Recently Diagnosed with CREST syndrome

[Emfrenette]

I have recently been seen by a rheumatologist, and was told I needed bunch a blood work they first told me I potentially have lupus /scleroderma , then test came back they said more likely lupus now it’s changed and they think it’s limited crest since I don’t seem to show any appearances of lupus , and they seem to think Its. limited to my fingers , I also have reynauds and not controlled yet with meds , tried nefedipine. That made my migraine hell , now I am currently trying popranolol and I still suffer with severe reynauds “blue/white numbness “ in fingers even when not outside . I’ve been recently getting lots of headache worst than normal , my eyes are driving me nuts , like fibers or sand in them and they water all the time , my nose has been feeling dry , like my nose is blocked or narrower . When I bend over my nose will drip severely , my head feels like it’s always pounding and I have lots of pressure in my head 95% of the time . Always have pain in my left shoulder and upper back pain that seems pretty consistent . I did a bunch of test to check my lungs and heart everything seemed fine now I’m waiting to see rheumatologist in August time being all these awesome symptoms I’m dealing with are not being dealt with and are driving me nuts .

[fairy56]

Hello Emfrenette, this may not help, but the symptoms you are displaying are pretty much what most of us experience, you say that you have tried Nefedipine, have you asked about other medication, I take Amlodipine and recently been prescribed Sildenafil as well. Is there any chance that you can get an earlier appt, it might be worth ringing and saying if there is a cancellation you would be prepared to take it or ask if you can be fitted in sooner, hope this makes sense. The good news is you have been told you have no lung or heart issues. I hope this helps in some small way, take care x

[Emfrenette in reply to fairy56]

Thanks for your reply I’ve learned to know this is a very unpredictable disease to have so far I was told mine is limited to my hands but the other Symptoms seem to be more bothersome , lots to still learn from this rheumy seems very uneducated to me just guessing game and non important for them to treat you

[Emfrenette in reply to fairy56]

Thanks fairy56 at the moment I feel kind of at lost , my next apointment isn’t until August , they don’t see anything too major I guess but symptoms are always changing I’m always complaining o try not to think about it all the time but when I have pressure on my head when I bend over and muscle pains it’s a constant reminder

[zenabb]

You are being well looked after and being well investigated. I have CREST. You must tell them about your symptoms so they can help you. SRUK have a good article in this month's magazine.

[Emfrenette in reply to zenabb]

How can they determine the difference between crest and full on scleroderma? I feel like mine isn’t only limited to my hands my body has different symptoms all the time and it’s just driving me nuts they don’t seem to be able to help me with how exhausted I feel . I’m working part time and get lots of sleep . All I have been looked after so far is how to treat my reynauds and meds don’t seem to be helping at all .. now waiting to see him in 4 mths for what ? Not sure why so far away .

[Rebecca1993Foster]

Try CBD oil for the headaches.. I've tried everything from propanalol to amatryptiline for my headaches.. nothing seemed to touch it but the oil xx