen the state of me when I arrived on here. These good people truly sorted me out big time. Seriously.
And honestly in time it can become just so less overwhelming. Still pretty challenging but certainly less overwhelming. I was so utterly overwhelmed initially and I’m guessing you’re somewhat similar right now. Once that passed (and it does) and I learnt more how to deal with things including treatment issues, things became just so much more manageable. x
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