RLS TEMPORARY STOPPED. : Hi everyone. I... - Restless Legs Syn...

Restless Legs Syndrome

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RLS TEMPORARY STOPPED.

laviniaLavi profile image
20 Replies

Hi everyone. I’ve been also diagnosed with RLS 3 years ago but I’ve been suffering with this condition for more than 5 years. My mum suffers with the same condition so it seems to have inherited that for her. My doctors has not prescribed me with any medication to control the symptoms. He said the medication are too strong also have side effects and he’ll avoid prescribing them for now as I am a bit young for them. I don’t know what negative impact they have as I never took any.

However, after having blood test and iron deficiency was spotted, he give me 305 mg iron tablets. After taking the tablets 3 yers back the RLS kind of stopped for few weeks but kept coming back so I just had to deal with it. It is very unpleasant sensation and I cannot control my legs. I feel that urge to move my legs and start walking around to get that relief. Sometimes I feel that I have something heavy in my calves and is very uncomfortable so I have to massage my calves to temporary get a relief. It usually happens in the evening and quite often wakes me up during slip. Quite often I get the RLS during the day when sitting down and I have experienced RLS whilst driving. That scared me though.

Last night I put my long thermal socks on as my feet felt really cold and the moment I jumped in bed RLS started with my left leg. I made a spontaneous move to drop the elastic band half way my calf and straight away the RLS STOPED!

I was shocked but very exited to see if RLS comes back. It didn’t !!!!! Eventually I fell a sleep and slept all night through but my right leg wake me up I’m the morning this time. I quickly dropped the sock and positioned the elastic band again half way my calf and RLS stopped again. Wow !!!! I could not believe this ! Could this be a trick to temporary stop the RLS?

Please share if you ever did this or you are going to try this trick. I can’t wait to do this again tonight if RLS comes back which it will unfortunately.

I will keep you posted.

Take care everyone. X

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laviniaLavi
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20 Replies
Madlegs1 profile image
Madlegs1

Well done for trying that ,and letting us know.

I hope it does keep on working. 😎

laviniaLavi profile image
laviniaLavi in reply toMadlegs1

Many thanks ! Hope it’ll work again because I’m beginning to get very stressed about it and it really affect me. X

Joolsg profile image
Joolsg in reply tolaviniaLavi

Totally understand that - stress can make RLS worse.

You should get your bloods checked again. If taking iron helped in the past, you are probably one of the 50% of sufferers who will benefit from raising serum ferritin above 100 and serum iron above 60. Your mum should also get full blood count test as she may benefit as well.

Read everything you can about iron and RLS on here and on the US RLS organisation site.

It can take a few months to raise levels by taking oral supplements.

laviniaLavi profile image
laviniaLavi in reply toJoolsg

Thank you so so much for the information and advice. Really appreciate it. It really makes me feel better sharing with people that knows how is like to live with RLS.

I’m on my iron tablets again for about a week. I should wait and see if RLS improves after few months.

Thanks again

Joolsg profile image
Joolsg in reply tolaviniaLavi

Get hold of ferrous bisglycinate ( comes as pills and skin patches from PatchMD). Take every other night. Studies have shown iron is absorbed faster this way. It seems counter intuitive but it does work better.

Good luck.

laviniaLavi profile image
laviniaLavi in reply toJoolsg

That’s very kind of you to suggest that. I will look forward to try. Thanks a lot!

A further suggestion might that to some extent your RLS may be related to the circulation in your lower leg. If your socks are elasticated, moving them up and down will make the sock tighter or looser.

You could try using compression stockings or travel socks. Some people find this helpful.

laviniaLavi profile image
laviniaLavi in reply to

I was actually thinking to order some compression stockings since I had that experience last night. I will try to see how it goes. Thank you for your advice.

Pippins2 profile image
Pippins2

Are the socks tight especially around the top? Did they get tighter or looser when you placed them halfway down your calf? Just trying to get the picture .Hope it continous to work x

laviniaLavi profile image
laviniaLavi in reply toPippins2

Yes the socks are not very tight is only the elastic band at the top that’s little bit tighter. The RLS muscle spasms are located right in the middle of the calf between ankle and knee . So I placed the elastic band right were I felt the muscle spasm. Hope that make sense. English is my second language and I’m trying to explain as best as I can ☺️

Pippins2 profile image
Pippins2 in reply tolaviniaLavi

Hi thankyou for your reply. I wouldn't have guessed that English was your second language it is excellent! Unfortunately my RLS symptoms cover a larger area -full length of legs and sometimes my left foot and arm so I wouldn't be suitable to try this out. I used to do something similar when my foot was bad -sometimes I would put lots of elastic bands around it but I needed them really, really tight and lots of them and felt like I was cutting off my circulation, ha ha! .

My medications help me the vast majority of the time just last couple of nightRLS has been bad. Tiredness is a big trigger for me so in a vicious circle.

Hope your good nights continue

Pipps x

laviniaLavi profile image
laviniaLavi in reply toPippins2

Hi Pipps. Thank you ! It’s very sweet of you to say that. I’m trying my best . I guess I’m to critical with myself :))

My RLS is located in the same place which is the calves but sometimes I feel it as well I’m my arms. So annoying .

Like you said tiredness have a big impact and also the stress.

It is really weird how RLS is mild or none at all when I’m off work for school holidays and I soon as I’m back to work, the nightmares starts.

Take a good care of yourself and have a rest as much as you can.

Lavinia x

Oldcolner profile image
Oldcolner

That’s very interesting Lavinia and it suggests there is a local component to RLS as moving your sock will have no effect on dopamine or brain activity.

