Awake and feeling sorry for myself. I feel so much has changed in the last couple of months and I’m struggling to get my head around it all. I’ve updated my profile to explain my situation so far. My worry at the moment is carcinoid syndrome. I’ve read that the Lanreotide injection usually helps with flushing right away but I haven’t seen any difference so far. I went a walk yesterday and had to stop for a rest after taking another really strong head and neck flush and was shocked to see later that my heartbeat shot up to 175bpm at that point. I’ve been tested for carcinoid syndrome but not yet had results. Also, my stomach cramps are getting worse and can be very painful. I’ve stopped driving as don’t feel comfortable doing so as the flushing makes me feel a bit ‘woozy’.I'm now also worried about the affect that carcinoid syndrome can have on my heart! This together with the fact it’s Christmas as my social media is filled with all my friends having fun and I’ve just cancelled the one thing planned which was a lunch later today because I’m worried about the effect of what I eat or drink will have on my stomach and my cramps were horrendous yesterday. My husband is very supportive and I’m also feeling bad that he is also missing out.
Has anyone else who has carcinoid syndrome have any experience of how long it took to control cramps and flushing? Should I as GP for something to help with the pain? I’m not sure if I should wait until the end of January before speaking to someone as what if this delay will cause harm to my heart?
I realise I’m rambling so sorry but everything is just so new and overwhelming 
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
I'm sorry to read how miserable you're feeling but it's probably a good idea to either speak to your GP or CNS to see if they can prescribe something to help with the pain.
I've done a search in the group and there are a few posts from people mentioning carcinoid syndrome. The most recent is from Positive so I've 'tagged' them into my reply to you and hopefully they'll pop on to share their experience with you.
Wishing you the best Christmas
"Never regret a day in your life, good days give you happiness, bad days give you experience"
