New to RLS

[SusanM]

I was stunned when I read the "criteria" for RLS. I felt like someone snuck inside my body because each and every one of the symptoms are what I experience - mainly at night.

I never experienced RLS until the past 3 months and I don't know if perhaps my experience has anything to do with why I am experiencing this now, but maybe someone more experienced in this could lead me to the right direction of finding out.

My story is this and forgive me it is long...

The past few months have been a nightmare for me. September 29, 2004 I was in a "mild" auto accident that for the normal person would not be a big deal. But because I have a vertebrae in C5 region that was already fused to the C6 disc...the disc between the C6 and C7 area was herniated from the impact of being rear-ended in traffic.

Treatment ensued with steroids and the pain seemed to resolve itself only to rear its ugly head in March of this year.

Again, we went through all the typical procedures to calm the nerves around the protrusion, but no treatment worked and my physician sent me to a neurosurgeon.

Surgery was scheduled for 4/29/05 for a Microdisectomy of c6 c7 - a non-invasive procedure to remove a piece of a disc that was pressing on a nerve. The following is gist of what followed:

After the surgery, I still experienced pain, this pain kept me in the hospital for 7 days when the surgery should have only kept me in overnight before released to go home. Released on a Thursday and yet the following Monday found me at my family doctor with an excruciating headache and leaking from the incision. I was sent immediately to the emergency room, processed quickly and surrounded by doctors – it was when a doctor from the CDC came in to speak with me that I realized this was more then a simple migraine headache.

Blood cultures later proved that the infection is a Staph infection, but this Staph infection has gone into the bone. According to my neurosurgeon I was a day away from it moving into the brain. The infection I have has its own name. When it goes into the bone it is called Acute osteomyelitis.

I spent 12 days in the hospital given massive doses of antibiotics and pain medication, I went through many injections, MRI’s, CT Scans, and the installation of a PICC line (Peripherally Inserted Central Catheter), and in time was finally allowed to go home, with the PICC line so that I could continue the prescribed 6 weeks of the antibiotic.

This in itself has had its own issues, rushing to the emergency room because I didn’t feel right, I couldn’t explain what was wrong, but I knew something was wrong with me. They couldn’t find out anything, so they sent me home. Two days later I was back with a blood clot, the PICC line had to come out and a peripheral line installed so I could continue the antibiotics until another PICC line could be installed. With a new PICC line installed I finished out the 6 week treatment.

During the the whole episode, shortly after I was diagnosed with Staph infection, my right leg started twitching and jumping. This progressed into a horrible achy feeling in both my legs that no amount of stretching will make stop and which seems to have gotten worse at night. I have dealt with it as best I can, but the last week I want to cry when it starts because it aches so much. Last night I guess I kept my husband awake by my twitching, jerking and even kicking.

So, again tonight, when I cannot sleep because my legs ache so, I decided to come down and investigate more and found this message board.

I would love any feedback that you can provide.

[ViewsAskew]

Susan, what a harrowing story! I'm just up for a short moment - unexpected heartburn - and decided to read the posts for a minute. I'm not too terribly awake, but here's something.

Back surgery, injury and spinals are all causes of secondary RLS, so it's no wonder you're here. Unlike other causes of secondary RLS, this is one secondary that doesn't disappear or improve when the main problem gets better, unlike Lupus or kidney failure.

At any rate, we've had a lot of newcomers lately, so you might want to read our replies to Katie http://www.restlesslegs.org/phpBB2/viewtopic.php?t=994, and this one, too http://www.restlesslegs.org/phpBB2/viewtopic.php?t=585 as both posts contain some great information about lifestyle management, links to more specific info, etc.

Welcome to the board - I hope in this you find information you need to find ways to stop the RLS madness; wish I could say to cure it, but there is no cure.

Ann

[Penguinrocks]

Hi Ladies and Gentlemen....

I was wondering something. Is it possible to have RLS by heredity but brought on by something secondary?

Hope that makes sense.

Still having my coffee
Penguin

[ViewsAskew]

Don't see why not. My family has primary, but my grandmother felt hers the first time when she was pregnant - secondary event causing it, but it was primary so when the event was over, she still had it.

Ann

[Penguinrocks]

Thanks Ann. !!!!

[ViewsAskew]

I wonder how or if that changes how it's treated, though? Interesting question, Penguin!

Ann

[LadyFox]

That is interesting...the primary/secondary issue. I assumed mine was primary but now that I think about it - I don't think it was a real issue until I suffered a very bad fall, resulting in a serious ankle situation (nearly broken, may as well have been for all I went through). It was then, it began to be problematic and made worse by hormones I was using for infertility. Since then, about 5 years now, it's been a constant annoyance. So, I can see how back and spinal problems can affect this.

Laurie

[cornelia]

Hi partners in misery, about the primary/secondary issue:

dr B always says that trauma to the body can make RLS worse and they don't know why.
So it has nothing to do with primary or secondary RLS, I guess.

Corrie

[Penguinrocks]

Thanks again.

I was just wondering because I KNOW my mother has it and she seems to pass everything on to me. Allergies, etc....

But didn't become "pronounced" until after the epideral (C Section), lower lumbar sugery, and physical/mental abuse.

I have noticed too that I've become more accident prone. Couldn't figure out WHY my mother was,.....now I believe I know.

peace and giggles peeps

Penguin

[ViewsAskew]

I would think it's primary. I've heard a lot of people notice it coming on after surgery or injury, which makes sense with what Corrie said. An injury or surgery wouldn't necessarily make it secondary. To be secondary you have to have one of the conditions like pregnancy, renal failure, Parkinson's, iron deficiency anemia, peripheral neuropathy, etc.

Of course, you could always have both. That makes for an interesting problem, NOT . Would that mean it would be worse???? No idea. Corrie, has Dr B said anything about that? I've actually never seen it discussed, but I certainly haven't read everything there is to read and am no expert.

Ann

[becat]

Hello Ladies,
I can tell you that for sure I have primary RLS.
It was horrible as a young child and very painful.
While in my late teens and 20's ( even pregnancy) I was mild.
Honestly, if it woke me up, I took a hot bath and I was fine.
At 30, and with my injury to my right leg/ankle/foot I turned severe.
I can tell you the date and time it turned that way.......Dec. 14, 1995 around 5:30pm.
Maybe I was due to progress to a severe stage later in life, but it happened all too fast and at once. It did progress into my left leg over the course of 2-3 years. But the right leg has never been normal sense.
It just my two cents..............
Maybe some things could have been different if I'd had more time in the mild zone.........

[cornelia]

No, Ann, I never read something in dr B's answers to questions about the possiblity of having primary and secondary RLS together. Of course you can always ask him or ask at the Conference. It is interesting though.

Corrie