As cramps are locally developed muscle contractions caused by electrolyte imbalance

Could levels on potassium and magnesium in the nerve and muscle cells of the limbs affected causing nerve sensation symptoms and muscle movements. These are both mostly found inside cells rather than in the blood. It’s not easy to find out cell levels of these ions.

Blood levels of both can be normal even though levels inside cells are low. Most people don’t take enough of these in their diets. The two are linked as low magnesium levels lead to excretion of potassium. Potassium stops nerve stimulating impulses caused by sodium whilst magnesium stops calcium induced muscle contractions.

Some people claim benefit from one or other and a published study in Bangladesh found 68 RLS sufferers were cured after 45 days (many earlier) by potassium citrate.

Pregnant women often get RLS in later stages, this is a time when the baby is growing rapidly and many cells are needed. So more intracellular ions like potassium and magnesium are needed to do that. To create these cells means mothers body stores may be depleted where intake is insufficient.

I’m surprised no one has followed up the Bangladesh paper but doubt big pharma has any incentive to do that unlike high cost brain acting drug studies.

A few people have noted RLS benefits from medicines that contain magnesium or potassium as supposedly inactive ingredients eg potassium penicillin

If your diet is low in these then conventional supplements have low levels of these ions, much lower than the Study, so don’t expect cures in 45 days. potassium in large amounts is dangerous especially in heart or renal conditions so a doctors supervision would be essential to access and use it safely.

Magnesium isn’t easily absorbed from the gut and some forms have low absorption rates, magnesium citrate is used to empty the bowel before surgery,

laviniaLavi profile image
laviniaLavi in reply toOldcolner

Very well explained . I’ve learned something new today and I’ll bring that up when I see my GP. Thanks a lot for taking your time to reply.

Oldcolner profile image
Oldcolner

It’s mostly out of my head as an ex pharmacist retiree with time on their hands and a friend whose suffering and jerking I recently saw first hand for the first time after knowing him many years. I remembered my painful cramps which I took salt for and wondered if lack of other ions could affect nerves or muscles.

Yes I did look on google for refreshers of my physiology lectures 55 years ago on intracellular ions and to see what was out there from patient blogs hence I’m here.

The Bangladesh potassium study came from that. Sadly it’s badly written and not well explained or documented, but the results were amazing. The dose was quite high and chosen because a patient with RLS had cystitis and given pot citrate sustained release tablets to help only to find it cured the RLS.

I suspect similar local intracellular ion problems could also occur in other diseases with similar symptoms and found two Parkinsons patients whose symptoms apparently resolved while on antibiotics - penicillin V potassium.

It’s worth making sure one has adequate intakes of both ions in the diet or from supplements if only to rule them out.

Oldcolner profile image
Oldcolner

Bodziu

This doesn’t sound like a placebo effect as it was reproducible by moving the band. The placebo effect is a brain issue.

Have you ever had pins and needles from trapping a nerve?

Maybe Lavinia has hit a spot where a nerve is trapped by the elastic band.

This looks a possible candidate though I am no neurologist and this is from google!! My bold

physio-pedia.com/Common_Per...

Superficial branch runs in and supplies the muscles of the lateral (peroneal) compartment of the leg.

In addition it supplies the skin over the lateral lower two-thirds of the leg and the whole of the dorsum of the foot.

The common peroneal nerve is in a particularly vulnerable position as it winds around the neck of the fibula. It may be damaged at this site by

Trauma or injury to the knee

Fracture of the fibula

Use of a tight plaster cast of the lower leg

Crossing the legs regularly

Regularly wearing high boots

Pressure to the knee from positions during deep sleep or coma

Injury during knee surgery or from being placed in an awkward position during anesthesia

Knee dislocations ( 33% chance of nerve damage)

Lavinia will need to be careful not to cause permanent damage to the nerve if this is what she is doing over a long period of time.

If this is what she is doing then it shows more evidence of a local effect and a possible nerve causing her problem.

laviniaLavi profile image
laviniaLavi in reply toOldcolner

I’ve just experienced again RLS and quickly put the socks on and placed the band in the same spot. I must say that kicking wasn’t that often but the uncomfortable sensation was constant for the past 2 hrs. That sensation gone 20 min max after.

It’s a second time I’m doing this but if that’s going to have a negative impact on my health, I will stop and go back to the GP for some advice.

Thanks a lot

Oldcolner profile image
Oldcolner in reply tolaviniaLavi

If the symptoms of RLS disappear immediately that sounds like cause and effect. If you leave it on for a long time that might be problematic , if the benefit stays if you take it off quickly after stopping the RLS then that may be ok. It is worth checking with your GP in any event.

The danger of trapping the nerve and falling asleep for hours is one I would be wary of.

laviniaLavi profile image
laviniaLavi in reply toOldcolner

Yes I have trapped nerve on my right thigh . It’s located above the knee and it’s an area of 15 cm where I feel the numbness. Also sometimes when walk or exercise I feel like an electric shock, is like nerve or vain stretches that gives me that electric shock.

Oldcolner profile image
Oldcolner

Lavinia

You’re welcome, though some of it is my speculation putting together some pieces of the jigsaw, that seem to fit my thinking. There may be a few pieces that don’t, however dietary changes and modest supplementation should not be harmful.

The Bangladesh study used slow release tablets not available in the uK and doctors are wary of risks of potassium overdose. Having said that I used to issue lots of bottles of pot citrate mixture for cystitis which has to be taken slowly and very well diluted in water in the 60s!!

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