p Ancaster vasculitis lung involvment

[Manock]

curious- I've been in remission around 1-1/2 yrs.im still very tired and have aches and pains. My blood work is good.sorry to ask I'm starting to get frustrated.

[Hidden]

Fibromyalgia, ask your Rhumatology consultant 👍🏼

[Manock in reply to Hidden]

One dr said I have that and another said no. It's the exhaustion that bothers me

[zoe69 Moderator Volunteer Vasculitis UK]

Ask your doctor to refer you to the pain clinic so they can investigate. I have secondary fibromyalgia and central sensitisation syndrome.

[Manock in reply to zoe69]

Weird thing is ever since I got diagnosed with p Anca I've noticed hypersensitivity to smells. Perfumes give me a heache now. Relation to vasculitis idk

[zoe69 Moderator Volunteer Vasculitis UK in reply to Manock]

Do you have sinuses involvement? I am sensitive to some smells, especially sweet and heavy ones. Most of it is because of the central sensitisation syndrome and fibro, but I was sensitive to smells from when I was diagnosed with GPA.

[Manock in reply to zoe69]

Honestly idk. As far as I know it's only lung involvement. These symptoms described came on after vasculitis weather it's related idk. I also go glaucoma again after vasculitis but no answer as to a relation

[zoe69 Moderator Volunteer Vasculitis UK in reply to Manock]

Have you been on steroids for prolonged time? It could be steroid induced glaucoma. Not vasculitis related, but treatment related.

[Manock in reply to zoe69]

Very interesting never thought of that. Yeah I was on 80mg a day for awhile then tapered over a yr

[michichgo]

Hi Manock,I was diagnosed with MPA (an ANCA variety) in 2013, with kidney involvement. I achieved remission in a year's time but I've never NOT been on medication of some sort, in order to treat ongoing systemic pain and fatigue.

Physicians and other vasci patients mention fibromyalgia and/or other diagnoses. As for me, I think vasculitis caused much more damage than can be seen by present day medical testing. Future advancements are sure to come.

In the meantime, pace yourself and find a good medical team with whom you have good rapport. There haven't been been a lot of responses to your post but please know you are not alone. Far from it, thousands of us share similar experiences and ailments.

We're a rag-tag bunch of health misfits but certainly understanding and supportive!

Be well, friend .

Michele

[Manock in reply to michichgo]

So the exhaustion and aches and pains are "normal" being in remission and good blood work for us? Lol

[Manock]

Thank you everybody