For those who want to manage their RLS without medication, there are recent science articles on Paeoniae Alba, a plant used in traditional Chinese medicine.
It seems interesting. I'm too far down the medication route but for those newly diagnosed or with milder RLS or those who do not want to take Alpha2Delta ligands or opioids, it may help.
If anyone does try it, do let us know the results.
Interesting.
thanks Joolsg, that’s really interesting. I might give it a whirl
Thanks, Jools! Following. Hopefully someone who tried this will report back with some info. I have invested so much money in things and supplements and they didn't work. 
Me too! Cupboard full of supplements and gadgets. I quickly realised none would help.
Hi JoolsThanks for this, interesting.
I am planning on seeing a, (recommended), Chinese Herbalist soon. Will mention.
😊
Thanks for sharing Jools.
It certainly does look to be a promising therapy (if the studies can be relied on).
A few paragraphs from a systematic review and meta-analysis published in 2019 jumped out at me....
The assumptive therapeutic mechanism of Paeoniae Radix-containing herbal medicine for the restless legs syndrome is via activation of adenosine A1 receptors (A1Rs). Paeoniflorin, which is a major active component of Paeoniae Radix, is known to activate A1R in various experimental studies and clinical applications [28,29]. A1R is a member of the adenosine receptor group of G protein-coupled receptors with adenosine as the endogenous ligand [30]; it shows inhibitory function in most of the tissues it is present in Refs. [31,32]. In particular, it acts in the synapse to reduce synaptic vesicle release, and slows metabolic activity in the brain [33,34]. In experimental studies, Paeoniae Radix has been shown to activate A1Rs to prevent paclitaxel-induced mechanical allodynia [35], promote non-rapid eye movement sleep [36], and improve neuroinflammation and dopaminergicn eurodegeneration in the MPTP Parkinson's disease model [37].
Furthermore, it has been recently noted that A1R may be a marker of brain iron deficiency [38], which is one of the major pathological mechanisms of restless legs syndrome. One experimental study reported downregulation of A1R and dopamine D2 receptors in the brain cortex and striatum of rodents on iron-deficient diets [38]. This result suggested that A1R downregulation plays a key role in the hyperarousal state of restless legs syndrome [39]. Therefore, A1R activation by hyperaesthetic Radix is thought to play a role in improving the hyperaesthetic state of restless legs syndrome via actions on dopaminergic neurons.
Conclusion
In conclusion, combination or single therapy of Paeoniae Radix containing herbal medicine in patients with restless legs syndrome can exert significant treatment effect. However, the quality of the studies that were analysed was low, and there was insufficient data to draw concrete conclusions for the effects and safety of herbal medicine on restless legs syndrome. Further studies are needed in the future.
Another limitation of this meta-analysis is that all studies included in the analysis were conducted in China. A previous study has indicated that clinical studies conducted in China show high rates of success.
Kwon, S., Jin, C., Cho, S.-Y., Park, S.-U., Jung, W.-S., Moon, S.-K., … Cho, K.-H. (2019). Paeoniae Radix-containing herbal medicine for patients with restless legs syndrome: A systematic review and meta-analysis. Complementary Therapies in Clinical Practice. doi:10.1016/j.ctcp.2019.03.015
Thank you for sharing. I will look into it after the holidays.
thanks Jools I will look into this x
Thanks for sharing Joolsg! We can only hope and pray that it works for some people. At least it is comforting to know the scientific community is not abandoning us😊
Hi joolsg can this be taken along side pregabalin and codeine phosphate if a herbal remedy id try anything to kick this RLS thanks nick
That I don't know Nick. So sorry to hear the pregabalin and codeine aren't working.Pregabalin and Oxycontin did not help my severe RLS after withdrawal from Ropinirole. I had an iron infusion & ferritin went up to 785. No improvement.
However, low dose Buprenorphine has been miraculous. Zero RLS since the first night.
Maybe you could ask GP for a one month trial. If GP reluctant, maybe see a good neurologist by phone consultation who will prescribe Buprenorphine.
Prof. Walker at Queen Sq will prescribe low dose opioids.
Dr. Buchfuhrer in California says pregabalin often doesn't help after Pramipexole/Ropinirole and he thinks it's because they cause permanent damage.
Buprenorphine affects different opioid receptors and that's maybe why it works for many of us who have failed all other meds.
I have seen a neurologist who was good in sending me for a MRI scan on back ? And a CT scan on head ? still awaiting the results and indeed if he finds anything that will help and prescribe any different medication I'm not climbing the walls yet at night but not far off the thing I find most hard is trying to hold down a full time job as a postman with sleep deprivation ! Hope apart from RLS I find you well regards nick
Interesting. MRI and CT scans can show MS, Parkinsons or back and bone issues but aren't used to diagnose RLS.Only a case history of symptoms can do that.
