Finally reaching out

Hello everyone. I have never been on a forum in my life. But this morning I am so distraught and exhausted I have come in search of conversation with others who understand. I am 41 and have had RLS for 15 years. I have never tried any medication for it. From what it would seem no one ever says 'Yeah! It worked a treat! Its gone! So am reluctant to try. I feel desperate. I have down loaded the RLS monitor sheet and am going to start filling that in tonight. Anyway , hello.

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  • Hi Ruby,

    Welcome to the first forum you have ever joined and we hope to be able to help you the best we can. So that is a positive and another positive is that you are going to start using the RLS monitor sheet.

    Have you looked at the RLS-UK page on medications to avoid? You may well not betaking any of them but that can be a good start. Here is the link: rls-uk.org/treatment/ Have you had your ferritin levels checked?

    I am sure others will be along to help you soon. :)

  • Kaarina has started you on your journey with good directions.

    Coping with rls is a many pronged approach.

    Firstly there are triggers that set it off- medicines as Kaarina has pointed out , also food ingredients etc- you may already have noticed relationships between intake and rls episodes. Alcohol and colourings are just two common ones. Keeping an intake diary is essential to pinpoint just what sets you off.

    Medications are the next step- but there are plenty of natural inputs to try before you go the pharma route. Get your serum ferritin number from a fasting blood test- not a blood iron- and get the actual number - if it is below 70 you could consider fer bisglycinate- search it here for exact details.

    Magnesium- as an oil , bath or ingested have worked for many.

    There are a million other products - just read through this site and the postings on "rlshelp.org"

    Finally there is the hard stuff such as Dopamine agonists- Pramipexol is the starter - at lowest dose possible. And going on through a progressively nastier list until you get to the nirvana of opiates.

    Don't be put off by all the horror stories from these medications- many bad experiences are due to bad prescribing , lack of staying power-ie- not giving them a fair chance , mixing too many at the same time and so on.

    I'm on oxycontin (an opiate) which is working brilliantly- 95%relief- but it took at least 3 months to get used to the itching and insomnia. Now I'm grand. So it pays to hang on in there and give each med a fair chance.

    I think I've said enough now.

    Good luck in your journey- there is light at the end of the tunnel.

  • My story is very similar to yours,tried everything and you are right about everything you say,am also on opiates but am finding the fentanyl patch loads better, although the oxycodone and oxycontin work didn't like being tied to the tablet's and the ups and downs when they start wearing off (absolutely horrible ) x

  • Light at the end of tunnel for sure ! :) nice to see you are suggesting iron bisglycinate, tredlight will be happy :)

    Bx

  • what is the rls monitor sheet?

  • Datsoon,

    Here is the link. Take a look: rls-uk.org/rls-monitor/ There is also an RLS Severity Scale link here: rls-uk.org/diagnosis/ that may be of help. Scroll down.

  • If your rls is so extreme am really surprised you haven't been on medication?

  • hi there rubysuki,have just joined myself. i had no idea that so many people suffered with rls

  • It's an eye opener to realise that so many others have RLS just like ourselves. Makes you wonder why so little is known about it in the medical world

  • Welcome by the way

  • Hi rubysuki and welcome to the forum. I can assure you that you will learn more about your RLS in the first few days of reading on this site and the RLS uk site than you will have known all your life. I only joined about 2 weeks ago after suffering for over 30 years with RLS and I have gone from a depressed despondent woman to getting some of my confidence back and most of all my voice back in those 2 weeks. The guys on here are amazing. They make you feel so welcome but most of all make you feel you are not alone anymore. There is always someone to talk to day and night. Take the time to read through people's posts and if you feel someone shares lots of information that you find useful then you can click on their name see other info they have shared prior to you joining.

    Good luck with your journey with us. You will never look back now I promise you

  • Hello!

    Welcome on board! Best place to be I assure you! Soon you will be feeling a lot better with the help you get from this forum.

    Read through and see what suits you best! I prefer no medication route but that might change if the iron tablets stops working!

    I was on prami but been off 2 weeks now! I haven't started any other medication just yet as iron bisglycinate is keeping me happy ! I feel so good off medicine ATM but I have gone through hell first few days.. but like madlegs said there is light at the end of the tunnel!

    Stay strong and hope you find what suits you best,

    B.

  • So happy the iron is working for you. May it last forever 😁

  • It is magic and can't believe I took prami all those months! Long it may continue indeed! I am trying different food to see if rls get worse too, I now came to decision onion and garlic ok with me. Foodmap say it is a no no! I will introduce alcohol next to see how it makes me with rls! :)

    Thanks and hoping you are doing all too? I bet your Garden looking lovely now.

  • You keep going. Woot woot. Great to hear how different diets vitamins and such work for others. Hip hop hooray

  • Hello. treating RLS is trial and error for everyone. There is no one med that works 100% of the time, and we have to find the one that helps us the most, also other things to help. Yoga type exercises, avoiding meds that can and will make RLS worse. My one question to you would be , are you on ANY meds for anything? Even many over the counter meds for "sleep", allergies, and cold meds can make RLS worse or cause it. Since you have "only" had it for 15 of your 41 years, I am wondering if you started any meds that could have triggered the RLS. No matter how much advice you get on here, remember different things work for different people, so it is important to do your own research as well. kaarina has given you the foundation's web site. I see iron being suggested below, and my comment on that is that you should never start iron without being tested first to see if you need it. you CAN get too much iron, called iron overload, so never run out and buy something just because it is a suggestion here, but do your research and get tested for that. :) another good web site that has detailed list of meds to use, alternative treatments, and VERY IMPORTANT, the list of Drugs to Avoid that can make RLS worse, is rlshelp.org Dr. Buchfuhrer has this site and go the the treatment page for the lists of med to use and avoid. Since you are new to forums, remember when someone says this or that works, it works for THEM, and could work for you, too, but maybe not. Like I said it is all trial and error when it comes to treating RLS, and everyone has their own experience. There are 2 kinds of RLS, Primary RLS (genetic) and Secondary RLS, which can be triggered by many things.

  • hi there,no you are not on your own,just joined i thought myself but it seems we are not,and also in the middle of the night there is someone here to talk to,and that always helps

  • Neurotin worked well for me. RLS is very uncomfortable. You can understand unless you've experienced it. And any chronic sleep condition really effects your quality of life.. Trust me I feel your pain. Tell your doctor you need help with these symptoms. He has to make some type intervention when you approach as requesting one..

  • Hi.

    My first chat room too. I joined a few days ago and have learned so much!

    Welcome!

  • Hi .. I am new too..

  • Put the name "Mark370" in the above search box or "Yuna" or Bganim or Bkc or GillRLS or DicCarlson and follow what they did with your doctor's permission. No prescription necessary, but we on here prefer that you get your doctor's permission.

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