Help! Restless legs!

[Frunobulax]

I know many people are down on taking so many meds....especially ones that may have side effects....I tried everything under the sun and finally my doc prescribed clonazepam taken before bed and I can finally sleep without the terrible restlessness I used to get...My little brother has RLS too and the only thing helping him is clonazepam too...much better for me than constant problems the RLS caused!

Clonazepam helps some people with RLS, but at a hefty price. Getting rid of it is almost impossible and many people get severe side effects after a few months. I tried it, but if anything it exacarbated the symptoms, and I had a month of terrible insomnia after taking a low dose (0.5mg) for just 6 weeks.

Note that restlessness is NOT restless legs. Restless legs sometimes causes insomnia, but if anything people are more tired and move only because that's the only way to relieve symptoms. Are we talking about the same disease?

I would hook my toes on the bottom of the mattress and pull them up against it on and off for a while and that always seemed to ease it, as they go mad if they get even a bit warm.

Any physical activity will relieve the symptoms, temporarily. For some people that's enough to fall asleep, they are the lucky ones

Still, it doesn't hurt to follow the protocol I outlined. Most people with mild RLS (that is, not requiring dopamine agonists or other medication) can control their RLS by avoiding food triggers and perhaps taking a few supplements. But again it's highly individual what works and what doesn't (there are a lot of parallels to ME/CFS there), so a bit of experimentation is in order.

I often wondered if RLS is connected to low stomach acid. Most people develop it around 40-50, right at the point where stomach acid starts to drop naturally. And acid blockers (PPIs) seem to be a very common medication among RLS patients.

 

[BeADocToGoTo1]

As was noted above I also remember reading the iron and ferritin levels needed to be checked with restless leg, as well as your complete thyroid panel (including all six of these tests: free T4, free T3, reverse T3, TPOAb and TgAb antibodies (to exclude Hashimoto autoimmune), TSH.)

Here is a note from Chris Kresser:

https://chriskresser.com/4-little-known-causes-of-restless-legs-syndrome/

 

[Strawberry]

I had some beef the other day and definitely the restless feeling went away. I guess iron was the fix! Now to try to remember to have these tests ran:

your complete thyroid panel (including all six of these tests: free T4, free T3, reverse T3, TPOAb and TgAb antibodies (to exclude Hashimoto autoimmune), TSH.)

 

[Frunobulax]

I had some beef the other day and definitely the restless feeling went away. I guess iron was the fix! Now to try to remember to have these tests ran:

I'm afraid iron is very unlikely in this case. It takes months to change iron levels, and plenty of RLS sufferers take iron supplements in high doses and none have reported immediate relief.

If beef fixes the problem, I'd say it will most likely be one of the various amino acids that fixed the issue, or perhaps some of the vitamins that act faster in your body. There are some people that get relief from taurine, for example.

 

[Likaloha]

As was noted above I also remember reading the iron and ferritin levels needed to be checked with restless leg, as well as your complete thyroid panel (including all six of these tests: free T4, free T3, reverse T3, TPOAb and TgAb antibodies (to exclude Hashimoto autoimmune), TSH.)

Here is a note from Chris Kresser:

https://chriskresser.com/4-little-known-causes-of-restless-legs-syndrome/

Thanks for putting all the blood tests together for me.. I am seeing my PCP soon, and hope to see a new endocrinologist soon too, so will take copy of tests that I want to have done!

 

[BeADocToGoTo1]

Thanks for putting all the blood tests together for me.. I am seeing my PCP soon, and hope to see a new endocrinologist soon too, so will take copy of tests that I want to have done!

If your PCP agrees to check the thyroid, here are a couple more tyroid related tests:

• selenium, iodide, iron, ferritin, iron binding capacity and saturation, and DHEA.

 

[Likaloha]

If your PCP agrees to check the thyroid, here are a couple more tyroid related tests:

• selenium, iodide, iron, ferritin, iron binding capacity and saturation, and DHEA.

Thanks again...My PCP is pretty agreeable about ordering tests that may be beneficial for me! I'll copy this list and take it with me....Thanks for the help! It is greatly appreciated!!!

 

[EddieB]

It was well past tolerance... Maybe two heaping teaspoons? Also my iron has been very high for a few years so it doesn’t quite seem likely but I guess possible?

Also on top of the two large spoonfuls of magnesium calm last night, I took two nuun tablets this morning. I’m still extremely uncomfortable.

Hello,
Can you give a little more info about your high iron level? Is it high ferritin? I have high ferritin-low serum. And some other test results that the doctors can’t explain. It’s possible to have high levels and still be deficient. And low iron can cause restless leg, and I have it bad.
Apparently our bodies have a mechanism that can “hide” iron from bacteria during illness. This normally would only last a short period of time, like with the flu. But what if this got out of control, as with chronic illness? I have a lot of questions for the hematologist next visit.

 

[Strawberry]

@EddieB I'm not quite sure. It is high ferritin, but I know when I was a child I was often anemic, but I knew the feeling of anemia, and when to stop taking iron pills. I did have a virus a few weeks ago, so maybe my body hid the iron? My restless legs are gone now.

