Et leg cramps

[Irishgal12]

Anyone with et experience leg cramps like dead leg sensation pins and needles?? I am not diagnosed pending investigation but linking everything to it

[Pte82]

Deficiency of B1 (Thiamine)can cause your symptoms. Do a search for thiamine pins & needles and leg cramps. A magnesium deficiency can cause a thiamine deficiency so use a well absorbed magnesium in the amount appropriate for your weight with it. B1 works together with the other B Complex. Benfotiamine is a fat soluble thiamine that has a higher absorption than water soluble thiamine. However it should be used in tandem with water soluble thiamine Dr. Berg has informative B1 deficiency on Youtube . Please investigate each of the B vitamins to learn their roll and the best form. Be sure to talk to your health care professional before using any supplement.

[Ebot]

Hi there.

There are lots of reasons why people get leg cramps. Irritating, but rarely cause for concern.

As far as I’m aware they are not directly linked to ET or PV. Though people with those conditions may well experience them. I’ve recently had bouts of the most horrendous foot / ankle cramps. Incredibly painful but fingers crossed, haven’t had one for a few months.

There are many ‘remedies’ out there. Much of it is anecdotal so you’ll need to see what works for you. I find these bouts tend to pass. If you’re worried there might be some sinister cause then raise it with your GP.

You also mentioned in an earlier post a racing / thumping heart beat at times. Again, not really an MPN thing but could definitely be anxiety related. Which I think is a major issue for you. Again, raise it with your GP.

Anyhow glad that on the MPN front things are turning out so positive right now. Keep well.

[MaggieSylvie in reply to Ebot]

Not really an MPN thing? If I hadn't had a thumping heart I would not have been diagnosed. The GP I visited said my thumping heart could be a sign of anaemia, and I have that overlapping with thrombocytosis. Now my haematologist says it could be due to something else and to see my GP. I've had no treatment other than aspirin, so I don't see why it would go away.

[Ebot in reply to MaggieSylvie]

You’re right. It’s obviously very important to have something as serious as heart irregularities checked out. That’s why I suggested Irishgal talk to her GP particularly as she says she also has issues about managing anxiety.

In fact, it was concerns over my heart that by coincidence led to my MPN diagnosis. Heart was fine, blood counts deeply suspect! In my case, I’m sure the weird heart stuff, was stress related - resolved itself over time. It was only because there is a history of heart disease in my family that my other half insisted I got it checked out. Good move as it turned out.

[Tico in reply to Ebot]

Hi Ebot. I would get my sodium levels checked. I was suffering agonising foot cramps and did nothing about it. The nurse at my Gp's surgery sent me for routine bloods as i'd not been in the surgery for a while. Within days the Gp phoned and informed me my sodium was too low probably due down to the amount of medication I take and promptly done a prescription for yet more meds for the low sodium! Atb,tina.🤗

[Irishgal12 in reply to Tico]

Will ask for sodium test out of all tests they havent done that

[Ebot in reply to Tico]

To be honest it’s resolved itself and I think was in part due to bad stretching habits (ie complete failure to do any stretching at all 😁). I think if it was sustained over any notable period I would do something. The foot thing would catapult me out of bed and reduce me to tears so not desirable on repeat!

[Applesnpears]

Muscle cramps can be a side effect of some medications, including antidepressants. Speak to your doctor. The sodium levels in your blood may be too low.

[paintbox]

Hi, I experienced this a lot about 3 months before my diagnosis when I had a dramatic increase in platelets and suddenly had many symptoms (palpitations, breathlessness, chest pains, vision disturbance, confusion etc). I was waking nearly every night across the summer with calf cramps. Once I started aspirin and increased my water intake these stopped. I'm really conscious of staying hydrated since then and have had no reoccurances.

Best wishes.

[Ebot in reply to paintbox]

Totally agree about hydration.

[Irishgal12 in reply to Ebot]

I dont drink much water

[Ebot in reply to Irishgal12]

If you do have ET you need to ensure you’re drinking a good 1.5 to 2 litres of water a day. And if you don’t have ET then you should probably still be drinking that amount. 😁

[paintbox in reply to Ebot]

Drinking more water makes me feel alert, positive and just better generally 😁

[Ebot in reply to paintbox]

I agree. 😁 Also makes me wee a lot more. 🙁🤣

[paintbox in reply to Ebot]

That is the down side 😂

[Cja1956]

I don’t know how much water you drink, but sometimes being dehydrated can cause painful leg cramps. Mine are not like pins and needles, they are more like spasms. I’ve been drinking more water and I haven’t had them for a while.

[hunter5582]

What you are describing sounds like paresthesia. "Paresthesia is an abnormal sensation of the skin (tingling, pricking, chilling, burning, numbness) with no apparent physical cause. Paresthesia may be transient or chronic, and may have any of dozens of possible underlying causes." (Wikipedia). You will find multiple references to people with MPNs experiencing paresthesia. I used to experience it, but once the erythrocytes were under control, it is no longer an issue. Do be sure to review it with your doc.

All the best.

[Irishgal12 in reply to hunter5582]

I mentioned to haematologist he disregarded

[hunter5582]

Big sigh! Hate it when docs blow off the things that are bothersome to us. If your hematologist is not a MPN expert, many are not, then perhaps a consult with a more specialized doc is in order.

[Irishgal12 in reply to hunter5582]

Will do once if diagnosed

[Hidden]

Is there any possibility that you might have diabetes? Some of your symptoms are akin to peripheral neuropathy.