My Labs are back- recommendations pretty please.

[Ddski5]

Quick summary-

RLS for last 20yrs but self endured with no meds until Covid hit and exacerbated symptoms x100.

Went to sleep MD and he just started with scripting meds….Gabapentin, Pregabalin, Busibar, Doxepin, Requip, Lunesta. None of these really worked…Requip kinda did but then it did not. So I am currently taking a Magnesium Complex and 1mg Lunesta. This works one day and then not the next…RLS with me is very hit or miss. Up walking around doing balance exercises at 0200 in morn…. I eat healthy, exercise and take care of myself.

Had yearly physical and got my GP to do the different iron labs. It appears that all my labs are WNL’s, I am wondering if I should take some iron supplements anyway to see if it will decrease my RLS symptoms.

Ferritin- 112, norm is 30-400

TIBC- 319, norm is 250-400

% saturation- 39, norm is 20-50%

Iron- 125, norm is 50-160

Transferrin- 234, norm is 188-341

You advice and experience is greatly appreciated- thanks soo much.

[SueJohnson]

I gave you advice before. My advice is no different: take iron - increase gabapentin which you are no longer on which I don't know why.

[Ddski5 in reply to SueJohnson]

Yes, your initial advice is appreciated and noted, just wanted to give you updated labs and see if anything changes. Per your recent response…nothing changes- go with initial advice.

Thank you for your time.

[ChrisColumbus]

Your iron isn't terrible, although many - but by no means all - benefit from driving ferritin up towards 200+.

The eszopiclone (Lunesta) hopefully helps insomnia and shouldn't trigger or exacerbate RLS.

Magnesium helps some, including me, but does nothing for others. Some magnesium complexes contain too much oxide (alongside two or three of citrate, aspartate and/or glycinate) and can contain unnecessary - and detrimental to some - aspartame. The one you have may be fine, but you might benefit from taking straight magnesium glycinate instead, which besides being highly bioavailable (unlike oxide) can also help sleep and shouldn't lead to bowel problems.

You may have come off ropinirole (Requip) too fast - it needs to be weaned off very slowly - and then didn't take enough gabapentin for long enough, and this may have applied to pregabalin as well. Take SueJohnson 's advice on how much to take, when, for how long, and how to keep it separate from the minerals you're taking.

Good luck!

[Ddski5 in reply to ChrisColumbus]

Yes, I was unsure if all my labs were WNL’s, would it be beneficial to try to increase ferritin to a higher normal level. I will get some iron and start increasing my level.

I was taking a very low dose of ropinirole (.25mg) to begin with so coming off that was really no issue. I just noted that it worked well for the first two months and then just stopped working- did research and learned it’s no longer considered 1st line and augmentation so I stopped taking it all together.

The issue with the Gabapentin and Pregabalin is pretty much the same…started at a low dose and then it stopped working. Instead of MD increasing the dosage, he just switched meds to stay at a low dosage.

The Magnesium Complex I am taking:

Glycinate- 200mg

Malate- 150mg

Taurate- 100mg

Citrate- 50mg

How much Glycinate do you recommend? What is the low/high dosage for that?

Thanks again…

I really appreciate y’all’s help

[SueJohnson in reply to Ddski5]

You are in the U.S. so show your doctor the part of the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... that says "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)." If he still won't increase it, reply giving your city and state and I may be able to give you the name of a doctor who is more knowledgeable.

[bookish]

Hi, just a few things that might be worth consideration and testing - covid (either virus or vaccine, as with many viruses and vaccines) and stress in its widest sense caused by same will deplete essential vitamins and minerals (especially Vit B12 and Vit D as well as magnesium and zinc and Vit C and E) and mess with blood sugar as well as iron. Blood sugar imbalances may make RLS worse, as may low mag (which you are taking), low zinc, low D, C, E and particularly low B12 (and/or high homocysteine) - so some more testing would be a really good idea. You may have more than one alteration to your pre-covid state. Just for interest, ever tried gluten-free? Please don't supplement any B vitamins (esp, B12 and B9) until tested as it makes a hard to diagnose deficiency even harder. Serum testing alone is inadequate. Best wishes

[Ddski5 in reply to bookish]

That’s some great information, narrowing it down and possibly finding a catalyst is very intriguing to me. I fully understand it could be idiopathic because we still don’t fully understand all the intricacies of brain/body.

I just can’t help but to think it has to be something I am missing or need to add rather than take synthetic meds for it. I fully understand some folks have severe RLS and there are no other options.

You know before I got Covid, I was able to manage it- RLS symptoms prob once a month. Then when I contracted Covid, it blew up severely. Many times I actually thought that having bilateral BKA’s would be so much better- just crazy. It has calmed down some, but still tears it’s ugly head more times than not.

Thank you for your information.

[bookish in reply to Ddski5]

Glad to help and I hope it does. I don't think much of the idiopathic label for anything, but that is because so far personal experience has shown me that things do have a cause or causes, we just have to admit that we don't yet understand that testing sometimes lets us down and can be downright misleading. My RLS has gone, completely - it was not severe, but had it from young childhood to age 52ish, and it is familial. For me, I think gluten was the main culprit, but it also would have been contributing to inflammation and nutrient deficiencies which also could have been causal or contributory. No-one ever suggested gluten could be causing some of my symptoms and I was stunned (both neuro and skin issues for me, just went away). But we also have familial tremor (mine also gone) and 6 generations of B12 and folate metabolism issues which generally only get diagnosed once progressed to pernicious anaemia (I have supplemented increasingly for years, trying to prevent) - both B12 def. and folate def. are intricate, hugely complicated, not yet fully understood and often missed. Even with supplementing already and having made huge leaps forwards in my own health c 2019, covid in 2022 hit me and although I wasn't back to where I was in 2017/8/9 (thankfully!) I was struggling again. And I *knew* that it could hit all of the areas that I mentioned, which many didn't, so I upped my supps when I got it, but still took a hit. Almost recovered that ground now, but not quite. Some of us are more susceptible to viruses (and vaccines) and things like EBV are well-known now to be a trigger for several autoimmune conditions - I'm sure covid will not be different, and links between AIs and long covid and B12 metabolism/methylation are strong. You mighty find this interesting

sciencedirect.com/science/a...

I have small fibre neuropathy as well and spent 15 years on a bunch of meds after an incorrect repetitive strain diagnosis - gabapentin included. Did zero for my RLS and zero for the arm problems. Turns out gabapentin depletes folate and likely B12, so was potentially adding to my problem. But still the first suggestion by my neuro for the SFN, without testing or discussion. Magnesium has made a lot more difference to me and I suspect partly that is due to a slow COMT polymorphism (higher neurotransmitters, higher catechol oestrogens) which is a magnesium dependent enzyme. Happy researching.