What to do for restless body?

[Nosleepatall]

What to do for restless body? My whole body seems to be jerking now, notjust my legs! Its awful, have had rls for years but this is worse. I can’t tolerate any of the meds given for rls. Have relied on topical remedies. Please! Anybody!

Kathy

[Lindy14]

Hi Nosleepatall

I can't offer much advice, but have you been on Prameprozole? I have had it for over a year and initially I didn't think it was any good for me. It did appear to work on odd occasions and it suddenly occurred to me that it might be something about the way I took it.

Then, Halleluia! it worked out that it took over 3 hours to get into my system after which I got the desired effect.

I hope that someone within this privileged group can come up with some suggestion that can help you.

Lindy14

[Nosleepatall in reply to Lindy14]

Thank you for responing! Maybe I should try it again. Just took 50 mg of Tramadol, that might help tonightl

Kathy

[Hidden]

If you're currently taking any Dopamine Agonist (DA) for your RLS i.e. pramipexole, ropinirole or rotigotine then your worsening symptoms may be caused by "augmentation" due to these drugs.

If you've recently stopped taking any DA, you may be suffering withdrawal effects.

If neither of these, then it seems something else is happening.

The first thing to consider is if you have an iron deficiency. You can ask your doctor for blood tests for serum iron, transferrin, ferritin and haemoglobin.

If your haemoglobin is low and/or your ferritin is below 75ug/L then you may benefit from an oral iron supplement. Here's a link to more information about iron therapy for RLS.

sciencedirect.com/science/a...

In addition, if your magnesium, vitamin B12 or vitamin D levels are low, then you may benefit from taking supplements of these.

If you suffer from diabetes or thyroid problems this could be contributing to your RLS.

Another thing to consider is if there is anything making your RLS worse which could be avoided.

This usually means that you're taking a medication for some other condition which is aggravating the RLS. There is quite a long list of such medications.

There may also be dietary factiors in your RLS, generally alcohol, caffeine and added sugar should be avoided.

Any food which leads to inflammation may be making things worse. This varies between individuals but common diets tried for RLS are low carbohydrate, low oxalate, gluten free, lactose free or anti-inflammatory.

In terms of medication, if dopamine agonists have failed, the next option would be an opiate.

[Nosleepatall in reply to Hidden]

Thank you so much for responding so quickly. You must have been awake all night too! I cannot tolerate any of the meds for rls, so many side effects. I am extremely sensitive to almost all meds! Only use topical creams and sprays and homeopathic remedies, plus a warn shower before bed and sometimes again in the middle of the night. Dont drink, smoke, no sugar, dairy etc.. I do have low iron and take iron everyday. It is still low but medicare won’t pay for an infusion. I have a Compromised immune system and up until March has been receiving gammaglobulin Infusion’s monthly for 22 yrs. But Medicare change the qualifications to receive the Infusion’s and now I’m just waiting for my number to get low enough to qualifyagain . I only missed it by three points. Anyway, this restless body thing is new and horrible! I took 1/2 a Tramadol last night and finnally got to sleep about 5am ugh!

Again, thanks for your help. I’m getting ready to try to sleep again! 🙏🙏🙏

Kathy

[Hidden in reply to Nosleepatall]

I'm in the UK, it was midday when I wrote to you yesterday!

As regards the iron, I hope you have had your serum iron, tranferrin, ferritin and haemoglobin tested.

If you're suffering iron deficiency anaemia i.e. low haemoglobin then this is in some respects a double problem. This is because it's brain iron deficiency (BID) that's associated with RLS and if your haemogloboin is low, any iron you take is used to correct this anaemia first and is unlikely to correct the BID.

The low haemoiglobin has to be corrected first before you can begin to correct the BID.

In addition, there are limitations on how much iron you can absorb. Oral iron is generally very poorly absorbed, hence the need for IV infusions if you can get them. I appreciate how difficult this is, it is also very difficult to get an infusion here unless you have severe anaemia.

Part of the limitation is how high your ferritin level is. It's accepted that if your ferritin is below 75ug/L (ng/mL) then you can benefit from oral iron, but it's not so helpful if it's over 75. I suspect however, that yours IS under 75.

The other limitation is that when you take oral iron the body reacts by releasing a hormone called hepcidin and this hormone prevents the absorption of any more iron from the gut for up to 24 hours. Hence once you've taken the iron, there's no point in taking any more either that day, or the following day.

