Alternative, non-medication treatment

[Cmart]

I had mild RLS for nearly 30 years and never needed any medication. In the last 12 months it has worsened to the point that I went to a neurologist and was diagnosed with RLS and Cramp Fasciculation Syndrome. I began taking medication. First Pramipexole, which did not help at all. I’ve now been on Ropinrole for 6 weeks and it’s not helping either. I am an active person. I do a lot of biking, kayaking, paddleboarding, yoga, CrossFit, etc. and not sleeping because of RLS and CFS is now affecting my active lifestyle. I’ve taken melatonin to help me sleep but it isn’t working. I just got Skullcap and hope it will help me sleep. I am going to stop the meds, since the aren’t working and will stop the sleep aides if they don’t work. I’ve been doing research online for alternative treatments and found some interesting information on PEMF therapy for RLS and neuropathy. Has anyone tried and/or had any success with Pulsed Electromagnetic Field(PEMF) therapy?

[Hidden]

Hi and sorry to hear you're having these problems.

I know little about CFS and I doubt if most members of this forum know anything too.

Apologies then I can't help with that.

I do know that PEMF therapy has been around quite a few years (decades) and has been found to be of benefit for "fracture nonunions", i.e, where bones have broken and and haven't healed back together again.

More recently there is evidence that PEMf can help with other codnitions as well, mainly pain and inflammation, but I see no mention of either RLS or CFS.

There would of course be no harm in trying a device, if so, please let us know how you get on.

I also know that various devices have been approved by the FDA in the US. However some companies have been prosecuted for promoting their devices for the treatment of conditions for which there is no evidence of effectiveness.

As regards your RLS.

Both the drugs you have tried so far are called dopamine agonists. They both work in the same way. Apart from levodopa which was an older remedy for RLS, but now no longer used, they are reputed to be the most effective for RLS.

It is said that they may take a few weeks to start working, but most people who start taking them say they are effective immediately. This is what I experienced. The first night I took pramipexole my severe symptoms completely disappeared.

Of the three dopamine agonists used for RLS, pramipexole is the most potent.

Usually, RLS is diagnosed according to the validated RLS diagnostic criteria. The diagnosis is made by taking a medical and family medical history, possibly a brief neurological examination and by comparing symptoms to the RLS criteria. If the symptoms match all five criteria then RSL is confirmed.

There are no investigative tests for RLS, that can be justified under normal circumstances.

Sometimes, but rarely it seems if doctors aren't sure about the diagnosis, either one of two tests can be tried.

One is the "histamine challenge test" where a one or two doses of a sedating anti-histamine are given. If the RLS symptoms get worse, this may confirm the diagnosis.

The other test, which is more significant, is to give one or two doses of a dopaminergic drug, i.e. either levodopa or a dopamine agonist. If symptoms improve, this may confirm the diagnosis.

Bearing that in mind, also taking into account you have CFS and not actually knowing the symptoms you believe to be RLS then I suspect you do NOT have RLS. Hence the normal treatments for RLS won't work.

There are non-pharmaceutical remedies for RLS that are known to be effective. The disadvantage of some of these is that there is no guarantee that they'll work. The diasadvantge of more or less all of them is that they take time to work, months or longer.

Again, they will only work if you do actually have RLS.

In which case I'll mention the main ones, but won't go into detail. If you do defintely confirm you have RLS then you can get more detail.

The main cause of RLS is Brain Iron Deficiency (BID). This cannot be directly tested under normal circumstances but can be roughly indicated by blood tests for iron, principally serum iron, transferrin saturation and ferritin levels.

Note that BID can exist in somebody with RLS even if there is no sign of anemia

The recommendation for somebody with RLS is that if ferritin is below 75 then start on iron therapy.

The next main thing to consider is whether in fact there's something that's making your RLS worse, "triggers" or "exacerbating factors". The remedy then is to avoid these, if possible. Or treat them if they're treatable.

There is a whole host of these, some are common to almost every person with RLS, others depend on the individual.

They include alcohol, sugar, smoking (tobacco) and caffeine. (common)

Medications for other conditions, (common) mainly antidepressants, sedating anti-histamines, anti- emetics and a many others.

