Complicated

W

What are you other disorders...are you under a rheumatologist for lupus??

Ideas jumping to mind:

- Rheumatology: Sjogrens Syndrome? (blood antibody search, lip biopsy)

- Dysautonomia specialist to make sure no ganglionopathy (AAG- extremely rare) 

Try some mouth moisturer for dry mouth symptom relief.

Do you have neuropathic pain medication trialed?

Have you been referred to a pain specialist (who does know that treatment)?

Hang in there and you need to push sometimes.

We have had horrid 1.5 years and if I relied on our physician, we would not get any further, yet he is mostly happy to refer on especially since nothing bounced back to normal by itself as every doc though it would 'just be a post viral hicup'.

You need often another pair of eyes, fresh start and sometimes that is very disappointing and you need to have a new fresh start again. I find that awful as time is passing in the meantime, time wasted, but there is no time to cry over spilt milk, we need solutions, hence please keep on asking for another referral to a specialist, be it an immunologist, rheumatologist, pain specialist....ask them, if their tests come back negative or treatment trials after months unsuccessful, what to do next, which ideas they have to consult.

We also did see psychologist, did breathing exercises and the likes. These helped maybe with dealing with pain a tiny bit and not go completely insane, but the root cause is not psychological, it's a side effect of being chronically ill.

It is exhausting, it is frustrating, but we need to battle on! 

Sometimes symptoms are connected, sometimes they are not.

My fav saying: 'people can have as many diseases as they like'.

So don't get everything put into one and the same quick draw.

We had at least 6 very dismissive docs! After 1.5 years at a cardiology check up, a fill in was there and had a glorious idea to refer to a team with loads of specialists at once, presented at once, they talking together, which blank spaces still existed. Why was that not ordered earlier?

One wonders, but you do get very dismissive approaches and sometimes tests done, that are from the beginning for sure not revealing anything (like our 3rd pelvic ultrasound instead of an MRI, just because of being cheaper) to be able to write 'further imaging', and actually, nope, just repeat imaging of a prior normal imaging, to be able to make your case look as normal as can be.

I have to calm myself down to be not couterproductive, but I can understand your frustration.

Yet we need solutions and we only get there, if we hang in there, do our homework, and battle on, asking for... another referal. Ask around in your area maybe via other social media, where someone with similar symptoms got helped. Sometimes those recommondations are helpful, sometimes you wonder why they were recommondated..... but if not tried, we wouldn't know.

Very energy draining, very financially draining, but I am so sure there are answers or solutions, that are simply not found yet and we don't want to miss them.

Best of luck!