Hi . I came on this site because although I've had CLL for 4 years I'm still on watch and wait . I get tired but only feel really ill if I overdo it or get stressed . But my main problem is that I get like tingling and restless legs feeling at night mostly and finding it impossible to sleep even if I'm exhausted . Is this the CLL - does anyone know ?
Hi Suzanna and a warm welcome to this corner of the Community although I am sorry to hear about your CLL diagnosis.
I am Mike and I help out around our various Blood Cancer groups.
I don’t have Chronic lymphocytic leukaemia (CLL) but I understand this journey rather well as I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable, slow growing but treatable type of Cutaneous T-Cell Low-Grade Non Hodgkin’s Lymphoma (NHL)……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive Peripheral T-Cell NHL was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges.
I was basically on Active Monitoring (Watch and Wait) for 14 years before I needed any full on treatments…. The first 12 years I worked taught in Further Education on a full timetable so yes it was very tiring at times…… but do-able.
Tingling and restless legs (Restless Leg Syndrome RLS) can actually be caused by not being active enough during the day….. yes it’s counterintuitive…. But the less you do during the day the more your sleep, fatigue and RLS can get effected….. Low Iron can also cause RLS and fatigue even if your general blood iron tests are normal so with asking your medical professionals about this.
You may already know this but although CLL has the word ‘Leukaemia’ in it, in Haematological terms it actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say. This is why CLL, SLL and HCL have a group on their own.
There are a number of members on the group at the moment so let’s look for them to pick up on your post.
I would also recommend you also check out Lymphoma Action.
Lymphoma Action is the main UK Lymphoma, CLL, SLL and HCL Specific Charity who have lots of good reliable information, videos…… basically all things relating to your condition....... pre, during and post treatment.
Lymphoma Action run regular Support Platforms...... I highly recommend these groups as there is nothing better than ‘talking’ with others who have walked the journey. I also volunteer for Lymphoma Action and regularly talk with folks who are living with CLL, SLL and HCL.
They also have a great Lymphoma Action Buddy Service where you can be linked up with someone who has walked the same treatment journey.
They also have a helpline on 0808 808 5555 where the team will be on hand to give you some support - open every week day from 10 till 3.
I am always around to help more, just to chat and to answer questions.
