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Leukaemia CARE
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Tips for nausea?

Hi, I was diagnosed with CLL this week stage a

Feeling well apart from the obvious shock. But getting regular waves of nausea throughout the day but worst the morning e.g from about 4am I know that I will have to talk to a health professional but just wondering whether anyone else experienced this and any tips or advice?

Thanks

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Hi Love2sing, I just love music. I do not remember the nausea and as you say that is something for your health professional. I was diagnosed with CLL in 2003 and I have lucky enough to be on watch and wait (active monitoring) ever since. I manage the symptoms I was diagnosed with like fatigue, which can come on immediately or up to 48hrs after I have overdone it emotionally or physically. I do not deal with what personally stresses me well. I get infections and hot/cold sweats etc.

However, what I did not deal with well was the initial diagnosis. I was in shock and felt in a surreal bubble for a long while and I had fears, anxiety and all these 'what if' thoughts and feelings whizzing around in my head, the darkest hour is just before dawn. I also had this weird feeling of wanting to pull the leukaemia out of me. As I type this it all comes back to me as if it were yesterday. I still get anxious when I have medical tests or appointments. I did not deal with work well, how could I explain to them what I did not understand myself.

I wish I had just given myself time, don't forget you have just had life changing news. Be kind to yourself and give yourself the odd treat. Don't forget Leukaemia Care has a range of very helpful leaflets and a wonderful support line, their details are at leukaemiacare.org.uk. Take care.

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Hi you inspired me with your reply

I have CLL FOR 2 1/2 years. I feel all those feeling you mentioned..

and a far as nauseous it could be nerves.. it can do that to you!! Everyone is different..

So glad i joined this group..

Thanks!!

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Hi I was diagnosed 9 years ago with cell ,watch and wait.At the time yes it was a real shock and worry .Over the years I have zero support from hospital or doctor .The last 6 months I have become so very tired and a pain in between my shoulder blades .I struggle greatly with these two things .I do have an immune compromised thioridazine gland but as I have these aches and pains my doctor thinks I may have fibromyalgia.I never like too bother any professionals but I just constantly feel unwell of late .Sorry for going on as I’m so aware there is a lot of people far far worse than I am.

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Hi, I have learnt not to worry about 'bothering' medical people, that is what they are there for and you are an 'expert' on your body and I know when something does not feel right. My mind is my worst enemy and if I am worried about anything the fears, thoughts, feelings and 'what if's' go round and round. Take care of yourself.

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Thank you for reply ,you take good care of your self too 💐

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Did the nausea start when you got the diagnosis given or was it there before you knew? Anything prompt it? Anything make it better or worse? Nausea can sometimes be anxiety related. There are also some mechanisms related to cll that might be causing it. But for sure you need to talk to your doctors about this. And give yourself a chance to experience the emotions you are feeling with regard to your diagnosis. It’s understandable to feel pretty anxious and shocked at the beginning. Don’t try and deny that or suppress it. But also allow yourself moments when you put CLL to one side and try to regain something of a normal life. Not easy I know. But trust me over time it does get a bit easier.

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Thank you for your reply....yep still trying to get my head around what it all means.Difficult telling loved ones....but am determined at the moment to be as positive as I can be.

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Welcome Love2sing sorry you have had to find us, yes it is very hard to get your head around and you may not feel yourself for quite a while. Nausea is not normally associated as a CLL symptom outside of treatment, however I do know my own stomach felt like a washing machine or in a knot for a long time after diagnosis, although not nauseous I was often not far from it. I hope you can see your doctor to aid with all this and rule out other issues if this is not a recent development with diagnosis.

The C of CLL is for 'chronic' slow growing in general . Hopefully you will have a long watch and wait and should you ever need treatment there are now many options to keep us living a normal life expectancy.. So there are great reasons to stay positive.

Understanding more about CLL and watch and wait can help you to be able to cope and share you diagnosis with others. Take your time it can understandably become totally overwhelming, there are many here who do understand what you may be going through and will help you adjust and navigate your way through this. You are not alone, yes it does get better with time, keep talking.

here is a link to CLL info - leukaemiacare.org.uk/suppor...

Living Well with Watch and Wait info leukaemiacare.org.uk/wp-con...

Leukaemia Care Nurses or Support team are also available to talk with here 08088 010 444

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Thank you

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