I have heart failure and had a CRT-D device fitted in 2016. I also take several different drugs with the dosages often increased or lowered.
I have learned that as much as the drugs alongside the CRT-D device are keeping my body going, they have caused CKD.
Over the past few months I have been woken in the night by extremely painful complete leg cramps (generally left leg) which are so strong that I cannot move. I have suffered calf cramps in the past but know how to relieve those, but this is thigh and calf and feels like its extending up to my rear left cheek.
I have spoken with my GP who had some blood tests done to check if they indicated what may be causing them. Nothing unusual and all levels came back normal.
I drink plenty of water and know I am not dehydrated. I also have a healthy diet.
My GP doesnt have any answers as to what is causing it but just suggests age. He has prescribed Quinine.
The vast majority of sites online state that it cannot and has not been proved that quinine will help with leg cramps. But more worryingly is that it isnt recommended, not even by NICE, the Government or the NHS.
It also advised that anyone with CKD and/or heart failure (amongst other illnesses) shouldnt take quinine.
My GP's answer to this was that he has been prescribing it for years!
Further research has offered a sort of answer as to why I am getting these dreadfully painful cramps - that people with heart failure generally get leg cramps.
Has anyone else suffered these full leg cramps? and if so, have you managed to find a way to stop them happening?
I am becoming very fearful of going to sleep, but of course cannot actually stop myself going to sleep........
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Ktomoph_
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This happens to me, I do not have heart failure but have a number of heart related conditions. When this happens to me it is always related to hydration and physical activity. I’ve usually done more than I would on average and have neglected my hydration. I’ve found the drinks that are marketed and available in the supermarket that are claimed to replace the bodies salts and minerals lost through perspiration ( not energy drinks) allow me to manage this.
I understand from researching online that dehydration can indeed cause various muscles to cramp.
Its great that you have matched your cramps to dehydration after exercise and now know how to deal with this very painful issue.
I do drink at least 2 litres of water and generally more throughout each day so know dehydration isnt the cause.
The blood tests showed that all mineral levels and body salt levels etc were fine with nothing to indicate I needed to top up.
I read some of the other posts from people who suffer cramps and interestingly the majority of people specifically suffered leg cramps in their left leg. I will research that today to see if there is a link to heart or even brain signal interference, perhaps caused by the heart medication.
I think my concern is that apart from being offered quinine, the GPs do not offer any other form of treatment for this exceptionally painful condition.
My GP is fully aware that my other medication has caused chronic kidney disease and yet he is offering me medication which has been confirmed does cause damage to the kidney, and the Government, Nice and NHS advise against prescribing it.
Thankyou for offering a suggestion that may help. It could be that the expected levels of minerals and salts in the body do not work for everyone and perhaps my body needs more. I will give it a go.
just to say thankyou as I did do further research into cramps maybe being caused by electrolyte and mineral depletion, after your reply yesterday.It hadnt occurred to me that perhaps my electrolyte and mineral levels were absolutely fine on the day my bloods were taken.
Further research has made me aware of how the diuretics along with perspiration and lack of particular foods can deplete the electrolyte and mineral levels on a daily basis.
I bought some electrolyte sachets yesterday which you drink in a glass of water, and also added sunflower seeds to my daily diet as they contain phosphorus - low levels of phosphorus can cause severe cramps.
Last night I slept all through without being rudely awoken by the dreadful cramps!
I am doing the same today in the hope that this may be an answer even if it isnt the actual answer, and will discuss with my GP tomorrow.👍
OK - just found out that too much phosphorus is also not good for the kidneys! and sunflower seeds also contain saturated fat, so not good to eat too many either!
I have been prone to night leg cramps and a regime of exercise and particularly stretching the offending muscles greatly improves my condition: a regular stretching regime say every other day to begin with really helps and eliminates the condition, good luck.
I was suffering arm and leg muscle discomfort last year and after talking with my GP about the statin being the probable cause and further research into the pros and cons of statins on sites such as Nice we agreed I could stop taking them.
The arm and leg muscle discomfort did subside - but now you have raised this, I am now wondering perhaps the statins have altered something in my body.
Amongst the medications I take are 3 diuretics(the reason I drink so much water each day), one of which is Furosemide.
There are several articles that raise questions about furosemide and its damaging affect on the kidney.
Sometimes the thought occurs that to stay alive a little longer we have to take drugs that assist one part of our body and yet destroy other parts of our body......
Thank you for your reply. Me too I heard of long time effects of statin like risk of getting diabetes, liver inflamation, hairloss. The most common side effect is muscle pain and cramping.
If the cramps are caused by statin they should go away within 1-6 month after stopping statin. It is really not easy to find out if a daily mix of high dose medications do more harm in the long term. My experience is that the doctors tend to increase the doses or switch to stronger drugs whenever a number is out of limits which themselves are changed from time to time.
Make shure your thyroid is OK and I take vitamin D and CoQ10. I hope the best for you.
It sounds as if you too are suffering or have suffered with the cramping...are you on statins?and yes you are insightful to connect thyroid issues......
I have had a slightly under-active thyroid for years prior to heart failure diagnosis.
I was then prescribed thyroxine 25mg. Last year the dosage was doubled after blood tests showed the level had dropped again.
This year it was increased to 75mg after the last blood test.......
coincidentally matching time of first full leg cramps....
Thankyou for raising this, I hadnt given this any thought.......I will investigate to see if there is any connection today.
I'd stop taking the quinine if I were you. Honestly they have no idea. I had OHS last March and had cramps for months afterwards. they didn't get to the bottom of it but I did start to take Magnesium Taurate after a consultation with Sanjay Gupta.
thanks Tessie - was that open heart surgery? I am kind of getting used to a few of the abbreviations I havnt actually started taking the quinine because of all the negatives I have read. But will look into the magnesium taurate.
And how do you get a consultation with Sanjay Gupta? Is he the guy who makes the amazing and informative youtube videos?
I too am finding magnesium helps. I also note that if I don’t use salt on our evening meal, I’m less likely to get cramps. Like you I find them worse in my left leg.
yet another person having the bad cramps in the left leg is an interesting fact.
Yes, I have read that too much salt can cause cramps but I am perhaps lucky in that I have never particularly liked salt and do not add it to my food.
Its great that you have found a way to put a stop to your cramps. I hope to try to make a connection as to why I am getting them, and then be able to stop them happening.
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I havnt actually started taking the quinine because of all the negatives I have read. But will look into the magnesium taurate.
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