RLS what for I do now: The night before... - Restless Legs Syn...

Restless Legs Syndrome

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RLS what for I do now

m1946 profile image
32 Replies

The night before last was terrible. For some years I have been taking 2x 50mg Tramadol capsules after weaning off Ropinirole about 5 years agoBut this time the Tramadol didn't work and I was left with a sleepless night .

But what do I do? So last night I decided to withdraw completely from Tramadol and I guess provide my body with a "detox"

My RLS has been attacking my torso and legs!

To survive last night without ANY sleep was traumatic. Should I see if I can survive another night tonight without any Tramadol medication or increase the medication to 3 x 59mg Tramadol?

Is there something else I should do

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m1946
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32 Replies
Madlegs1 profile image
Madlegs1

Do I understand correctly?

You got off ropinerol 5 yrs ago. So you should be over any side effects of that.

You've been on Tramadol 50 ×2 for most of that 5 years.

And during that time your RLS has been quiet?

Ok?

Tramadol can augment in a tiny number of cases 2 to 3 % - so we can't rule out that possibility.

But an attack of the order you are describing doesn't sound like regular augmentation - it comes gradually, spreading across the body like an unwelcome groping.😥

So- I'm reckoning on some major trigger event.

Can you recall the events coming up to that fateful night.

The meals and drinks that day, new medication and so on.?

That's where I would concentrate on.

I would stay on the Tramadol, but not increase it. Wait and see if things get back to normal.

Sue will come on to tell you about all the other checks for RLS. You should listen to that.

All the best.

m1946 profile image
m1946 in reply toMadlegs1

Hello Madlegs

Madlegs1 profile image
Madlegs1 in reply tom1946

Hi!

m1946 profile image
m1946 in reply tom1946

Hi MadlegsIf you would please read my reply to Sue it would be appreciated

Malcolm

SueJohnson profile image
SueJohnson

I agree with Madlegs1. Stay on the tramadol. Never stop an opioid cold turkey as you discovered. You can develop tolerance to it after a few years so it is possible that is what is happening but I doubt it would happen so suddenly and so extreme. Have you started a new medicine or a new supplement? Here are some things that can make RLS worse for some people: alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

m1946 profile image
m1946 in reply toSueJohnson

Hi SueThank you for responding. I feel rather desperate ATM.

I would love yours & madlegs opinion on perhaps 2 x 200mg of Ibuprofen and one 50mg Tramadol capsule?

That way I would be cutting down Tramadol?

Your thoughts about Thursday's intake set me thinking. I have a partner Christine & very fortunate she is a very good cook always uses fresh products and veg from the garden but on Thursday very rarely we were treated to a restaurant meal. Although the food was chicken pate followed by Skate I can only think it was the shandy drink I had??

I had a prostate cancer procedure in 2012 and the RLS seemed to worsen considerably?

My Iron levels were satisfactory?

SueJohnson profile image
SueJohnson

My guess is the restaurant added MSG which is known to make RLS worse. Try just going back on your usual dose of tramadol instead of cutting down nor adding ibuprofen.

m1946 profile image
m1946 in reply toSueJohnson

This condition is not nice is it!!

On Thursday night I found my 100mg Tramadol just didn't work anymore. Help on this site made me think what had occurred earlier and beside a shandy and a restaurant meal (unusual!) there was nothing out of the ordinary? I did wonder if the restaurant cooked with MSG? & whether beer in the shandy was a cause? So I thought I might try to detox!!!

After trying to 'detox' from Tramadol Friday night and finding myself literally without sleep for the whole evening pacing up & down and unable to do anything else but watch the clock grind on & on past 1 then 2 then 3 & so on until 7.30am when the body succumbed for 20 minutes!! I decided to take two 50mg Tramadol capsules last night. I took them earlier than usual at 7pm and must admit had no problems until 1.20am when the wretched condition jumped in. I got up and decided eventually at 3am to take a third 50mg Tramsfol capsule. I slept until 9.15am!!!! Had breakfast and found myself waking up at noon!!

The original idea was to see if I could lower the dose or at least keep it 100mg Tramadol by trying to "detox" but experiencing the lack of sleep on Friday night was too much!

There you have my experience so far!!

Malcolm

SueJohnson profile image
SueJohnson in reply tom1946

The usual effective dose for tramadol is 100 mg to 200 mg. It sounds like you need the 150 mg.

m1946 profile image
m1946 in reply toSueJohnson

Thank you Sure. You have put my mind at rest!

Floordefleur profile image
Floordefleur

try to taper off slowly. I open the capsule, take some power out every day a little bit.

m1946 profile image
m1946 in reply toFloordefleur

This condition is not nice is it!!

On Thursday night I found my 100mg Tramadol just didn't work anymore. Help on this site made me think what had occurred earlier and beside a shandy and a restaurant meal (unusual!) there was nothing out of the ordinary? I did wonder if the restaurant cooked with MSG? & whether beer in the shandy was a cause? So I thought I might try to detox!!!

