I have had RLS for more years than I can remember, but in the last 10 or so years I have had increasingly bad aches in my legs, which has now reached the stage where walking any distance further than 50yards is difficult, more so after a bad RLS night, but marginally better if I have had a reasonable night.
I have miold arthritis, slight scholiosis, and wear and tear in my back, as revealed with scans. However, am at a loss to explain the aching, which is not due to veins or bones, as these have been checked. I have not heard anyone else remarking about this though, so please let me know it it seems familiar to you. Many thanks.
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madfol
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Hi Madfol, I have suffered like you for many years with Rls and as I get more mature in years my right leg is the one most affected by aches and pains where by the end of the day I am dragging it around. I have just invested in a 3 wheeled walker to make life easier. I find it helps take the pressure off. Cheers Jimeka
Hi Madfol. I suffer like you with quite severe pains in my legs and feet in connection with RLS, which has gotten much worse since I reached my 70ties. Although medication ( ropinirole and tramadol ) help to settle down the RLS, the pain in legs and feet brings me to tears too often. Standing for too long, walking on hard surfaces in stores etc., can have serious consequences later. My legs can be fine while I'm still up walking about, the feet at the end of day screem with pain, and lying down trying to relax often becomes very very difficult. Until the ropinirole kicks in to settle the RLS, lying down is impossible. And my legs and feet are so painful, I often don't know what to do. Right now everything seems much more difficult because my husband is dying of cancer and takes a lot of care. He is bed-ridden, only gets up to walk about once or twice a day. He hardly eats anything, drinks very little, making it difficult to find things for him to enjoy. As you may guess, I have to be on my feet more than usual and be "allert and cheerful" during the days. Trying to get some rest during this time is very difficult.
The combination of severe RLS, pain down through the legs into the feet, makes lying down for a rest or trying to sleep at night nearly impossible. I try everything I can think of. Cabbage leaves along the lower back ( most helpful! ), Arnica cream or other ointments about the legs and feet. It takes at least an hour to get some relief from ropinirole and other things I try.
I call the pain from RLS a "baring-down" pain, similar to mild contractions during childbirths. In my case it gets worse due to severe osteo-arthritis in the lower back and varicose veins.
Otherwise one 'looks fine', making it hard for people understand the pain that goes on under the surface. At times I wish I could go and live in a cabin by myself, be as miserable as I feel like, and then go into the woods and scream about until everything settles down again.
This condition is so hard to deal with, putting it mildly, because there is not enough help and support and understanding as to the severity of the problem. Doctors simply do not know how to treat it and have trouble taking it very serious. I had to "educate" our doctor along the way. At first he didn't have a clue. I needed to ask for the dopamine medication, had to fight for understanding when the first one stopped working and the second one went into augmentation after taking too many when the RLS got intolerable after hip-surgery. The doctor actually refused to change medication at first. ( I had to get a doctor's help from California. I wrote about my problem, got a typed answer back very quickly, then took the printed letter to my doctor. That helped!! ) Too bad we all have to suffer so much with this awful disease, at the same time not taken too seriously! At the moment I wish for some strong enough painkillers to take away the pain in my legs! I do sometimes wynd elastic 'bands' around the legs, which helps a bit. When there's cabbage in the fridge, I plaster the leaves around my legs and feet, supported by the bands. Alot of work! Quite often worse it!
Most importantly, put cabbage leaves along the lower back. Just stick them inside your underwear. Cut out the core of the cabbage (obviously ), then peel of the leaves individully.
I learned this from a homeopathis doctor trained in Zurich in one of the large alternative medecin hospitals. They were trained to use cabbage leaves, or leaves crushed with rolling pin to sooth arthritis patients. Sometime wynding the smaller leaves around patients fingers.
I don't know if it is okay to write such long letters! Perhaps I got a little carried awy! After reading the letter from Madfol, something in me needed to respond.----This forum has helped me so much, I don't know where I would be without it. I was one of the first to get on this forum ( I believe) , at least one of the first one-hundreds, and have folled it every day since.
