Today was my appointment at the palliative care hospital, and since I know that they don't manage chronic pain in the pain clinic, I was very skeptical. I had to do this appointment as I was referred a year ago by the city's Lupus Specialist and he wouldn't see me until I met with this specialist who was a dermatologist.
The doctor was very kind though, and he knew all about SLE and pain and fibro. He had a gorgeous accent that I can't place, but it put me at ease when I went in with a bit of attitude - at least in my head. He went over my last blood work, again from a year ago - and my ANA's went to negative for the first time so he was wondering if Lupus is in remission and that it is mostly fibro that is attacking now. I told him about the experiences and that yes, my lupus was textbook.
We talked at length about it being heard of to have false negatives with the ANA, but he did support and believe the lupus diagnosis (5 doctors have also confirmed SLE since my initial Dx).
The shoulder rash he believed was more SLE evidence, but he wasn't sure about my face rash if it was the malar or rosacea, however the treatments would be the same. He was concerned either way and shook his head that I have to endure this 'mystery'.
We discussed medications, and he suggests that I increase the Amitryptine, Lyrica (I tried not to scoff), Plaquinel, but he also suggested Methotextrate (Chemo) as his top med for me to start.
I'm still not okay with that.
As he examines me after the discussion, he says 'biopsy'. Since I was there, and have no car and have a very hard time getting to appointments as it is, I agreed to it just to get it over with. He gave me anesthetic and after a few minutes he does the biospy, however the anesthetic didn't take - and it hurt, alot. He picked a part of my right cheek, apologizes for the pain and the scar that I will have after. I was to continue lying on the exam bed for a while, and he came back and only then did my face start to go numb. I didn't realize until I felt threading and a bit of digging in my skin that he was stitching my cheek up.
The freezing is coming out as I write this, and the pain is increasing steadily. The stitch should dissolve in a week but I have to keep the bandage on it also for that long. I look and feel like a monster. I find it hard to talk and yawn, eating is a challenge.
Praise be to the bendy straws!
I'm glad he took you seriously and actually DID something rather than blow you off. I still find it unacceptable it took a year for you to get an appt with him, though. I hope increasing the Amit will help. It's certainly helped me, though it took more than 6 weeks for me to get over the sleeping all the time side-effect, now that I'm off it, I realize how much a difference it made in the nerve pain. Love you! Muahs!
ReplyDeleteYou and I have talked about this quite a lot and I know your reasons for scoffing Lyrica and refusing Plaquinil. I would agree that increasing your Amitriptyline to the prescribed amount could really help. So sorry to hear about the surprise biopsy and that he didn't wait for the anesthetic to kick in before starting the biopsy. No one should have to endure that.
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