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)
Ya my dream would be Spain, Italy or the South of France! Oh really! I could not live without my hot water bottles, definitely not the best for my skin because they are so hot but the relief is amazing!
Oh wow I'm really sorry to hear about your hips and spine 🙁 and your experience with the Chiropractor, ouch! That really sounds awful. I know everyone is different, but I had a real bad problem when my right hip and found going to the pool even just walking and stretching in the water really helped! With time it got better I was able to use resistant bands to build strength there and that really helped! But like I said we are all different and you might not be at the stage to do that - I hope with time it gets better for you!
$2,000 dollars for a tens machine!! Wow, I got mine off Amazon and it was cheap but does the trick!
Sitting on the beach watching Palm Trees sway in the wind really sounds amazing! I hope you do move, that would be an amazing adventure!
Not quite the UK! But thanks Ron, hope things go well for you! Actually, I forgot to ask, what do you use / do when you're in a flare up?
Thanks Ron,reading your experience reminds me of the same. I was seeing a chiropractor when I first began having terrible neck pain in my 20's. He put me on the decompression table and I about died. To say it was painful is an understatement. It may be because I had a burst disc. But didn't discover this for years after. It took me a year or so to recover from the pain of that. Never again.
Hoping your week has been with low pain. 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) - I wanted to post new topic never found out where it is.lol.
I have a question : Has anyone noticed that your skin is more sensitive when you take a shower ? I have to turn the Hot water way down or it really hurts. My wife is a Lobster likes it so hot she looks like-a lobster when she gets out.
Just thought about this ..
RonHi Ron - thanks for sharing this great question. If you look above click the blue teal "AxSpA" home button far left. On the home page scroll toward the bottom, and you'll see a headline that says, 'Popular in The Community' - click below it on Explore Forums. Next page at the top, you'll see a prompt to "Start a Discussion". I hope this helps. Copy and paste your question there.
Wishing you a low pain day. Rebecca (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.
