I have AS , Neuropathy, Chronic Pain & RLS
RLS = Restless Leg Syndrome. Yesterday afternoon My leg started kicking which is an odd time, usually at night. I took all my Meds and wouldn’t Stop ,so took everything I had including THC which usually relaxes after 3 times. I’m still wide awake and not feeling sleepy.
Has anyone else encountered something similar?
Thanks!
Ron
Lisa,I’m so sorry to hear that you have AS & MS, and it sounds like you also have RLS= Restless Leg Syndrome . I take Pramipexole to stop the kicking and know how tiring it is trying to go to sleep.
Did you have the pain pump implanted in your back ? Do you
use it when the pain gets really bad ?
Ron
HoustonHi,
, The pump itself is in my upper belly. The pump is connected to my spine through a tube that goes up my spinal cord. So far I am only using baclofen, a muscle relaxant, but as the AS progresses, I will have access to other medications. I take oxycodone in pill form as of now. It seems the only certain thing is change. Sometimes it is so difficult! The pump is on all the time, but I can go in as needed to the pain spedcialist to adjust the amount. It really does help.
Lisa
, Thanks so much for taking the time to share your experience with the pump. Have you had it for quite some time? ~Doreen (Team Member)
Hi Ron - it's after the holidays and am curious to know how you are managing. I hope you've seen your pain doctor and that the nerve pain is low. Having that 24/7 is absolutely miserable. I've had nerve pain shoot through my fingers from pinched nerves in my neck and recently had another neck fusion to try and help. We'll see - it takes a bit for nerves to regenerate. It took my right arm over a year to stop zinging. Sending thoughts of healing and well-being throughout the New Year. Rebecca (team member)
Hi Ron -
it sounds awful. I had restless legs a while back. Quite difficult to manage. As Lisa, I too have been on a muscle relaxer. Have you been to your treating physician to seek help with this? I do hope you finally got some rest. I know how irritating and disruptive RLS legs can be. How are you doing this week? A little FYI - I've heard pickle juice or electrolytes help restless legs. Rebecca (team member) - If 20 degrees makes you hurt,throw in strong wind and SNOW ! Texas doesn’t get snow but we received
4” plus. I’ve stayed indoors with fireplace blazing, covered in my trusty blanket and sometime an electric throw. It’s been difficult to go to sleep and it seems 1:30-2:00 AM is
when I run out of steam and sometimes just conk out. Today it was 10:30 when I woke up from recharging my tired body, from too many late nights.
The Snow almost melted and it will be a blistering 44 so my
Truck won’t leave the garage.
I look at it like this, it could be worse like my friend in KC
who said it was -3 degrees. lol,
How are things going?
I hope it has warmed up a bit by you.
I love your perspective..."it could be worse."... Well said.
~Doreen (Team Member)
hi kizmazz, I have MS and AS. The AS is worse than the MS by far. I also have part ial neuropathy and chronic pain. When my legs start kicking, it is directly related to my SI joint. the jerking makes it impossible to sleep. What has helped me the most is going to a pain doctor. I know that taking notes about the pain and how it effected me, how long it lasted and if I was able get it to stop. I now have a pain pump, altho I am only using a muscle relaxer, baclofen. It has helped incredibly. Occasionally I have to take an oxycodoneto completely stop the legs. I hope you get answers from your doctors.