It sounds like the sleep deprivation caused by uncontrolled RLS is severe.
Fill out the RLS severity scale and see what your score is. It's on the RLS UK website.
Sounds very severe to me.
In that case, as the pregabalin isn't working, you really need to switch to another med.
The Mayo algorithm is now best practice but sadly, the UK NHS and NICE guidance doesn't reflect the latest best practice and advice.
There are very few UK neurologists who know enough about RLS to treat it effectively.
Make sure whoever you see doesn't put you back on a dopamine agonist. As you experienced severe augmentation on Pramipexole and had such a tough withdrawal, another dopamine agonist like Ropinirole or Rotigitone ( Neupro patch) will very quickly cause the same thing.
I think your only option now is raising your serum ferritin above 100, preferably 200 by oral pills every other night, or an IV Injectafer infusion.
If raising ferritin doesn't help opioids are the last medication option.
Many of us are on low dose opioids.
Which neurologist are you seeing and do they know much about RLS.
Ask if they're aware of the benefits of iron infusions, if they know about the Mayo algorithm and the Massachussetts opioid study for RLS.
As you know, I also had a terrible time on Ropinirole. Pregabalin and Oxycontin for 5 years after withdrawal just didn't cover my RLS and it flared up every night.
I now have zero RLS, night or day on Buprenorphine.
Prof. Walker at Queen Sq is an option if your current neurologist isn't knowledgeable or helpful.
mayoclinicproceedings.org/a...
When I have my appointment to discuss results I will go armed with this info thank you
Thanks for commenting on Paeoniae Alba (Traditional Chinese Medicine: Bai Shao). I am going to consult with a TCM practitioner about it. Apparently it acts as an anti-inflammatory, which could explain its reported efficacy. Stay tuned!
Greetings Joolsg, I have seen a few studies with White Peony Root / Paeoniae Alba, and have decided to begin a trial on myself. I'm presently taking 200mg Pregabalin + 1.5-3 gram kratom per night. I've had to take equivalent of approx 300mg pregabalin previously (1800mg gabapentin) to obtain sufficient results, but hate the side effects - so I've been trying to get by with less and hope to see meaningful results with the WPR.
Notably the elderly woman featured in one case study experienced not only a substantial reduction in symptoms, but also those benefits were maintained for months after ceasing the use of the WPR. The authors implied that the WPR may have actually had a curative effect on her RLS! ... I'm hoping that the supplement "moves the needle" in a good way for my case, but do realize the limitations of these studies.
Details: I've started on 3,000mg / day divided amongst 3 doses, began 3/10/24. My plan is to trial for at least a month at that dosage. The patient from the above case study started with approx 2,000mg WPR per day, then decreased to approx 1,000 mg a day after about 5 weeks (based on symptom improvements). After approx 2 months, symptoms completely remitted and she was taken off the WPR / herbal regime fully. I've chosen 3,000mg / day because I'm 50+% heavier - if I remember, she clocked in at just below 50 kilos.
Do post the results of your trial. We need alternative remedies to help the many RLS patients who don't respond to the limited meds, or who can't tolerate the side effects. Good luck.
Results from my trial with White Peony Root:
I've taken 3,000mg/day from 3/10/24-4/23/24. I feel the supplement may have helped modestly, it's a bit challenging to decipher the results as I've been limited to only a partially effective dose of pregabalin (200mg) and I'm having a rough time with side effects from that. As a result, I've used inconsistent quantities of Pregabalin but typically 150-200mg. Also I've used varying amounts of Kratom and occasionally resorted to 1/4mg ropinirole to deal with the dreaded symptoms.
I may trial it again, but am about to get Rx for Horizant, so I want to see what that does on its own. I recently met with a specialist who thinks that I can get by with substantially less gabapentinoids (300 or 600mg) that way and also substantially less side effects. I hope he's right, I needed 1800 mg Gabapentin to get decent relief and presently 200mg pregabalin is only helping marginally - I still have to get up out of bed multiple times every single night at that dose & I feel like I have sudden onset dementia as a side effect!
Let me know if you have any questions, I've been in a fog for months now but did manage to take some notes.
Sadly, gabapentinoids often do NOT work for those of us who have been on dopamine agonists beforehand. They certainly didn't help me. Nor did 25mg Oxycontin, taken with 150mg pregabalin.
You may have to push for a long half life opioid like methadone or Buprenorphine. They would also allow you to get off that last 1/4 dose of the dreaded Ropinirole and the kratom, which loses efficacy over time.
It will be difficult to judge any benefits of the white peony when you are still on gabapentinoids/Ropinirole/kratom.
Agreed, and gladly obliged to the community here!
If you're suffering from RLS, ead this. I suffered for 20 yrs before finding a solution.
