I KNOW WE ARE ALL DIFFERENT. EVERYONE SAYS SO.

[sweetiepye]

Since the beginning.....I have RLS in one leg at a time. Never in both.

I get it in both arms at a time

In my face alone

or in my stomach alone

I'm interested in your experience.....

[Hidden]

I've never had it in my face but I usually only get it in my right leg, right arm, right shoulder or abdomen. I can experience any one alone or any combination of 2, 3 or all of them.

When I was suffering augmentation it usually started in one place then spread to the others.

If I get it in my abdomen it's just the unpleasant sensation and urge to move (akathisia).

When I first started with RLS it was just the akathisia, in my legs. As it got worse it turned into twitching, which I find less unpleasant than the akathisia.

Since weaning off pramipexole and taking gabapentin I occasionally get mild akathisia for a few minutes say 2 - 3 nights a week and the odd leg "jerk" about once a week in either leg alone or shoulder alone.

I've very rarely had symptoms in my left side. However I do have nerve pain in my left side.

[Jphickory]

Always in my left leg. Rarely in my arms -

maybe 20 times in the last 40 years

[sweetiepye in reply to Jphickory]

Interesting isn't it. Do your legs look the same ?

[Ert223]

I have RLS in my calves... cramping in the feet.

I started on clonazepam. then had to add Norco,then valium.

Then had valves in veins collapsed that helped alot with severe cramping.

And purchased a near infrared light 850 nm that stops the pain when the

Norco quits working. And have a Rebuilder Machine that runs a electrical

current back and forth through my legs. That helps with foot pain and neuropathy. And Kratom Bubble bee seems to be the best ...The Kratom is

for pain and it does not slow your breathing down so you cannot over dose on

it. Kratom is related to the coffee plant. Withdrawals minimal.

I wish I had started out on LDN that may of been the best...but once you

get on Narcotics cannot mix that up with the LDN.

Good luck...I do a lot of magnesium like 1,000 mgs or more per day...that is

for constipation ...never worked on RLS some have had luck with it.

[YodaDog]

Sorry, but what is LDN? Thanks

[Joolsg in reply to YodaDog]

Low Dose Naltrexone. Seems to help a small number of people- but it cannot be taken with opioids as it’s used to wean people off them. Also used for auto immune diseases.

[Madolegs]

Iv'e never heard of RLS in the face or stomach but iv'e never talked to anybody about it till i joined . i only get it in one leg at a time and that's bad enough the left mainly if the right decides to start its worse for some reason and i have a right old time with it the wife says i look like i'm playing football without the ball. About 2 months ago my left arm has started not very often but it looks like i'm going to be plagued with it in them as well.

Some of the symptoms iv'e read augmentation, akathisia iv'e never even heard of . i'm not even sure if i should come off Ropinirole as it looks like there are side effects in all of the tablets so i'm a bit unsure about changing and as my doctors don't seem to know much about RLS i'm a bit concerned what he will give me that's if he will change them

[Hidden in reply to Madolegs]

I may be using the word akathisia incorrectly, it means a feeling of restlessness and an inability to keep still.

It's shorter and more appropriately evil sounding than "unpleasant sensation and the urge to move", but it may be wrong.

It's usually caused by antipsychotic drugs.

[Madolegs in reply to Hidden]

Now i'm really worried .Iv'e just been reading what Joolsg said about coming off Ropinirole and it increasing by 1000% and no sleep. Iv'e just booked an appointment to see the Dr week Friday and if he takes me off Ropinirole that the last thing i need.

[Hidden in reply to Madolegs]

It is possible your RLS symptoms will worsen when you withdraw from ropinirole, includuing insomnia can't be predicted how much, you may also get withdrawal symptoms which aren't necessarily the same thing.

There's a couple of things I'd suggest to minimise the impact of withdrawal.

One is to replace the ropinirole with something else and do that BEFORE withdrawing from the ropinirole

Two is gradually reduce the dose of ropinirole in small steps and as slowly as you can bear.

While you are reducing and expecially when you finally stop altogethe some people use an opiate if they can persuade a doctor to prescribe one and/or a sleeping tablet e.g. clonazepam.

You could try thinking of your doctor as a partner in deciding on your treatment plan not you just being a passive recipient of whatever he orders you to do. Not always easy, but ultimately, legally you have to consent to any treatment.

[Madolegs in reply to Hidden]

Thank you i will print this out and take it with me i get on quite well with my Dr so hopefully by showing him all the information iv'e printed off about RLS i get some relief

[Hidden in reply to Madolegs]

OH dear, please don't print out anything i might write, I have nothing that qualifies me to to prescribe any treatment plan and it doesn 't always go down too well with doctors.

Better to print out articles from credible journal sources.

Here's a link to an article about gradual withdrawal

ncbi.nlm.nih.gov/pmc/articl...

Here's a link to an article with an overview of RLS treatment. Click on the link to "Augmentation" on the left and read the section titled "Management". This gives several options, I don't think options 3 and 4 (continuing DA use) are a good idea.

uptodate.com/contents/treat...

