A new symptom seems to have gatecrashed my private party of symptoms! It is an unruly guest with the impudence to wake me up at night in mega pain. Does anyone else have this problem and know how to set about evicting the pest?
Best wishes to all, Jan
Yup, I’ve had it too ( tho not, touch wood, recently. ). For muscle cramps generally the advice is to get someone else to stretch out the the leg - (passive stretchng). It usually does the trick for me. But the pain level is Horrendous while it lasts. I know that when I first mentioned it on this site I got some very helpful advice on prevention. But I can’t remember what it was...
Might be worth seeing your GP. Quinine Sulphate tablets usually sorts this out.
I too get these unwelcome guests day and night-time and as you say horrendous, you recommend Quinine Sulphate. My doctor prescribed these tablets after several months I still get no relief. My husband was searching the web to find an alternative for me and came across the US site FDA who said these tablets have been banned in the US except for cases of Malaria so please be careful, they recommended two glasses of tonic water as a substitute. Apparently it is just as effective.
Does it work if you put gin with it?😂😂
I've heard about the tonic water solution from a work collegue who swears by it (not sure about the gin though) 🤔.
I can't really say that I suffer from cramp other than the very rare occasion. What works for me - but you have to react really quickly is to pull your toes towards your body. This stretches the calf nipping it in the bud so to speak. Like I say, quick reaction is key. I'm making assumptions that the cramp is in your calf?
Mary x
When I get cramp, I make sure I drink a couple of glasses of tonic water, the other thing is to make sure you are hydrated through the day, especially in warm weather, this is when the cramps will wake me from my sleep, they are not nice at all.
Jean
Hi
Sorrry to hear that pesky intruder crashed your party Beetle. It's often from insufficient potassium so they encourage us to eat bananas more often. But it must be catching as I had one this week for the first time in a year. You can pull up on your big toe when it happens which works for me. Good luck!
Katie
Hi Jan
I sympathise - not a nice way to be woken up! Before diagnosis I was woken regularly through the night by really painful cramps but since starting Hydroxy the problem has almost vanished.
Hope you can find something that works for you
Margaret
Hi, I to have the unwanted guest, arrives any time day or night. Occurs more often if I'm cold. Consultant said it's the bad circulation.
Hi Jan. Its awful isn't it? First of all I would say water and plenty of it throughout the day. Secondly , I also agree with the tonic water. I love tonic water on its own and of course, as with everything else, I never know if its that helping or not. Good luck . Lesley x
Thank you all for all the suggestions. Dr Google suggests it's a circulation problem too. I eat bananas almost every day but I think I'll invest in some tonic water. I stopped my multivitamin and mineral tablet as it had iron in it. The cramp in my calf seems to ease when I put my foot on the ground but when it comes under my foot it is very difficult to shift. Hey ho!
Best wishes and keep well everyone, Jan
I have always suffered a bit from cramp, but since my ET it is much worse. Quinine sulphate, Crampex, Tonic Water, potassium have no real effect. I just have to get up and walk about. My haemo has even recommended that I eat a bag of salted crisps before I go to bed, which may have some effect.
Mainly in calves, but trying to pull toes up, gives me cramp in foot!
Any fresh ideas would be welcome
Just learned to live with it.
When I was much younger I was a scuba diver and eventually had to give it up because I got cramp every time I put flippers on. My brother served in the navy and told me of a pro diver who had to quit for the same reason. He was told to increase salt too. Then they tell you to cut down on salt to lower blood pressure! It's just another devil you do/devil you don't.
Happens to me too. For me the key is good hydration and then if it does occur to stretch like everyone else has suggested. I had thought about trying wine at night..anyone tried that? I might be willing to be the guinea pig!!
I have PV JAK2. I also get cramps in my feet and legs. The most painful ones occur near my ribs on each side of my body. I have to hold my arms over my head and stretch for relief. This especially occurs for a few days after a phlebotomy treatment. I take Hydrea so no alcohol or nsaids allowed.
I get leg and foot cramps at night only. During the day I will occasionally get cramps in my hands and fingers. Last weekend it happened when dining out in a restraunt - I couldn't release my fork, the worst I've experienced and quite embarrassing! Read it could be low potassium or magnesium levels.
Did I tell you about my broken sleep ?? Cramp ,, just got to the bit where I was getting that big silver trophy at best in show ..woke up ..
Tooth Extraction 🥴
PV - need medical codes for allele burden test
Start of my Stem Cell Journey 0.3
New Patient with ET for 18 years but developed some odd symptoms! 
