Ankle manipulation and RLS/PLMD jerking

[thorp]

I am an 82 year old woman with severe RLS and PLMD which I have had for about 5 years now.

I take 1800 mg gabapentin and 500 micros clonazepam each night. And I still have to get out and walk for 30 minutes twice or three times every night

In March of last year I had a total knee replacement as a result of which I have contracted lymphodema in my left lag and ankle

I already had bruised bones in my ankle which made walking painful and difficult

In an attempt to improve my walking abilities, I am receiving treatment for my left leg and ankle lymphodema from a MLD practitioner who is also a trained physiotherapist

She has reduced the swelling around my ankle somewhat over the weeks .

Today , at around 11 am, as she manipulated the sides and top of my ankle, I suffered major RLS/PLMD jerking.It was very disturbing.

My therapist had never seen anything like it.

She said that perhaps the reduced swelling had left some nerve endings exposed around the ankle ,And therefore her manipulation in this area triggered the nerve endings which in turn triggered my RLS/PLMD

It was most disturbing as I normally only get RLS and PLMD at night and not during the day

I know we have some amazing experts on this forum.

Has anyone else suffered like this from either MLD or physiotherapy on their ankle?

Can anyone tell me why and how this RLS/PLMD jerking might be triggered?

Should I continue with the therapy to reduce the lymphodema swelling?

Or stop because it is triggering PLMD jerking?

Any advice would be gratefully appreciated

Thank you

[Joolsg]

That is a difficult question.The leg swelling and lymphodema are responding to the physio treatment, but you had a major episode while being treated.

Has it settled again? If so, I would continue with the treatment to further reduce the swelling.

Swelling by itself can trap and inflame the nerves.

It sounds as though your RLS still falls into the very severe category.

Have you considered switching to a low dose opioid? 1800mg gabapentin clearly isn't stopping your symptoms.

[LotteM in reply to Joolsg]

Good and thoughtful reply from Joolsg. I second her.

[thorp in reply to Joolsg]

thank you

[Eryl]

In my experience, PLMD is usually caused by the ingestion of artificial preservatives like sorbates (E202 etc). It's used in all margarines, many dips and sauces and I believe some fruit juices and wines. That's one of the reasons I avoid all processed food.

[Munroist]

I have experienced short lived RLS during the evening from manipulating nerves so I think I may know what you mean. For me it was my feet most recently. I was sitting with one leg across the other and my foot felt a little achy or something like that so I rubbed the arch and immediately my leg had to move and felt exactly like RLS which I normally get at night. I’ve also had this when I’ve rubbed round the ankle under the ankle bone. My nerves are permanently excited anyway after a back problem some years ago so I get tingling and other sensations and I don’t like close fitting shoes and I think stimulating them brings on RLS. There are connections between neuropathy amd nerve damage and RLS, and I’ve read articles suggesting that intense exercise causes nerve excitation which is why it frequently makes RLS worse so I’m definitely open to the possibility that massaging nerves can cause RLS. For me it’s temporary and goes away in minutes unless I’ve done a hard exercise session which can give me after effects for a couple of days. There are quite a lot of nerve endings in the feet and ankles so it seems plausible to me. I agree with others to continue treatment but try to work out where the sensitive areas are and avoid them.

[Swillet50]

Do you have electric couch or motorized bed? If you do make sure you unplug them...

[LanaCSR in reply to Swillet50]

🤔

[NeuroSeeker]

I have not had that from physiotherapy, but it did happen to me when I was getting energy work do e (Reiki). My practitioner has also never seen anything like it. I think Rls and PLMD sometime just respond weird to energy movement. Your therapist was doing a lot with your ankle, and energy is all part of it...

Anyway, it's happened a couple times.

In re: your undertreated RLS and PLMD: the dopamine agonists are bad news (they split my life into "before" and "after"), but a small amt of hydrocodone is considered a responsible treatment ( not sure about age limits, but not sleeping seems worse than a bit of opiate!).