Although undiagnosed (saw a GP in my early 20s and she felt it wasn't RLS because its in my hips and because it doesn't impact my sleep - not things that rule out diagnosis as far as I am aware) I am certain I've suffered with RLS since my mid-teens.
Its gradually worsened and am currently at a stage where it causes me great discomfort and at times distress several evenings a week, and my OH reports that I kick out as I'm falling asleep most nights. Typically it begins later in the evening while relaxing on the sofa and will continue until bedtime. I find lying down helps as I can stretch, move and adjust more easily and I believe I am fortunate that currently I am able to sleep through the kicking that apparently happens almost every night.
I'm reaching a point where its becoming more distressing and impacting my ability to relax and enjoy my evenings. It's also happening more often in the day/earlier if I'm more tired than usual.
In the past I've read a number of reports regarding medication either making it worse or ultimately stopping working. This really worries me and has put me off going back to the GP - I'm only 32 so if this is true I worry that by starting treatment now, further down the line treatment won't work AND my RLS symptoms will worsen.
I find myself feeling really stuck and alone, even though my sister also suffers. It's one of those things that mainly surfaces when you're home, bit too late to call family (sis has kids) and when professional services are all shut. My OH is sympathetic but has no idea how tortuous and unrelenting it really is.
I'd be really interest to hear from anyone with similar experiences who has perhaps sought treatment and am particularly interested in hearing at what point others have sought help if they've previously had lesser symptoms that seemed more manageable.
Thanks and look forward to hearing from you
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Kha0sDreams
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Well, first of all, it does sound like RLS. RLS can happen in almost any part of the body, arms, legs, hips, neck, etc. So, that idea of your doctor's that it cannot be RLS if it is in your hips, is not correct. It really should be called Restless Body Syndrome. Also, in any support group or forum, the majority of the posts will be from the people who are having problems, we do not hear the success stories so much. People post when they need help or advice. As far as meds go, it is all trial and error. I was diagnosed at the age of 29, am now 61, and after several tries, we got my meds right, and of course, we have a lot more information these days to work with. There is no one med that works for everyone, and there are several classes of meds to try. Plus, I find lots of yoga and stretching help me, as well as others. Early 30's is the average age that people start looking for help. Go to the Johns Hopkins web site and go to the RLS Quality Care Center. Also, are you in the US or the UK? This is the forum for the RLS-UK Foundation, but more than half of us are from the US here. They have a lot of good info on their web site. I tend to not recommend the US RLS Foundation for a few good reasons. The Mayo Clinic has good info on RLS, and the doctor who has been my mentor for 28 yrs since I started my first online group back then, has this web site. rlshelp.org is his web site, and the treatment page lists all classes off meds used for RLS, and other alternative treatments. Is the doctor you are seeing a GP? Even if you are sleeping, your description about being miserable in the evenings, etc, is right on the money. And, if your sister has it too, then you both most likely have the genes and they were passed down to you. Also, there are many, many over the counter meds that will make RLS worse AND some prescription meds. All that info is on the web site I gave you. Dr. Mark Buchfuhrer is his name. His latest book "Clinical Management for Restless Legs Syndrome" (2nd edition) has all the updated information on dosing, etc. I bought one for all of my doctors, and they all said it is invaluable. So, don't give up hope, and not all is negative. Like I said, we are going to hear all the bad stuff before we hear the good stuff in a support group most of the time.
Curious about your issues with the US RLS.org site. I found a good through them whose advise mirrors that in the Clinical Management monograph. What should I know that I don’t??🙃
Thanks for the detailed reply. Like you, I'm confident my symptoms match RLS but the experience with that doctor (yes, a GP) has put me off seeking further help for a long time. I'm in the UK and have now moved so have a different doctor, he's been nice when I've seen him about other things so feel like I might want to brave trying again. Unfortunately I can't afford private healthcare so have to rely on our usually wonderful but occasionally hit and miss NHS!
Have definitely experienced other meds making it worse, strong anti-histamines and over the counter sleep aids are things I avoid like the plague.
Hi! Please don't worry. Everyone's journey is vastly different. I know that it is much easier said than done, but please try not to think about the "what-ifs". Worrying about what could be is a form of torture in itself and is the worst thing you can do for yourself. If things do get worse (and God forbid they do), you'll deal with it as it comes. But they might not get worse! You have no way of knowing. There is nothing about this syndrome that is pleasant, so please try and find the one pleasant thing about it (the other side of that "what-if" that says it will not get worse). Again, I can appreciate how hard it is to do that, but please try.
Feeling totally alone in this fight is a dreadful feeling, so I'm sorry you're feeling that way.
The not impacting your sleep and the kicking as you drop off, seem to point to PLMD rather than rls. Also, it is relieved by lying down,-- definitely not rls.
So-- what exactly is bothering you? I can't get a handle on your exact symptoms.
Are you on any medications at all at present?
Hip pain can be symptomatic of many ailments. Please let us know more of your exact symptoms, and any other issues that may impinge on your situation.
I've considered this too but I'm not convinced I have PLMD, or at least not ONLY that but perhaps both RLS and PLMD.
