Painful leg cramps

[sbs_patient]

I was diagnosed with PV in 2015 and I have been on Jakafi since 2022. Lately I've been experiencing painful leg cramps at night, mostly in thigh muscles. It was suggested that I take a Mg supplement; this seemed to work for a few weeks, but now the cramps are back. Any suggestions?

[rebeccaxxx]

it could be iron deficiency, worth checking your latest blood results for this.

[sbs_patient in reply to rebeccaxxx]

Thanks for the suggestion. Wouldn't that show in hemoglobin or hematocrit? My numbers are stable and only slightly below normal.

[hunter5582 in reply to sbs_patient]

When you have PV you can be iron deficient without being anemic. It would be worth checking a full iron panel to rule this out as a potential cause. It would also be worth checking your magnesium levels. It may be that you need a higher dose. Note that these nutritional deficiencies are only two of the possible causes. There could be other causes, including medication side effects.

Your body is telling you something is wrong. While it may well be something minor, it is worth follow up. Suggest you contact your care team for a proper assessment.

[sbs_patient in reply to hunter5582]

Thanks for your reply. It happens that my Mg level was tested a week ago. The result was 2.2 mg/dl, which seems to be in the middle of the normal range, so Mg doesn't seem to be the problem. I appreciate your comments about iron in PV. I will be having a televisit with my MPN specialist next month, and I will definitely raise this issue.

A couple of side notes: (1) my 10-year PV diagnosis anniversary will come at the end of this month; (2) today is my 81st birthday.

Thanks for all of your helpful advice ever since I started following this group discussion.

Steve

[Ebot in reply to sbs_patient]

Happy Birthday from London, UK. 🥂🍾🥂

[JustKeepSw1mming in reply to sbs_patient]

Happy birthday !!

[SoledadBarcelona in reply to sbs_patient]

Do you suffer for headache, foggy mind, restlegss legs, loss of odors, etc. ? What medication and suplementation are taking? Important. Think that Mg in serum is no clear to control it, this is read blood cell magnesium test.

[sbs_patient in reply to SoledadBarcelona]

None of those things. However, my medication list is long and getting longer, and drug reactions are always a possibility. Thanks!

[summerdown in reply to rebeccaxxx]

Please see your GP. This could be a thrombosis. Although the pain is often in your calf the clot might be in your thigh. Do you take statins and aspirin. keep active. Walk through the pain. Reduce your cholestrol if it is high.

[sbs_patient in reply to summerdown]

I do take statins and aspirin, and I keep active. I will see my GP if this continues.

[Moina-vdh]

I used to have cramps in my legs, sometimes still do. In my case not drinking plentiful and being in sunny conditions can have an impact. What I find helpful is drinking a lot of water, I also have smart water or mineral water if I’m out long periods of time and it’s sunny. Bananas can also help, have one in the evening before bedtime. As others said worth mentioning to your haematologist.

[sbs_patient in reply to Moina-vdh]

I've heard that quinine, in the form of a few ounces of tonic water, may also be helpful.

[william-Indo]

Happy Birthday.Wishing you all the best

[ABPD]

Happy 81st birthday 🎂 🍰🥳 Enjoy your day!

[sbs_patient in reply to ABPD]

Thanks for all the birthday wishes!!!

[Mudmaker]

get your vitamin D checked mine was low and that was causing leg cramps.

[sbs_patient in reply to Mudmaker]

Thanks! Worth looking into.

[Paul123456]

I’ve not found a silver bullet for leg cramps. Stretching before bed definitely helps but needs to be extensive as everything connected. I’ve worked through magnesium, salt, Vit D and iron deficiencies.

[sbs_patient in reply to Paul123456]

Thanks for sharing your experiences.

[Meatloaf9]

Congratulations on the 10 yr anniversary and the 81st birthday. Please give an update on your 20 yr anniversary and 91st birthday. Best always

[sbs_patient in reply to Meatloaf9]

being 91 and reasonably healthy would be wonderful. However ....

[Meatloaf9 in reply to sbs_patient]

Post is meant to be encouragement and optimistic, you just never know, hoping we are both here to see that post. I am 75 with PV 8 years post Dx. Best to you always.

[sbs_patient in reply to Meatloaf9]

Best to you as well. I'm hoping for a few good years yet, but we have to take what comes to us. I'm also dealing with the fact that my wife passed away in December after only two months of illness. The last few months have been very difficult for me.

[Minify]

Epsom salt baths have helped me in the past with muscle cramping. Maybe it’s the MG in the Epsom salts that helps.

[havashan]

It sounds weird but taking a sip of pickle juice when you get a cramp can help. This is a remedy that was in The Washington Post health section and I use it when I get cramps at night and it works for me. It has to be done when you get a cramp, it is not proactive.

[Doxy46 in reply to havashan]

What kind of pickles? I'm wondering if sweet pickles will work.

[havashan in reply to Doxy46]

I use pickle juice from dill pickles. I don't remember whether the article specified

[sbs_patient]

Thanks! It's certainly worth a try.

[sbs_patient]

As for epsom salt baths, I gave up m,y tub when I remodeldd my bathroom a few years ago,. Thanks anyway.

[Cookiewoman]

Happy Birthday!

Lots of helpful info here but you may want to up your water. If I’m low on water I get a cramp in my right calf; if I’m really dehydrated I get a pain in my left thigh.

Good luck!

[sbs_patient in reply to Cookiewoman]

Thanks for these suggestions. I try to watch my water intake, but I never thought of matching it to the occurrence of cramps.

[nightshadow]

Low levels of calcium, potassium and dehydration are also factors in muscle cramps. There is an ointment that works for me called Theraworx, but it is magnesium based so may not work for you. I had read though that the tests for magnesium in the blood can be very inaccurate so having a topical application might be helpful. Making a routine of light stretching before bed has also been helpful for me.

[sbs_patient in reply to nightshadow]

Thanks for the suggestions. I'm watching the situation and will see what I can do.