Coping with a bad flair up that isn't settling

Stayinghopeful

Hello,

I last posted on here a year ago when I was waiting for a diagnosis for pain either side of my sacrum which I had had for 5 years. I got diagnosed with early sacroiliac joint osteoarthritis. (I know that early osteo doesn't normally cause a lot of pain, so it's not a definitive diagnosis, but it's the best guess at cause)

I got referred to pain management and they offered a nerve block followed by ablation if successful but I actually improved quite a bit since I got diagnosed. I think through exercise, pacing, positive mindset etc. So we had agreed to wait and review in a few months as I thought it might not be necessary.

However I went away at Christmas and tried skiing again. I was back doing lots of hillwalking so thought it would be ok. Unfortunately it triggered a massive flair up. I'm now back on the waiting list for the nerve block and radio frequency ablation.

But in the meantime I am really struggling with the pain, it hurts a lot all the time even when I am not doing anything so it's really hard. I have had bad flair ups before but normally they settle in a week or two. I've tried all my usual strategies ice, cold water swimming, focusing on positive things to help my mood, gentle exercise and movement, avoiding aggregating activities) No over the counter pain killers help. I have an appointment in a week and a half to see my GP to see if they can give me any medication that might just take the edge off and make it easier to manage until I get my appointment with the pain clinic. But in the meantime just finding the constant pain really hard.

I'm not sure I am really expecting any advice as I am well educated about self help strategies for managing my pain, but maybe I just wanted to share with some people who would understand. 🙂

Naomi33

Morning @Stayinghopeful and welcome again to online community.

Sorry to hear your concerns about flare up.

I used to have a lot of them which would last one to two weeks.

I would suggest you write a diary and take photos of any swelling as evidence.

This helped me prove how bad mine were as when they went I looked and felt normal (ish) !!

From what you have said you are doing all the right things so continuing as you are.

Personally I think you just over did it and your body reacting sadly, sure it will calm down soon.

Maybe also request an earlier appointment ??

Best wishes @Naomi33

Stayinghopeful

Thanks @Naomi33 I'm just finding it hard that it still hasn't settled after 6 weeks. I've had flare ups before but apart from a couple of exceptions including a COVID induced flare up they have usually settled in a couple of weeks at most.

I can't really get a sooner appointment unless it's an emergency so will just have to tough it out but an doing a little better today. Managed some gentle exercise and saw some friends which cheered me up so will just try to keep moving forwards.

Baloo

@Stayinghopeful you are very nearly describing my worst nightmare, after a seeming remission to suddenly find yourself back where you started.

It seems to be this unpredictability that means the physicians say we have wait a few months to see what happens. Its not like other maladies such as diabetes, where the treatment outcome has some predictable results. We don't seem to have that luxury.

However, it sounds good that what worked for you last time might be all you need this time.

Stayinghopeful

@baloo I don't think it's good to dwell too much on the worries that it might get worse. It might happen. But I'm glad I enjoyed the time when I was doing better and didn't just spend it all worrying about things getting worse again.

For sure it's hard and heartbreaking to lose all that progress but I have always told myself every time I have had a flair up that I have always got back to where I was again. I hope and believe that will happen again. It looks like it might just take a little longer this time.