Severe pain at night

Hi Boomiesmum,

I too have had RLS for many years and have experienced the jumpiness turn to pain.

I was referred to a neurologist in 1999 who probed my legs diagnosed 'a weak left ankle'. So that was useful!

After much research I found Rotigotine patches about 2 years ago and saw my doctor who prescribed them for me. They have quite literally changed my life.

Since using the patches I usually sleep reasonably well (sometimes with the aid of sleeping tablets) but if I am not sleeping at least I am not in pain.

If you are not receiving any medication at present for the RLS I suggest you discuss the options with your doctor soon to get some relief.

Hi Boomiesmom, like you I have suffered from RLS for a long time - 35 years.  It began with some occasional minor itchy, crawling feeling and gradually got worse until I would be sitting on the edge of the bed banging my legs and crying with frustration because I couldn't sleep and had to be up for work at 6am.  Eventually I got prescribed clonazepam, a muscle relaxant used for epilepsy and it worked. I've been on this for 15 years now but over the past year I have lots of pain in my buttocks, hips and thighs which keeps me awake at night.  The feeling in the legs has altered to more of a pain than the original creepy, crawling sensation too.  So I often have to take painkillers in the night as well as the clonazepam at bedtime.  I get a lot of pain in my back, both lower back and up between my shoulder blades.  One doctor said I have the symptoms of fibro myalgia and I have read that there is a link between this condition and RLS.  So it may be worth getting checked out for fibro myalgia yourself as there is medication that can help (in my case amitriptyline) although I stopped taking it as made me too dopy in the mornings and gave me a bad taste in the mouth.  I have heard good things about it though and it may be worth talking to your doctor about.  Good luck, I know how horrible and depressing this awful condition is. 

Yes! Yes!  I recently retired and moved boxes into my new home for about a week, put up curtains, etc.  Then I was "disabled" for 3 1/2 months with severe night pain.  I thought, well, arthritis, so went to an ortho who did X-rays and said there was nothing wrong with me.  Mentioned neuralgia.  So I guess that's it - related to RLS.  I am 62 and I have learned not to overuse my muscles, but that's not the entire picture.  I also have thyroid disease, so it may be a combination of autoimmune.  I take .5 ropinerole at 5:00 PM, then another dose at 10:00 PM and codeine as needed when I wake up in the middle of the night.  Now I am on a new drug for weight loss which impacts the dopamine system - Contrave.  It will be interesting to see if this helps with RLS - you never know!

Thank you for sharing about your pain. I have a lot of pain in back, hips, thighs and jnees but never related it to RLS. I take a lot of  pills - 1mg ropinirole  at 2 pm and 9 pm, 600 mg gabapentin with 10 mg of singulair at 6 pm and then .5 mg clonazapen with 100 mg of Trazadone at 9:30 or 10  pm for sleep but none of this keeps me from having severe pain at night nor do I sleep for than 5 hours. I hate this disease and wish I could find right medication to control it. I am going yo talk with my Dr aboit pain in connection with RLS and see what he says. I appreciate this blog site for being able to share and se what others are doing  to help with this disease.

My pain is is only alleviated by taking Norco and/or Tyl/Codeine after Gabapentin and requip aren't working.  Last night I had to add MORE Norco and a muscle relaxant PLUS two scalding hot showers on my legs to finally get the pain and jumpiness to subside.  On top of this I put Lidocaine patches on areas that are really painful.  Also, I have developed tingling on the bottom of my feet.  Not sure it's from the Neurotin or Chemo I had last year but the patches really tame the neuropathy in the bottom of my feet.  Getting very discouraged as Gabapentin worked wel lfor awhile, now, even increasing, it doesn't seem to help.  I do notice it waxes and wanes.  I can have a couple of days where the Neurotin works, then it's off to the races and the jumpiness and pain are miserable.  Honestly, I do find HOT HOT HOT showers on my legs seem to calm the nerves.  Guess different things work or don't work for most of us.

Hi

I am sorry I have not replied before now. I have only had RLS symtoms for 7 months (aren't I lucky!) and for most of the time I have been on clonazepam. The RLS started with a lot of leg jerking but the clonazepam stopped much of this, Now my neurologist has told me to get down to 0.5mg (from 4) and I am having tests done as despite the fact that I tick all the RLS boxes he isn't satisfied it is RLS. As the clonazepam has dropped (now 1.5) the pain in my legs has increased to the point that Zapain will only lessen the pan level. Most nights I wake with pain about 4.00 then take two Zapain. Today the pain has kicked in at 2.30 whch is unusual so more painkillers.

Just a discouraging note.  First few weeks the Rotigotine patches really worked well.  Always woke with major headache but took OTC type headache meds with combo of acetominophine/aspirin/caffeine or NASID/aspirin/caffeine and it knocks out the a.m. body aches and headache.  But just a month or so into the patch and I can feel augmentation beginning.  I'm on only 1 mg patch.  Leary to increase as worried the headache would be unbearable.  That being said, very discouraging as it's following pattern of requip, neurotin, etc. that I've used.  This is really a quick augmentation this time.  Back to my cocktail of 'this and that' in addition to patch to deal with jumpiness in leg and severe aching in feet, knee, thigh, trouble falling asleep.  Wondering if anyone else using the patches have experienced augmentation and if so, how quickly.