Painful toes

[Scream-N-kick]

Hi, I have recently been diagnosed with cml, not seen a specialist yet though it’s been 6 weeks since diagnosis via my hiv specialist who has been keeping a very close eye on my blood tests and had a Leukemia test done middle of August (October now). I have so many questions that I know can’t be answered. But was wondering if anyone with Leukemia has had painful toes, I know it’s a strange question but mine are crippling at times.

[AJA1717]

I’ve had toe pain before, usually cramp. Lowering alcohol and increasing drinking water did help. I think you should press to see a specialist quickly as you need to be taking the right tablets. I’ve had cml for 19 years and am still taking the imatinib that I was originally given. It has worked fine for me

[Scream-N-kick in reply to AJA1717]

Thanks for the advice, turns out it’s nerve damage as pain one ends of toes.

I don’t drink alcohol but I still smoke.

Saw GP this morning and she is going to ask some questions about what is happening further up the line with seeing a specialist.

I’ll keep taking the painkillers when needed.

[pigeonCl-HU]

Hi SNk, not a strange question at all.

Those painful toes could be cramping, as a side effect of medication you are taking.

What drug are you taking now for CML?

You have other questions? ask away, people here might help.

ATB

pigeon.

[Scream-N-kick in reply to pigeonCl-HU]

Thanks for your response,

I saw my GP this morning and he his arranging blood tests again, more likely nerve damage as pain is on the ends of my toes. Due to a previous medical condition I still have, a viral infection in my brain.

I’ll just have to take painkillers when needed I guess

As for medication I haven’t seen anyone other than my hiv specialist and GP, thou latter is now enquiring about that so should hear something in a couple of weeks.

[pigeonCl-HU in reply to Scream-N-kick]

You know, I really don't understand why they take their time to treat your CML.

Usually one is started on one of the TKIs immediately upon diagnosis.

SNk, why don't you get in touch with the kind people at LeukamiaCARE, they have nurses that really know their stuff.

Tell them you were diagnosed CML ages ago but still waiting to see a specialist....they may steer you in the right direction to being seen asap.

Please let us know how you get on and I wish you the best.

pigeon.

[2003UK Champion]

Hi, the crippling painful toes sounds horrible, but a great big welcome to the site. We are all here to support each other not only on the medical side but also on the emotional side. The Leukaemia Care Charity helpline is open Monday - Friday 9am until 5pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444.- I have found writing down my fears, thoughts and questions ready for when I do have medical appointments and writing down the replies helps me, and a big one for me is asking that follow up question too. Take care

[Christiana_]

Nerve damage - me too and fingers.

For me it’s so much worse when weather gets cold and damp. Silk glove liners ( cheap on eBay) and cashmere mix socks are my best friends in the winter. I also swear by hot water bottles (at home/in the car), hand warmers and different levels of slippers (from think socks to the full fluffy ankle things!🤣). For me keep them warm cos warming them up is hard!!

On a brighter note I’m finding this is improving the further time since my treatments, but it’s slow progress.

[Scream-N-kick]

I’m really sorry you are going through this, just my toes but having it in fingers too must be bad.

I will look at different socks, thou I have found thicker woollen ones seem better at the moment but it’s not perfect.

Everyone has been great with their reply’s and encouragement, I’m new to being diagnosed and like everyone before me it’s a scary time.

Hope you feel ok today, best wishes.