Hello people,i have been reading a lot of the posts on here for the last couple of months and have gathered some invaluable information,some very knowledgeable members. My current situation is i have moderate/severe RLS,which im managing with kratom alone,it works very well for me,thankfully. I really could not survive without it. I want to ask the doctors for one of the various medications available,but am unsure what to ask for,i really dont want to have go through augmentation in any short space of time,it sounds awful. I havent had my ferritin/iron or magnesium levels checked so i would probably start with that.
I have a work colleague who takes gabapentin for RLS which she says works for her. I understand i will have to take it for life,well until they find a cure(fingers crossed) this affliction is the bane of my life!
I cannot even understand how i have RLS? It really affects my everyday living. I just need a daily medication that manages it and keep my kratom as back up. Many thanks if you have read this,i really will appreciate any advice you can throw my way. Stay strong people.
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Inallfairness
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Unfortunately we cant really say what medication for you to start off with, because everyone has a different reaction to them all. So, its trial and error til you find what works and suits you. Its either the dopamine meds or the opiates or the ones like Gabapentin. Or even a combination of two or even three of the different types, taken in low doses. Also there are two reasons for having RLS, either its Primary RLS, inherited from a parent, so its genetic, or Secondary RLS, which is by having a underlying condition, low ferritin level can be one.
Hello Elisse,thank you for reply,i will speak with my doctor and slowly edge myself into what works for me and go with it. Il get my ferritin levels checked and maybe have a look through my family tree. Thanks again. Wishing you a RLS free time.
Hi Fairness, like Elisse says, it probably wouldn't be right for us to tell you what medication to take. The most useful thing we can do perhaps is to pass on our own experience. You may in any event find that your doctor will have ideas of his/her own. I would make a couple of points however based on my own experience and my knowledge of RLS generally.
It is VERY important to get your serum ferritin levels checked and I would do this before embarking on any medication. Raising your levels (if they are low) could cause a great improvement in your symptoms (it did for me). It is fair to say that not everyone responds to increased iron levels but most do - I believe it is something to do with genetics.
If you do embark on dopamine agonists (which were like a magic solution for me .... until I augmented), it is worth being aware that one of the features identified in the Clinical Manual of RLS by Lee, Buchfuhrer etc is that there seems to be a relationship between low iron levels and augmentation.
More generally, if you are aware before you start taking them of the dangers of augmentation then you are well ahead. Thus, as soon as you feel that the dose that was formerly effective has stopped working so well, you titrate DOWN and take a break rather than increasing the dose and you may avoid the problem altogether. I now use neupro patches (slow release ropinerole). I use them at the lowest dose (1mg) for about 6 to 10 weeks - I might try longer this time - and then I take a break and use kratom. The time on kratom resets my sensitivity to the neupro and while I am on neupro I reset my sensitivity to kratom. So far it is working reasonably well and I haven't augmented on neupro. I also take a very low dose of pregabalin for short periods from time to time to help with sleep. I do find that my sleep is much more reliable and restful when I am on a neupro phase. Kratom seems to have a sleep disturbing dimension.
Many people find that side effects prevent them from taking either dopamine agonists or anti-convulsants (pregabalin and/or gabapentin usually). You may find that one or other of these family of drugs suits you better. I found it difficult to tolerate pregabalin at the levels required to calm my RLS - actually I never got to a level where it worked hugely effectively - kratom was MUCH more effective. It is often a process of trial and error with RLS medication.
I have just finished a kratom phase and would point out that coming off kratom this time I experienced 2 or 3 days of unpleasant (though not serious) withdrawals. Some anxiety and jitteriness and of course increased RLS (notwithstanding that I was wearing a neupro patch). They passed after 3 days and now I'm having lovely calm nights. Just letting you know in case you go through something similar. I wasn't sure at the time whether it was withdrawals or whether the RLS had ramped up something rotten. I made a panicky post on here and got some lovely calming replies and it all duly settled down.
Good luck and keep us posted with what you decide and how it goes.
Hi involuntrydancer,thank you for your wonderful reply,really appreciated. I will get my iron levels checked hopefully next week and take it from there. I must admit i feel a great sense of care and understanding from everyone on this forum. I dont feel so lonely with this affliction.
Sharing my feelings is a soothing medicine in its self.
As you say- the first thing is to check your serum ferritin. It should be around the 100 mark for rls.
