Pain and RLS: I have had RLS for about... - Restless Legs Syn...

Restless Legs Syndrome
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Pain and RLS

Jumpey
Jumpey

I have had RLS for about 25 years.Around 5 years ago I started to have pains in my lower legs .This would start every evening and would occur every day for a couple of weeks then I might get no symptoms for a month or so.I attributed these pains to my RLS. Recently, this pain has been present all day and has occurred more frequently. I am now wondering whether this is a conditions separate to RLS. Do other people consistently get pain with thier RLS and if so what is the pattern of this problem? I would really appreciate some feedback .Sending love to everyone during these extraordinary times .x

35 Replies
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Hidden
Hidden

Hi,

I normally don't experience pain with my RLS, but I have been havin a similar experience recently with lower leg pain. Like you, I'm not quite sure where it's coming from. I can only guess. I'm not as fit these days because the gyms aren't open, so it could be that. It could also be that the nature of my RLS is changing. I am in a medication change right now, so it could be that.Or, it could be something else entirely. I wish I knew.

I'm sorry you're having pain.

Jumpey
Jumpey in reply to Hidden

Thanks so much for your response and concern. Sounds as though you are as confused as me. I wondered whether my blood pressure med has been causing it too. I don't think it's a fitness thing with me.I have done regular moderate exercise all my adult life.I wonder if anyone else will post with a similar problem.That might throw light on this.Keep well

X

Hidden
Hidden in reply to Jumpey

Ahhh!! Are you are a calcium blocker by chance? If so, that can cause swelling in or near the ankles. Myhusband is one one and that's what the doctor said can happen.

Jumpey
Jumpey in reply to Hidden

I am

I don't get swelling with this one though.X

Hidden
Hidden in reply to Jumpey

Well dang it! Hmm....

This might be a question for your doctor.

I'm sorry. How frustrating!

Mine might be attributed to my recent medication change since I can't help but notice how the timing lines up. Nevertheless, I'll be asking my doctor about it.

Good luck! I hope we both find the answers we need!

Jumpey
Jumpey in reply to Hidden

Thanks so much.You too!x

Hidden
Hidden in reply to Jumpey

You are very welcome!😊

Thanks!

I have a lot of pain with mine when it flares up. The evening I have it my legs ache from all the moving, the day after they are sore from the previous days movement, until evening comes and it all starts again.

I am taking Targinact which contains an opioid which address the pain pretty well. There is also cannabis and kratom that can be used.

Jumpey
Jumpey in reply to raffs

That sounds exactly like my pain Raffs. It also sometimes moves to my thighs now. It's definitely got worse.Thanks for the feedback. Stay safe.x

raffs
raffs in reply to Jumpey

No problem Jumpey, any time. The pain I get is all over my legs and if the RLS is up and into my shoulders and back they ache too. I hate the pain, really really hate it, but I'd have it over that inability for the limb to be at peace, that to me is worse. Thankfully I have been lucky when it comes to GP's and am treated pretty good - I don't get as much drugs as I'd like but more than many on here seem to get and all in all it balances out well.

Jumpey
Jumpey in reply to raffs

Mmm so interesting to see you attributing all over pain to RLS.I definitely get pain in my arms when it's bad.I find it hard to choose between the pain and the agitation. I find both distressing. On balance I think you're right the constant agitation is probably more disturbing physically and mentally. I think overall I get reasonable care too.Take good care of yourself. X

I never get "pain" from my RLS, or at least, I don't think I do. I have pains from other things.

I do read that some people do get pain with RLS so your pain is possibly that. I believe they experience it as a "deep ache"

However, it is probably unwise to simply assume it is just that and if you're really concerned, it might be a good idea to see your doctor.

Alternative explanations could be - muscular pain, pain due to circulatory problems or nerve pain. Nerve pain however would be different.

Some medicines for blood pressure e.g. calcium channel blockers can make RLS worse.

Jumpey
Jumpey in reply to Manerva

This is definitely a very deep, gnawing ache which has become more persistent and for a longer duration. I am on a calcium channel blocker and have been for many years.The brand has recently been changed which is why I thought the meds may be responsible. Problem is I've exhausted the other blood pressure options. It doesn't feel like nerve pain.A gp consultation may be in order which is why I posted here to try to weigh up whether this was a deterioration of my RLS symptoms. Thanks for your reply and keep safe.x

Manerva
Manerva in reply to Jumpey

It doesn't sound like nerve pain. I think you'd best speak to a doctor.

I have only had RLS for about 6 years and throughout that time have had pain. My neurologist has insisted that pain is not associated with RLS. During subsequent investigation I have had a nerve conduction test which has shown that I have Small Fibre Neuropathy so my pain is probably caused by that. I say probably because I don’t think it is that clear. If the pain can be controlled perhaps it is just academic deciding which condition causes it.

Jumpey
Jumpey in reply to martino

I'm sorry you are suffering. Can you describe the pain?x

martino
martino in reply to Jumpey

It’s difficult as it varies. My shins particularly feel as if they have been badly sunburnt. My calves ache with a varying intensity but rarely below 2. My thighs also ache but I can get stabbing pain. My upper thighs into my buttocks hurt as though bruised so sitting can be a trial. Odd that sitting in church at sermon time is when I need to go for a walk yet smoking my pipe in my shed I am usually ok

Jumpey
Jumpey in reply to martino

Thanks. That sounds awful. I get deep aching in my calves and thighs too.Horrible.Stay safe.x

Same as me. I have pain all over my legs from thighs to knees mainly. I have had it on and off for years. It’s a very strong ache almost burning but no swelling and when I sleep on my side and one leg is on top of the other it hurts as if my legs are too boney and the flesh isn’t protecting the weight. I am not on any medication so it’s not that. I’ve had it for about 30 years and apart from a nerve conduction test which was negative my doctor says I am fit and healthy so I don’t need any more tests! I have had rsl since I was a teenager. They don’t necessarily happen together but my husband says I also have plmd so maybe I’ve had a bad night with that. Sore legs can last for days and then it suddenly goes for a day or a couple of weeks.

