I am awaiting a more formal diagnosis, but my GP suspects I have RLS, I am having more blood tests to be taken to rule out other potential conditions.
I understand that symptoms can vary between sufferers and therefore I want to share what symptoms I am having and see if there is a resonance with others.
My condition is that at night I get indescribable pains, predominately in my left thigh, usually after 2 - 3 hours. This pain persists thereon for much of the night. I can relieve the pain by getting up and walking around, this generally resets the 2 – 3 hour clock. I notice, because I sleep on my side, the pain only really occurs when I sleep on my left side.
However I do not suffer every night. Some nights I have been pain free, but these are few and far between. For the life of me, I have tried to identify what I did differently on those preceding days, but cannot find anything standout.
Of recent though, the pain is also starting to affect my right side. Again when I have been laying on this side.
As mentioned above, is what I am experiencing, symptomatic of RLS?
Open to any ideas and possible non medicated help
Written by
GloucesterMan
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Some people do experience pain due to RLS which is the only symptom you mention. However pain is not the principal defining symptom of RLS and is not mentioned at all in the criteria.
Going through the criteria, the defining symptom of RLS is the "urge to move". This is not the same as needing to move to ease discomfort or adjust position, you just have to move. It can be accompanied by unpleasant sensations often described as crawly, itching, like millions of insects.etc.
This urge usually occurs when sitting or lying down. I note your pain occurs after 2 - 3 hours. I'm not clear after what? Do you mean lying down in bed? If so, do you fall asleep before it starts?
The urge is relieved by moving. Usually the relief only lasts as long as you keep moving and the relief rarely last for an hour or more.
The urge occurs at night. Your pain does this but there are other explanations for this.
I believe the answer to your problem it's not RLS.
It sounds as if it's either arthritis of your left hip, or a neuropathy, i.e. a trapped nerve.
You don't appear to have the classic urge to move. The pain occurs at night because that's when you lie down and place weight on your left hip and it will be relieved if you take the weight off.
I have degeneration of both hips. When I lie on either one it can cause pain. Luckily only mild. When I get up it fades. I also have RLS, the symptoms are completely different.
As mentioned the doctor suspects RLS but I am having blood tests to check my ferritin levels, these were taken yesterday, so hopefully I should have the results next week.
As part of my diagnosis, I had an x-ray of my hips and they have come back negative for any arthritis. I have recently (Nov 2020) had a total knee replacement to my right knee, the damage was due to a serious accident many years ago to my right leg.
I did do the 10 point test on the RLS-UK web site and scored myself 19.
Although in my initial narrative, I mention the pain being in my left side, I also do get the pain in my right side if I lay for any significant length of time, however this is much less noticeable and rarely awakens me. The pain is much more intense on the left.
I certainly do not have the other unpleasant conditions you mention, I do itch when I first lay down but this is typically in my back, not my legs and this subsides within a few minutes. And yes the pain only manifests during the night after about 2 - 3 hours of sleep. I would also catagorise the relief as "needing to move" to ease the pains.
I too thought the pain was a trapped nerve, I did ask this to the doctor, but he thinks this is less likely.
Also, over the last 10 years, we have purchased countless mattresses, thinking it was the hardness/softness of these, I have slept from one end of the spectrum of hard mattress to the other with soft mattress, none have any improvement.
My work is unfortunately sedentary, desk work. I do get some aches and pains in my legs if i sit too long, but getting up and moving around every 45 - 60 mins helps.
In terms of my health, unfortunately I am verging between overweight and obese, this being due to my pre-existing knee condition meant walking any significant distance was very painful and also with lockdown, outdoor activities have been lacking.
I do now try to get out and walk a mile per day as part of my knee rehab. However, hopefully with the easing of restrictions, with my new knee, I will soon be able to resume my passion for golf and get some exercising to reduce weight.
Otherwise I do have a reasonably healthy diet, don't drink too much nor smoke.
I do hope your thoughts that it may not be RLS is true, as this means there may be a chance of curing my condition if it is as simple as a trapped nerve. As I mentioned, occasionally I do have a pain free night and the joy of knowing I have had a good night's sleep is great.
Hi John, I'm glad it's not arthritis. I'd still say it's unlikely to be RLS.
My reasons for saying this is that it doesn't sound as if you have the urge to move. This urge is not the same as wanting to move to ease a pain, it's just an urge to move.
Also, that RLS symptoms occur when you relax, sit down or lie down, in any position, not necessarily in the part of the body your lying on and more quickly than you describe.
