Leg pain at night

[mjn500]

Hi, all - I'm newly diagnosed with ET, JAK2+, this week. It started when I went to the GP last year due to pains I get in my calves and ankles at night, that wake me. If I get up and move around briefly the pain stops - it feels like blood pooling in my calves. Has anyone else had this, and if so, what treatment has helped? I'm so tired all the time from disturbed sleep!

Thanks,

Mel.

[Jlah]

Hi Mel. Same diagnosis but I don’t have this symptom but can sympathise with the disturbed sleep. Hope you find a treatment for it. Jacquie

[Cja1956]

I get that too, sometimes. Sometimes I think it’s due to dehydration and lack of certain vitamins. Staying hydrated is really important. See if that helps.

[mjn500 in reply to Cja1956]

Thanks. I drink a fair amount of water and take a one-a-day vitamin and minerals tablet at night as it seems to keep cramp away. I've been started on low dose aspirin so hoping that might help.

[mhos61]

Hi Mel,

I can’t help with your question, but I would like to welcome you to our friendly forum.

As you have mentioned, and I agree, there is a good chance that the aspirin may help.

Mary

[MAXimus123]

Hi

I have experienced the same problem. I take vitamin D, drink loads of water and spray magnesium oil onto the back of the legs before bed.

I also find stretching exercises also help.

[jellibet]

Hi.So sorry that you are in pain.I use to have 'bone pain' at night which disturbed my sleep.Clarityn helps .I know that it is an antihistamine but for some strange reason eases the pain.I also take 2-4 drops of cbd oil daily under my tongue.It helps manage the pain and gives me energy .

[Camelian]

I have the same diagnosis and symptoms in fact my diagnosis started from going to the doctor's with leg pain. After being diagnosed I started on aspirin and started drinking water and the leg pain did ease I now get bouts of pain and it moves around from place to place? I also get burning sensations in varies places which also moves around. I was told I am vitamin D deficient so I now take a supplement. I am working myself up to trying cbd oil so I was interested to read the above post about it helping. I am in a lot of pain with my neck and shoulder and the top of my arm 😥I'm not sure if it's related to ET or the way I sleep but it's blooming painful. It's hard to know if the ailments we experience are related to our condition ?? I get headaches and brain fog but it appears to be on a cycle so I've sort of attributed it to menopause and before that PMS My mum had similar aliments to what I'm experiencing and as far as I'm aware she didn't have ET???? I also experience bouts of dizziness, again dont know if it's related and it appears neither does the heomotologist . Hope the aspirin improves your leg pain maybe discuss it further with your heomotologist or gp. Good luck.

[Hildrethbird]

I had this too, and put the tight socks on that they gave me in hospital, overnight and my legs felt sooooooooooooooo much better !! You know, the ones you use on long flights. I was surprised what a difference it made xx

[mjn500 in reply to Hildrethbird]

I was thinking about trying those but I find they make me uncomfortably hot - and then I can't sleep!

[Hildrethbird in reply to mjn500]

I found them hot and uncomfortable, but I only used them for 3 nights and the weight in my legs was so relieved .... at least try it once xx

[Hidden]

Hi mjn500

I was getting restless legs at night in bed. Stopped me getting to sleep! Started taking magnesium tablets purchased from the supermarket Swisse brand and upped the water consumption at night and it has stopped almost instantly . I noticed someone else mentioned magnesium as well. I am on keto so low magnesium is a risk anyway.

Might be worth a try.

Regards

Guy

[Jackybuckley]

Waiting for results of bmb taken this week for et was diagnosed 4weeks ago I have had really achy legs since I don't know when of a night causing lack of sleep wondering if this is a symptom of mpd/et?

or not as I

[JenngeetingR828]

Hi there - crazy to read everyone having similar symptoms as these were some my biggest challenges. The leg pain used to get so bad that I could barely let them hang down and needed to always try and prop them up. I started on Hydroxy last September and the pain started to decrease significantly. Another trick I use is elevating my legs and using a heating pad... nightly! It really helps!

[lavender007]

Hi there,

I was diagnosed with erythromelalgia early on aspirin commenced along with my warfain, Dr also asked me to wear travel (compression) socks it helps.

good luck

Lav007