To explain further my symptoms are -
Persistent tickling-type sensation in my hips, can be one or both
Sensation causes an overwhelming urge to move, but movements are not involuntary
Movement (standing, stretching, walking) provides some relief/can stop the sensation however it often comes back soon after I stop/relax again
Sensations are most common in the evening, but can happen earlier when I'm tired - very strong link with how fatigued/tired I am in terms of intensity of symptoms, time of onset and ability to ease them
Being in restricted seat/space also heightens symptoms. I avoid the cinema and require sedatives for log haul flights had a panic attack on the way to Australia because I was in the middle of a row of 5, everyone was asleep and my legs were going berserk but I was trapped as I didn't want to wake anyone up
To clarify what I meant by relief when lying down - I think it's closely related to how I lie and the ability to stretch out a lot more. If I lie with the affected leg fully extended, almost overstretching it, this helps. I do still get the sensations, urge to move and need to move in bed, just a bit less than when sat.
I'm a really heavy sleeper (my mum was always amazed that I slept through storms/gales!) so I think I am lucky that currently my symptoms are mild enough that I can get to sleep through them. That said my sleep quality is often poor, I wake in the night a lot and on particularly bad days I find it harder to get to sleep and have, on a few occasions, had to get up to relieve the sensations.
Not gonna lie, I'm terrible at diary keeping and more so when related to food (whole other issue!) diet is currently much better (very little to no sugar, healthy fats, no processed/artificial food, low carb) however its likely that has had some impact in the past as my diet can definitely be poor at times.
Re hip - never injured it nor do I have any pain or mobility issues. Am a regular runner (OK, I try to be and it goes in phases!!) and generally fairly active.
I have RLS and it is relived by lying down and stretching — I often wish I had a medieval rack in the basement. 😊 So when it is bad and I am tired I lie down on my stomach and hook my feet over the end of the bed and stretch the heck out of my legs. It’s movement, just not walking.
Sooo relate to this! Currently can't lie on my stomach as I've injured my shoulder and it can dislocate in odd positions (arms up/out) so haven't been able to do this for a while but that's exactly the sort of thing I do.
Nightdancer has advised you well. Read up on the website she recommends- Dr. Buchfuhrer is absolutely wonderful.
It definitely sounds like RLS and you may be taking something that makes it worse like anti histamines.
Also keep a food and drink diary- sweeteners can worsen symptoms.
Get your serum ferritin checked- and get the actual number, it needs to be above 100.
Yoga stretching definitely helps and as you’ve discovered, tiredness and stress makes it worse.
There are lots of diets and supplements that help if you want to try the alternative route.
Many people find magnesium eases their symptoms enough not to need meds. You could try that first and eliminate any possible triggers, like artificial sweeteners, chocolate, ice cream ( but everyone has different triggers so use a food diary).
Welcome to the site, read everything you can on here and ss suggested by nightdancer.
Are there hay-fever treatments that won't affect it? My RLS symptoms are worse at the moment, probably because I have to take the odd antihistamine to help with hay-fever (not sure why I've not made this connection - mega strong ones used as sleep aides have always been a no go but didn't notice the link with daily ones!) however I will happily try eyedrops/nasal sprays if these are going to be less problematic with the RLS! I shall do some more reading.
Previously had my iron levels tested but I'm unsure exactly what the results are so will also check that.
Have tried magnesium for a month in the past but it seemed to have no effect. Iron supplements helped for a long time but then stopped working entirely.
Pill form as I hadn't really considered another form or that there could be a difference in the effect. Graham has sent me a long list of things to try, including different forms of supplements that I've not tried. Just want to thank everyone for their responses, I'm feeling more hopeful about being able to find something that may help. It's also helped me to think about some things that I'm doing that may not be helping (mainly taking antihistamines more for my hay-fever!) so have a good place to start and plenty of things to try.
Thanks again everyone, glad I've found a helpful community to tap into
Interesting that you say iron helped and then stopped working.
Get your bloods done again and look at the serum ferritin level.
To get it above 100 take ferrous bisglycinate ( gentle iron) every other night just before sleep- for some reason if you take it every night your brain stops absorbing it. I use iron patches from PatchMD in the USA. They have a 40% off deal at the moment and post to the UK is $15
I’ve managed to get my serum ferritin up from 50 to 165 over the last 2 years by taking one 25mg pill and using one patch every other night. I do eat a lot of green leafy veg as well. I went vegan 4 months ago and that’s also made a massive difference. I’m on heavy meds but was still getting RLS every single night 2 or 3 times. Now, after being on the vegan diet, I only get RLS about 3 nights a week.
Definitely try supplements and increasing ferritin before you hit the meds- you may have success.
So I take both loratadine (Claratin) and Cetirizine hydrochloride (alternate between them). Need to check the links I've been sent to see if the Cetirizine could be an issue.
The iron thing really annoyed me, I honestly thought I was cured for a long time (over a year) then it seemed to just stop. I plan to go and get my iron checked, especially now I feel I've got more knowledge to push my GP to seriously consider a diagnosis despite my past experience of being told no!
Cetirizine should be fine as , like Claritin, it’s one of the newer non sedating anti histamines.
However, as everyone is different, monitor how your body reacts.
Take care
Hi, I'm not doubting the motives of the people on here giving you advice about what to do, not do and even take or not take. RLS is something that medical research has found out a lot more about in the last couple of decades. I suggest you seek an authoritative source of information. You live i the UK, see your GP and ask to be referred to a neurologist, insist. If the first GP refuses, go to another, you need to be assertive. It seems that you have RLS, you may not have, but you definitely have some neurological issue and it's affecting the quality of your life. It needs to be investigated by a specialist. I see some well meaning people on this web site, but I don't see any qualified neurologists and this is not amerika, if you're a UK citizen, you don't have to pay.
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