Any inflammation, a known inflammatory condition, or an undetected sub-clinical inflammation. Hence bowel conditions and/or diet. (Individual).

An underlying condition such as anemia, hyporthyroid, diabetes, kidney disease, neuropathy, (diabetic or hypoxic), poor circulation.

Some mineral vitamin deficiencies e.g. magnesium, vitamin B12 and vitamin D.

I suggest your first option is to confirm the diagfnosis of RLS.

Here's a link to the validated RLS diagnostic criteria

irlssg.org/diagnostic-criteria

Let us know what you think.

[Cmart in reply to Hidden]

Thank you for all the information. I was diagnosed with RLS, CFS and neuropathy. All of my blood work is normal. I may try a PEMF device that has a money back guarantee so I can rerun it if it’s not helpful. I’ll post here with results.

[Hidden in reply to Cmart]

Hi again.

It's just a suggestion, but it's still worth checking your symptoms against the RLS diagnostic criteria, it's not unusual for it to be misdiagnosed.

The failure of the dopamine agonists, in the absence of a full description of your symptoms, still suggests you do not have RLS.

I shudder when somebody with RLS says all my blood work is normal.

If that's what you've been told then it's not actually of any help.

If all your results are normal, this doesn't mean you don t have BID. A ferritin level of 12 is "normal" and for somebody who does not have RLS, their brain iron levels could be OK.

For somebody with RLS however their ferritin needs to be at least 200.

See this link.

sciencedirect.com/science/a...

Assuming you DO have RLS, whether you want medication or not, the first treatment to be considered is iron therapy.

If a doctor never said tbis to you they're not very knowledgeable about RLS.

Could they be trusted then to diagnose it.

[Madlegs1 in reply to Hidden]

"I shudder when somebody with RLS says all my blood work is normal."

Love it!!!!🥴😜

[DicCarlson]

Yeah - double check the Ferritin levels - it is a big deal - mine was 49 with raging RLS - docs said no problem here! Ha, iron supplements helped immediately.

[kicker2 in reply to DicCarlson]

What level did you need to get to before your RLS symptoms got better?

[DicCarlson in reply to kicker2]

I read of a home remedy - Blackstrap Molasses (it contains iron) and it "cut into" the RLS one night. I said hey - that's something! I found the Johns Hopkins Neurology website and this caught my eye "A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy on average improved RLS symptom after 3 months." I discovered the Ferrous Bisglycinate Chelate and literally within a week the severe RLS was almost gone! Ferritin level went to 105 within 3 months. Protracted insomnia remained but the horrible urge to move was gone.

I continue to wonder how and why was I iron deficient in the first place.

[Cmart in reply to DicCarlson]

That’s great! I’ll look into it myself. Anything is worth a shot. I can deal with the RLS if it didn’t disrupt my sleep. The lack of sleep is wearing on me. I’ve been taking tylonel pm all week and it works but it’s not a long term solution. Good luck to you!

[DicCarlson in reply to Cmart]

FYI - the insomnia is probably a neurotransmitter imbalance - Glutamate (the excitable neurotransmitter) over GABA (the relaxing neurotransmitter). This is why with as little as 2 hours sleep I could get up - go to work - not really feel sleepy at all - Glutamate 24-7! There are plenty of strategies to increase GABA and decrease Glutamate - but none have really worked for me yet. I try new stuff all the time.

[Cmart in reply to DicCarlson]

That’s all we can…keep trying.

[Henshaw241241]

Hi I have had RLS for years and I have been on pramipexole no good went into orientation very bad then I went back to the doctor's then she asked if I would like to see a neurologist very good checked me all over then she put me on pregabalin 1 tablet at 6 pm and 1 tablet at 9 pm 75 mm with 2 codeine 30 mm very good the best thing ever happened no more climbing the walls walking outside at night nice to have a good night's sleep wonderful you take care all the best Tony Henshaw 241241

[Stdorn]

I avoid melatonin like the plague. It was one of the first otc things I tried when my rls progressed to giving me insomnia. After taking the recomended dosage I my rls became many times worse than it have ever been moving from my legs only to my legs, back, shoulders, and arms. It left me wiggling my whole body for many hours instill it finnaly wore off.