Hi all - new here

[Jr85]

Good morning all,
(3am here in the UK and Once again I can’t sleep due to the damn legs!!!!)

So a bit about me m:

I’ve experienced RLS since I was about 9 years old although I can’t say I knew it was a thing - I thought jet was just a strange quirk or my personality.

I honestly couldn’t say it it’s primary RLS or secondary m on account of the fact my dad had died of a heart attack at home when I was 9 whilst my mum and siblings attempted a to save him. As traumatic as that was there was then a period where my grieving mum basically became an alcoholic who was constantly out getting drug leaving me and my bro to fend for ourselves - often going without dinner. Truly that wasn’t the hardest part though, for me it was the birthdays my mum forgot or the Christmas Eve when she came home drunk and was telling me, aged 10, how she had nothing worth living for and was going to kill herself. No doubt all of these things played their part. I imagine my severe ADHD didn’t help either.

For a time the RLS wasn’t a big deal. Once or twice every couple of months I would get this annoying and unpleasant compulsion to love my legs when in bed so I couldnt get to sleep and would fidget all night.

So predictably, my school performance dipped as I was just exhausted. I struggled waking up in the morning, I was always late, looked a real mess, scruffy as to be expected and found it so hard to concentrate. The real annoying thing for me was that the work itself was easy to me but being able to focus was impossible so I would just act out by misbehaving in class and being aggressive and angry all the time.

Anyways the funny thing is that although RLS drives me
Nuts at night I did notice a few times or rather other people pointed out to me during the day that my little legs would be going off like thinker constantly.

So as I grew up the RLS got worse and worse and worse except it shouldn’t be called restless legs syndrome but restless everything syndrome as it effected my legs, arms and whole damn body!!

It became more and more frequent - 3/4 nights a week. So now I’m working in a high level government job I’d sorta working 80+ hours a week but i can’t get any sleep ever so I’m just constantly exhausted.

So finally at 33yrs old I speak to my GP. Told him I don’t even know Where to begin explaining it as I feel totally stupid but I get this feeling in my legs and before you knkwnkt he has printed off an RLS leaflet and writes me a script for ropinirole. So I leave the office elated, script hand ready to be cured..... except rush for me, ropinirole might aswell have been speed or crack as god darn did it keep me awake 20x worse!!

So then we work our way through/
* Levodopa
* Pramipexole
* Rotigotine

And nope, nope, nope. Some made RLS worse. Others made no difference to RLS but gave me the worse ever hangover and drowsiness the day after making work impossible.

Then came:
* Gabapentin, then
* Pregablin

Help with RLS? Not even remotely but they did reduce / remove all feeling from my genitals making orgasm impossible. Fun times. THANK GOD the effects reversed once I quit the Meds.

So then I had had enough of the drugs and tried some other stuff: psychotherapy, 3 rounds of CBT, physiotherapy.. excercise late at night before bed. Deep heat on legs, tiger balm on legs, CBD oil on legs. Nothing - just a big fat waste of money.

So the it’s back to the Go at my wits end. Then come the next round of drugs one at a time:
* Codeine / DHC
* Mirtazipine
* Amitriptyline
* Promethazine
* Propranolol
* Diazepam (15-20mg)
* Lorazepam (2mg)
* Iron supplements
* Lidocaine
* Capsaicin cream
* Diclofenac cream

Again, no difference at all. Just a shrinking bank balance, increasing desperation and a feeling like I’m drowning in medication.

So my GO admits defeat and I’m referred to a consultant neurologist.
* 2-4mg Clonazepam PRN WITH 5mg morphine sulfate

ClonazepAm helped right away. Felt like a miracle drug. Morphine made me nauseous, acted like a stimulant and gave me the worste constipation Of all time. So he swaps Oramorph for Oxycodone.. which may aswell have been crystal meth or something as I was bouncing off the walls. So then we switched to fentanyl 100ug transdermal which... ok.: it helped me sleep but the trouble is.. I could never bloody wake up either!

Meanwhile the Clonazepam not working as well.

So let with neurologist again and said look.. forget the opiates they’re doing nothing. Clonazepam is fine but I either need a stronger dose OR preferably swap to something more hypnotic or sedating as ultimately I Just need to sleep. We spoke about:
Loprazolam, Temazepam, Nitrazepam or Zoplicone. I got a resoundinf: NO.

Instead I’ve been kept on 2-4mg Clonazepam PRN
AND 800mg... Gabapentin... why?!!!

I’m the meantime I’ve been referred to a movement disorder specialist which is fine but now GO refusing to give the clonazepam alongside Gabapentin and also won’t consider a hypnotic...

So I feel like it’s 30yrs on but back to square one and have no idea what else to do or where to turn to. I’m constantly exhausted. I work crazy hours, I have a 2yr old girl to look after and I’m driving the mrs insane too!.

I’m genuinely feeling like this is rock bottom and don’t know what else to do. I am sorely tempted to seek the sedatives I need outside of a medical environment but know how stupid and dangerous that would be. But what else do I do?!

Have I missed anything? Anyone have any ideas I could try or a doctor they could recommend ?!



Thanks for listening,

Jr

[stjohnh]

I’ve experienced RLS since I was about 9 years old although I can’t say I knew it was a thing - I thought jet was just a strange quirk or my personality.

....
Have I missed anything? Anyone have any ideas I could try or a doctor they could recommend ?!



Thanks for listening,

Jr

Welcome Jr to the RLS community. You will find lots of help, suggestions, compassion and knowledgeable people here.

The two things I see missing are: 1) IV Iron and 2) reasonable trial of opioids.

1) IV Iron: oral iron generally won't do the job. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the guidelines:
https://www.sciencedirect.com/science/a ... via%3Dihub

2) Opioids. Opioids have been the standard treatment for severe RLS (which you have) for a long time. You need to have a trial of stonger opioids at reasonable doses. Only a very small number of people with severe RLS do not respond to opioids. Your doctors have not given them a reasonable trial.

Iron is the way to go if you can get it. If not, opioids.

[ViewsAskew]

Hi Jr85 - how is it going now? I found it interesting that the DAs didn't work. There are some theories that if they do not work, then it isn't RLS.

I would start with the iron route - what is your serum ferritin? If it is very low, the DAs could make it worse. I would also make sure it was RLS. To have it all over like that is truly horrible - and very rare. Not saying it isn't RLS, but that maybe it is multiple things and RLS is only one, for example.