 

[EddieB]

Glad you feel better.
My doctor wants me to try taking some iron. So far pills make me sick. I’m using the transdermal patches, and it seems to be helping with the restless leg. Looking into lactoferrin, supposed to be anti virus as well.
I’m very intrigued with the “hidden iron” thing....

 

[Frunobulax]

Hello,
Can you give a little more info about your high iron level? Is it high ferritin? I have high ferritin-low serum.

High ferritin low serum means you have silent inflammation. Some people believe that this is a natural reaction of the body, because bacteria need iron to grow. The body retracts iron to the stores to combat the bacteria.

Ferritin is a very bad marker of iron status where it is needed. Unfortunately few doctors know this, you need to measure transferrin% at least, I think there is a receptor test that is more reliable for picking up deficiencies but I'm not sure.

 

[Cipher]

High ferritin low serum means you have silent inflammation. Some people believe that this is a natural reaction of the body, because bacteria need iron to grow. The body retracts iron to the stores to combat the bacteria.

Ferritin is a very bad marker of iron status where it is needed. Unfortunately few doctors know this, you need to measure transferrin% at least, I think there is a receptor test that is more reliable for picking up deficiencies but I'm not sure.

It seems to be called "Soluble transferrin receptor", here's a quote from the wikipedia page:

Blood testing of the soluble transferrin receptor (sTfR) is used as a measure of functional iron status and the investigation of iron deficiency anemia. Ferritin, a routine investigation for anemia, is an acute-phase reactant, and may be elevated in states of inflammation, thereby falsely indicating that iron stores are adequate.[2] Because sTfR is insensitive to inflammation, it can detect anemia in patients with preexisting inflammatory states, and is particularly useful in distinguishing between the anemia of chronic disease and anemias caused by lack of iron intake.[3]

 

[Frunobulax]

It seems to be called "Soluble transferrin receptor", here's a quote from the wikipedia page:

Thanks. However, the wikipedia focus on anemia is typical but misguided. Low iron has other consequences (like Restless Legs). If you have anemia you'll also have a ton of other symptoms that you develop earlier. Ah well...

As with many other vitamins and minerals we need more research to know exactly what happens if we become deficient.

 

[EddieB]

Thank you for responding.

Ferritin levels seem to be one of those moving targets. My 350 level that was considered high 2 years ago would now be in the normal range. Yep, they moved the goalpost, now it’s 400.
That tells me that they really don’t know, and what ever most people have must be normal.

From my limited knowledge (I’m trying to educate myself as I go) the next marker to look at is C reactive protein and ESR (sediment rate). An elevated level indicates inflammation. Both of mine are complete normal.

Hemoglobin is normal, so no anemia. Bone marrow normal, but no iron stored. The doctors are stumped.

Trying to piece things together, when my ferritin was higher (410) back in May, I was feeling better, And now at (259) can barely get around. Serum iron and transference saturation% followed the drop as well.

So my thoughts are, if our bodies perceive an invader, real or not, and are playing this shell game with iron, I would expect these tests to be practically useless as far as determining available iron. Do we feel this awful because our cells can’t get the iron they need?

 

[Frunobulax]

So my thoughts are, if our bodies perceive an invader, real or not, and are playing this shell game with iron, I would expect these tests to be practically useless as far as determining available iron. Do we feel this awful because our cells can’t get the iron they need?

I don't think so. I had iron IVs (as treatment for RLS) and they changed nothing. But then, it might be different for you

 

[EddieB]

I don't think so. I had iron IVs (as treatment for RLS) and they changed nothing. But then, it might be different for you

Exactly. If we are unable to use the iron we already have, adding more may change test levels, but we won’t feel any benefit. Rather, I’m questioning the possibility.

Did iron help your restless leg? I’ve been using trans dermal iron patches. Restless leg seems improved, but overall I feel worse.

I ordered some lactoferrin, seems like a possible missing link in this?

 

[Strawberry]

My restless legs are gone now.

I lied. I woke up after only sleeping two hours with horrible restless legs. After an hour of fidgeting uncomfortably, I finally got up and had some magnesium and potassium. It would sure be nice to know what causes this! I'll eat more beef this weekend on the slim chance that it helped. I hope you guys are able to get some relief, too.

 

[EddieB]

Sorry to hear the RL came back. I had a little bit last night, but not bad. I don’t want to jinx it, but it seems those goofy iron patches (PatchMD) are helping keep it under control. You might give them a try.

I’m very concerned about taking iron, even though the hematologist told me to. Although the RL is better, overall I feel worse, stomach pain and reflux. Waiting for the lactoferrin I ordered, I’m reading very good things about it.

 

[Frunobulax]

Did iron help your restless leg?

Sadly no. IV's have a response rate of about 60%, so I got unlucky. All other forms (transdermal, oral) have a much lower success rate (AFAIK).

 

[Pearshaped]

@Strawberry have you tried B1?