Restless Leg Syndrome RSL

[Loa111]

Does anyone on here experience Restless Leg Syndrome RSL?

RSL has been bothering me the last few years since DX, just in my left leg and it comes on at nighttime usually a couple of hours before bedtime. I'm continually kicking out & shaking my leg in bed before I get to sleep. It is not painful, it's just a weird uncomfortable sensation.

I do not know if me having an advanced DX a few years ago caused it or not, damage from being sick with advanced hiv? I did mention it to the ID Doc before, they ran blood tests for diabetes & a few other tests which came back clear.  Or it could be genetic, as I remember my grandmother used to be jumping around years ago complaining of strange feelings in her leg.

Either way it is annoying & I'd love to get rid of it! 

[Jim Allen]

Not a clue, but I hope it can be resolved, as it obviously is bothering you.

I do not know if me having an advanced DX a few years ago caused it or not, damage from being sick with advanced hiv?

Yeah, HIV itself can cause issues like neuropathy etc. It could be HIV or an infection you picked up when sick did some damage; I can't say.

Keep us posted, it will be interesting to hear if you find a solution to the problem.

[J.R.E.]

Hi,

Read this article from the Cleveland Clinic, and see if there are questions you can get out of it, to talk to your Doctor about. I think this is an informative article on RLS.

https://my.clevelandclinic.org/health/diseases/9497-restless-legs-syndrome#:~:text=People%20of%20any%20age%2C%20including,United%20States%20population%20has%20RLS.

Ray

[J.R.E.]

And yes, you are right.  It could be genetic.

[Loa111]

Thanks folks. That's a good article on RSL.

I do try natural methods to ease it, like walking/gym at night, and I must get back on the magnesium supplements, I ready too that calicated magnesium can help one sleep.

It's an incredibly annoying issue. My wife gets annoyed with me as she is trying to sleep, I am shaking & moving my leg around to try ease it. 

[Shazam9cd4]

How is your restless leg syndrome going?   About 8 months Prior to being diagnosed i developed a serious bout if restless leg syndome.  Prior to then  I would on occasion get RLS when flying.  Anyone who experiences RLs knows how annoying and uncomfortable it can be.  Like an internal tickling/itching that prevents you from being still.  Early in i found  if i took an aspirin before a flight I would never get RLS.   So not a major issue until last year.

Then it slowly started effecting me at home without flying always at night when lying down to sleep.  Id have to get up from bed and stretch and stretch and stretch.  Sleep became very challenging and this was impacting me 3-4 nights a week. 

Finally my GP  prescribed Pregabalin and this stopped it completely!  Was a life saver.  A few months later i was in the hospital and diagnosed poz. Its hard to say RLS got worse because of the impact of HiV but i suspect so.  Docs dont know much about the cause of RLS.  Some indicate iron deficiency is the culprit.  If you havent found a solution id recommend trying pregabalin but be careful with dosage. I was on 150mg a only at night.  I was on it a few months and missed one night.  What a horrible night and my first experience with drug withdrawals.  The intense and overwhelming feelings of anxiety dissappeared as soon as i took the next dose.  And from that point i cut back to 75mg.   After my diagnosis,  a month hospital stay and a couple months more of all the meds they were giving me (brintillex,  immovane,  xanax) I slowly weaned myself off all of those addictive meds. (That wasnt easy).  I decided to also try getting off  Pregablin which came last and frankly was the easiest to get
Off - and relatively quickly.  However, my RLS came back albeit not as seriously. I experimented with doses and found 25mg was sufficient to eliminate RLS.   After what is now a year after my ooz diagnosis i no longer Need daily pregabilin.  So perhaps it is related aomehow to immune function.   These days i will still take pregabalin
once a week to help me sleep or on the odd occasion i might feel RLS.

Would be curious to know if you found any other solutions? 

[Loa111]

Hi Shazam9cd4,

Yes the RLS is still niggling away at me many nights. Last check up with my ID Doc, we decided that if I can keep tolerating it and it does not become more acute, then it is better to stay away from meds to ease it.

I did tell the doc I read that paracetamol is supposed to ease it, but not proven either, so doc said no harm to pop a paracetamol if I think it helps, just not to take any more than 4 per day (which I'd never do anyway). Doc assured me there will be no long term effects or damage from taking a paracetamol each evening.

Does Pregabalin also have an anxiety calming effect like a Valium or Xanax?

I know myself if I was able to have a Valium or Xanax each night then for sure that would ease my RLS, however doctors in my country will not prescribe these type of meds at all unless there is a major major reason.

[Shazam9cd4]

Hi! Loa111- i dont know about a calming impact per se other than the calming impact of not having restless leg and getting a good night sleep!  It is usually prescribed to treat neuropathic pain.  I believe my low non addictive dose is much more safe than xanax or others.  I am mostly over the RLS but on a rare occasion take the lowest
 dose (25mg) if i sense the RLS coming on.   I also take 75mg one night a week max for a good night sleep (if i havent been sleeping well).  Docs are all ok with this program i laid out.  And its non -addictive. And the infrequency doesnt build a tolerance so im assured that nights good rest!

I also have on hand immovane in event i took my weekly pregabalin and cant sleep a couple nights in a row, and have xanax also on hand in case i am feeling particularly anxious with lots going (i dont use for sleep) .  I limit xanax to half the standard pill and once a week at most.   Xanax was hard to come off after the hospital and i dont want to go back there.  Immovane is the one docs dont like to prescribe because of its quite addictive qualities.  But they are ok with my once a week plan (at most) combined with my xanax,  and lyrica plan.   

I dont recomend anyone follow this plan without docs advise but it works for me  and  my docs all well on board with this.  They know im analytical and dont have an addictive personality.  Important to know yourself and recognize any danger signals to over use.