SCLE and fibromyalgia? Paying for private rheumatologist?

[Raven_claw]

I have subacute cutaneous lupus (take max dose of hydroxy). Have been unwell again for a few days. Swollen rash around eyes, extreme fatigue muscle pain. Bloods in past have always comeback clear of systemic lupus. GP has suggested my eyes look like allergic reaction (already taking max dose of fexafenidine) and rest is fibromyalgia. No blood test a available at mo. Has anyone else been diagnosed with both skin lupus and fibromyalgia? Also thinking of looking for a private rheumatologist as I keep being pushed back to gp and dermatology and going around in circles. Has anyone gone down this route is it worth it?

[Smudge4465]

Morning, sorry to hear you are unwell. Hope my experience can help.

I have lupus with skin issues. I also have several allergies. I was initially diagnosed with fibromyalgia 8 years ago by nhs. Then

I had an emergency with Steven Johnson syndrome and was admitted as an inpatient

for many weeks in the burns unit. maybe I had lupus all along. I’m not emotive about that. It’s common to be diagnosed with fibromyalgia initially. It’s common to take years to get a firm diagnosis cos lupus is complex. No one test to confirm. If dermatology are involved you are half way there. They work very closely with rheumatology. The communication between my two consultants at my hospital is excellent. I had private consultations and found them useful but they are not cheap.

It can be very frustrating. Please private message me if you would like to discuss further.

[Raven_claw in reply to Smudge4465]

Sorry to hear how you have suffered. I am glad you have good team of drs. I have subacute cutaneous lupus diagnosis because of skin biopsy. Raynolds, migraine and myalgia. The allergies mainly hay fever have only developed over the last year and since I’ve been on hydroxy but probably just a coincidence. The fibromyalgia is a new thing my gp is talking about because my bloods are clear. I was having such a low day when i wrote my original post but I am starting to feel a bit better and think a lot clearer. My husband is keen for me to go private but you are right it is pricey and I’m unsure whether it will change any diagnosis as all these thing/symptoms seem to overlap. Thank you for taking time to share you experiences. It really helped.

[A-r-c-h-I-e]

I too have fibro & lupus . I was referred to rheum , which was a waste of time!

[Raven_claw in reply to A-r-c-h-I-e]

Thank you for replying and sorry you are struggling too. I have been to rheum 3 times over last few years and because bloods are ok and I’m usually better by time I get appointment I get sent back to gp and derma.

[Liyaelize]

Histamine liberating food and medication is an issue for me. I follow a low histamine liberating diet. Talking food at tolerance level. 1 cup of milk a day more than that cause problems. You need to find your own tolerance level

[Raven_claw in reply to Liyaelize]

I don’t drink milk. Black tea for me. I will research low histamine diet. Thank you