Firstly, can I say that this forum has been invaluable over the last 9 months in making progress with my own health issues. I have found so many threads really useful.
I know from searches of the forum that pain/fatigue in Vasculitis come up at regular intervals on the forum but I would be very interested in hearing stories from people with similar issues and how they have managed to cope with the pain/fatigue (both when other symptoms are also evident and when the other symptoms are under control).
From my own perspective it has taken me over 3 years to get all the other Vasculitis symptoms finally under control to just be left with pain/fatigue (albeit at levels which are currently having huge impact on quality of life). I feel very lucky given it took so long to get close to a diagnosis and then treatment that worked that I have no long term damage to the Vasculitis impacted areas. My breakthrough finally came when I was switched to Methotrexate injections from the tablets form (which it now appears I was not absorbing properly). Within weeks the improvement in symptoms was remarkable. I was also greatly helped by finally getting to see a Vasculitis specialist.
My Vasculitis consultant was explaining this week that for reasons unknown they do see a lot of these kinds of pain reports in people with Vasculitis, even when the other symptoms are under control. The best theory he had is that the pain mechanism gets rebooted into a hyper sensitive state as part of the inflammatory process thus causing the increased sensitivity to pain. I think I have read something similar on this forum as well as comments around possible nerve damage caused by the Vasculitis.
My pain comes from 2 distinct situations:
1. Pain from the site of old operations (e.g. appendix operation site but internal - scar tissue perhaps) or old sporting injuries.
2. Pain from pressure. For example:
- ankles when standing
- anywhere I lay on for too long at night - amitriptyline helps get me through the night. As does a form mattress and pillow.
I only use codeine and paracetamol for pain relief.
Fatigue is a virtual constant, but I'm getting much better at pacing myself now than I used too (John's reserve battery analogy from a few years ago is a very good description).
Anyway, I would be really interested in other people's stories around pain and fatigue and any guidance to improve things. Has anyone found that the pain/fatigue eventually subsides when other symptoms under control?