Jumpey
Jumpey in reply to Mum007

I'm so sorry you're having this pain.Mine too was intermittent but now is constant it seems. Warm wishes.

X

Jumpey, pain and RLS are pretty much the same thing for me. It comes as flashes of electric shock and the feeling that needles are being jabbed into me. Another sensation is as though a belt of nerves in one leg has been suddenly and violently jerked tight, pulled tighter, then snapped. I’m voluntarily cutting my Targinact from 20 to 5 because I hate how it makes me sleepy and dull. Agree about Cannabis which I now find impossible to get. Rock and hard place comes to mind. However I get by and since lockdown began have only had four days when I’ve felt shattered from minimal sleep. Good luck.

Jumpey
Jumpey in reply to rkatt

I'm so sorry you are suffering like that .It sounds awful.I do hope you can get some relief.My pain is a gnawing, deep ache.Your's sounds neurological. Good luck to you too.

X

Hidden
Hidden

My RLS began about two years ago and it was pain from the beginning, my left leg and left arm jump around and it’s the pain that forces me to move them along with the feeling of a dead leg 🙄 i’m now coming off requip As I think that has made things worse even though I’ve only been on it 2 1/2 months

Jumpey
Jumpey in reply to Hidden

Cheers for your response. It's helpful for me to know that my problem is to due with RLS.Good luck coming off the meds .I'm sorry you have so much pain.x

I too have had some horrific leg pain last year, now it is only a couple of days a week. I put it down to the metformin I was on which really exacerbated my RLS and has taken a longtime to get out of my system.

There are other drugs that can cause leg pain , perhaps see if you made any other drug changes around that time eg cholesterol meds .

Thank god for my electric blanket when it kicks it .

It will be interesting to see you comments 🙂

Jumpey
Jumpey in reply to Shumbah

Ta for ypur response. I hope you're better now. I too thought it may be my blood pressure meds.Keep well.x

Shumbah
Shumbah in reply to Jumpey

Hi Jumpey

I wonder if you post your question on the pain section what thoughts they would have .

Have you checked if there are any really rare side effects from your BP medication. It took me a while to find the metformin and acidosis and neuropathy that it can cause is rare.

When I have issues with health issues now I take a look at anything I might have changed .

Could it be something I changed or started a few months ago and it has built up in my body.

Something Manerva said

made me much more

conscious of such connections.

🙂

Jumpey
Jumpey in reply to Shumbah

Thanks.I will do that. Yes aches are rare side effects of the meds. I have stopped them to see what happens. X

When my rls first started I would have the occasional bout of all over body aches like when you have the flu. This ussually happened in the evening and the only thing that would help is sleep, even a couple of hours and the body ache would be gone. As my rls worened over the years the body ache became more common and started earlier in the day. Tramadol helps my pain rls and rls related insomnia.

Jumpey
Jumpey in reply to Stdorn

Thanks for your reply.I'm sorry things have worsened for you.They have for me too sadly.

It seems that we are not alone.Take care.x

As I read these responses from everyone I am hearing about different types of pain: pain from RLS, nerve pain, neurological pain. I have had RLS for many years but just recently started having pain in my lower legs. I saw a dr in March who is an expert in RLS who started me on several new meds for my RLS, but shortly after starting on these new meds the lower leg pain started. Before then, pain was never a part of my RLS. It is mostly in the daytime. I believe I don't get it in the evening because that is when I take all of my RLS meds. So they are probably keeping it from hurting. Unfortunately, I looked up the side effects of these new meds and leg pain isn't mentioned. My RLS dr says he doesn't think it is RLS because I am having pain and I am suffering in the daytime instead of just at night. I asked him what he thinks it might be and have yet to hear back. My question to the group is: Can you tell me the differences between the different kinds of pain; i.e., nerve pain, pain from RLS, neurological pain? Thanks everybody!

Jumpey
Jumpey in reply to LanaCSR

I can't sorry. I posted because I wasn't sure whether this is RLS or not

Keep safe.x

LanaCSR
LanaCSR in reply to Jumpey

Oh, I actually meant that question for everybody who was posting in your post about the different types of pain, not only you. For example, someone said they had nerve pain, someone said they had neurological pain, some said their pain was RLS pain. And like others were saying, well, it isn't nerve pain. So I am wondering how do you (again, not you Jumpey but whoever mentioned other types of pain) tell it is not nerve pain? What does nerve pain feel like compared to pain of RLS? How does one know what type of pain their pain is? Sorry if I confused you Jumpey.

Hi. I have incredible pain with my Rls. But only on occasion. The only way I can describe is is as if someone is pulling your big toe up through your leg. The pain makes me feel sick I cannot put my foot down flat it lasts for what seems like ages but is probably only maybe 5. More recently I have had pains at the front of my shins. I am on Ropinirole and co codamol x

Jumpey
Jumpey in reply to Sanboo

That sounds awful. Good it doesn't last long.x

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