I have had severe RLS for over 10 years, was initially on dopamine agonists (until I augmented!) and been on Tramadol (100mg/day) plus Gabapentin (1200mg/day) for over 8 years. My Ferritin level is usually about 75 so I am currently trying to raise it. I tried Bisglycinate for 3 months without any improvement in symptoms and my GP has given me 2 months on Ferrous Sulphate (which is not helping) then I shall be pushing for intravenous iron next. Unfortunately my RLS has worsened so that I get a maximum of an hour’s sleep before getting up for half an hour and I believe that I have reached tolerance of Tramadol. What alternative opioids are available in the UK and what do you recommend?
Tramadol Tolerance: I have had severe... - Restless Legs Syn...
Tramadol Tolerance
If your RLS symptoms have gotten worse you may need to increase your gabapentin. You should already be taking 600 mg 1 to 2 hours before bedtime and the other 600 mg 4 hours before bedtime as taking more than 600 mg at one time decreases its absorption. Ask for 100 mg capsules and increase every 2 days until your symptoms are under control. Take them 6 hours before bedtime. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium don't take it within 3 hours of gabapentin as it interferes with the absorption.of gabapentin. Are you taking any other medicines or over the counter supplements? If you list them I can tell you whether any of them exacerbate RLS symptoms and if so can give you a safe substitute.
Hiya
Iron alone can make rls worse unless you are very low I have found. We need all the cofactors to work together. After an initial
Improvement with iron I found things got worse supplementing until I started taking zinc and a multi mineral complex. Zinc and copper is needed for iron to do it’s thing as are many other elements, which all are implicated in relevant pathways in their own right.
Just wanted to say that as we can get fixated on one nutrient as the answer and it doesn’t work like that. I was sure it was iron and not only my rls but my ocd depression amd neuro symptoms got very scary before I backed off and started to balance it out with other things. 75 ain’t that bad for ferritin. I would be wary of dogmatic protocols that focus on one thing and the same thing for everyone.
I have no experience with the meds you take and their impact tho. Good luck x
See the Mayo Clinic Updated Algorithm on RLS which is the latest guidance on RLS at
Https://mayoclinicproceedings.org/a... This is where they suggest improving ferritin to 100 and say that 60% of people will see their RLS symptoms improved if they do so.
Yes I’m aware and it perhaps won’t hurt but taking only my iron can make you very unwell in my experience and you say your rls is getting worse. There are many respectable evidence based recommendations but you have to listen to your body also imo. Without the cofactors in my opinion you are at risk of making yourself very unwell. Taking iron orally likely depletes other minerals even more because your digestive system is saturated with iron. I got my iron up to the 90s and my rls was at its worst. I took significant zinc and now maintain with a mineral complex and I haven’t had rls in some time. Hi yes important for me to say this here not just for your benefit but for anyone reading. Most iron protocols I’ve seen recognise the important of zinc as cofactor and other minerals and vitamins.
Yes I agree that one should listen to their own body, and everyone is different in their reactions. By the way, I don't know who you intended this reply for as my ferritin is above 100 so I don't take iron and my symptoms are 100% under control with 1500 mg of gabapentin.
Many thanks, Sue, I’m not taking anything else apart from Lansoprazole which I understand is not on the list of drugs to avoid. It has made a big difference in avoiding stomach acid and avoids me taking Rennies etc which risk making my RLS drugs less effective.I did a full test to make sure it wasn’t increasing symptoms. I take one Gabapentin 400mg at 6.00pm, 8.30 and 11.00pm and in desperation have added another 400mg at about 2am. Perhaps I should try getting 600mg tablets.
Thanks again
John
I assume you go to bed at 12:00 to 1:00 as one should take the final dose 1 to 2 hours before bedtime. I would suggest changing your doses to take them at 5:00, 7:00 and 9:00 so there is just 2 hours between them. Lansoprazole can interfere with the absorption of iron if you are taking any. Take them at least 2 hours apart. I would ask for 100 mg capsules so you can increase in smaller increments.
Hi , I used to take Tramadol and would develop tolerance about once a year.I would take a month's drug holiday and it would kick back in again. This worked for many years then it stopped working altogether. I am now on morphine.Huve good luck.x
I have had restless legs since I was 15. I have try all other pain medicine but nothing work. About 9 years I was told I need hip replacement. And for the pain they put me tramadol. At this point I was on repinirole they only gave me enough tramadol for 4 a day. My hip was not giving me to much trouble so took 2 at 6pm and 2 at 9 with the repinirole So when I go to bed about 10pm. I normally fall a sleep till about 5or 6 am. I do wake In the night but go back to sleep with having to go for wander. This has work so far. I have had my hip replacement and my doctors are going to take me off. But because I have to sit still and rest they have up my tramadol to 8 a day so now I sit still all day. When I get back to work. Will be a whole new story. Hope this helps.
Are you off ropinirole now?
I am still on it.
Have you thought about coming off ropinirole and switching to gabapentin since ropinirole is no longer the first-line treatment for RLS? Up to 70% of patients will suffer from augmentation which believe me you don't want. It used to be the first-line treatment which is why so many doctors prescribed it but they are not up to date on the current treatment recommendations. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't at
Https://mayoclinicproceedings.org/a... Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms.
I found that Tramadol became ineffective after four years so recently my neurologist has agreed to prescribe temgesic I have not reached the full dose yet but the little he has allowed so far seems to be helping and according to all the posts I have read from people who are on Temgesic it can be a miracle drug so perhaps you could ask for it
Hi John_naylor, as well as tolerance please be aware that you can augment on Tramadol. If that's the case, the only 'cure' is to reduce it slowly until you get off it and in the mean time, find something else (like increasing your Gabapentin) that will help the RLS. It's one of the only opioids that it happens with. I hope you can resolve whatever it is that's causing the increased symptoms.
Another thing you can look at is your gut health and whether something you eat is making it unhappy. For me, wheat and lactose caused small issues (like flatulence and slow absorption of iron). Once I avoided wheat and lactose for a few months, my gut started absorbing iron very effectively - and now no flatulence. However, it's quite hard work to go on elimination diets so just read up about gut health especially leaky gut, and see if you can be inspired to give it a go. It certainly worked for me and others on this forum- though sadly it didn't help my RLS (but others have found it helpful), but enabled me to increase my ferritin levels and rule out low ferritin as a reason for my RLs. Good luck.