16 February 2017 at 7:11 pm #53680
I have been prescribed Tramadol by my GP for my pain. Is this safe to use if you have carcinoid syndrome? I haven’t been diagnosed yet but concerned to use it because of all my symptoms.17 February 2017 at 12:13 am #53682
If your GP has prescribed it for you, then it should be safe for you to take Ali. Read the leaflet that comes with the medication though – and be aware that Tramadol can cause problems for some people (Just like any other medicine can). It can make constipation much worse for instance. If you do think you’re getting adverse effects after a few days, then stop taking it and report back to your GP and ask for an alternative. Simple! Keep positive and don’t make too many assumptions regarding your symptoms. You mentioned before that you’d been examined by your gastroenterologist and nothing conclusive was found – so that’s good news for starters. I’d still recommend that you take some proactive action yourself and maybe ask to see a nutritionist – since you could equally have developed a food allergy, which, believe it or not, can cause all of those symptoms too. – Strangely, these late-developing allergies always seems to be neglected by doctors (and patients alike) – Mine never ever touched on the subject in twenty years!. Why not give a Paleo – or Low-FODMAP diet a whizz? The results in some cases can be immediate and life-changing. Like I’ve said before, it worked very well for me and now I’ve gradually returned to a more normal diet. I know I keep harping-on about it – but I really have faith in it – and I can’t believe none of my doctors had advised me to try it in my decades of suffering with UC and IBS. (Somebody here on the old forum advised me to try it last year – I’m so glad they did). Anyway Ali, I hope you get some relief with the tramadol if you do decide to take it. Good luck and keep positive.
Clivuss17 February 2017 at 1:19 am #53683
Hi Clivuss, thank you as always for answering! There was no leaflet in the box so I looked it up (again foolishly, I will never learn!), and it said something about carcinoid and serotonin. Couldn’t make it out so wasn’t sure. Unfortunately I haven’t seen a gastro man yet, big waiting list but did see an endocrinologist who lets just say was a waste of time. As for food, haven’t eaten a lot of that lately but I did look up the diet when you mentioned it before and will give it a go when I feel like eating again. Things seem to be getting worse unfortunately, probably not helped by my stress levels, lost all hope of it being something simple. Goodness, I must start learning to pick my chin up off the floor!17 February 2017 at 8:29 am #53685
Hi, what symptoms have led you to NET? if you dont mind me asking. also what pain is the doctor treating, surely if you don’t know the source of the pain and symptoms that should be a priority.
My husband has severe syndrome for which he is receing medication. Our gp gave him tramadol, but his professor who is a net expert said a big NO. it made his syndrome worse and is also very addictive. he now takes paracetamol. Please give more details if you can and maybe the community can help some more, good luck17 February 2017 at 3:20 pm #53690
I have severe burning and redness basically everywhere, I get absolutely no let up from it. If it’s not one place it’s another – face, scalp, neck, chest, arms, legs, back. I’m also now constantly feeling short of breath and coughing a lot, sometimes dry and sometimes with phlegm. Very sensitive to warm water and the cold, heart palpitations and a few other bits and pieces. I’m absolutely beside myself because of the pain, I’m feeling like I can’t go on and that’s just not me.17 February 2017 at 4:10 pm #53691
if you have a helpful gp could you get him to prescribe some blood and urine tests while you are waiting for the gastro, you might gert more information that way.I’m thinking 5h1aa urine and blood seratonin and cga.
Have you seen a copy of the Interscience institute book on neuroendocrine and carcinoid, you could print off a copy and take it to your gp and then to your gastro.If you haven’t got a copy I will give you a link. where do you live, if you dont mind me asking? we are in France but are British17 February 2017 at 6:07 pm #53697
I have just done my second urine test, the first one the lab binned because some paperwork was missing from GP and they didn’t bother notifying the surgery that they had done that. I’ve also just had the blood test done but only because I was so distressed at the Urine sample fiasco that he ordered the bloods. This all started five weeks ago with just a burning cheek and has accelerated beyond belief. The gastroenterology depearrmenr has accessed my referral and deemed it non urgent so I definitely won’t gat an appointment for 6 – 12 weeks. Is this constant burning/stinging normal?17 February 2017 at 6:37 pm #53700
was it the 24hr urine collection after following a special diet for 2 days before and during the collection.
Yes my husband used to itch and burn face, neck,arms, trunk, back, hands, he used to drive me mad with itching but the pain drove him mad, it looked like he’d had boiling water thrown over his face and chest. he had surgery 2006 and has had all available treatments to no avail. however at the moment he is on a complex regime of lanreotide 120 every 14days, 3x 500mg octreotide per day, plus he has just started interferon chemo. he uses a huge amount og skin cream and steroids for his skin, which now flushed a couple times week on this regime, it is always there tho just about under control.You could try taking an over the counter anti histamines as that helps some people. avoid triggers, excercise, stress, cheese, red wine, for some any alcohol, coffee chocolate, preserved meats like ham, bacon, paté, nuts.hope this helps a bit17 February 2017 at 9:27 pm #53705
Yes it was 5h-1aa urine collection. I don’t itch, just severely burn. I just can’t believe it’s come on so severely and so quickly, I had nothing before. Does this reflect on the size or position of the tumour? I have hardly eaten for the past five weeks and am just a tad stressed! So not helping myself I’m sure. Sorry I never answered your earlier question about where I live, I’m in the south west of England. What part if France are you in, have you been there long?18 February 2017 at 8:44 am #53710
Hi, small world,I come from Bournemouth, but we las lived in Torquay and before that Thurlestone in Devon.my daughter lives in Plymouth!
As far as I know size of tumor is not reflected by flushing severity. a tumor can be a tumorlet and minute and stll cause syndrome. I understand there are good net doctors in Bournemouth and Southampton.
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