I followed option 4 which worked for me. i.e.

"Alternatively, dopamine agonists can be discontinued and replaced with alpha-2-delta calcium channel ligands. We typically introduce the new drug and increase the dose to an effective level BEFORE slowly reducing the dopamine agonist - "

[Madolegs in reply to Hidden]

sorry i won't print anything you wrote i got a bit carried away

[Hidden in reply to Madolegs]

No problem.

By all means print out the articles and/or the excerpt/relevant bits.

[Madolegs in reply to Hidden]

yes i will

[John_naylor]

Mine starts in one limb, usually my left hand/ arm and then left leg and moves clockwise around my body. If I’m lucky it can stop in the first limb but at the worst it can start a second lap.

[juweave]

Hi Sweetiepye,

My RLS also alternates between left and right legs and always has done. I rarely get it in both at the same time. It usualIy starts in my groin or thigh and radiates down. I have an RLS friend who also experiences this alternating pattern. It's really strange, isn't it!

Since I've augmented and things have got worse, I also get it in my buttocks and sometimes my shoulder, usually on the left side. I also sometimes get it in my abdomen leaving me unsure as to whether it's RLS or some intestinal problem (it's usually RLS, though, as it comes and goes in an RLS sort of way). I've never had it in my face.

[dklohrey]

As you say, we are all different which is why it is so difficult to find the solution to RLS. I get the symptoms in one leg at a time and never above my waist. It usually is in either calf or either hip, occasionally just above either knee. I have been on ropinirole for most of 25 years but I know that is unusual as well, to have one drug be effective for that long. It is a continual experimental process. I know I have to avoid caffeine, alcohol (this is a big one for me) and sugar. I also know that a hot shower before bed is helpful. For me compression socks work but I know for others it does not.

[Hidden]

sometimes I have it only in my left leg or at least much more strongly there.i get it across my shoulders and back. when it is very bad I seem to move my head around and also scratch under my hair.

[Mona7]

My RLS attacks previous injuries. I have hEDS which is a tissue disorder causing joints, bones and ligament damage to name only a few issues. RLS starts in Rt arm and wrist. When it starts frailing I know I'm having an episode. Then the urge to move is everywhere in the body.

[Annieapple]

Mine starts in one leg, then moves to the other, then in the arms & body. Buttocks & arms always the most painful. If I can deal with it in the early tingly stages in the leg, (Epsom Salt Bath, stretches, codeine etc) it usually subsides but once it gets to “have to move” stage it becomes a full on attack that lasts for hours/days. I started running 3x a week in the mornings 6 months ago & this has been the very best thing. No other type of exercise has ever helped, & usually makes it worse afterwards. Running has changed my life!! I am still on my 2mg patches, avoid sugar, drink lots of water & eat as much fresh veg & salad as I can. The RLS mainly stays away but now & again it lets me know there is no magic cure!!!

[sweetiepye in reply to Annieapple]

I am happy for you. It is good to hear positive information and drug free solutions .

[Homestead]

I get it in one leg at a time .It will start in one leg then move across to the other leg, sometimes it feels like it's in the bottom of my feet.And l just want to keep rubbing them.Also l get it in my hands and arms.

[sweetiepye in reply to Homestead]

Can you imagine if we got it every where at once. Please tell me that could never happen.

[MumofSam]

Hi Sweetiepye

I have suffered from RLS my entire life, and it was always in both my thighs. Since weaning myself off Tramadol and Pregabalin last year, which I was prescribed for spinal problems, I now get it in my left arm from shoulder to elbow, my neck and the base of my spine. Sometimes all at the same time, which is sheer hell as I’m flailing about all over the place!

I’ve just started seeing if taking a 50mg Tramadol capsule at bedtime will help. Wish me luck!

[sweetiepye in reply to MumofSam]

I absolutely wish you luck.

[MumofSam in reply to sweetiepye]

Thanks. Unfortunately it didn’t work last night and I don’t want to increase the dose as it could be a slippery slope. Will have to go and see my GP - hopefully one who knows something about RLS. Will need luck with that one!

[Jane190]

Hi I told my doctor that I’m also getting rls in my arms and stomach and she said that I haven’t because you only get it in the legs but my arms and stomach get the same sensations as my legs .

[MumofSam in reply to Jane190]

You need to tell your doctor that she’s wrong. In theory you can get RLS anywhere there are muscles, but it’s just far more common in the legs. I get it in my left arm, neck and lower spine.

[Nlthomp]

Hi sweetiepye, I’ve had RLS since my 20s, but started taking 2mg Ropinirole at bedtime about 10-years ago. I get RLS in both legs, but not together. Recently, I’ve been taking 100mg Tramadol at bedtime and have been experiencing all sorts of side effects... ie. uncontrollable body twitching, excessive sweating, nausea and dizziness. I used to be able to tolerate Tramadol when I was younger, but I think those days are over. Not sure what to do now. Good luck to you