Arm effects

[SwimLyn]

More often than not whenever I have a RL ' episode' it tends to affect my arms & shoulder blades so can't use the vibrating footpads on them which helps my legs...any ideas anyone ???

[Joolsg]

Welcome SwimLyn,Are you on any medications for your RLS?

If you list EVERY med you're taking, we can help guide you better.

RLS can affect any part of the body, but the majority of people only experience it in their legs.

Ropinirole, Pramipexole and the Neupro patch can cause RLS to spread to the arms and other body parts- that's why I asked what medications you're taking.

[LotteM in reply to Joolsg]

I second Joolsg. This arm/shoulder RLS is most often typically 'augmentation', a worsening of symptoms caused by dopamine agonist medicins (DAs) that Jools listed.

[SwimLyn in reply to Joolsg]

I was prescribed Pramipexole (88mg) 1 per day in Oct BUT have resisted taking them after reading all the info about its downside on this forum.My RL is intermittent happening about 3-4 times a week for most of the night &then a couple of completely free & undisturbed ones in between so no rhyme or reason as so unpredictable.

I have had full blood tests re iron levels & waiting on results & a neurology appt pending.

I take magnesium /liquid iron mulltivits,footpads & footbaths so nothing ' chemical' & so am surprised to read the arm seizures are usually due to augmentation.....oh well another thing to add to the vagaries of RL & don't get me started on ' tingling hair,constantly going loo,& voracious appetite accompanying RL which are nearly as bad as the main problem.

Am soooo lucky am now retired as couldn't function if @ work as although had RL for over 10years its only been in last 6 months it has stepped up to severe & more frequently & more debilitating on my everyday life with very little help from dr/ specialist as they haven't got the expertise so I try to get my own information & try things out(lavender essence on soles of feet anyone ???)& this forum is a godsend xx

[LotteM in reply to SwimLyn]

Sorry to read this, SwimLyn. Good that you never took the pramipexole. RLS can worsen by/of itself, although often (not always) there is some trigger. Or what the medics call a 'comorbidity', such as neuropathy. I assume the arm, shoulder, head tingling feels like RLS? Or might it be something else? Have you asked your gp? The appetite during an RLS attacks sounds familiar; anything to distract from that awful feeling....

Have you tried journaling? To see what might trigger the RLS-attacks?

[SwimLyn in reply to LotteM]

I have written a diary for about 5 years now to document the episodes so can let my hsp consultant know whenever she can fit me in ! but have never really itemised everything for everyday but maybe should start??

[LotteM in reply to SwimLyn]

Maybe Madlegs can chime in with tips? I have only very limited experience with journaling and identifying triggers that way. Just k ow that for some people it helped, sometimes a lot.

[Joolsg in reply to SwimLyn]

I'm sorry to hear that.Well done for not taking Pramipexole. It would eventually make the RLS much worse.

First line treatment is iron. When you get blood results, ask for the actual numbers. They'll tell you results are normal/fine even when they are NOT for RLS. When the results come back, let us know the figures.

Iron supplements/infusions resolve the majority of cases.

Triggers can be spinal injury, operatipns, loss of blood, food, drink, anti depressants, anti histamines, statins, cough and cold meds.

Definitely fill out an RLS sleep chart and food/drink diary.

Many people find relief from taking magnesium citrate at night or rubbing magnesium cream on their legs.

Others by taking a ferrous bisglycinate tablet last thing at night.

[SueJohnson in reply to SwimLyn]

What was your ferritin from your iron test?

[SwimLyn in reply to SueJohnson]

Still waiting for an appointment with my hospital consultant when I sassume she will let me know & will come back to group with results & what she has prescribed.

[marigold60]

In the past, when this has happened to me I've rubbed ibuprofen gel in the affected area. It usually helped

[SwimLyn in reply to marigold60]

Thankyou will give it a go x

[DicCarlson]

I had RLS in my arms when it was severe. I never took DA drugs (even though they were waved at me repeatedly), but found relief by using iron supplements.

[Marlayna67]

I have in legs, arms, shoulders and wrists! It’s become the worst in my wrists lately. I take oxycodone and am going to transition to suboxone this week. Couldn’t do it without drugs.

[Goldy700]

I get it in my legs back, shoulder and neck. Doing yoga stretches ie sun salute really helps

[SwimLyn in reply to Goldy700]

Hi Goldy700-I have been doing yoga for over 20 years as well as swimming at least once a week & can't say they have any effect on RLS other than the enjoyment I get & stretching exercise which is good for my arthritis -pity though !!

[davchar23 in reply to SwimLyn]

Dear SwimLyn,

I am a fellow RLS sufferer and supporter of our great HealthUnlocked RLS site. I have been recommended swimming as therapeutic for RLS symptoms? I was trawling the site when I came across your post which seemed to indicate that you found no real benefit from swimming or yoga? As I currently do not swim too well or do yoga I am reluctant to spend any time on these if not beneficial? I would appreciate your comments

Kind regards

Davchar

[SwimLyn in reply to davchar23]

Hi davchar 23 -I was meaning that neither swimming or yoga has ever prevented the onslaught of RL but I would still definitely recommend any exercise you can do for it's own therapeutic reasons & I thoroughly love doing both!

[davchar23 in reply to SwimLyn]

Dear SwimLyn,

Thanks for your speedy reply on swimming & yoga for RLS. I suspected from your site name you were probably at home in the water and that it was for therapeutic reasons rather than for RLS that you swim regularly.

How are you progressing with your treatment of RLS? I have tried several RLS barriers having augmented on DAs (mainly rotigotine patches) and I am now trying to stabilise my medication around buprenorphine guided by Joolsg, Lotte M and others on this site. I am happy to share my experience to date.

Kind regards

Davchar

[Goldy700]

it only works for me for about 30 - 60 mins - enough to get to sleep. It calms my body then I dry vape some medical cannabis which is the best sleep Medicine I have come across. Exercise bike on uphill really tires my body and legs and that works for a while as well.