I'm new here. Where to go from here?

[Jezee]

Firstly just want to say hi as I'm new here and quickly tell my story.

I,ll try to keep it fairly short. I have had RLS since the age of 10 that I can remember, I'm now 55 and it has gotten worse as I get older. I have primary, genetic RLS since my dad also has it. Around 15-20 years ago it was getting to the point that I went to see the doctor and he put me on Ropinerole and over night my RLS was gone (the only side effect was insomnia but it took me years to figure out it was the Ropinerole). Since then I have tried Neupro patches which worked for a year or so, Gabapentin, tramadol, and a few others that I can't remeber but nothing has really worked and the side affects were horrible. For the last 6 years I have been using kratom, red strains for night time and white and green strains for during the day, constantly changing the strains so that my body doesn't get used to it. I even took it to Florida. It has worked brilliantly until the last few months and the night red strains don't really work anymore. So out of desperation went to see a Neurologist in Newcastle who put me on Tramadol and Carbamazepine which I was on for 5 weeks or so but cutting a long story short gave me horrible side affects for example severe stomach aches, falling asleep during the day, fogginess etc. The Neurologist is not sure what to put me on as they have said I've tried most of them. My quality of life is poor and I've had thoughts of ending my life. Where should I go from here?

[SueJohnson]

Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.

[Jezee in reply to SueJohnson]

Hi Sue, thanks for your reply. I have had my iron levels tested twice and if I remember they were over 100. A few weeks ago I had my bloods done again but still waiting for the results.

[SueJohnson]

How much gabapentin were you on?

[Jezee in reply to SueJohnson]

400mg, I felt aggitated and restless on it. I think that I'm quite sensitive to meds. I hate the side effects.

[SueJohnson in reply to Jezee]

You might want to try pregabalin. Although they are basically the same drug as gabapentin and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Beginning dose is 75 mg and after 3 weeks you can increase it by 25 mg every couple of days until you find the dose that works for you. If you take magnesium don't take it within 3 hours of the pregabalin as it reduces the absorption of the pregabalin. According to the Mayo Clinic Updated Algorithm for RLS the usual effective dose is 200 to 300 mg (equivalent to 1200 to 1800 mg gabapentin)

[SueJohnson]

You probably need a low dose opioid but obviously not tramadol.

[Jezee in reply to SueJohnson]

I'm thinking of trying a lose dose of buprenorphine if the neurologist will let me. I'm abit unsure of all the side effects that I've read about. But then that's with all meds etc.

[SueJohnson in reply to Jezee]

Just be aware that it can cause dental problems mainly because it causes dry mouth and a lack of saliva. It has caused cracked teeth in some cases.

[Poppip]

I’m so sorry to hear of the horrible time you are having. My story is so so similar to yours. I have tried most of those meds too. I am currently taking Temgesic 200 mcg sub lingual and it works fine. I rarely get symptoms now. If I’m very tired going to bed I’ll take half tab or 100 mcg and that works good. Occasionally I wake at 3 or 4 am and may have to take the other half. It’s worth trying. I was at my wits end , no sleep, unable to stay still , a complete misery . My life has completely changed. Yesterday I was a passenger in a car for 5 hrs no stop, took half tab before leaving and absolutely no bother. Hope it works for you 🤞🤞

[Jezee in reply to Poppip]

Thank you for the advice. A neurologist is ringing me on Wednesday I will suggest this to her as well as the buprenorphine .

[Poppip in reply to Jezee]

They are the same thing brand name and generic name. I hope you get some relief if you end up trying it. Good Luck 🤞

[joker826]

gabapentin and trazodone work best for me.

[Merny5]

so sorry that you are going through this. It is a horrible disease. It looks like you are at the point where you might need opioids to control the beast.