Needing advice about RLS (restless legs syndrome) and operations
I had arthritis in a knee and needed a total knee replacement. Thinking of my RLS, I was concerned that I they might cause problems as they always to kick when they're hot. After the operation I'd need to keep my legs under control.
I spoke to the nurse supervising my knee replacement operation explaining that a mattress topper I had keeps my legs cool and reduces the amount of kicking. I asked if they had anything that would do this, but was told that they didn't have "any" need for such an item! I then asked if I could bring my mattress topper to use after the operation but was told "health and safety" dictated that I needed to bring the topper in for examination by the electrical department, hurriedly adding that they would not be able to do so before I'd need it!
Sure enough, after the operation it emerged that I had kicked around and in doing so, "ripped the stitches out!" I'm certain that if I'd been allowed to use the topper the extra surgery could have been avoided.
Now, nearly all the consultant surgeons I've spoken with say the situation is "very complicated". Recently I've met a surgeon who does have some positive ideas. It will involve an operation, but I am worried that I'll have another kick about.
Has anyone had any similar experiences where they found a way to keep legs cool, in line with health and safety? If so, could you let me know so I can discuss how I may be able to suggest it to him, as I'm going to need my leg kept still by using a plaster cast for 3 weeks and my legs will both get hot. I'd be grateful.
Thanks
Lindy14
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Lindy14
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Hello Lindy Sorry to hear of your problems after surgery. My RLS also gives me gip if my legs get overheated. I wonder what pain control you were given after surgery. Quite often opioids are given for a few days and opioids are also prescribed for those of us with severe RLS which has not responded to other treatments. You might like to go down this track of enquiring if your surgeon would be agreeable to something like this. Do not worry about becoming dependent on this type of drug as it can be phased out when you no longer require it. I wonder what you take at present for your RLS if anything.
I am sure some of the others here will give you some answers as well in the next few hours. Take care in the meantime
I take Pramipexol 0.52mg daily, and Gabapentin at night, and also when I'm sitting down for a long period, e.g. on a long car journey, or whilst at the theatre/cinema.
I also take medication for epilepsy, but I'm wondering whether the opioids might have a bad effect with my present cocktail. Still, I can mention it to the surgeon and get his opinion as to what they use as a rule.
I'm determined to get up and do my own take on "Strictly" and I'll let you know what happens.
Lindy14
As Jelbea has suggested ask for some low dose opiates after your op. Also you could ask if they used a anti-nausea med as they usually add one in and they can make your RLS worse, the one that doesnt is Zofran. Depending on how far the plaster comes down your leg, maybe a fan blowing on them. the plaster will stop you feeling it, but if you have enough leg flesh showing and your feet, a fan might help. I use a fan all night blowing on my legs and feet as i cant have hot legs and feet at night , only when its got really cold do i tuck feet in the covers but i still have the fan on.
I'm amazed at the number of people who also have trouble with hot legs. I can relate to what you do, but I find the mattress topper works for me all night. When I first got it I'd take on holiday and could enjoy the trip, but on one occasion, my husband, who experiences my RLS said he wasn't convinced that the topper worked. So, I said I wouldn't take it on a short trip and, sure enough, my legs were going 20 to the dozen! Needless to say, he agreed that the topper did work. The neurologist I saw had been very helpful, but couldn't see how it worked to be so effective.
The one problem I have with Pramipexol is the time it takes to start working. I usually have to take it 4-5 hours before I go to bed. If I don't I'm up for several hours, but on odd occasions I can get the legs suitably cool to stop them.
Thanks Shumbah. I wouldn't wish this condition on anyone and I appreciate that my condition is not nearly as bad as some others, but, at least, knowing that I'm not alone, I can seek help from people who know. Name;ly all of you.
Hi Lindy - I'm intrigued to know more about the topper you use as both my mother and myself suffer from RLS and our legs get too hot and make our condition worse? Is it electrical, because you said that the electrical department would need to examine it to allow it to be used in the hospital? I have never heard of an electrical mattress topper. Thanks
It took a bit of doing to find the topper. I'd tried the mats that are supposed to keep cool, but given the temperature of my legs, they got too warm, in just an hour. When I went to the Ideal Home Show about 7 years ago, I chatted with several people at different places and one mentioned the idea of a mattress topper. I was convinced they were used just to keep people warm, but it sounded ideal if it could keep my legs cool.
I looked at several on line, but on closer inspection I found that most had either an automatic time span after which they switched off, or they didn't let me choose a temperature that would work for me. I'm sure you can guess the result.
However I saw one brand name Climsom. this had a mattress topper that went the length of the bed under the bottom sheet. It had a large range of temperature to use as it worked as either a cooler or a heater. When I got one it did the job, but because of the length of the topper, did feel a bit nippy under the upper body. However, I did manage to get used to this, but later I saw that they had made a smaller topper and the measurement was just right for the legs. I got one and it works a treat. BUT, I'm not sure whether they are still making them, although you may be able to get one on Ebay. I can assure you that I have no connections with Ebay!
I haven't found any others that would work as a suitable replacement if mine packs up so I'm still looking. We should contact firms that make the toppers and outline how their products could be adapted to meet our needs. But, please let me know how you and your mother get on.
Hi Lindy14, Sorry to hear that you have had so much trouble. I have had both knees replaced now. It was after the 1st one that I found my rls had stopped, due to the fact that I was given Oxycontin for the pain following the op (for 2-3 weeks). As soon as I stopped taking it, the rls returned. After seeing posts about this drug, I connected the dots and was referred to a neurologist, I was augmenting on Ropinirole at the time. He agreed I should stop the Ropinirole and start the Oxycontin (low dose and long release) 5mg in the morning and 10mg at night. My rls is now contained I'm glad to say (3 years now and long may in continue!). Hope you can find something to help you too. Best wishes.
I'll keep my fingers crossed for you. If it's any help I also take quite a mix of drugs. Methotrexate, Hydroxychloroquine, Sulfasalazine, Pregabalin, Spironolactone, Furosemide, Festerodine, Imigran, Omeprazole, so hope you can too. Good luck x
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