Disturbed sleep

[Tomsgranny]

I’m new here, diagnosed with PV JAK2 last May. I wondered if anyone else has night time headaches and sore toes (erythromelalgia) on a regular basis? I’ve had a CT scan of my head - all OK, and tried aspirin, but no improvement. I wake in the early hours most nights, and the headache and sore toes only go if I get up and move around.

[Mazcd Partner MPNVoice]

Hi Tomsgranny, sorry to hear you are having nightly headaches and sore toes, not very nice to have this and to be having disturbed sleep. Have you discussed this with your haematologist, haematology specialist nurse or even your GP, they may be able to advise you on pain relief for the headaches in particular. Best wishes, Maz

[Tomsgranny in reply to Mazcd]

Hi Max

Yes, it was my haematology consultant who suggested I contact the forum as none of the usual avenues have helped. As the headaches go as soon as I get up and move around, I don’t need pain relief, I’d just like to find a way of preventing the headaches (and very painful toes) from happening in the first place!

Thanks for your reply.

[Thembe in reply to Tomsgranny]

Hi Tomsgranny, Unfortunately I have nothing positive to offer. Instead I have a questions. Could you describe your sore toes please? I'm asking because I wake up every day (and sometimes during the night) with the tips of my toes painful as though as though they have been pressed up against a hard surface all night, or squashed in too small shoes!! It's most peculiar, and when I told my haematologist, he looked at me askance. Not that I blame him, it is weird. I just wondered if your sore toe experience is similar to mine?Take care, Thembe

[Tomsgranny in reply to Thembe]

Hi Thembe Yes, that sounds just like mine - they are red and feel sore and squashed, just as you say. My specialist says it’s erythromelalgia and aspirin often helps, but unfortunately not in my case. Worth googling before you chat to your haematologist next! Good luck.

[Thembe in reply to Tomsgranny]

Thankyou, I appreciate your reply, it helps me feel less silly!

[Uzza]

I have found that Duloxetine helps a lot. My feet are just numb and stiff now.

Cheers Uz.

[wotan10]

Greetings from Fleetwood England.

I used to get leg cramps. I now use bed socks and sleep much better.

Make sure your fluid levels are well maintained.

Finally got my letter today 27th of April.

Been in self isolation since 13th March.

1walk a day 3miles round the block on Fleetwood Prom.

Better than nothing.

Keep safe, be kind and look forward to September.

[JaK2ET]

Welcome to the forum!

My feet and toes have not felt right for some time now but I can't tell how much of the problem might be related to the MPN/ET and how much to oedema ... Sometimes I feel as though I'm walking on bubblewrap - but not a nice cushiony sort, rather something much more nubbly ... I can't find the right words to describe the feeling! It is worse after walking on poor quality pavements or long hours of standing but can be there to some degree even when I am in bed or there is no pressure on my feet ...

[EleanorPV]

I had issues with headaches and leg cramps while I was being venesected. Both went when I stopped requiring venesections, due to medication. Migraleve helped my headaches due to venesections. Sorry I can't be more helpful.

[Frankie-]

Hi Tomsgranny, I’m new here. Diagnosed ET Jak 2, 10 years ago, on aspirin since, symptom free. Plts slowly risen and fairly stable, just below 1000. Haematologist started to suspect PV 2 months ago and was just waiting to have bloods repeated when, I had bad GI bleed recently. Now started 2 tablets daily Hydroxycarbamide yesterday and stopped aspirin for now as Hb so low. Started with bad headaches in an evening, prior to starting tablets. Been trying to reduce caffeine intake and wondering if that’s the reason (caffeine withdrawal headaches can be severe). Been drinking extra water for a few days so, think I’m hydrated. Going to have more caffeine today to see if caffeine is the issue. Worried about bleeding again so, I’m hoping headaches is just caffeine related. Hope you can find relief for your toes and headaches.