Unclear diagnosis

[Scottishstudent92]

Hi, I was diagnosed with MCTD in May 2018 after a couple of years of experiencing fatigue, worsening Raynauds and joint pain. I was taken off Hydroxycloroquine as it was felt I do not have inflammation in my joints. However I live each day with constant joint pain. My RNP is positive and my ANA is speckled. My rheumatologist says there is no inflammation in the tissue and so has discharged me but has said to look out for symptoms such as worsening circulation etc. I am concerned that I am now waiting for symptoms to get worse. Please if anyone has had similiar experiences let me know.

[Intimeslikethese]

Is your vitamin D level low? I take RX ergocal Vit D gel cap once a week along with a daily multivitamin and it really helps with my energy level. I am still a little slow but it keeps me going🥴 Also, watch your carb and sugar intake, that may be a source to fatigue, as well. I know for me, it sometimes is.

[Hidden]

Hi there. From your profile I see you’re also in Scotland? I have Sjögren’s with Raynaud’s, small fibre neuropathy and overlap CTD and also am apparently to be discharged. I wonder if the pain you are experiencing might be small fibre neuropathy like mine if it’s not in your joints or muscles perhaps? I was told that Scotland has a desperate shortage of rheumatologists and this is why they can’t keep patients on their list unless we are on immunesupressants? I admit I feel this is wrong because it worries me not being monitored to see if my Sjögren’s/CTD overlap are progressing.

Have you seen your GP about the pain yet and if so have you been offered or tried any pain meds like Amitriptyline, Gabapentin or Pregabalin? You shouldn’t have to live with this worry or untreated pain.