Hi does anyone know if cramps are a symptom of MF. I have had another bad night with cramp in my calf and the front of my legs which is really hard to get rid of. I only have to curl my toes under to bring on cramp in my toes. My husband said if I don't stop jumping out of bed so quickly I will give him a heart attack.
Janet
Good Morning Janet , , Yes would appear to be the answer I'm afraid unless it is a side effect of Hydrxycarbomide. . I had PMF for ten years and for many of those I used to get horrendous night cramps particularly in my calf's and feet resulting in me doing the equivalent of an Indian rain dance at 3 AM , I was just short of a feather head-dress and tomahawk. Just as well I didn't have one coz I might have chopped a leg off. Joking apart it was very painful so I empathise with you as I didnt find any 'magic sponge' solution.
I don't know what treatment you are on or how long you have had MF but from what I recall I think my cramps stopped when I started taking Ruxolitinib. Keep your fluid intake up also though drinking a glass of water prior to bed can obviously have its downside. .
Good Luck with it , , Chris
Hi Chris I am newly diagnosed with PMF and as yet not on any treatment. I am probably not going to show Stephen your reply as I think it could push him over the edge. He already thinks I've lost the plot. I will however think of your headdress and tomahawk though as it might help me through it. Thank you
Janet
Therefore Janet it narrows it down to the MF. . I don't wish to scaremonger or alarm in any way but you need to be mindful of Gout developing. I had it from an early stage and because my white cell count was off the scale at diagnosis I was put straight on HU to control my counts which worked well for many years and Allopurinol as a preventative for the gout.
When the time comes for you to take meds I hope they put you on Ruxolitinib as the drug of choice. It didn't work fully in my case but im sure it stopped my cramps, itching and fatigue. Though it can lower one or two of your counts until they get the dose right.
Hopefully that will be many years hence. . Chris
Thank you Chris your comment about gout really rings a bell though I haven't been diagnosed with that. A couple days of years ago 2 fingers on my left hand started being really painful and one Dr at the hospital said it looks like gout but tests for that and rheumatoid arthritis were negative. They are very lumpy and still painful now. I get a lot of discomfort in my toes which is on my question list for the doc. I also itch madly after a bath or shower and have done for a couple of years.
My last blood counts were acceptable levels so I wasn't put any of these symptoms down to MF until I started reading comments on here and other sites.
All these symptoms started quite a while ago and now it seems it's all coming together.
I have also heard that new reports say having Ruxolinitib early on in MF is better for you.
Has anyone else heard that?
Janet
I have cramps in my leg and foot on left side right side no problem but I had it prior to being diagnosed 3weeks ago I drink water if I wake in the night it is getting less frequent hope this helps I have now been drinking a small can of Lidl tonic water before bed for 2days and no cramp
Hi Janet, my GP told me to eat bananas each day to prevent cramps, because of low magnesium or potassium. I eat a banana each day, I think it helps, it is worth a try, Winni
Hi Winni I already eat at least 1 banana a day if I can and have taken supplements as well but the darned cramp still comes. I will mention it at my next app. My doc is going to love me, I already have a long list of questions for him. Thank you for replying.
Janet
Hi Janet, a lot of good advice on here, all worth giving a go, especially the glass of water before bed. I know it might cause a trip to the loo or two during the night but it's preferable to the cramps. I get them sometimes during the evening and a good glug of water seems to help. I take Ruxolitinib and can't praise it enough for helping a multitude of symptoms (I have post PV MF). I also take allopurinol for the gout - trust me, the pain involved with a gout attack is worse than anything I've ever experienced so get it checked so you can prevent it causing an attack! Good luck with it all. If you're up for a bit of alternative therapy, the Louise Hay affirmation book says that cramps are to do with tension and fear (understandable with our diagnosis) and the affirmation to release it is "I relax and allow my mind to be peaceful". Simply say it out loud to yourself in a mirror, whilst smiling, 4-5 times over and 3 times a day. Good luck, hope it helps! Christine
Agree Christine, , , some of my gout attacks mainly in big toes have been excruciating necessitating a pillow in the bed to lift the duvet or single cotton sheet up and rest the affected foot alongside the pillow to protect it. And walking on it is impossible, I needed my crutches to get about. Even trying to put a shoe or trainer on can be impossible. . .
Aye it's not a pleasant experience so taking a preventative is well worth it in my view. I am currently taking 300mg Allopurinol daily as I have had nasty post transplant gout which hosp have recognised as a pattern amongst folk who took Ruxolitinib prior to their transplant.
All the best to you this New Year - Chris
I've been on HU for 6 months for PV...have also found a problem with cramp....I've started spraying magnesium oil on my legs after a bath...it seems to be giving some relief.
Richard
Tonic water small can at night works for me
I have ET and take hydroxy. I suffer with terrible night cramps in my calves and thighs, so you really have my sympathy. The only thing that stops them is a daily dose of quinine sulphate.
Karen
Morning Janet,
Oh my gosh do I sympathise with you in a big way. I get horrid cramps, the worst being in the shins or the calf but they are all so painful. I keep tonic water with quinine in the fridge and also a freezer bag (the sort used to help painful joints) and stand on it - mostly that works very quickly. I do take Rux by the way and also take Allipurinol for the gout. I have deduced the cramp must be something to do with the MF. By the way, I try to exercise as before all this I used to walk 4 miles before breakfast and do at least 17,000 steps a day but now I get such lower back ache when I walk that I end up bent almost double. I try and persevere but it is really uncomfortable I think that must be a MF symptom as well. Do you or anyone else recognise this annoyance. I did mention it in passing when I was last at Guys but it seems so insignificant in the scheme of things. I do envy Paul when he talks about visiting the gym though.
All the best for the new year Janet.
Linda x
Hi lancet kisses wifr here as far as the cramps go I was told to drink sugar free tonic water it really works for me it has quinine in it to stop the cramps. You can but try it might be good for you xx
Hi I take quinine tablets at night and also I drink sugar free tonic water it I have to say I like a gin or two in it. Maybe if I had a few more the cramp wouldn't bother me as much lol! Must try it. X
Janet
I used to have horrible cramps all the time pre-ET and post-ET. I would jump out of bed all the time and still have those nasty cramps. Drink ginger ale before going to bed seems to help also magnesium needs to really help. I don't think it is a sign of progression since I have had these cramps forever like I said way before ET. They even sent me to a vascular Doctor to have it check and nothing. They also me bananas help. Mickey
Numbness and heaviness in legs
Possibly not an ET symptom but thought I would ask :)
Night sweats
Newly diagnosed sick or just a big moaner
