RLS & PLMS: This is driving me mad... - Restless Legs Syn...

Restless Legs Syndrome
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RLS & PLMS

Yvette0121
Yvette0121

This is driving me mad... my partner mad. We are sleepless, tired, sick. I'm actually feeling suicidal... sounds like im.being a drama queen but when I've been lay there 5 hours dying to sleep but my body won't allow me too... keeping my poor partner awake by kicking him.... then I do fall asleep PLMS kicks in (No pun) and I feel worse as I'm sleeping but getting no bloody rest!!! Any tips.... under hospital on iorn tablets which seem to have made this worse not better. :(

27 Replies
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I know the feeling. RLS has been with me for years and have tried everything I could. The only thing that has helped me is Ibuprofen, 2 each 200 mg, taken 30min before bed. Best if taken on empty stomach. Meds quit working after15yrs. Also take magnesium calm and rub spray magnesium on calf. Don't give up, U can find something that works.

Good luck.

tryit
tryit
in reply to tryit

Yvette: I didn't list the meds in my previous post, but it was CLONAZEPAM (KLONOPIN). It worked well for RLS, but after being diagnosed with PD, it interfered with those meds.

Go to site :RLS Medications

Try a low carb diet. I first cut down on bread consumption. The gluten reduction helped my bowels as I anticipated, but I was surprised that it also helped my sleep. Then I cut out sugar (inc sweetened foods and drinks), and limited refined carbs like fried foods, and found that it eliminated my rls.

Hi Yvette. Don’t despair. Are you on any medication?? I have felt like you at times in the past and occasionally still do. I sleep every night on the couch so I don’t wake my wife and have the run of downstairs when I can’t sleep.

Medication will help but let me know if you are on any. Steve.

Yvette0121
Yvette0121
in reply to SteveT

Just iorn tablets at the mo. There's been talk of oxycontin. But have to levels up 1st xx

I feel for you Yvette. The hospital that gave you iron tablets presumably gave them to you because your ferritin levels were low. What was the actual number? Iron tablets take a long time to raise ferritin and they can cause constipation which in turn makes RLS worse.

If you are suffering constipation - buy some magnesium citrate tablets and take 2 or 3 at night- they really help both constipation and RLS. Also consider switching to gentle iron ( ferrous bisglycinate) which doesn't cause constipation. I also use an iron patch from patchMD in the USA ( they ship quickly to the UK) and the patch and tablets have raised my serum ferritin to over 200 in the course of 2 years. My RLS has improved a lot ( although tonight has been a bad one- my right leg has played up due to stress).

If ferritin levels are low, keep up the tablets but make sure you are not constipated.

Add magnesium and avoid triggers like alcohol, caffeine, sugar.

Take the hottest bath you can stand - it seems to calm the legs.

Wear compression socks at night.

Spray legs with magnesium oil and massage.

Try leg stretches and squats - muscle stores dopamine which helps RLS.

Avoid anti histamines and cough medicines and most anti depressants.

I presume your doctor has not suggested meds for RLS because your iron levels are low. In that case, getting levels up should help.

Let us know how you get on.

Yvette0121
Yvette0121
in reply to Joolsg

I was at 33 level. Then I raised it to 76. He said once iorn is up he will give me oxycontin to help? I have no idea where to start so thank you xxx

Joolsg
Joolsg
in reply to Yvette0121

33 is very low. If in Uk, go to Boots or Holland & Barrett and buy magnesium Citrate and Ferrous Bisglycinate. Take 2-3 magnesium tablets every night and the ferrous bisglycinate every other night. There is evidence that taking every other night is better as the brain absorbs it better.

Once your levels are above 100, preferably 200, you should notice an improvement.

Oxycontin definitely helps severe RLS but as yours may be caused because of low iron, it's better to see if it improves by raising levels.

You can always take paracetamol and codeine on an as needed basis until iron levels raise.

Spend an hour reading everything you can on the RLS UK site- there is some very helpful info on meds to avoid and causes.

Smiler53
Smiler53
in reply to Yvette0121

Hi Yvette0121. I got to a really desperate stage too, with exactly the same rls/plmd, severe sleep depravation. Having my knees replaced due to Rheumatoid arthritis saved me, as I was given Oxycontin for pain relief. When course was over, back hell on earth. Then just by chance came across posts by Joolsg, Pippins2, Madlegs, LotteM to name just a few (great posters) Finally got the go-ahead to be prescribed it and haven't looked back. Sleep clinic has added Pregabalin into the mix to help me sleep until I get my sleep clock retrained. Anyway, it stopped my RLS stone dead, I really hope it will for you too - just wanted to show you a little bit of hope. We all react differently to these drugs, what suits one doesn't suit another and sometimes a mixture do the trick. Wishing you all the very best. Keep us posted. xxx

Yvette, have you tried Cannabis and Kratom? They work for me in emergencies, which are frequent unfortunately. They’re illegal where I live though. Couldn’t have survived without particularly as my RLS/PLMD involves amazing pain.

