My legs and knees start aching just a few minutes after I lie down. Soon after the pain also gets into RLS. I’ve had RLS since at least 8th grade so I know all about RLS. It’s just hard to deal with both the pain and the RLS.
If anyone has the same problem and found answers or anything helpful, please share them.
Thanks
I have a huge amount of pain with my RLS and hot baths/showers have been a god send at times.
Massage particularly the lower back/upper buttocks has helped the aching pain in my legs but I am not sure if that was the massage or the fact the Mrs was touching the top of my buttocks and distracting me from it 
Which brings me on to distraction as a method. Since you are in bed I am going to assume that gardening or making models out of lollipop sticks might be out so, and hear me out on this, masturbation might be the next best thing. It;s been reported by many on here that orgasm can help with RLS and one way to get there is by your own personal methods which should also distract you from your pain. PLUS the endorphins released at orgasm have been found to help with pain and sleep. If you have a boyfriend/girlfriend you might be lucky enough to get them to help - if you are married, well your on your own!
Some have gotten help with acupuncture but I find it only works short term and can't be done when you need it most so isn't very feasible.
Prevention is better than cure and to that end there are a wide variety of things to try thast you will find by going through the sight. Drugs are a great boon to many but have a hell of a lot of problems so if you are lucky enough to be managing with out then I would urge you to try and continue if you can along with maybe a GF and dairy free diet.
Drug wise I take Targinact so that takes care of the pain and most of the RLS. There are many drugs that can be used some only for the RLS some work on RLS & pain but if you don't have the RLS you shouldn't have the pain. Check here for some info on drug therapies:
I urge caution with the dopamine drugs and it is VITAL that you read up abou them before starting. Again caution is needed with the opioid drugs due to misuse and again reading up before use is advised.
Non prescribed drugs that work on RLS & pain include cannabis and Kratom, both of which are used by a variety of people on here, (myself included) with some good results - obviously read well and if they are illegal in your jurisdiction then consider their use very carefully lest you end up trying to explain to the big guy bearing down on you why you don't think cell mates should have an intimate relationship!
My legs ache dreadfully at times .I bought a very long hot water bottle and find it soothing x
Hello, it's going to be difficult to follow Raff's excellent post.
I don't doubt what you're saying, but there are some key things that you're not saying which raise questions for me.
I know that some people experience pain due to RLS, I never have. I'm also aware that some other conditions mimic RLS, some underlying conditions cause "secondary" RLS and just because you have RLS doesn't mean you can't have some other condition at the same time.
Forgive me for saying this, it's not clear from what you write that you actually have RLS. One of the diagnostic criteria for RLS is that all other possible explanations are excluded.
You say you've had RLS since 8th grade, which I'm sorry, I haven't a clue what that means, but it sounds relatively young. Have you actually received a diagnosis from a qualified medical practitioner?
If so, have you ever been prescribed and taken medication and if so did it work and has now stopped working, or did it never work?
If you have received a definite diagnosis but never been prescribed medication it sounds as if you need to start. If you have been prescribed medication but it's not working, you need it reviewed.
I note you say when you lie down you start to get the pain. Then the RLS starts. It does sound as if the pain is associated with the RLS. RLS does occur at rest, so it will occur when you're lying down. However, being someone who suffers neuropathy, I sometimes get pain when I lie down. Sometimes I get RLS symptoms at the same time, however they are not connected, the only common factor is I'm lying down.
Also you say the pain gets into RLS, I'm not sure exactly what you mean by this so can't really tell if you actually have RLS rather than something else.
If you have received a definite diagnosis by a doctor who has excluded other possibilities and other co-existing conditions then you can safely ignore what I've written. I'd hate to think however that something's being missed.
I have had RLS since childhood as well. Before Drs. knew what it was (at least in Kansas and Texas. California isn’t much better as docs seem only be able to offer the “patch” v the cause/cure. It had been sporadic until this past year. Now it’s a nightly monster. Neupro patches are all I’ve found to calm the attacks but if I try to go a 2nd night without them, it’s too late and I’m back on the 40+ niteday.
Shot in the dark here, you're not taking statins are you? Cholesterol meds?
None. Also no Cholesterol meds. I just started gabapentin. Don't know how long I can take it cause I'm not going to gain a bunch of weight.
My pain that I have at night is mostly my knees. My knee replacements are both over 15 years old. My Ortho surgeon is going to do a workup to check out my knees...xrays, MRI etc. So my knees start aching really bad and then the RLS kicks in. The RLS is worse than the pain.
I've been diagnosed with RLS and been prescribed Mirapex and when that really didn't work, I was prescribed Requip. Neither of the meds really help that much. It now starts sometimes during the day when I relax, i.e....I've had to leave the PT table and then a spa pedicure because it started and I couldn't lie/sit there. I've also had it so bad that I (pardon my description) wasn't able to remain on the toilet for me to urinate. I've walked all over the house for hours because I couldn't even sit it was so bad. I found out yesterday that I have a severe vitamin D and B12 deficiency. So I'm now taking D3 (5000 mg) everyday as well as B12 shots twice a month. Otherwise, my blood work is pretty normal. I haven't tried cannabis because I take narcotics for chronic pain - hips, knees, back and neck - severe arthritis ... and my pain clinic won't allow me to try it. It's either the cannabis or the pain clinic so I'm afraid to try it and get kicked out of the pain management clinic.
I've just started on the site so I'm learning thing everyday. For instance, I've never heard of Targinact, or the Neupro. Thanks so much for all of your responses, comments, and suggestions. By the way, I live in Florida.
Hi, and thanks for more detail. I confess to being confused by your original posting which seemed to suggest that your leg pain was related to your RLS.
It's now clear that you get knee pain when you lie down and this follows from your knee surgery and more generalised arthritis. Lying down triggers the pain.
You also have RLS, which, as is diagnostic for RLS when you relax e.g. lie down.
The two aren't related, they just both get triggered by lying down.
Implications
It may be that medication you take for RLS i.e. an opiate will also relieve the pain. However, if a cause for the pain is found and treated, then it won't necessarily relieve your RLS. That is, unless the treatment is an opiate.
Really the two conditions are separate.
You might have been quite clear about this, but thanks for clarifying it for me.
Sorry, about being unclear. The more I read on this site, the more I am learning how complex RLS and it’s treatment is.
I actually also had a left hip revision a year ago. The revision was only 18 months after my hip replacement because it never healed and was super loose. I still have pain when I walk, getting up and down, bending over, etc. and I have to use a cane, unfortunately. I was supposed to be off it 6-9 months ago but it never happened. BYW, my right hip is loose also but if the surgery doesn’t help that much (like this revision), I won’t go thru that again. What for if I still have pain. (Hence the narcotics. Also, I can’t take anti-inflammatories since I had a gastric bypass in 1990’s. I’m a really young 67 y.o. and look it except when I move. It’s been so depressing. My first knee pain started when I was in my 30’s. It’s gone down from there. I’m really healthy except for my infrastructure and the RLS.
I really appreciate your and everyone else’s feedback. I’ll keep coming back to this website and keep learning how to conquer RLS!!!
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