New guy with questions, needing help

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Post Reply
Bullett
Posts: 2
Joined: Thu May 07, 2020 12:26 pm

New guy with questions, needing help

Post by Bullett »

Hi everyone. So....I’ll try to make as brief as possible. I’m a 55 y/o male, I’ve had rls since I was a little kid. We believe I have had Lyme disease since a child also. I have managed to deal with this terrible affliction ( rls) and get through life. Luckily, I rarely have many issues with it during the day. Sometimes it happens, but pretty rare. Nights have been rough to say the least but I have figured out how to function. Usually when I jump n bed at night, I assume the position. Basically I get in a fetal type position, but do it on my hands and knees instead of on my side. I basically stay in this position until I lose most feelings in my legs and then I stretch out on my stomach and try to fall asleep before the rls symptoms return. If I don’t fall asleep first, I do the cycle again and again, until I fall asleep.

So I was talking to a friend last fall and she mentioned she had rls type issues and went on premipexole and hasn’t had any issues since. I had read into a forum many years back and was horrified by what I was reading. So many people on so many hard drugs. It scared the heck out of me and I told myself I had to try and soldier on somehow. This was probably 15 years back. Anyhow, I guess I figured medicine had hopefully caught up with rls and premipexole was hopefully something I could take and never look back. So...I took .125mg for the first couple months and really didn’t notice much of any difference. So, about 4 months back, I started taking .25mg. It really didn’t help me much. I guess what I can say is maybe it took my rls symptoms from my left leg and equally dispersed them to both legs. So...my rls wasn’t quite as sharp in my left leg anymore, but was now in both legs but not quite so harsh. I think as time went on for the next couple months, I think it was maybe making my rls a little worse overall. I just didn’t see much gain or much sense to keep taking the premipexole. So I started weaning myself off. I dropped back to .125 for a week and then as of last night I stopped. I’ll just say the withdrawals are absolutely brutal. Thank god I had access to some oxycodone. I take 5 mg when I go to bed at night, and it helps quite a bit. If I take anymore than that, it gives me insomnia. I also might add, I take 300mg of Gabapentin that I was prescribed a couple years ago for a back injury. I’m hoping to get off that as well, sometime after I get through the premipexole withdrawels.

I have several questions that I would like to ask. I’m sure if I read enough through the forums, I would find some of the answers. Honestly, my anxiety is so high right now, I think it would benefit me to not read too much right now. I do have anxiety issues as well but it’s not severe. I take an occasional benzo if I need to. I also take. I also take something called Alpha GABA Pm before I go to bed each night. It is 800g of L-Theanine and 6mg of melatonin. I also take a teaspoon of liquid Magnesium Chloride at bed as well. Sometimes I can’t help but wonder if the GABA PM is hurting me more than helping. Seems from things I have read, Melatonin can aggravate rls in some people?

So....I am going to try and get off the Premipexole and give it a few weeks to work out of my system, and then hopefully wean off the Gabapentin. Again, that was prescribed for a back injury a couple years ago, not sure if it has any affect on my Rls. I am going to try and not take anymore Oxycodone once I get by the harshest withdrawals.

Back to my questions: can someone point me in a direction to pursue after I get off the med and return to my baseline rls? It appears that iron might be of benefit? What tests should I ask my doctor for to get a good idea on iron/ferritin? Is it ok to take an iron supplement even if bloodwork shows I’m not sufficient? Are there any extra vitamins that might help? I take a multivatim each morning. I’ve also read that magnesium glycinate would be a better option than Magnesium Chloride? Anyone have any opinion on that? Are their any other things that might help me?

I live pretty clean, I try to eat well, I eat very little sugar or gluten. Very little caffeine as well. Usually, if I can get to sleep at night and get by the first few hours, my rls eases up or disappears towards morning. I might try some behavioral changes as well. Luckily my rls doesn’t seem quite as severe as some, I want to try and hold off on trying more meds until I absolutely am in agony. I know a guy that had extremely severe rls, he got a small med pump sewed into his belly and it puts med right into his spinal fluid. This has been a godsend for him. He needs far less meds than when he did orally. He doesn’t seem to have the need to keep upping the dosage as much either. Anyhow, any advice would be greatly appreciated.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: New guy with questions, needing help

Post by stjohnh »

Bullett wrote:can someone point me in a direction to pursue after I get off the med and return to my baseline rls? It appears that iron might be of benefit? What tests should I ask my doctor for to get a good idea on iron/ferritin?
RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub

Bullett wrote: Is it ok to take an iron supplement even if bloodwork shows I’m not sufficient?
Yes.
Bullett wrote:Are there any extra vitamins that might help? I take a multivatim each morning. I’ve also read that magnesium glycinate would be a better option than Magnesium Chloride? Anyone have any opinion on that? Are their any other things that might help me? I live pretty clean, I try to eat well, I eat very little sugar or gluten. Very little caffeine as well.
All these are good, and there are people who have had good results with all of them. However, other than iron, there is no vitamin or mineral that has shown as consistent improvement.
Blessings,
Holland

Bullett
Posts: 2
Joined: Thu May 07, 2020 12:26 pm

Re: New guy with questions, needing help

Post by Bullett »

Ok, thank you for the advice and info. I will sort through that.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: New guy with questions, needing help

Post by badnights »

The gabapentin might be helping you a bit. It improves sleep and for some people lessens symptoms too. If you do stop it and your sleep seems more fractured, think about starting it up again. It is commonly prescribed for WED/RLA.

Iron is probably your best choice right now, as Hollland described.

re supplements, most North Americans are deficient in vitamin D, and we can supplement up to 4000 IU daily without risk, according to my GP. Some of us have noticed improvements in depression and in WED/RLS symptoms after boosting our D levels; the scientific results are mixed (but limited).

I use a variant of your front-down fetal position - I call it the froggie position. I think the only difference is that I spread the legs sideways at the hip, knees still bent (hence frog); so I need a pillow or two to support the torso. The stretch in the groin muscles seems to help. Sometimes I have to make sure the toes and ankles are flexed with the toes digging into the mattress, which adds a calf and foot stretch. And always, the knees, wrists and elbows are flexed. sigh. All that scrunching and stretching helps, but the scrunching has occasionally caused me soft-tissue injuries.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Post Reply