Unfortunately there is no blood test for RLS. There are tests for any underlying condition that might be causing it, e.g. anaemia, diabetes etc. However if you don't have any of these it doesn't really prove anything one way or the other.
A test for ferritin is a good idea if you DO have RLS. However it's not a diagnostic test in itself. It's done because people who DO have RLS need to have a higher level of ferritin than people who don't have it.
What you’re describing sounds more like sciatica to me, which I’ve experienced and still do. You’d think it would be something a doctor would find straightforward to diagnose. However, my sister went through a severe episode of sciatica recently and her GP said they didn’t think it was that. I told her I thought it was. Turns out I was right. Before my sciatica got so bad I needed surgery, I’d had it on and off for years but didn’t know that’s what it was. GPS seem to expect it to present in exactly the same way with everybody, but it’s just not the case.
As Manerva had said, it really doesn’t sound like RLS. Movement eases sciatica, but with RLS you can’t resist the urge to move.
There's a lot saying that PAD causes pain when you walk and only progresses to while you rest with time. However, this article seems to think it might ocur according to your description of your symptoms.
It makes sense to me – a little walking might help circulate the blood in the leg – but I'm not a medic, of course.
If you can get the stuff down and you haven't got anything that might bleed that shouldn't or are already taking blood-thinning medication, I, in my unqualified position, wouldn't think garlic should hurt you. I'm talking 3 to 5 cloves, very .preferably raw. The Koran recommends its consumption at all times; the Chinese believe it's something that belongs in the medicine box until it's needed. They say parsley helps take the smell from your breath – I don't trust that too much but do find a glass or two of wine takes away the taste (which I don't like to have for hours and hours afterwards). Vitamin C and the B vitamins at the RDA level will help digest the oily fish to provide more available nutrient.
Maybe though, the problem is just due to the extra strain put on this leg resulting from the knee problem on the other. More and more, when I go to rest on the settee in the evening after heavy exercise, the pain (not RLS related) I get in my legs makes a couple of paracetamols tempting (though) I resist the temptation. I'm not sure if it's age, overexercise (in the past), or something else.
In times past, I'd also have suggested lecithin, but though I still take it myself, the medical profession doesn't seem to keen on it. Something to make your own decision about perhaps.
Very sorry to hear of your problems. Manerva is one of the experts on this site, so if he doesn’t think your description matches the profile for RLS, it’s significant. That said, I wanted to chime in because I do have RLS, but I also have a lot of other nebulous things that happen (mostly at night) due to unknown causes. My reason for writing is that when my overall symptoms are very bad, I too can feel pain in whichever hip I’m laying on. It can be constant or throbbing, deep or more superficial feeling. I have always assumed it had to do with restricted blood flow due to the weight of my body and the fact the nerves in my lower extremities are already aggravated, making them more prone to feel pain from something that would not normally be bothersome. My neurologist diagnosed cervical myelopathy, but I don’t have faith in this diagnosis. Maybe, as iron brain suggested, it could have to do with peripheral artery disease? Or maybe spinal issues that you aren’t aware of? I hope the results of your blood tests help point you in the right direction and that you can find a solution. It’s good your knee rehab is back on track because trying to keep your body moving and functional during the day is probably one of the best natural remedies around. Best of luck to you.
Thank-you for sharing you condition. Following the comments from Manerva and Ironbrain, I have emailed back to my GP the comments including the link to Irlss.org criteria.
I am hoping that the diagnosis of RLS is incorrect as reading people's stories on this site and the constant distress it must cause is certainly something I do not relish having to bear.
I am hoping that what ever is causing my discomforts is something that can be cured, in all honesty by me making a complete lifestyle change - more exercise, diet, losing weight and generally getting myself healthy.
I will follow-up to the group once I have spoken to my GP and we decide next course of action.
Is the pain in your thigh cramp ,do you think, I get RLS when I'm tired on if I take OTC sleep tablets, but I take alcohol for it, , usually 4 measures of vodka , some times paracetamol, ...BUT.mydog suffers horrendously, from thigh cramps at night,her thighs are totally rigid,but walking releases it, she's taking gabapentin and prednisone from the vet and sleeps from midnight till 4 o'c, then we get up walk about, take her next dose and go back to sleep till 7 oc, but I'm wondering if I should suggest to the vet that she has alcohol and paracetamol ,like me...... I'm self medicated as I'm afraid of getting addicted to all the stuff doctors put you on and I'm certainly better off than my little dog
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