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Living with Psoriatic Arthritis (PsA)

Crisis/Support

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Thanks, TNT, useful listings.

Having suffered from depression for 25 years prior to the PsA diagnosis I know what these feelings can be like.

My wife and I recently lost a friend from high school to depression.

My suggestion to anyone with a bad case of feeling down is to talk to someone, anyone. Find someone that will listen and let you just talk. If that doesn’t help, please get professional help.

Having suffered from depression for 30 years I know how “well meaning” people can make you feel worse. Don’t listen to the uneducated and opinionated people in in your life. You have a disease, don’t try and hide it. Get professional help for it just like you do for your PsA.

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Great feedback Tamac. When my mum asked why I was seeing a psychologist for depression and anxiety, I responded “would you do your own electrical work if a power point was broken?”

There is nothing like real connection with people who understand the disease, and even better if they are trained to help treat it.

How do you deal with the frustration and isolation the is caused by this disease? No one understands the constant pain, fatigue and physical limitations I have. I was a very energetic person, working 45+ hours a week and still had the time and energy to care for my family and 2 dogs!! Now, I can barely get out of a car without assistance. I’m in weekly therapy and on all kinds of anxiety and anti-depressants, but still having major difficulty emotionally. I’ve been on 7 biologics over the last 3 years and now my doc says it is probably osteoarthritis and should find a pain mgmt doctor. Don’t get it - I’ve had 2 ruptured major tendons surgically transferred and swollen joints all over. My hand ortho says to fuse my thumb which looks as if it is dislocated. Has anyone else been in this vortex of doom?
Lambchop

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Hiya. So sorry you’re feeling this way.

What to do? I guess voicing how the disease is affecting you is one step forward.

As for the OA opinion, I’ve always thought that severe OA is a big deal. A dismissive ‘it’s only OA’ approach does my head in. And wrongly diagnosing or wrongly re-diagnosing inflammatory arthritis as OA is appalling.

I experience the feelings you’re expressing sometimes. What really hits me hard is the impact of PsA plus the passage of time … less resilient bits and pieces and damage of various kinds, any bad stuff that looks like being here to stay.

Are you considering a second opinion re. the OA?

Yes,actually. Got the name of a physitrist (?) For pain management. Recommended by my GP and therapist. I will have my records transferred if I am comfortable with him. Just feel like I’m starting from scratch, frustrated and angry at the world, yet again. I try to keep telling myself that it could always be worst.

Was thinking more a different rheumy’s opinion as to whether you have PsA, OA or both.

Learning about pain management though … that’s got to be worth a shot. My heart would sink, initially, if that was suggested for me. Kind of sounds like a long road and you wonder how effective it’ll be. But from what I’ve heard pain management clinics etc. can be really good.

I guess we are all constantly ‘re-programming’ ourselves to cope as best we can but getting structured, targeted training in how to do so may well help considerably and at least it is positive support for you.

Keep us in the loop if you like, sounds interesting.

Just took a look at your profile and see you love gardening. How’s that going? I am spitting tacks at having to ‘adapt’ my gardening ways! I want to really get stuck in, not ‘potter’! However I am trying new approaches.

Realistically, my garden has been down sized, I do push a bit All greens, which my squrriels don’t care for. Thanks for asking

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I’ve gone in and out of a sort of vortex of doom, especially when first diagnosed. However I’m not as far down the path as you as I’ve just started my 2nd biologic, when the first one failed after 11 months of using it. And I’m less than 4 years diagnosed.

We’re told here in the UK to give biologics 3 to 6 months to see if they do anything and then told most don’t get up to full efficiency till you’ve been on them a year. So going through 7 of them in 3 years seems sort of super quick. And it would then feel extremely odd to me to be told 'actually it’s ‘probably’ osteoarthritis at the end of all that. That would send me metaphorically ‘running’ to another rheumy very quickly, frankly. Are you thinking of doing that as well as the pain management stuff? I would be. Very much so.

For me dealing with the loss of ability and capability talking therapy helped enormously. I resisted the anti-depressants though. But if I had gone through so many biologics as you have without some relief, I would certainly be extremely concerned emotionally. And exceptionally fed up and very depressed too.

Get a second rheumy opinion please. From a rheumy who is really excited about PsA, whose career is based on PsA. And then see. Such a specialist should be also properly capable of distinguishing between OA and PsA too instead of talking about things ‘probably’ one or the other. You could have both, or one or the other but wouldn’t it be useful to know more coherently what was what? And most certainly give the pain management thing a decent go. As @Sybil said ‘structured, targeted training’ is always a good thing.

And in the meantime have an endless supply of cyber hugs from me. :hugs::hugs::hugs: