Hi everyone does anyone else have pai... - Restless Legs Syn...
Hi everyone does anyone else have pains starting from the buttocks going right down the legs ? does it hurt to sit or when you get up ?
this sounds like sciatica Suri - have you seen a doctor ?
I suffer from sciatica, and yes it does sound like it to me, the best way to decide if it's RLS is do you have the "urge to move" i would discuss it with your doctor
Suri, these are exactly the mystery (no-one seems able to agree on the diagnosis despite blood tests and spine Xray) symptoms that I have been suffering from over the last 6 months. They are quite separate though from my RLS symptoms though......
Hi Stillwater (again) so do you mean that you have that urge to move
the legs plus then pain that acts like sciatica ..and your doctors all
agree that the pain that you have that acts like Sciatica really isn't
sciatiica? I am making sure that I remember as we talked about it
10 or 20 times before- you and I did but I can't remember..sorry...
from what I do remember is that you just underwent like a million tests
and still no answers? So what info have you found out that it could possibly
be or are you settled in on this as being part of rls?
There is more than one that has that same pain..Whatever you
reply will be of so much help..xxx Karen
Yes, the RLS symptoms I've had since late teenage years and I believe I inherited from my father who had RLS, so am well familiar with these. The pain in my buttocks/upper legs (morning and evening) is quite different. The suggestions made by my arguing phsyio, GP and chiropractor range from Ankylosing Spondylitus , through early Parkinson's to some unidentified other form of arthritis or to my imagination (?!). Many Xrays and blood tests later, I am still none the wiser, all I do know is from being able to run 10K in 55 minutes 6 months ago I now can't run more than a 100 yards and have to dose myself every day with ibruprofen to get through.....I am seeing yet another medical consultant next Monday and hope as ever that something might become clearer, at least I'd know what I am fighting then.
Well another Consultant another view.....this one says nothing to do with any of the for-mentioned options but rather a purely muscular problem .....the muscles between the hip and the top of the legs. He was totally dismissive of all the other options and considers this to be eminently treatable so am hoping he is right! Still leaves the RLS but at least a leap in the right direction.
I have that pain in the buttocks and am quite certain it's sciatica - am seeing my dr. soon and will report back here.
I've been asked to resubmit my reply so here goes - "I have that pain in the buttocks and am quite certain it's sciatica - am seeing my dr. soon and will report back here.
Oh dear..I hope that you can shed light on this too Bella. =)
Bella, have you seen a chiropractor on that sciatica? They have
helped some to knock that out...if it would work, you'd know that
it's not rls..I bet you never looked so forward to a doctor appt. =)
I do. I thought it was related to RLS but it's sciatica. A chiropractor cleared it up.
Wonderful for chiropractic treatment and clearing that up for you..
You do still suffer the urge to move those legs RLS247 ? or
did the chiropractor help with that too? (Nice to see ya, by
the way)
No, the sciatica treatment did nothing for my RLS. I'm convinced that crap is here for life..... It's just a matter of managing it and dealing with it a as part of my day and night....
cant say it helped me either, and i tried acupunture, no help there, rest and pain meds is all that helps me
are you getting some good relief with your dopamine medicine? I mean are you getting comfortable sleep at night?
Yes, It's frustrating and waiting for a better treatment gets on my nerves too..
No, I've gone thru all of the DA's and augmented after 7 years on them. Now on a long acting opioid which has been life changing....
Sorry to ask a million questions..I saw today in reading on rlshelp.org that if you use an opioid there should be a rotation schedule of at least a couple different ones..It was on the patient questions and answers...so do you now rotate the opioids?
hi no i havent a clue how to rotate the opiod dident know you had to the doctors never tell us any of this info
Oh..sometimes when you keep taking the same drug for a long time, it quits working as well so the doctor may choose to rotate 3 or so narcotics..It's perfectly fine if the doctor did not choose this..they use that method when they know that narcotics will be taken continually for a long period of time. Our body has less of a chance of becoming immune to any one of the opiates. I am assuming that you do have severe pain..and the doctor will keep you on the drugs for some time..If I go back the route of narcotics, I will have to be one of those patients who will have a rotation,.I build up tolerance very quickly meaning the drug's effects are lost..
