Desperate need for help with RLS - Restless Legs Syn...

Restless Legs Syndrome
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Desperate need for help with RLS

erinpsullian
erinpsullian

I'm 53 years old and have had mild RLS for about 8 years. It's be easily manageable with Reuip the past couple of years. All of the sudden I've had severe RLS for the past 2 months. Stopped Requip and tried Mirapex and added Gabapentin. The Mirapex had some terrible side effects for me and the 1200mgs of Gabapentin did not work. Moved to Horizant and Tramadol last night and have been up all night. I'm so anxious about sleeping I don't think the Tramadol had a chance to work. I feel desperate for help and feel like I'm spiraling down emotionally. My work and home life are suffering tremendously, has anyone had severe RLS and found some relief? My iron is low and I'm on a supplement, but it's not increasing fast enough for me. I started exercise today, 30 minutes on the treadmill. What else can I do? Is there any benefit to acupuncture (which I tried a month ago) or CBD pills? I'm open to any suggestions.

Thank you

15 Replies
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That's an awful lot of drugs to try in 2 months. Let's go to the beginning. You say Requip stopped working so you stopped taking it. I'm guessing you were (are) suffering from augmentation. Did you stop gradually and did you use Tramadol to help with the withdrawal?

Search augmentation on here and read rls-uk.org/augmentation-reb...

You will find lots of experiences of it (I've been through it). But you can't expect a quick fix and by pushing all these different drugs into your body they won't give immediate results.

You have to rid yourself of the effects of the requip first and get your legs back to base level and then try again. It is hard but it is doable.

Good luck

erinpsullian
erinpsullian in reply to Pam34

Thanks Pam. I'm just following Dr's order...I have no idea what to do at this point. I'm so depressed and can't stop crying today. I'm so lost on all of this.

Pam34
Pam34 in reply to erinpsullian

I know how hard it is - many of us on here have been in your position. Unfortunately many doctors have little knowledge of RLS so it's up to you to read up on the subject and go armed with information - you can't rely on them to know what is best.

Read and print off the link I gave you for augmentation and also this one

rls-uk.org/treatment/

In fact read as much as you can from the RLS-UK website. Knowledge is power!

So at this point you need to make an appt with your Dr, take the information with you and ask for some help (ie Tramadol) to reduce the effects of the Requip withdrawal.

I can't advise you but I think you would be better stopping any other drugs until you are through the requip withdrawal but please take your doctors advice on this first.

It is hard, really hard but it can be done and once you are through the withdrawal you can decide on your next plan of action.

Let us know what the doctor says - remember to read up and take it with you.

Pam

Oh dear. What you describe is withdrawal from the Requip. If you come off a dopamine agonist then the RLS increases in severity and you have to give new drugs time to work.

As Pam advises, look up Augmentation and read the posts.

The tramadol and Horizant will work but you have to give it time. It should settle in a month and you can adjust the timing of your meds yo suit you best.

You need to get your serum ferritin up above 100 and ask your doctor/ neurologist about iron infusions.

It will settle.

erinpsullian
erinpsullian in reply to Joolsg

Thank you much for the replies. Not feeling alone in this helps. I'm very down right now and not having much luck with any Dr's. I know about augmentation and addressed that with neurologist, but he said he wanted to try me on Horizant for now see how that works. I didn't think about the withdrawal from Reuip, but I was on such a low dose I never even thought about that. That could be why I'm spiraling down emotionally so quickly. Thank you for taking the time to reply...I'm feeling very alone in this battle.

Joolsg
Joolsg in reply to erinpsullian

You’re not alone although I know it feels like that when your whole body is jerking and spasming constantly all day and night and you can’t think straight through lack of sleep.

I am always a very positive person but became very depressed during Augmentation and withdrawal. It did pass and I made it through- you will too.

Have a very hot bath and do slow squats to use your leg muscles- weight training works better for RLS than running- particularly late at night as muscle stores dopamine which helps RLS.

Also buy compression socks from a chemist & try a freeze spray on your legs. Take magnesium tablets at night ( at least 3 hours apart from the Horizant).

Stay strong- you can do this no matter how dreadful you feel right now.

Just reinforcing what the others have said........like you, I came off the DAs a few months ago and thought the new combination (Lyrica and Tramadol) weren’t working. In fact, the withdrawal took longer than I had expected (4months after the last DA dose) and the symptoms were ghastly. This forum helped me to realise that I was still suffering from augmentation.

So, good luck. You have to get the DAs right out of your system before you can assess whether other drugs are working.

