Found this video about a Doctor who tapered off of opioid and ended up with restless leg syndrome as a result.
youtube.com/watch?v=l9_1mao...
She claims that a cream containing a mix of CBDA, CBD, Magnesium and other substances to enhance absorbability via the skin has been highly effective at treating her RLS.
It works by blocking the abnormal sensations at the peripheral nervous system level (pardon any mistakes in my understanding of the video. I am a layman in Neurology).
I didn't look at the video but I do know that helps some.
Might be worth a try. There's an email linked to the bottom. I'm gonna try and reach out to her. Maybe if I can find out more details about the formulation, I could try creating the cream using the ingredients myself.
Good idea and worth a try.
I asked the Doctor about any available products and she pointed to,
chylorelief.com/product/chy...
She also mentioned some blogs explaining the theory behind the product,
Most people tapering off opioids WILL experience RLS. It's a common withdrawal symptom.And for most people it will settle after 2 or 3 months without creams or supplements.
My sister broke her femur & was given Oxy for 6 weeks. When she stopped Oxy, she had terrible RLS. It settled completely after 6 or 7 weeks.
If your RLS responds to diet or magnesium, that would be brilliant. But bear in mind that most RLS is caused by low brain iron and can be helped by iron therapy. A lot of us have RLS caused by spinal cord damage. So diets or supplements won't help.
My RLS started after I stopped clonazepam (0.25) back in December 2023. It was very severe the first few weeks and felt al day long. Then it settled to a base line.
I have tried mag glycinate (200 - 240 mg), selenium, boron, multi vitamin, vitamin D, etc. without much success. I have also tapered off of the escitalopram I was taking for anxiety and my last dose was in June. I am currently not on any medication.
Unfortunately my symptoms persist. In the last 2 weeks I have started having symptoms in my arms as well. They feel prickly and sore and are relived by massage. Mostly noticeable in the night before bed though present less noticeably all day.
I now have 2 sets of sensations:
A) Prickly sore kind in both arms and legs. Most noticeable at night but there more or less all day.
B) Tickling and excitatory sensations only in legs. There mostly as night. Very occasionally in the evening.
I have had B for many months now ever since I stopped clonazepam. A is something that started very recently.
In a appointment in December, I was prescribed pramipex and took it for a month and a half. If was effective in the first week only and then not so much. I stopped it in Feb.
In my latest appointment in May, I was suggested to take Gabapentin but only if my symptoms were more severe. Since they weren't at the time I wasn't prescribed it.
I am now worried and more than the RLS, the anxiety about this condition is killing me. With no cure and no reliable treatments I worry about the future ((((. It's one thing if you develop something debilitating like this at 70 and a whole other thing if you haven't even started your life yet and have to face this for god knows how long.
sry for venting.
I totally understand. Anti depressants are know trigger meds for RLS. Sometimes the RLS disappears when you stop but, in many cases, it is permanent.As you were on escitalopram, that could have caused the RLS, rather than clonazepam. Often there is a delay. Some people can take anti depressants for months, years and then suddenly develop RLS.
You seem to have permanent RLS, and will need to consider meds if iron therapy doesn't work.
So first get the full iron panel blood tests and raise serum ferritin above 200ųg, ideally.
Try ferrous bisglycinate at night just before bed.
If iron pills do not help, consider an iv iron infusion.
Many of us started RLS meds in our early 30s and have been on them for over 30 years.
RLS is a neurological disease and meds control it. Unless We you have very mild, occasional RLS, meds will be required. We are dependent on meds in the same way that MS or Parkinson's patients are dependent on meds.
You have been very clear about your symptoms and to me the timings suggest that the all over, all day pricking may be something else other than RLS. The leg symptoms fit very well with the “normal” RLS timings and experience.
I experienced something similar to the all over tingling during an episode of back problems several years ago and I suspect for me it was nervous excitation caused by a combination of aggravating the spine nerves plus a big increase in anxiety and stress because I didn’t know how I was going to manage or cope, and whether it would get worse. You do seem to be quite concerned about your current situation and how it is going to play out so I might suggest that the all over tingling is not RLS and may be anxiety or nerve related. If you google all over tingling in face and arms you’ll get quite a few different views which will normally include anxiety. Personally I started pregabalin at this point to damp down the sensations - it’s often given to people with neuropathic pain - and it helped for two reasons. First it reduced the sensations and secondly it reduced my anxiety about them which made me realise that I was going to be able to manage and it wasn’t going to turn into a total nightmare. I didn’t really have any significant side effects other than a bit of cognitive fog and slight disinhibition but I came off it after a year because it wasn’t really solving anything. However it was a useful experience and moved me on. It didn’t seem to help with my RLS and I was still waking frequently, but I wasn’t really aware of my RLS at the time. Given the pregabalin can help with RLS but also with anxiety and other neuropathic sensations it might be worth looking at. In my view you have very little to lose, if you don’t like it or you have significant side-effects, then you can come off it again fairly easily and you are no worse off. Or, like others on this forum you may find it helps to a degree. Gabapentin is basically the same drug but some people find differences in effectiveness and side effects between the two. All the best.
Thank you for your insightful response. I have noticed that stress and poor sleep exacerbates the "all day pricking". Perhaps it is indeed some other sort of paresthesia.
I will take it up with my doctor in my next appointment.
Chest infection and RLS. Not to be recommended.
RLS symptoms relieved when going to bed
Could Shallow Breathing be related to RL symptoms?
Is there a tool you can use at home to record your RLS symptoms?
Do you want more money to be spent on RLS research?