I have severe sciatica, with also other spinal problems for which I am having surgery for in a couple weeks. The question that was asked sounds exactly like sciatica, and if pain is running down your legs and buttocks, that is the L5 vertebrae that usually causes that kind of pain, with entrapment of nerves. Sciatica is purely pain, RLS is mostly the :"urge to move" and you can't help but move or it feels like your legs , arms, etc, will explode if you do not move them. You can certainly have more than one thing wrong with you at a time, or "comorbid conditions", so it is important to get the right diagnosis, and that is not always easy. The American Medical Association states that "we need better diagnostic tools to know exactly what we are dealing with, and the difference between RLS and other conditions needs to be noted." See the "diagnostic criteria" on rlshelp.org or the UK web site for their foundation, and so on. The main thing for the diagnostic criteria is the "urge to move" whether we want to or not. RLS CAN have pain with it, but yours sounds like sciatica, so time to see your doctor and ask him or her about it. The sciatic nerve runs from your spine down both your legs, thru the buttocks. IF that is where the pain is, I would suspect sciatica, but talk to your doctor and see tests they would like to run. For example I have bone rubbing on bone, which is ramping up the nerve pain, so that is the reason for the surgery, and the fact that you said when you "stand up" you can feel it more is a good sign of nerve pain. hope that helps! 
Several people sure fit the description of sciatica..but the doctors tell them no, it's rls..they have the description of sciatica to a "T" but the doctor
still says no.. Would sciatica even show up on a contrast test MRI or
a CT scan? You have to be standing for the nerve to be pinched, am
I correct? I am just wondering how the doctor can dismiss that if there
is not a test to pick that up..I really do feel bad for people like Bella and
Suri who sure describe sciatica perfectly..
You did a great job of explaining what I was reading up on to tell
the difference..but it sure sounds like these ladies have sciatica
plus RLS..Suri did see the doctor and the specialist and they told
her that it is not sciatica..so any suggestions? Now what, she's not
getting the least bit relief -nor is Bella..Are they explaining it correctly
to their doctors and to us? I know that you''re not a doctor but I guess
I am looking at the way that you worded it to make it so clear...
I would bet my bra that these ladies have sciatica and since the doctor
doesn't agree, they will go untreated. = /.
Hi thanks for this information im going to make some notes and take it with me next time i see her will let you know how i get on or not the problem is they just wont listen they think they know better than us yet were the ones going through the pain day after day
Suri - request an appointment (by your doctor ) with a Neurologist re the RLS diagnosis and good luck. Also ask your doctor to treat the sciatica as a separate condition.
Right on Suri - they think they know it all because they have MD attached to their name. From the sounds of it, I would change doctors - that's only my personal opinion.
i have sciatica, the pain is in my buttock, then spread's down through my hip, and down my outer thigh, and around my knee, sometimes even goes down to my foot.
rls cause me a deep burning eletric shock kind of feeling every few seconds, and i have to move , walk pace to ease it.....with sciatica, i dont get any ease until its passed, just trying to explain the difference i feel with the two thing's hope it helps a little Suri
I don't have it so I don't know what it feels like but Antique, you did
a good job of explaining.. Oh this sounds so miserable..My legs
just have the constant need to move..without pain..that's exhausting
enough. =/,
Yikes - do I get this right - you have the constant need to move WITHOUT PAIN??? Wow - good for you - I have the pain coupled with the "need to move". I thought that anyone who suffered with RLS also suffered pain.
Same for me as Yikes...the, at times, desperate urge to move, twitch, twist stretch my legs but not pain per se....
im begining to feel like a twitcher
!aughs..so cute suri. I'm sorry that it hurts for you. It takes me effort to turn over..it's a very cold climate here..there are blankets to adjust and pillows to adjust to toss and turn..I get hot, cold and have to find blankets while I am trying to sleep...I bet that I turn on each side 100 times before giving up and walking the floors.There is just nothing good about trying to find a place to rest my legs..I fall asleep for seconds between changing positions. Then if I do get to sleep finally, I wake myself up kicking or I am dreaming so vividly..It's always a wild night trying to get comfy..
Forgot to mention that I've had RLS for about 8 years - the sciatica only started about 3 weeks ago.
8 years of dopamine? What did you try so far?
I am going the Rahim50 route - if it works out
c'est la vie..to pramipexole.. and having to time
out my doses..
I've tried numerous but the only one that works for me is Mirapex - I hate the terrible side effects but I don't have any other choice. What is the Rahim50 route?
