Managing emotions/thoughts whilst waiting for test results

Stayinghopeful

So am a fit and active person, youngish (early 40s) who has been living with fairly high levels of chronic pain for 5 years. As far as I knew it was non specific unexplained pain. (I've watched Lorimer Mosely so well aware pain without damage is totally possible) So I have just been been following all the general guidance around managing and living well with pain.

When I moved my new GP wanted to run some additional tests to rule out a few things. I just expected those to come back clear. But I have had the first test results back (got a text message) and it suggests arthritis, but that test on its own doesn't really tell me very much. There are actually quite a few possible things it could mean including potentially nothing at all. Until I have my other tests back which is going to be a couple of months I think I shouldn't really read too much into it and need to just carry on as normal, stay positive, keep being as active as I can etc.

However this is easier said than done! I am finding myself constantly thinking about what those tests might mean, what implications that has in terms of future treatment etc. So any advice about how to distract myself and not think about it too much? I guess this must be a pretty common experience? (No speculating about results please, that's why I have been deliberately vague in sharing my actual test results)

I have only got this information a couple of days ago so maybe it will get easier once that information doesn't feel quite so new.

Stayinghopeful

Just to follow up from this and say I would just love to hear from people who have been through diagnosis. I feel like the mixed emotions I am feeling around waiting for test results must be pretty common and I think just hearing from other people who have been in the same boat would help me feel a lot better.

In my case the potential outcomes of what those next set of results say might impact things like treatment options etc quite a lot.

And those first results were a bit of a curve ball for me and took me quite by surprise.

stickywicket

Distrwction is an excellent tool for dealing with arthritis of any kind. But what we fins absorbing is a personal thing. I can lose myself in cricket, baseball, football, poetry, music but others might be turned off at the mere thought of these. When my arthritis was at its worst - prior to joint replacements - my kids were young and, one way or another, they took up a lot of my time and thoughts. I think fhe main thing is to just be firm about not thinki g about whatever it is you don't want to think about. Switch off as soon as it surgaves.

Stayinghopeful

Thank you!

https://community.versusarthritis.org/discussion/comment/718030#Comment_718030

I am actually feeling much more positive. I have a friend staying this weekend and that's really helped to take my mind off things.

Emmasknackeredjoints

Distraction is key. But call the surgery and ask them to explain in more details if your that worried. The txt message dosent mean you can't get a call. It's only a quick was of letting you know the update. Plus bloods results do not all come back at the same time so they don't have all the facts at once.

Everyone keeps moaning about these txt messages but patients forget the surgeries have hundreds of results to process every day they can't call everyone .

If you want more info call and ask for a telephone call or f2f if you really feel you need it.

mosborn11

If it helps, I am still going through the process of them working out what is wrong with me and I totally get the anxiety. For me, I have to constantly remind myself that just because they can rule out conditions and don't totally know what it is, my pain is real and it matters that I'm in pain and deserve help. I've also found talking to a therapist has really helped but I know that isn't accessible to everyone <3

Stayinghopeful

https://community.versusarthritis.org/discussion/comment/718090#Comment_718090

Thanks yeah. I am not sure calling them would help, as they won't be able to tell me anymore until we have the MRI to confirm and there is a long wait for that. I do know what the first results mean and the possible connotations of those results, but I won't know which of those possible scenarios is correct until I get the MRI.

So deep breath and distract myself it is!

Stayinghopeful

https://community.versusarthritis.org/discussion/comment/718095#Comment_718095

Thanks yeah it's hard with pain isn't it. I think it's a very common experience to take a while to get a diagnosis and for some people they just don't know.

I think there is still a lot we don't know about pain and arthritis. Definitely more research needed.

I've had chronic pain a long time. After the initial tests failed to show anything I had just learned to live with the fact that I had unexplained pain and that there was probably nothing more they could do and learned to live with that. I've learned some good pain management skills and it hasn't been getting any worse in that time.

Test results were unexpected and a bit of a shock. This GP has been much more through. It is reassuring to know that I might get a diagnosis, but also scary, when the diagnosis is not even something that I had considered I could have.

And yeah counselling can be an amazing help. I had counselling when I first developed chronic pain and I credit that support with helping me get to the place where I could work around the pain and manage a reasonable quality of life despite high levels of pain and some restrictions in terms of what I was able to do.

I'm doing much better than I was that first year or so. Just finding it's hard to get my head around it. You get used to the status quo I guess and when something comes along that changes that it's just a bit unsettling.

Good luck with your diagnosis too. Hope you get some clarity soon.

lindalegs

Hello @Stayinghopeful

Living with chronic pain is rubbish, let's face it. It's also exhausting and depressing, especially when you don't know what's wrong with you. I acknowledge the text wasn't what you expected, but it is just a label for your pain and you're now armed with some knowledge. I suggest you use this to your advantage if you can. Look into this, but don't scare yourself, and see if there are some other ways, other than what you do now, to help yourself deal with everything. Your other test results will either confirm what you have or dismiss it, but you're in the system and are receiving help instead of just battling through on your own.

I, too, think distraction is a great thing and works in the daytime but when you're in bed at night oft-times you'll get to whittle-hour when your brain will revisit your worries like a dog gnawing a bone! What I do at times like this is know, that I'm not alone, people all over the world go through the same thing, be it with different worries, but they're there nevertheless. I count the positive things in my life. I don't get out of bed, unless I need the bathroom, because our bodies need rest and rest is healing whether we're asleep or not.

Keep yourself as fit and active as much as you can but do remember that rest is important too.