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Restless Legs Syndrome
11,056 members • 6,933 posts

So worried about the future

Hi All

This is a basic recap of my horrors with RLS I have had RSL for many years and originally look low dose up to 1 mg with Gabapentin. I refused large dose of Gaba (about 1200 mg which I felt made me hostile and I thought extremely agitated. I had an appointment at Kings Neurology Department and his advice was to double the dose to 2mg Extended release. !!!!!! I now know this was not good adviceI and started to get extreme augmentation - arm, torso and legs. About 9 months ago I started to wean myself off Ropinerole. Over months I very slowly reduced Ropinerole from 2 mg extended release to .125mg per night. My doctor supported me and prescribed 2 at night 37.5 mg Tramadol which I am able to cut in half. Incidentally, about a week ago I discovered CBD and take a couple of drops 3 times a day. CBD HAS HELPED ME BUT NOT CURED IT

Now I’ve been off Ropinerole for a week Iand i would dearly love to get off Tramadol. Tramadol even at relatively low dose causes me to feel agitated in the morning and to cap it all my legs are mildly restless . I try to resist to a Tramadol

At the moment I’m feeling very depressed - I also have issues with my back and side of abdomen. I cannot see any light at the tunnel.

Should I continue with a dose 1 or 2 x 37.5 Tramadol that helps my RLS and back pain and worry about Tramadol addiction later. I already feel under the control of this drug

I also take gentle iron which, together with Tramadol makes me extremely constipated I also take with magnesium which seems to help with constipation.

At the moment I can’t see any hope or release from A constant feeling of agitation/RLS

Casi

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Casi, take the tramadol or better yet oxycodone if you can get your doctor to prescribe it. I was told by my doctor that addiction is sometimes medically necessary. Just don't take more than prescribed. Best Wishes.

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Agree, I feel addiction is ok if it makes me feel well

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Thank you Hoffie. I wonder what your doctor means that addiction is sometimes medically necessary - are better off being addicted to low dose Tramadol rather than suffer? If so I totally agree with him but I just didn’t want Tramadol to take over where Ropinerole left off and I endured augmentation again. I take two x .37 tradmadol at night but feel I need to take one at lunch time or early afternoon. I do have back pain and sometimes it’s difficult to distinction backpain from restless legs pain.

Casi xx

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Casi, you have done amazingly well to get off ropinerole. Take things a step at a time. You can tackle the tramadol if you want to get off it but you need some breathing space. Give yourself the relief you need now to recover and take stock. You will need to formulate a plan for how to treat the rls without tramadol.

You should be patting yourself on the back now for a while before moving on to new challenges. It can be tricky finding a regime that works for rls but there is something out there that works for most people. It takes a lot of tweaking, sharing on here and absorbing information. Far from despairing you should feel proud and hopeful. Did you get a figure for your serum ferritin? You are right to take oral iron. Raising iron levels can help a lot with symptoms.

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Thank you so much for your support. I will take the Tramadol as prescribed but it worried me that I felt “jittery”mid morning. I felt that I was replacing one drug with another. Tramadol doesn’t keeps my RLS completely under control - ie symptom free but it’s so much better than dreadful augmentation.

Six months ago my ferritin level was 60. I had to stop taking even “gentle” iron every night because I became horribly constipated. A vicious circle.

I feel more positive having read these replies and I bless you all for your advice and kindness.

Casi

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Sorry Cass, we crossed each other there.😂

Another thing to look at would be possible triggers for the rls.

There are so many possible things that can set it off that you will have to think hard about what you are eating or drinking, that might be impacting on the rls. Or- are you on any other meds that might set it off? Antihistamines and antidepressants are both notorious triggers.

Cheers.

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Thanks Madlegs1. I’ve researched ALL the meds and otc products that can trigger restless legs. I’m trying to pin point food and drink. I know sugar, alcohol and caffeine aren’t good do I try to keep these to a minimum. I’ll do more research. With much gratitude x

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Hi Casi. I’m not very knowledgeable as many are on this site. I am taking Iron Bisglycinate in capsule and patches every other night. I do feel it’s so important to build up our ferratin levels. I’m taking magnesium citrate (like you are) but also senna which my doctor prescribed and these seem to work at reducing the constipation to an acceptable level. Hope you get sorted.

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If you switch to ferrous bis-glycinate chelate - it is non-constipating. Ferritin levels are a big deal in mitigating RLS for many people. From Johns Hopkins Neurology "The single most consistent finding and the strongest environmental risk factor associated with RLS is iron insufficiency."

albionferrochel.com/

hopkinsmedicine.org/neurolo...

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I think most on here will agree that no matter what regimen works for you, symptoms will always be there. I don't know if we are ever totally free from this monster.

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Don't be worriting yourself about addiction - it is very overrated. Especially at the low doses you are taking . Unless ,of course, you have an addictive personality ( ie ,a history of abuse, or other addictions).