Rahim is our gardener..=) I have practiced a dance method also that he talked about..it's a very difficult thing to balance myself as the dancers do..It's not all that fun dancing alone either..there is not a single soul in my household that cares to participate...they ask me if I think that I am 12 yrs old again..haha. It's getting harder and harder to sleep. I sleep early, then wake up and I get tired again when it's time to start my day..working, caring for family. Bella, I'm glad that Mirpex is working for you. The side effects are something else..
started of on tramadol amatriptyline , nortriptyline , gabapentin , now on palexia tapentadol which is a slow release i think it would work alot better if these pains at bk of legs werent there i take a clonazepam to help me sleep at night
I too had excruciating pain running down my buttocks and right leg so much so that I could hardly walk without extreme discomfort and as for turning over in bed or trying to get out of bed I was crying out in agony. I had an MRI SCAN (privately )which revealed grade 1spondylosisthesis at L4/5 traversing the L5 nerve root. I managed this condition with painkillers IBUPROFEN AND STRONG CO-CODAMOL. The strange thing was I WAS NOT AWARE OF MY RLS while I had the nerve trap pain.It took about 3months to get rid of the nerve trap pain but needless to say my RLS discomfort came back with a vengeance and once again I have nights of walking the floor or insomnia.CEST LA VIE!
Hi maddymac....what I don't get about the trapped nerve bit (my xray showed problem at L4/5 too) is that if so why would I only get the severe pain mornings and evenings? Wouldn't a trapped nerve be painful all the time?
you are in a lay down position before you sleep and after..
the nerve pressure changes when you are in that position
or it just irritates the heck out of the nerve by the position
that you lay in..not fun to try to figure this one out since in
the xray, mri, ct scan..they position you exactly as they want
you and not like your body usually is positioned..example, I
am a side sleeper, the mri had me flat on my back...
Makes sense? =) ..Even if you are reclining in a chair vs.
standing or walking around in the day, it's all in whatever bending
or movements that you make that will rub and pinch on that nerve.
It isn't fun for the doctor to figure it out either..
Also the spine compresses and then releases..widening the space
between the vertebrae..Oh fun, isn't it Stillwater..
Listening to Boston..Loved that group in the 80's so much! =))
Maddymac..What method did you use to get rid of the nerve trap pain?
After that problem was solved, then you started in with rls..
so what you are saying is that the nerve trap pain was so overpowering to the
rls- is that correct?
Now the only issue that you have going on is RLS..but it's severe, right?
If that's the case, did you try one of the dopamine drugs? Also have you
had your iron and ferritin, B12 levels checked? Those levels have to be
in check for you to get relief from RLS..I think that we talked before,I just
can't remember.. xx Karen
Hello Yikes and Stillwater, I relied on Co CODAMOL 30/500 mg and Amytripline to get some relief for the trapped nerve but while the problem of excruciating pain has eased off a lot, it is still present particularly when I lie in bed at night I gather the spinal joints don't press on the nerves quite as severely when walking as when lying still .I saw a pain clinic consultant last week who recommended a Spinal injection.The waiting time to see a Radiologist who gives the injection is 8-10 weeks.Hopefully by that time it will have improved further and I can cancel the appt. because I don't fancy the idea of anyone sticking needles in my spine particularly with the warning that it may not work or work only for a brief time.
Regarding THE RLS I use the Neupro Patches (Rotigone) 2MG without much success ,maybe I need to up the dosage but my concentration has been sorting out the trapped nerve. Old age certainly brought some problems for me but I'm lucky because it could be so much worse or so I tell myself
Oh Maddymac, if you get those injections, the relief is usually felt soon after..
The difference can be day and night...In the USA, they inject as a tool to see
if facet disease is a factor..it's the only real good test because as you stated,
sitting, standing, laying down all produce different levels of pain...
The injections can last up to 6 months and they are not giant, horribly painful
needles..I would hate to see you walk away from a great treatment..then again,
you know what's perfect for you. I respect that. =)
How did you do with Amitriptyline? Did it do anything for RLS? They love to use
that drug for various kinds of pain, particularly for Nerve pain..I just wondered if
it tamed down the legs as well? The trapped nerve isn't always an age problem.
Young kids get that as well but yes, the years are hard on our bodies..
Looks like you could go up in dosage for Neupro Patches, yes..or you could
switch over to another...Both of what you have are pretty severe issues and
I would hope that both can be treated at the same time..both will keep you
awake..you are going through some very tough stuff..I do hope that at your
appointment you get a jump on treating both of these. Thanks for the update..
Will be watching to hear more from you or if you can't sleep, hang out here
to see how others deal with the RLS..or even trapped nerves..=))) xxxKaren
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