SueJH1963
SueJH1963
in reply to rkatt

Kratom is legal in Massachusetts and it is very helpful, though I already take it for anxiety so it's not as useful for RLS unless I take a much larger dose. But I've heard other people comment that it is helpful. It can be taken as a tea, rolled with honey into balls, put into capsules, or just taken in a teaspoon and washed down with OJ.

Hi Yvette, l keep my RLS under control by taking NEW ERA MAG PHOS number8.

It’s the only thing that helps me. Other brands/types of Mag Phos are available, but it’s only the New Era that works for me. I have been on all the other prescribed meds but the side effects always outweighed any small benefit l had with them.

You can order online from Amazon.

As with all things RLS what works for one doesn’t work for another, but it’s perfectly safe to try and you never know.

Good luck

Hey Yvette0121🙋‍♀️I know exactly how you feel. I just go with the flow and watch movies when I can't sleep. I was sent to a specialist who stated that I don't have RLS cause I don't feel to get up and walk (What a joke) I have involuntary Leg movements or something like that and prescribed iron tablet which constipated me now I off to the GP today for plies. I am really upset as the report will have to be included with the others when I'm applying for PIP next year.

SueJH1963
SueJH1963
in reply to joyce234

Can you afford to get a second opinion? Or include information online from other specialists that directly contradict this guy? What a jerk.

joyce234
joyce234
in reply to SueJH1963

Thanks SueJH1963 I already did.

try magnesium

Have read somewhere as it is something I am looking into for different reasons myself that Dysbiosis / leaky gut could be a contributing factor......

Don’t give up 💜

Potassium citrate powder added to my coffee had helped me or I drink some low sodium v8 which has high potassium content.

One thing I left out of my first reply. Look up 'insulin resistance and mental health'. That should explain suicidal thoughts. The answer again is to reduce your carb intake.

Joolsg
Joolsg
in reply to Eryl

Eryl

Lack of sleep causes suicidal thoughts.

I know you are a believer in low carb diets and it has worked for you but you should really say in your post that it may not work for others.

I speak from experience on this as I followed a very strict paleo diet for 18 months- & it didn’t help RLS at all. I then added more foods to the paleo diet to follow the fodmaps diet for 6 months and again- no improvement.

Diet definitely helps some people- but not everyone.

We are all different.

Eryl
Eryl
in reply to Joolsg

In this case all the symptoms together make it far more likely.

Oh you poor dear....sadly you sound like so many of us. Not going into my saga, at the moment, but can you at least get some temporary release from an antidepressant? There is much new research on iron being given IV so it crosses the blood brain barrier. Has your doctor mentioned this to you? There are so many theories about RLS (Willis-Eikbon Disease) it helps if you can do much of your own research. So many 'band aid' treatments are out there, some help, some don't. I am looking for the reason (etiology) for RLS, not another pill. Don't ever give up, try everything. If it makes you feel worse, change to something else. When my legs start, I always get out of bed and do one of a number of things or all of them: take a hot shower, do lots of stretching exercise, clean house or a drawer or something. If it is a warm night and you live in a safe area, take a walk. I often eat something high in carbohydrates (Actually don't do that any more) but it use to help. I am now on the Paleo diet which is just plain good for you, not sure about the RLS. How old are you and do you have any other medical issues. My husband and I often need to sleep in separate beds as I can drive him mad also. Be your own best doctor and do your own research then take it to your doctor or change doctors if you can. don't give up. Blessings, Auntie Sioux

Yvette, You are not alone; I also felt suicidal. My husband was ready to take me to Johns Hopkins ( one of the RLS treatment Center in MA. Then I went online to the RLS Foundation site. You can find a Dr. who specializes in the RX of RLS. Iron supplementation needs close monitoring; I am on it with excellent results; my Ferritin level is now 138. Brica

Benzos like clonzapam can cause akathisia which can be mistaken for rls. Akathisia is closely related to suicidal thoughts. Clonzepam can also cause other movement disorders such as dystonia/dyskinesia so im not surprised you said you have to come off it as you have PD. Incidentially clonzepam can also cause parkinsonism, which can be mistaken for PD as they are often identicle but with a different cause. I had severe dyskinesia that has slowly got better with the discontinuation of all drugs that can cause movement disorders, though I still get some problems with my speech. SSRIs (anti-depressants) are also associated with movement disorders, one woman I know has severe permenant torticullis as a result and if you already have neurological symptoms/condition you could be more vulnerable and a bad reaction can actually increase your feelings of suicide as SSRIs will like worsen akathisia if that is what you have. Professor David Healy who us a world renowned psychopharmacologist has recently written a blog on akathisia

rxisk.org/akathisia-depress...

I know the horror of akathisia firsthand. I am off all prescription meds now, but the last withdrawal had me awake for 18 days straight.

You might also check the posts regarding nonpharm possibilities. I switched from pramipexole and a bonzo to dopa Mucuna root and Gaba for the rls, Valerian root and melatonin for sleep. I dissolve the contents of the capsules into water. A shot a bedtime and a glass of the "tea" bedside gets me through the night with about 6 hours of sleep.

What are you taking?

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