Dependency is ok. If you need a drug, and it is working for you, and you are not needing to keep upping the dose (tolerance), then that's good for your health.

I haven't looked up your profile, but do you have other issues that may impact on your health and medications ? I have a feeling that you may get over concerned about things in general and might need to take a look at that, to help with the ould restless legs?🤗

I think you have done really great, and have shown a fantastic capability in coping with the challenges facing you.

As the others have said - be easy with yourself, and take breather to get used to the current situation.

Regarding the constipation, magnesium is certainly a help, but look at your diet- avoid refined foods( white bread, pasta etc, and peanut butter.) Plenty of fruit and veggies, drink lots of water, walk two miles a day. Dried fruits ( apricots, dates, figs and prunes) will also help and will build up iron reserves.

You have done good. Keep it up.

All the best.

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Thank you Madlegs. I don’t have other serious issues with my heath apart from back pain which has been ongoing for several years. I am booked in for a nerve block injection in a few weeks time. You are correct, I do get over concerned but when one suffers constant pain and RLS it’s so easy to see things in a black and never ending way.

I have tried mindfulness but when things get on top of you - everything “goes out of the window” 😟.

This is such a supportive and knowledgeable forum for which I extremely grateful.

Thank you x

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Good luck with tge injection- I got one last year- brilliant. 🤗🤩

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Feeling for you. I have just had the worse night in a long time! I can agree that stress is definitely a trigger. So is tiredness which makes it a vicious circle. For me it is not so much particular foods but whatever additives it is I cannot take and have not identified them but cheap wines are a minefield and eating out where you have no idea what you are getting. My younger son had excema and it was cheap brands he could not have. Phenergan is a no no. Better to itch!

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Hi Casi

Well done for getting off the Ropinirole. The agitation is probably withdrawal- symptoms can last for months after last dose.

Interesting that Kings told you to increase dose to 2mg extended release. I waited 9 months to see them after Augmentation and was horrified when they suggested Neupro patch. I’d already had advice from here and read Dr Buchfuhrer’s book so knew to avoid any more Dopamine Agonists. I’m not very impressed with Kings at all and what you’ve been advised confirms my view.

Gabapentin up to 2000 mg a day is normal for RLS and takes at least a month after last dose of Ropinirole to really kick in so stick with it for a while to see if it helps.

Tramadol didn’t do much for me once through withdrawal so I switched to OxyContin and pregabalin.

It’s worth considering OxyContin and pregabalin as alternatives- they may suit you better .

Low doses shouldn’t cause addiction, but as others have said, we have to be dependent on our meds.

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Thank you Joolsg and RLS_optimist. for your suggestions. I hope to see my GP next month and will speak to her about OxyContin and pregabalin - also Targinact . I was worried about taking anything which vaguely sounded like “gaba” as I believe gabapentin, even at a low dose of 600-900mg made me feel extremely tired and I found it very difficult function.

The support I receive on this forum is very much appreciated. Thank you everyone.

Casi

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casi

Just a thought. Gabapentin and pregabalin are very sedating- so for most of us with RLS should be taken at night. They will help enormously with sleep and dampen down night time RLS. Maybe you had bad side effects with gabapentin if you took earlier in the day?

Jools

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Dear Joolsg

Thank you so much for your reply. I have an GP appointment next month and will discuss trying pregabalin but a low dose. Gabapentin made me feel very depressed as well as the other reactions I had so I will ask if pregabalin will suit me better. I am feeling much more positive this week. Totally off Ropinerole and all I’m taking is half Tramadol (37.5 mg cut in half) at midday and 2 whole Tramadol at night. I am trying CBD oil 10% two drops three times a day and I think this is making a difference for me. I still often get mild RSL in my hands, arms, legs and lower back which is relieved with the midday dose of Tramadol.

It has been a long haul getting of ropinerole but it can be done with help. My thoughts go out to all who are suffering augmentation.

Kindest regards and thanks to everyone who has responded

Casi

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Likewise. It breaks my heart when newbies join clearly suffering horrible Augmentation and their doctors are usually totally ignorant about the condition. But well done for getting off Ropinirole.

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Just to add to Jools's spot-on reply to you: she mentioned OxyContin, which is a very effective and long-acting opioid, and is a reasonable and very effective alternative to Tramadol. I wanted to add that another option is Targinact, which is OxyContin plus naloxone. The naloxone is added to reduce constipation. If you're in the U.K., I believe Targinact is approved there for treating RLS. Many on this forum use that. Methadone is another highly regarded (by many RLS experts) opioid, but I believe it's not easy to get in the U.K. I use it myself (I'm in the USA), and have found it has many advantages over other opioids. Good luck- you're doing great!

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I was given Oxynorm after brain surgery and it did NOTHING for the pain and I was awake all night with rls

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