Sunday, January 23, 2011

Restless Leg Syndrome

This condition appears to be taking over my life again. I've talked about it here and here. So I might be rehashing a bit.

I'm aching from head to toe. I have serious aches happening in my thighs, hips, shins and calves at the moment. Earlier today it was in my biceps and back.
I can't sit still. I'm cramping up (in my legs) almost constantly and to a small extent those dark thoughts are creeping back.

My worry is extreme exhaustion. I have babies to care for, the one growing inside of me I worry for as I'm getting tempted to resort to drugs. I know he's almost fully grown, but doesn't need to stress of drugs to hamper his development. I don't know of a doctor that will take me seriously.

This is NOT pregnancy related RLS, but this is freaking serious RLS that I've had since I was 17 years old.

It started off slowly, a minor ache in my lower leg (we called it the "heebie jeebies"), could be redirected with a hot bath and a panadol.

It steadily became worse over the years, I didn't get it everyday, but was aware of their being something odd about my legs and sleeping.

When we moved to Newcastle it became something that I needed to see a doctor about. From old blog posts, I think it would have been about 2004-2005 that I first went to a doctor about my RLS and how it was affecting my sleep. I was given sleeping tablets and sent to a neurologist Dr Burton. He gave me electrical conductive tests and I can't remember what else. Fast forward a couple more years, have seen a respiratory/sleep disorder specialist, another neurologist (Dr Lechner-Scott), had sleep studies, EEG, blood tests all which report I have idiopathic RLS - which means of unknown origin. Genetics tells me that because my nan and mum both have mild versions, I have it from them! Thanks ladies.

So after years of
  • powerful benzodiazepines,
  • antidepressants,
  • antianxiety,
  • Parkinsonian,
  • epileptic,
  • long acting morphine,
  • neuropathic pain deviators,
  • vitamins,
  • minerals,
  • old wives tales,
  • copious amounts of bath water,
  • wine,
  • panadol, and
  • food.
I'm at a total loss what to do. I'm completely exhausted, frightened of going to bed (what's the point I'll just lie there awake), feelings of worthlessness and hopelessness. Its an illness/condition that no one can see, people don't believe it (sorry Jamie you are in this category). Lots of people think they have it, but have those people kept a small stash of Clonazepam for when it all gets too much and it just might be easier to be dead (don't worry people stash has been disposed of now and I don't have these strong feelings anymore... but they do appear to be creeping back - hence this post).

I don't want advice, I just want to put my feelings out there, maybe use this blog as a pensieve to remove nasty and debilitating thoughts from my head.

3 comments:

Row said...

Sounds nasty Christy :( Totally understand the frustration of people not believing you, I've dealt with that in regards to the CFS.
Is there any pain relievers you can have that are baby friendly that will take the edge of it and give you some relief?
Does it effect you the same if you sleep in a chair as apposed to a bed?

Alicia (The Red Deer) said...

I'm so sorry :( - it sounds truly awful.

blong_74 said...

I know how you are feeling Christy, I know its not in your head. Its real and its tiring and I feel for you esp being pregnant and having to deal with it too. Why people dont believe you is beyond me. I had nerve conduction tests a couple of weeks ago and get my results on Thursday. My neurologist has put me on Sifrol and it hasnt really done a lot. I really hope you can find an answer and when you do, let me know. It leaves you exhausted. Have they ever looked at fibromyalgia with you to see if thats what you have with all your other symptoms? Just a thought.....