I call it a huge blessing for me, most likely for many hundreds who suffer likewise with RLS.
Thank you " Health Unlocked" for the huge contribution of support and help you have given us hundreds of sufferes! It really is amazing! A thousand thanks!--- as the Danes say.
Of course it is ok to write a long post. I found it interesting. In fact it gives a good insight into how you have unfortunately suffered but had the courage to stand your ground with the doctor and educate him along your journey. By doing this you may well have helped other sufferers who have seen this doctor since. I am sorry to hear about your husband. You do indeed have much going on in your life. I was on the RLS-UK forum before we went over to this one. I say a thousand thanks to RLS-UK too because that is where I first went to gather information and first joined the forum there. In fact there were a few of us that went over together to this forum in the beginning and we are still here!
I like what the Danes say - a thousand thanks.
Kaarina
in reply to
I think that it's all in the way that you describe your rls. Doctors listen for the words "Legs need to keep moving" and only then the light bulb might go off but they are dealing with so many leg vein and artery problems, neuropathy...so no wonder they aren't getting what RLS is all about.. You need to go into the doctor all armed so you can ask questions but more importantly - you can teach the doctor.. get familar with the words that the community uses...and description words - so the doctor will remember what the sales rep told him about the newer drugs..that's where doctors get a lot of their information - straight from whatever the sales person tells them..
Hi madfol. I too have suffered from RLS for 68 years. Only in the last 20 years or so it became unbearable.
I take ropinarole. I am ok as long as I keep moving. I do not get muscle pain with RLS. I do have arthritic knees and hips but that is a different kind of pain. I don't get PAIN with RLS just the urge to keep moving to stop my legs from involuntary leaping about. best wishes.
I get pain with my RLS, but only when my meds are not working or have worn off. It feels like muscle pain or bone pain but i know its not.
I was one of the first to get over here to this forum from the RLS-UK's discontinued support group. In fact The Chair had to guide me to get signed on as it was all so strange back then. There are a few of us who were here at the beginning and are still here as Kaarina has said. Bambrick i am so sorry to hear not only of your own suffering and finding a way to cope, but also to hear of your husbands illness. You can rant away all you like, someone will be here to listen, support is very important when we need it.
Interesting to know that others have the same problem, which I haven't heard anyone mention before.
I just know that if I have a bad time with RLS I will pay for it later with the constant aching. Actually I have also found that if I injure my leg (s) in any way, say catching my toe or knocking my shins, or even have an itching somewhere, than sure enough the RLS will kick in shortly afterwards!
It took me a long time to distinguish the ache from the actual RLS, but they are definitely different pain sensations, and this only began when the RLS became very bad. Presumably there are painkillers which I could take, specifically for the ache, but I try to only use Paracetamol, (sometimes alongside coedine if the pain is really bad), but it would only add to my problems to become addicted to a particular painkiller, so I struggle on!
By the way, I am in London, UK, would love to know where some of my corespondents are, having noted that someone hails from California!
Best Wishes and Thanks to All
I have mentioned before on here somewhere....that i get pain with my RLS, its not a separate pain, its RLS pain. I get a deep ache in my calf. I used to just get the tingling, creeping type of sensations, but it changed a few years ago, to the deep ache and sometimes a buzzing feeling. You can take painkillers without becoming addicted to them. I take a low dose of Tramadol, its 37.5mg Tramadol / 325mg paracetamol + one Pramipexole. Altho that is working most of the time, i am having major sweats during the day and night from the Tramadol, in this UK heat, its not nice at the moment. I live on the south coast of the UK.
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I found it interesting. In fact it gives a good insight into how you have unfortunately suffered but had the courage to stand your ground with the doctor and educate him along your journey. By doing this you may well have helped other sufferers who have seen this doctor since. I am sorry to hear about your husband. You do indeed have much going on in your life. I was on the RLS-UK forum before we went over to this one. I say a thousand thanks to RLS-UK too because that is where I first went to gather information and first joined the forum there. In fact there were a few of us that went over together to this forum in the beginning and we are still here! 
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