I think it is very important to fight for a lab test for low ferritin (iron)--my husband

kept asking for a year and his RLS kept getting worse---finally a neurologist ordered it

and it was low and he was sent for weekly iron infusions (45 mins each) and he had

instant relief with the RLS which has gotten better with each infusion. Such a simple

answer but Drs don't want to do it.

I concur with what the others have said. Withdrawal from a dopamine agonist will cause exacerbated symptoms even if you were only on a low dose and if you were augmented before withdrawing it will be much worse. It will eventually start to get better. Finding this forum felt like shining a light into a dark place for me. It makes such a difference to know you are not alone, particularly as most people have no idea how much suffering this condition causes. On top of which you will pick up loads of tips.

It is important to get the actual figure for your serum ferritin and many people do respond very well to an iv iron infusion. Even using oral iron can help a lot. Most people on here take iron bisglycinate (aka gentle iron).

There are loads of other suggestions for temporary help when symptoms are really bad. Yoga stretches - particularly those that stretch the backs of the legs and bottom - can provide relief. Magnesium taken as a supplement or a topical application to the legs can help. Playing a diverting video game is excellent and the relief often lasts after you finish playing. Coffee can help as it positively impacts on the adenosine system. Many people get good results from restrictive diets though again these can take a while to have a positive impact.

Brilliant advice above. Just a few points, avoid anti depressants (eg Amitriptelene), cold remedies, there is a list of drugs which make RLS worse. Exercise can make RLS worse for many of us and aerobic are best avoided. Anaerobic exercises are better and muscle building helps with Dopamine production (our muscle mass reduces as we age). At last year’s RLS UK AGM workshops we were advised that exercise between 5-7pm was best for our body clock (so important with RLS). Lastly, my Neurologist told me I had to become the expert and join the forums and read the books (and not expect too much from GP’s). RLS by Buchfuhrer is a good start. With that knowledge your GP will start to listen to you and you can guide them into giving you what you want!

Good luck, with help you will overcome and make your RLS tolerable.

You are not alone. Just know that we are all here for you and that we understand and believe you. Withdrawal was especially difficult for me bcz. I had not found this forum until I was feeling so very sick from it. Imagine we are all there with you. It will get better.

Pam you have 100% of my sympathy. It is easy for everyone to give advise but I truly get what you are doing. I would swallow rocks if they would help. Like you WED (the formal name, Willis-Eikbon Disease) is now controlling my life. So far my husband is being very patient but I am sure I am driving him nuts.nnIt is VERY hard to get off the drugs and free float until you can start on the next. I like you have sky high anxiety over the increasing severity of the disease. One of the comments below said that knowledge is power. She is right. I am now researching using amino acids to rid the body of excess glutamate which is the updated information for the etiology of WED. Western medicine only treats the symptoms, not the cause. I do not believe that is proper treatment for anything. I also like you am gravely disappointed by the doctors, even alternative doctors which is usually my first choice. If you can, follow me,' auntiesioux', as I will be posting what I find for treating WED's cause, not just the symptoms. "Hang in there," does NOT work for me, it feels dismissive although not from malice . Everyone wants to help and this forum does just that. Be your own best researcher and arm yourself with knowledge. Stay tuned in, Sioux (auntiesioux)

Have not tried cod pills ,, but a few pulls of CBC vape give some relief while waiting for the next gaba 300 to kick in .

Have you tried magnesium supplements?

They can help some people. Try Magnesium citrate for easier absorption - I take 400mg daily and it has helped me, along with iron supplements too (and Ropinirole/Requip).

Good luck!

Hi

Assuming your lab result are in normal ranges and your not under great stress ie financial or personal. and RLS is the only thing thats bothering you. Then here's my take:

I have RLS as well and the past 3 years Ive been using Pramapixole -the active ingredient in different brands - and If this compound worked to begin with then you should have stuck with it instead of trying different things.

THe side effect issue should be disused with your Neurolog. But what matters is if pramapixole does wont come on if take it just before bed and that means you have not taken it 3 or 4 hours prior to sleep(this happens to me too)

Is your diet is void of allergens such as diary, wheat, sugar etc.?

do you exercise early in the morning?

Have yo worked on your sleep hygiene?

its suggested that getting Vitamin D levels over 100 is the best way forwards. This is the advice given by dr Gundry among others.

İf you are 50+ eating grass ged meat is highly recommended.

Or experiment with other diets such as Carnivore or Try longevity diet. see what your body performs better on.

and there are other therapies of course to try ie OZON and acupuncture.

You may want to keep an RLS diary along the way to see what works what doesnt.

BEST LUCK!

you are not alone.

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