After trying to 'detox' from Tramadol Friday night and finding myself literally without sleep for the whole evening pacing up & down and unable to do anything else but watch the clock grind on & on past 1 then 2 then 3 & so on until 7.30am when the body succumbed for 20 minutes!! I decided to take two 50mg Tramadol capsules last night. I took them earlier than usual at 7pm and must admit had no problems until 1.20am when the wretched condition jumped in. I got up and decided eventually at 3am to take a third 50mg Tramsfol capsule. I slept until 9.15am!!!! Had breakfast and found myself waking up at noon!!

The original idea was to see if I could lower the dose or at least keep it 100mg Tramadol by trying to "detox" but experiencing the lack of sleep on Friday night was too much!

There you have my experience so far!!

Malcolm

Loopylegs profile image
Loopylegs

I augmented on tramadol, it made my rls worse, perhaps check with your doctor to see can you try a different opioid.

Jumpey profile image
Jumpey

I'm so sorry you are suffering. I used Tramadol for mant years. However tolerance is a problem. I went on a month's drug holiday periodically and it kicked back in again.Good luck.

Elouis profile image
Elouis

I've been taking various medication since 2012. They work 3 to 4 times a week, with random aggressive episodes in between. I've decided to grin and bear the bad times. I don't know what to do and my consultant seems to prescribe variations on a trial and error basis.

m1946 profile image
m1946 in reply toElouis

Hi ElouiseThis condition is not nice is it!!

On Thursday night I found my 100mg Tramadol just didn't work anymore. Help on this site made me think what had occurred earlier and beside a shandy and a restaurant meal (unusual!) there was nothing out of the ordinary? I did wonder if the restaurant cooked with MSG? & whether beer in the shandy was a cause? So I thought I might try to detox!!!

After trying to 'detox' from Tramadol Friday night and finding myself literally without sleep for the whole evening pacing up & down and unable to do anything else but watch the clock grind on & on past 1 then 2 then 3 & so on until 7.30am when the body succumbed for 20 minutes!! I decided to take two 50mg Tramadol capsules last night. I took them earlier than usual at 7pm and must admit had no problems until 1.20am when the wretched condition jumped in. I got up and decided eventually at 3am to take a third 50mg Tramsfol capsule. I slept until 9.15am!!!! Had breakfast and found myself waking up at noon!!

The original idea was to see if I could lower the dose or at least keep it 100mg Tramadol by trying to "detox" but experiencing the lack of sleep on Friday night was too much!

There you have my experience so far!!

Malcolm

Elouis profile image
Elouis in reply tom1946

My memory has been alarmingly poor and often feel weak through poor night's sleep, too often. I forgot my last appointment, due 29th March 23. Only remembered it a week ago. My consultant hasn't replied to my request to reschedule the missed appointment.

SueJohnson profile image
SueJohnson in reply toElouis

Since you are not getting enough sleep you might want to take something for it. Safe OTC options for insomnia include: valerian, chamomile, hops, L-tryptophan, 5-HTP, glycine, and GABA. The best prescription medicines are Ambien and Lunesta. Ambien is advised only for short term or intermittent use but Lunesta is not. Always discuss these with your doctor.

Elouis profile image
Elouis in reply toSueJohnson

Thank you. I'd tried CBTi for sleep, but it does not work. I'll see my GP about your advice.

Elouis profile image
Elouis in reply tom1946

The RLS causes lack of night sleep for me. I've got to pace the floor on my shaky legs for at least 90 minutes. It works sometimes.

SueJohnson profile image
SueJohnson in reply toElouis

Have you had your ferritin checked? Improving it to over 100 helps 60% of people with RLS and in some cases completely eliminates their RLS. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

Elouis profile image
Elouis in reply toSueJohnson

The ferritin level is good, as far as my consultant is concerned.

SueJohnson profile image
SueJohnson in reply toElouis

Do you know what it is? What is good for others in not good for those of us with RLS. And did you follow the instructions for the test? If not it will be higher than if you did and therefore might not be what you want.

Elouis profile image
Elouis in reply toSueJohnson

Yes, I followed the instructions for the test.

Elouis profile image
Elouis

On my consultant's advice, I've stopped taking iron supplements for over a year.

SueJohnson profile image
SueJohnson in reply toElouis

So have you had it tested recently?

Elouis profile image
Elouis in reply toSueJohnson

Result of serum ferritin dated 22/02/22 is 197ug/L

SueJohnson profile image
SueJohnson in reply toElouis

It would probably be a good idea to have it tested again since so much time has gone by and you haven't been taking any iron.

Elouis profile image
Elouis in reply toSueJohnson

Thanks again. I'll see my doctor asap.

Elouis profile image
Elouis in reply toElouis

I overlooked the last appointment date, which was 29/03/2023. Only noticed it mid May, 2 weeks ago. With deep apologies, I requested an alternative appointment. My usually friendly consultant has not replied. Any advice on whether I should request my GP for a different consultant?

Elouis profile image
Elouis

At least 15 months ago.

Elouis profile image
Elouis

I was switched to opiates since June 2022. Could that be the cause of my feeling weak and loss of memory?

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