Restless legs syndrome

I get this for a few weeks in the summer, usually when it's very warm at night. It stops me sleeping. I'll try a spoonful of marmalade next time, if I remember.
 
Hutan said:
I'm thinking now that this is a milder version of the bone crushing feeling I get in my lower legs and hands when in PEM.
Click to expand...

I don’t get RLS but chronically have something similar to this in my lower legs and feet, more of a feeling of not getting enough blood flow and oxygen down there and the resulting throbbing aches and pains. I also feel the need to stretch muscles and joints down there because it helps with the pain.
 
Last edited:
Mij said:
My sister had RLS back in 2012 when she came to visit and we tried to get to the bottom of what was causing it. She had low ferritin and was later diagnosed with Hashimoto's. She is being treated for HD, and when her iron levels were brought up to normal range her RLS went away.
Click to expand...

Exactly @Mij RLS is listed as a symptom of iron deficiency - low ferritin
 
Mij said:
My sister had RLS back in 2012 when she came to visit and we tried to get to the bottom of what was causing it. She had low ferritin and was later diagnosed with Hashimoto's. She is being treated for HD, and when her iron levels were brought up to normal range her RLS went away.
Click to expand...

Yup. Been working on my ferritin level, which was low. RLS was quite bothersome, especially later in the day. With more iron intake my RLS has lessened.

I can't recall if mainstream medicine views the cause of RLS a mystery or not. Of course ferritin is not a go-to test.
 
  • Like
Reactions: Mij
@DokaGirl

Secondary causes of restless legs syndrome and exacerbating factors should be recognized and treated
This includes managing renal impairment,2 treating serum ferritin below 50 μg/L,3 eliminating antidopaminergic drugs, addressing sleep hygiene, and reducing caffeine and alcohol intake. About two-thirds of patients resort to alternative treatments. 2 Regular physical activity and cognitive behavioural therapy may improve mood, anxiety and sleep, but require high-quality randomized controlled trials to confirm their efficacy.2

https://www.cmaj.ca/content/189/6/E245
 
I.believe my GPs response when I raised RLS was to comment lots of things might cause me to think I had RLS.

No tests, discussion, or debate as to why I'd brought it up, just lots of things might make me think I had it.

No explanation as to what any of these things might be that caused me to say I had such and such symptoms and these appeared to match with RLS.

No denial of proposal, no agreement, no testing, no questions, no suggestions as to anything to try.

I would gave been better off mentioning it to a sandwich.

At least a use can.be found for sandwiches after any discussion has occurred.

Anyone would think that my esteemed GP of several years, after extensive medical training and decades of clinical experience, didn't think RLS is real, that it only exists in the heads of patients.
 
Trish said:
I get RLS sometimes. It's usually when I'm trying to get to sleep at night. Instead of lying in bed relaxed, my legs keep needing to move about. If I focus very hard I can stop them for a short time, but the need to move overwhelms and I'm thrashing around again. It's not involuntary movement or jerking, but it's not controllable either. (and I'm decades past menopause).

I remember my mother getting it in the evenings. She'd be sitting watching TV or reading and she would get restless and end up getting up and walking around to try to cope with it.

I haven't been able to pin it down to any trigger, though I think it may happen more when I'm over tired and my temperature control feels messed up.

I noticed it flaring up recently when I started using a gaviscon equivalent liquid last thing before bed to try to reduce acid reflux and I wondered if it was related to salts imbalance (it contains sodium bicarb and calcium carb.). When I get some, I'm going to try taking magnesium at the same time to see if it helps.

I don't think I'm anaemic, though I haven't been tested for years.
Click to expand...
I think I've discovered the trigger of my irregular attacks of RLS.

One of my ME/CFS symptoms is nausea, and if it's bothering me enough to do something about it, I take a travel sickness med I discovered by chance also helps my ME nausea.

A couple of years ago I had some increased problems including bouts of vomiting and the GP prescribed a different anti-nausea med. I took one dose and shortly after started my worst bout of RLS ever that went on for about 8 hours. It was exhausting. I looked at the drug leaflet and RLS was listed as a common side effect.

