Restless in Ireland

rudedoodle · Post by **rudedoodle** » Thu Feb 24, 2011 6:57 pm

Hello,
Hoping to vent frustrations here about RLS. I've had it the past 8 years (I'm now 30).
Feels like electrical charge building in limbs that I HAVE to move to release. I hate it the most in my arms.

Post by **Polar Bear** » Thu Feb 24, 2011 10:21 pm

Wow.... someone else from N. Ireland.

Welcome to the site and you will find so much useful information.

I have been a sufferer for about 33 years and the symptoms are now 24/7, have used medications for approximately 6 years, with some success.

We all vent here at some stage, often in the middle of the night when we have been trying to walk off some of the symptoms and just want to scream and get some sleep.

I wonder if you are getting your care from your GP or have you discovered a specialist/neurologist in the area that I have missed ??

rudedoodle · Post by **rudedoodle** » Thu Feb 24, 2011 10:42 pm

I haven't spoken to my GP. I see the doctor often due to long term depression, so by the time I've told her whats going on with that, I feel a bit silly saying, "oh and I can't stop moving my legs at night".
I'm afraid of how trivial it seems!

Post by **Polar Bear** » Fri Feb 25, 2011 2:15 am

If you use the link in my signature it will take you to The Mayo Clinic Algorithm which is a guideline for medications to treat rls symptoms. I took this to my doc and he used this as guideline for treatment.

Also if you are being treated for depression, these are a class of drug that can exacerbate rls.

RLS is not trivial, it is a neurological movement disorder that affects all aspects of your life.

I suggest you see your GP telling him you have researched the problem and you need his help. ... showing him the Algorithm.

If your suffering has been bad enough to lead you to search and find this site, then it is bad enough that you need help.

rudedoodle · Post by **rudedoodle** » Fri Feb 25, 2011 6:54 am

Thank you. I'll print that and take it to my next appointment. Very useful!

Post by **badnights** » Fri Feb 25, 2011 4:37 pm

Not trivial! Never trivial. Most doctors nowadays are at least aware of it, even if they don't understand what it's like to have it, or how to treat refractory cases; so part of your battle is done.

If you'd like some reading material, I have a list of really good stuff that I could post. The more you know about it, the better able you are to cope with the madness and to guide your own treatment and ensure it's effective.

Depression is associated with RLS way more than chance would dictate. Although researchers are uncertain if one causes the other or if some base condition causes both, it seems clear in at least some cases that the lack of sleep from RLS causes depression. So who knows, that problem might improve once your RLS is taken care of

. A psychiatrist pointed out to my GP that chronic lack of sleep can cause the symptoms of every known psychiatric disorder, even psychoses! So maybe a change of focus to your RLS will help both problems.

Here's hoping for your torture to end and your GP to plunge right in to learning about RLS and helping you and others (maybe even PB lol)

sleepdancer · Post by **sleepdancer** » Fri Feb 25, 2011 11:49 pm

So much is still not clear about RLS and depression, like whether RLS causes bad sleep that results in depression, or if meds for depression cause RLS which in turn affects sleep and compounds the problems. Sure hope science picks up the pace in finding answers. One question in my mind is since the 1st line of treatment for RLS/PLMD is dopamine agonists, and since dopamine is associated with pleasure, any lacking in dopamine could look like depression (as in lack of pleasure) - right?

Rudedoodle, your description of the buildup of an electrical charge is how I often described my PLMD when experiencing augmentation. Are you on any meds known to be problematic?

Post by **ViewsAskew** » Sat Feb 26, 2011 4:26 am

Interesting, Sleepdancer. My RLS is also best described as an electrical charge. As a child, it was mild and it worsened with age, but it's always been an electrical charge. Three generations of us have it, actually four now that my niece is starting to have mild episodes. We all describe it the exact same way. Until I came here, I thought everyone felt it as we did.

I am almost never aware of my PLMs (like you, Sleepdancer, these were much worse for me, at least until augmentation). When I augmented, I did have wicked PLMW - it feels so different from RLS to me, lol. Not at all electrical, but rather like spasms I couldn't control.

Once of the weirdest thing about these disorders is that it's hard for even those with it to have a common language.

For example, some people have pain. I'm clueless what they must feel. Mine never hurts. It's annoying, it's electrical, it heightens my anxiety by 100%...but it's not painful.

No wonder it took so long for the medical community to start paying attention to us!

I am guessing that it's because there are so many genes for it that we have such variation. Plus the combination of genes from each parent...

rudedoodle · Post by **rudedoodle** » Sat Feb 26, 2011 7:39 am

The only meds I'm on are Fluoxetine, but if I ever take cocodamol for say toothache, then that zaps the RLS for that night.

I don't have jerky legs once I am asleep, so once I eventually get to sleep I can stay asleep, thank god.

I'm not sure what augmentation is, I've a lot more reading to do.

Post by **Polar Bear** » Sat Feb 26, 2011 9:37 am

As I understand it, Fluxotine is the same as Prosac which generally would be likely to aggravate rls symptoms.

The codeine in the cocodomol is likely helping the symptoms. It is fortunate that at present cocodomol is sufficient to cover your symptoms.

rudedoodle · Post by **rudedoodle** » Sat Feb 26, 2011 10:51 am

Fluoxetine is the generic name for Prozac, so yes it's the exact same thing.
I'm 30 now, so I expect my symptoms to only get worse over time.

sleepdancer · Post by **sleepdancer** » Sat Feb 26, 2011 7:44 pm

In regards to pain, neither the RLS nor the PLMD itself caused me pain. It was what the PLMD did to me that caused the pain. As you can see in the video, the wild flailing caused my joints to be in sudden strained positions. My knees have been as abused as... well, a soccer player comes to mind. The long term repetitive motions have degraded the cartilage, and there were times my knees were badly wrenched. For the last few years I get a regular series of injections including steroids and the gels that help cushion around the cartilage. My hips and lower back have paid a price too. When at its worst, my muscles hurt horribly due to never getting the rest that sleep is designed to give. But the electrical charges I felt that triggered the movements were not painful.

rudedoodle · Post by **rudedoodle** » Sat Feb 26, 2011 7:49 pm

The electrical feeling is only made worse by the inability to explain what it actually feels like to someone who hasn't had RLS. So glad I found this forum to share with other sufferers!

sleepdancer · Post by **sleepdancer** » Sun Feb 27, 2011 12:56 am

It is hard for those who haven't experienced something to fully comprehend just by description. A friend helped me with that once. I was trying to reason with her about a decision she was making based on my understanding, when she looked me in the eye and told me, "The things we don't share you can't understand." At that moment I realized that I didn't have to understand, I just had to respect and validate her experience and not second guess what she told me. Wish I'd figured that out earlier in life.

Yes, it is frustrating when even our best descriptions leave others looking at us blankly. Glad you've found a place where your experience is not foreign.

Restless Legs Syndrome (RLS) Discussion Board

Restless in Ireland

Restless in Ireland

RLS and Depression

Pain as a symptom

Electrical charge sensation