Last week I knew I was starting a flare, of what I'm not sure at the moment because although I already know I have Hughes and Sjorgrens Syndrome I'm now being investigated for Lupus and also referred to the London Hospital because I'm told I may have Behcets.
I started off feeling generally unwell, you know the typical flu like symptoms, then I got more specific pain in joints, starting with hips, then wrists, and hands, fingers and thumb knuckles, elbows. Really bad fatigue. I felt like I had a low grade temp and I had a sort of rash on my arms face and chest which looked like a cross between prickly heat and German measles (I can get that a lot).
On Saturday night I got a row of little bumps come up under my bottom lip and a couple on the top which feel very sore. I think they are what you could call tiny blisters. The bottom of my lip is now tingling all the time and is a cross between an itching feeling and stinging. Then yesterday my eyes started hurting and by last night were really sore and gritty and have what are the classic signs for me of corneal ulcers.
Does any of this sound like Behcets to any of you lovely people? If so what do any of you do when you get these ulcers in your eyes and blisters round your mouth?
My GP just wrote the referral last week so I was wondering how long it is likely to be before I would hear from the London Hospital. In the meantime I have no real support as my GP does not know what to do with me so I'm left to my own devises. I have a good Opthalmologist who could treat the corneal ulcers in isolation which he normally does with antibiotic drops but that was before he or I had any idea it might be because of Behcets. The drops he puts in my eyes to have a good look round usually make me feel really ill and last time I came out in a rash.
Any comments or advise would be appreciated. Thanks.