Hello All my name is Beverley. I was diagnosed out of the blue in October 23 with Chronic lymphocytic leukaemia (CLL). I am on active monitoring. Since finding out I have struggled with anxiety and some physical symptoms which are impacting my life, I wondered if any one else here has the same as these. Following my diagnosis I had a flu and covid immunisations from this a number of my lymph glands became sore and achy. I have had these sensations ever since on and off in my groins, armpits, back of neck, sides of thighs, back of head. I have informed haematology but as my blood results are quite low they are not concerned. Ive been back and fore to my GP, I am suffering from anxiety I know as I am frequently nauseous, little interest in anything. I am physically fit, I walk around 50 miles a week with my dogs and do not suffer from fatigue. I am 55. I took early retirement form being a deputy head last summer. It is good to see how so many people on this forum are symptom free and are enjoying and living life to the full. Just wanted to know if anyone else has sore or achy areas around their lymph nodes.
Hi @BDavies welcome to our forum, you are certainly in the right place, and I am sure many people share your feelings.
I was diagnosed out of the blue, by a gynaecologist, 21 yrs ago, with Chronic lymphocytic leukaemia (CLL) , and I have always been on watch and wait (active monitoring).
I was 53 yrs old, similar to you, and my first half century had been really healthy.
I was really in shock for a long time, and I have odd lymph nodes, fatigue etc.
I am wondering if your GP knows how anxious you are the impact on your life and if they could offer you any help.
You could consider talking therapy privately via BACP/UKCP or through your hospital or a charity like Macmillan.
I am also a great walker, the ideal occupation for a nosey person, and I walk 50 miles a week too. I am also a Pilates girl.
The opportunity my diagnosis has given me that I have looked at my life and what I want to do and with whom.
I reckon the best things in life are free like good family, friends, music, nature etc.
My 70th birthday was my best ever and I have just learnt to say ‘No’.
I still like to learn something new every day.
Yes, I do have aches and pains, but not around my lymph nodes.
If I do get aches, pains, lumps or bumps I always think that it is my Chronic lymphocytic leukaemia (CLL), but sometimes it might be something unconnected.
Be really kind to yourself I still get anxious before or during tests and appointments.
The Blood Cancer UK support line is there for you on 0808 2080 888
The Blood Cancer UK website gives some details on mind and emotions
Blood cancer: mind and emotions | Blood Cancer UK
Please do keep posting as I look forward to hearing more about you and take lots of care
Hi @BDavies
I too have Chronic lymphocytic leukaemia (CLL) like you snd @Erica and was diagnosed in September 2023 at age 54
I understand your anxiety and go through periods of feeling anxious and low in mood since my diagnosis
I have strange aches and pains and often feel that they’re around my lymph nodes…… I do have d enlarged ones in my neck armpit and a small one in my groin but also get pain around the back of my neck , top of my thighs etc.
My care team are similar and aren’t worried at the moment. From being on here I realise we are all very different and although we have similar symptoms , these move at very individual rates and we experience Chronic lymphocytic leukaemia (CLL) very differently. I try to keep really positive and get some gentle exercise and do things that bring me a little joy each day
I find the people on here really helpful and understanding so please keep us updated!
Take care
Thank you Erica for you kind response. I am getting some support from the GP re my anxiety which I hope will start to help soon. I would just like to get onto a even keel and be able to get on with normal things as best as I can. Many thanks.
Thank you for your message, its really helps. It is interesting to know you experince some of the same symptoms as me. Best wishes
Stay in touch, be good to hear how you are getting on
Best wishes
Oh @BDavies so glad you have had the courage to ask for help with your anxiety.
That and posting honestly on here show your determination to get on a more even keel, we all have our natural ups and downs though.
Be very kind to yourself and don’t forget that the Blood Cancer UK support line is also there for you on 0808 2080 888 and please do let us know how you are doing.