Strangely then, you will actually benefit more from oral iron if you take it only once every two days, NOT daily.

It's also best to take it on an empty stomach and take a glass or orange or a vitmain C tablet at the same time.

Some people do find tramadol helps with RLS, but it can also cause rebound and some would claim it causes augmentation.

In which case it has been found that extended release tramadol doesn't cause the same problems that immediate release tramadol does.

Alternatively, you might find oxycodone, methadone or buprenorphine better if you can access it.

[Joolsg]

Hi Kathy,

What drugs and what doses are you currently taking? Whole body RLS is usually a sign of Augmentation on Pramipexole or Ropinirole. I had it on 2016. Read Manerva’s reply as he sets it all out. If it’s pramipexole or Ropinirole causing augmentation the only solution is to go through withdrawal very, very slowly and start on other meds like opioids or Gabapentin/pregabalin. Other drugs never help until you’re off dopamine agonists and through withdrawal.

[Nosleepatall in reply to Joolsg]

Thank you! Please read my message to Manerva.

[Tobias10]

I have had diagnosed RLS for 20 years now and was on Mirapex for most of those years until I was taking more than the prescribed dosage and developed augmentation. My newest neurologist took me off of the drug and put me onto the Neupro patch which seems to help somewhat, but when I was taken off of the Mirapex abruptly I experienced horrible withdrawal and that was the first time I ever had spasms in my arms in addition to my legs. Fortunately, the spasms in my arms has gone away, but it was frightening to think that might be my new normal. During that time I did find that exercising helped to redirect my focus on my spasms - I went without any sleep at all for 17 days and it was horrible. I am now supplementing with Calm, a magnesium gummy - not sure if it really does a lot but mentally I feel like I'm taking something more natural and my PCP put me on Tramadol. I am now managing my RLS via my PCP because the last neurologist was pushing me to take Methadone and I refuse to take a highly addictive opoid. Have you tried hot baths? That sometimes works for me, although not as much as it used to. Maybe ask your physician about the Neopro patch to see if that might help. I wish I could offer more solid suggestions but this disease is exhausting to deal with.

[Madlegs1 in reply to Tobias10]

Don't be too hard on the opiates. At the very low dose you would be taking, there is little chance of addiction. Unless you are an addictive personality.

You are already taking an opiate - Tramadol. Methadone, or better still- Buprenorphine, would be a lot more effective.

You can research it here by searching "Shumbah"

There is so much hysteria about opiates that interferes with scientifically researched treatments.

And the innocent patient is the one that suffers.

Mind yourself.

[Hidden in reply to Tobias10]

Hi Tobias, I am horrified!

Firstly, taking you off the pramipexole and replacing it with neupro may have been accepted as alright at one time, but both pramipexole and the rotigotine in the patch are dopamine agonists and hence the patch is just as likely to cause augmentation as pramipexole. The best way to treat augmentation is to stop ALL dopamine agonists.

Secondly, it is dangerous to stop pramipexole (or any dopamine agonist) suddenly, not simply because this causes severe withdrawal effects but also it can possibly cause neuroleptic malignant syndrome, which is potentially fatal.

If the neurologist asked you to stop the pramipexole and immediately replace it with the neupro, this is a less dangerous thing to do. However, it can only be done like this safely if the dose of neupro was equivalent to the dose of pramipexole and I very much suspect this wasn't the case. I suspect that the switch from one to the other may have been an overall considerable reduction in dopamine agonist dose and hence the withdrawal effects you experienced.

It would have been better to reduce the pramipexole slowly.

You might consider taking legal advice about taking action against this neurologist.

Good that your PCP put you on tramadol, but I can only say it's not the best opioid for RLS and although I don't need an opioid myself, methadone may be a better option. I agree with Madlegs.

[Joolsg in reply to Tobias10]

Tobias, Methadone is a much better & safer option for you than dopamine agonists. The neurologist knows about RLS. Your PCP clearly doesn’t or he would not have prescribed another DA.

Low dose opioids for RLS are not addictive unless you have a history of opioid abuse.

Read the studies- all the top RLS experts now prescribe Methadone or Buprenorphine, both are safer and more effective than the dopamine agonists.

mcusercontent.com/068feaf31...