After messing about for 2 weeks waiting for a GP phone call, I hand delivered a letter to the surgery last week listing what I needed to talk about and was rewarded with a loooong face-face appointment today.
1. Back, hip and leg pain. We discussed the fact that this pain has been present for a long time (nearly 2 years) and was worsening, but got the same convoluted answers as usual when I asked what the cause may be.
Yes, it may be SI joint pain, could also be sciatic pain or piriformis syndrome in addition to that (been down this rabbit hole before). Referral back to physio. Discussed tweaking my pain medication to help me to sleep better. Pain clinic referral on hold for now as GP has not seen much benefit for other patients. "Anaesthetists like sticking needles in you, there really isn't any long term benefit from injections in your spine". Rheumy had written to GP asking him to refer me, so hearing his take on things was interesting.
2. Referral to gynae arranged to discuss ablation as the next option to stop continual bleeding. Prescriptions issued for items to also help with intimate dryness/pain. I was brave enough to ask about this because of Coco's fab article here: healthunlocked.com/lupusuk/...
3. Feet examined, decided that underfoot pain on walking is lupus related inflammation/arthralgia.
4. Plan in place for colder weather, to manage Raynaud's and erythromelalgia. Prescription for nifedipine to be placed on repeat. He talked about how difficult erythromelalgia is to treat but is willing to work with me to find what works best.
5. Pain in upper feet, hands and shoulders is most likely due to progressive osteoarthritis. OT referral has been mentioned by GP and by consultant to offer support with practical issues.
6. GP is happy to complete any paperwork pertaining to ill health pension/accident at work claim. My employer sacked me after an accident at work without making adjustments for those injuries and loss of function or my subsequent lupus diagnosis. They are now belatedly offering ill health retirement benefits because I am taking legal action. I am also thinking of putting a PIP claim in as my income is sketchy at best just now due to unpredictable day to day function, so the reports will be useful for that.
7. Anti-histamine to be used in conjunction with sunblock to manage my current extreme reaction to sunlight. Showed GP pictures of my legs after 5 min exposure despite being slathered with factor 50 and covered with long, reflective trousers. He was shocked at the appearance of my skin. He seemed to think the cause was a combination of hypersensitivity and lupus medication.
I was impressed at the amount of time that he was willing to spend with me, even if I didn't get answers to all of my questions. I hadn't actually seen him in person since last August so didn't feel bad about taking time to talk about things properly. There is only limited time when you're seeing your rheumy and after the last visit she asked that I call on him to manage some of the presenting issues.
Back to hospital on Thursday to discuss Mycophenolate tolerance with nurse/pharmacist then back to see rheumy at the end of the month. I am glad that things are being taken care of but am also exhausted!
I know that this is just how it is but getting the best out of our appointments requires so much preparation that it does leave the old tank empty at times. Time for a rest tomorrow 🛏😴