Help with diagnosis

[Emfrenette]

How do you fight to get tested for lupus or Fibro . Im determined to find out more ansswers im tired all the time in pain all sorts of places that come and go and only have been diagnosed with crest syndrome and reynauds for last 2 years and doc wont do much . Only on meds for GERD.anyone have guidance

[amc282]

Do you have a Rheumatologist? Ask about hydroxychloriquine. That’s what I am on for CRESt.

[Emfrenette in reply to amc282]

Thanks for your reply unfortunately im in canada and seems like this "disease" is so uncommon to all doctors ever i see a rheumatologist and i wait 6 mth for appoinment and im with him possibly 15 mins ! Everything i discuss with him he tells me to talk to family doctor it doesnt have anything to do with crest .. i was on hydrocloriquine for few months and he took me off because of leg swelling .. im kind of at a loss i feel like doctors dont listen im not making these pains up lol

[amc282 in reply to Emfrenette]

Sometimes there is a lot of overlap in conditions. Keep pushing your GP. You are your own best advocate. Hydroxy works well for me, but I worry about eventual toxicity.

[Emfrenette in reply to amc282]

Thank you ! I will have a chat with het soon . Covid is making it hard shes doing over the phone consults not in clinic . So over the phone is hard to get the right answers

[celvo]

If you’re taking medication for GERD as well - have you considered being tested for coeliac, as we all know so many of these conditions are comorbid with one another! I have raynauds coeliac and lupus.Good luck getting your diagnoses, you just have to keep pushing and advocating for yourself. It is an exhausting and sad reality. These conditions just seem to be little understood and often dismissed best of luck xx

[Bruffingtons2]

Hello there Emfrenette.I am sorry to hear you are having to push and enquire all around ...especially inches current world Covid circumstances doesn't help.

In the UK we have a gold star national nectar for these conditions ... wondered if there as a national Canadian specialist centre ?

Maybe worth looking up online .. using a Raynauds group perhaps?

Good luck ..

Bruffingtons2

[Bruffingtons2]

Sorry I meant national gold star centre! Bruffingtons2

[Sanmateogirl107]

immune specialist if your having pain try wild lettuce extract it works great (ebay) I USE IT FOR CREST AND FIBRO AND CHRONIC PAIN SYNDROME. good luck love julieanna

[Sanmateogirl107 in reply to Sanmateogirl107]

prazosin 1 mg for raynaud's, cellcept also ask about it julieanna