Secondly - keep an intake diary- food and medicines. This may throw up coincident triggers.
Thirdly - check you are not taking any medications that are antagonistic- such as antihistamines, Ssis and various others. There is a list on the rls-uk site.
You could immediately try fer bisglycinate ( Gentle iron) 25mg before bed on empty stomach with some vit c. Just for afew days- then get your iron checked.
Also you could try magnesium citrate- 200mg in the evening.
After all that- and no joy- you can investigate medicines.
rlshelp.org has a good list of medications with pros and cons.
I would strongly suggest that you do not start on pharmaceuticals until you have tried a diet approach. There are two diets that I know can improve or eliminate RLS. The FODMAP diet and the low chemical diet The FODMAP diet was developed by Monash University in Australia for IBS (but works for RLS in some people) and the Low Chemical diet was developed by the Royal Prince Alfred Hospital in Sydney Australia. Controlling my eating according to the formal diet transformed my life from RLS every night until about 5 or 7am to having 15 or more nights in a row without symptoms and usually when I have symptoms I have chosen to eat outside the diet.
The advantages are
Its free of drugs
Its cheap
Its effective if you are one of the lucky ones.
Certainly get your ferritin iron levels right so you start ahead. I still take Vitamin b12 and folate because it might help and they seem to be harmless, they might be helping.
Search this forum and read all you can about these diets. You can read information from the sources on the web. In both cases you start with an exclusion diet and then gradually reintroduce different foods until you find all the foods and quantities of them that you can eat. Talk to your doctor in case there is some reason why you might not be suitable for the diet. I think its a good idea to find a dietician who can help you with the details and with the process of reintroducing a range of foods to expand your diet to the maximum.
Some people say they would rather take drugs than restrict their diets and that is their choice but there seems to be a lot of people who are thoroughly miserable with the long term effects of the drugs. Many have no choice but I think I am extremely lucky to be able to avoid the drugs, even at the expense of a normal diet.
Good Luck let me know if I can help with information about the diets.
Thank you for your reply. I have to agree with you there are certain days where i feel my symptoms are less than others and it then makes think what i have consumed throughout the day that could be the triggers to my RLS. I believe you are right about this and i will do my research in the forum. Im a chef by trade so have good opportunity to be flexible with the foods i consume. I am reluctant to start with pharmaceuticals...i would agree with you in the fact that taking pills everyday would begin to grind (side effects/augmentation). I am managing at the moment,but this menace RLS does not seem to want to leave me anytime soon and i need to put a better plan in place,really find out what the catalysts are. Thanks again and will let you no if i have any success. Good luck for the future&rls free life.
MY take - once you start down the road of DA or other medications - how could you ever know if something simpler would have or could have worked just as well or better? With withdrawal symptoms looming you're less and less inclined to try something different. I agree - have your iron tested it is key. My RLS was severe - day and night - 2 hours sleep max with my legs elevated almost vertical! My doc said iron was "fine". Ha - it wasn't fine! Simple iron supplementation literally stopped RLS in its tracks after less than a week. I still have insomnia - but the "make you cry" RLS symptoms are gone.
Thank you for your reply. This will be my first approach. I too have have RLS day & night,it starts in my legs or leg and if left to manifest will move to my arm/s then one leg or two,its the worst feeling. The saw in the shed is ever present in my mind if i let it get that bad. I sympathise with you for lack of sleep,its totally detrimental to your daily life(work,children wife).I have suffered many days. Im feeling reasured with your results from taking the iron supplement,is it something i should continue on a weekly basis if my levels were low? What level should i aim for? On a scale of 1to a hundred where should i be,or as and when i feel symptoms. Thank you for your time & i wish you a peaceful insomnia free life.
I am 63 have had restless legs for most of my life ..started at 25 recently doctor gave me gabapentin..it really helped first time anything worked.
Please find and read my first post of approximately a month ago. I was taking Gabba too (900mgs) and because, at the time, I was taking so much medication I decided to give something away.
My choice was the Gabba, decreasing slowly over approximately 6 weeks until zero.
Eventually the pain returned and my doctor prescribed Lyrica, however the improvement was virtually unnoticeable so ceased taking.
At the current time I am not taking any nerve pain medication and don't seem to have any negative consequences because of it.
However, I could not, and will not, live without my Madopar or Siffrol ... not ever.
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