Since then I went back to the travel sickness med in small doses occasionally for nausea and started to notice a time connection with RLS. So now if I'm nauseous, I have to weigh up which will be worse, nausea or RLS.
 
Evergreen said:
Ooh, excellent detective work. Wonder might your pharmacist be willing to look into which anti-nausea meds are least likely to cause RLS?
Click to expand...
AI also has an answer, but a good human might be better!

Common Anti-Nausea Drugs Less Likely to Cause Restless Legs:
  • Ondansetron (Zofran): A serotonin (5-HT3) antagonist, commonly used for chemotherapy, radiation, and post-surgery nausea without RLS side effects.
  • Granisetron: Similar to ondansetron, this works by blocking serotonin.
  • Domperidone: A dopamine antagonist that acts primarily outside the brain, making it less likely to cause central nervous system issues like restless legs, though it requires a prescription and is used short-term.
  • Dexamethasone: A steroid commonly used for chemotherapy or post-surgical nausea.
  • Meclizine (Bonine/Dramamine Less Drowsy): Typically used for vertigo and motion sickness with less drowsiness and lower incidence of motor issues.
Medications Known to Cause/Trigger Restless Legs:
Avoid these if you are prone to RLS:
Click to expand...
 
Trish said:
I'm struck by the novel idea of having a 'your pharmacist'. I guess I could pick one at random from the local pharmacies and phone them.
Click to expand...
I'm on a fair few drugs so all the pharmacists kind of know me and my carers. And I'm very lucky to have one in my circle whom I can ask too. So yeah, ring a random one! Whoever dispensed the nausea meds or whoever is willing to talk to you.
 
Very smart, @Trish !

I did a quick search and found this charity website, RLS-UK, which has a page listing medications to avoid:

Medications To Avoid | RLS-UK | Restless Leg Syndrome

A number of medications can make RLS worse. In particular, anti-nausea drugs and sedating antihistamines can block the brain’s dopamine receptors, increasing the symptoms of restless legs. Antidepressants that increase serotonin and antipsychotic medications can also aggravate the condition.
www.rls-uk.org www.rls-uk.org

I agree that one should always talk with a doctor or pharmacist so they know your specific medical history before they prescribe something but I thought this was a good resource to share.
 
Trish said:
I'm struck by the novel idea of having a 'your pharmacist'. I guess I could pick one at random from the local pharmacies and phone them.
Click to expand...
Many GP surgeries also have their own clinical pharmacist that eg I have medication reviews and can book a phone appointment with

(Confusing as that’s a different position/option to the pharmacist in local chemist but I guess there might be certain jobs both can do or have different angles to offer. )

When I’ve for example had a medication discontinued by the factory and the alternative that was obvious didn’t suit I went round GP, clinical pharmacist and asking the ones in the chemist (different chemists use different suppliers hence why the variety not just the one I got my repeated prescriptions from at that time) on what else might do the job that I can get hold of.

I think (these things change all the time due to initiatives etc) my old local chemist at least had a phase where you could ring to book a Consultation with their pharmacist (which I think I used when I’d overdone the heat pads one day when I could still go there) as well as the ring or ask ad hoc questions depending what it is. I must say remembering that made me remember how lovely she was and more concerned after sorting medication for that to also see if I needed something better short and long term re the pain and that what was causing the pain wasn’t being addressed and talked about her own similar illnesses and struggle to get support.

They’ve all generally been brilliant and interested so it’s also a relief as it’s often just free of all the tension bps and other stuff ‘lurking somewhere’ is responsible for in appointments with medics that aren’t the pharmacist . I find it a relief how straightforward the ones I’ve had chats or consultations with are and less a case of having to be on my guard (lest I inadvertently say something that gets misinterpreted etc - medical appointments were and still are very stressful and I prep for them to avoid making my situation worse risk etc) and just for me it’s a more adult to adult communication style I’m used to (outside medicine) ie I can do it with less wariness and when more ill , be myself without having to act a role, and therefore find it a different beast when I’m not up to dealing with what we are familiar with for GP services
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom