Restless Legs Syndrome (RLS) Discussion Board

my rls is taking its toll on me.
its much worse , the pain is reducing me to tears added to the trapped nerve pain which is 24/7.
today my muscles are really painful when i move and when i touch my legs, i dont understand why this is happening apart from me tensing my muscles up and jerking about to get rid off the rls , to no avail i add..i was in Edinburgh yesterday walked a lot but not fast as i am unable due to the pain in my knees from early degeneration, i walk every day tho.
at the moment the rls is there, not too bad but there...it doesnt mean its going to get worse later but then again it might.

i honestly feel like an old woman and feel am in constant pain .am taking codeine it helps but am trying to keep it to a minimum but sometimes i could just take the lot.....ive been adding diaz occasionally to help but really have to keep this for my bpd.

i know am moaning on and i know am not the only one...just am i the only one who gets it like this?

i was looking on nhs inform and have found out that none of my gps have ever asked the right questions or got any tests done eg emg so im going to go and tell my gp this and tell her i want the tests that their web site says we should have for peace of mind .

she wont even send me to a neurologist! even tho ive asked .

other than that i feel good so there is positiveness

I hope you are able to convince your doctor to get some tests done, or at least send you to a Neuro.

If not, maybe its time you went over her head and complained.

Moonlight, I also go to a UK doctor and the only test I have ever had for RLS/WED has been for ferritin levels.

Does the diaz help the rls when you add it.
It never helped me, only for sleep.

Just a few minutes ago I was wondering what I could be doing wrong recently because I am frequently getting breakthrough in the early evening even though I am medicated quite heavily i.e. 1.25mg requip and 100 tramadol !! I buy paracodal and sometimes add a couple of pills and so get 16mg codeine to top it up. But this isn't really good enough as I want to have regular relief using my 'prescribed' meds. Just in case I'm ever in the position of being unable to speak and thus say when I need extra - a constant fear.

RLS symtoms are bad enough on their own, but added to trapped nerve pain plus the pain from your knees - not a good situation.

If your doc will not agree to get tests done as per the NHS website, will you ask what are her reasons not to do so. And if she will not do the tests, then ask will she send you to a Neuro so that he may perhaps authorise the tests.

What pain relief med are you prescribed for your knees and your trapped nerve. I'd have hoped that whatever med you had for these would as a bonus given rls relief.

As for moaning......... we all do it, this site is for moaning, learning, teaching and sometimes for a wee chuckle

So glad you are otherwise feeling well and positive.

Would be interested if you would post or PM me a link to the NHS website to which you refer.

Hope you can get the tests done. Sounds miserable.

Hi Moonlight,
Sorry to hear your RLS is being so hateful to you. I imagine walking around Edinburgh is what set them off this time. Whenever I do a lot of walking my RLS is worse. Let's see, a good drug for the nerve pain you are also putting up with is Lyrica or pregabalin, and if it is to work, it would be overnight you'd notice a difference. I take it for sharp back pain I have. Really helps me sleep well, too. Hopefully you can mention it to your doc... doesn't do a thing for RLS, tho, just nerve pain.

Polar Bear provides good ideas, too. She takes the over-the-counter codeine stuff up to 16mg and gets some relief. I take Tylenol-Codeine #3, which is 30mg, and one pill four times a day keeps me straight. The opiates really are good for RLS, but docs just hate prescribing a dose high enough to do any good. But anyway, if you want relief right now, take enough to make 30mg, and you should do much better for a short while anyway.

The diazepam or Valium is good for sleep, they should give you enough where you don't have to "save it." I take a cousin to it also, but for a whole different condition. But if they were to give you Lyrica, now THAT will take care of your sleep. I myself combine Lyrica, Klonopin (like Valium), and the Tyl-Cod #3, taking them throughout the day, and sleep well and my RLS rarely bothers me. But I get enough of those drugs to work. I personally think your doc is not giving you adequate pain relief, and I hope they will send you to a neurologist perhaps.

About all you can do now, if your RLS was increased from the walking all over the place the other day, is to stretch those hamstrings, put heat on your legs, buy & take enough of the OTC codeine to reach 30mg, plus go ahead and take a tranquilizer, maybe a half so you don't use too many, and bundle up and do some napping with the TV, with your legs elevated.
GG

I'd like to clarify that when I take two paracodal over the counter pills this is to 'top up' what I already take on px. From the two pills I get a total of 16mg codeine. Unfortunately, from those same two pills I also get 1000 paracaetamol which I definitely do not want.

This is why I'd like my prescribed drugs to deal with my symptoms so that I only take what drugs are necessary and not to put into my body paracaetamol that is not needed.

Hmmm.. dream on.... this is what we all wish.

Last night was one of those out of the blue horrors that appear from nowhere. 1.25 requip and 100 tram at 6pm. At 8pm I was walking and jigging my arms - the meds should have kicked in. Took my bedtime dose at 10pm which again is 1.25 requip and 100 tramadol, lay in bed for a half hour and had to get up. At 2am I gave in and took a zopiclone, sweet bliss, I fell asleep until 10am. (last of stash)

I will have an appt soon with my GP and will ask for some codeine for top up for rls, and also for some zopiclone or diaz for sleep. One GP doc in the practice wanted me off the 'z' drugs and at that time the zop wasn't doing much good anyway. This other doc in the practice had given me diaz for occasional use for sleep. The zop appears to work well if not taken regularly. I think it is better that the diaz for sleep.

Moonlight, sorry, I don't want to appear to have side tracked your thread but wanted to let you know what I use and what works for me (sometimes and also to let you know that the over the counter paracodal is not solely codeine.

Are you sure you aren't augmenting, Polar Bear?

Zach: I am almost afraid to think about that.
I have been taking requip for about 5 years and on my present requip regime for about 3 years with no increase in the requip.
The tram was added about 2.5 years ago and the dosage has not changed.

So, is it tolerance, is the rls getting worse, or is it the dreaded augmentation - after all of this time.

My GP is not fully RLS educated and has been pretty much guided by me and the Mayo Algorithm. And likely knows nothing of augmentation.

I know that to come off the requip I would need something strong to replace it and don't think that my GP will realise how bad it will be if the replacement for requip was not strong enough. And also would the requip replacement be taken along with my present tramadol dosage. GP is very wary of opiates.

Of course, perhaps it is tolerance and a slight increase in the evening dose of requip could resolve the issue. And see what happens thereafter

Gosh moonlight, your doctor is not taking care of you. I like Polar Bear's approach, ask her "why not" re the tests. And ditto for the referral - ask her what her reasons are for not referring you. This might start the conversation in the right direction, for you to figure out what aspect of your life she is mis-understanding.

On Friday I had to see my GP for an increase in dose (I'm on an opiate) and she FLOORED me by saying that the hydromorphone doesn't deal with the symptoms, it just makes me groggy so I can sleep@@!! I was stunned. So that's the level of misunderstanding there can easily be. When I could speak again, I told her I didn't understand why she thought that, and that the only thing the hydromorphone did was stop my symptoms, it didn't even make me groggy, in fact it woke me up. The horror, to think she was thinking that way!

anyway, you never know where their heads might be, so asking for her reasons is a good way to pry out whatever mis-conceptions she has that are stopping her from helping you.

I'd also like to clarify that I did not mean for Moonlight to go out and buy a case of OTC codeine! Moonlight has come on here a lot seeking help, and I hate to see her cry, so I was only giving her my very best advice to get her thru this rough patch "right now," as I said. But I do join with Polar Bear, don't take OTC codeine by the dozens on a regular basis, and I know, PB, you were just trying to make sure nobody made a mistake.

By the way, I have a fatty liver, and even tho I have asked my own neurologist many times to give me something else that isn't mixed with Acetimenophen/ Tylenol, and even tho I tell him how my grandfather died of liver failure, and even tho I urge others to press their docs, my own neuro won't listen to even me! GG

PB:

one bad night can happen, but it makes us often soooo frightened that our meds don't work well anymore and that we have to change them again, that the struggle for relieve continues.

Hope it is just the one night.

If not maybe you could try Requip XL or sustained-release Pramipexol with much less chance of augmentation (if you are able to get them in N Ireland).

Corrie

Moonlight, sorry I forgot to tell you that your walk in Edinburgh, however peaceful, might have been the culprit.

Hope that everything is settled to 'normal' again.

Corrie

Thanks dogeyed. What I was really trying to say was that I couldn't get over the counter codeine on its own, can only buy it with the paracaetamol , and none of us want to be taking what we don't need.

gg your neuro makes me angry. I guess he's the best you can do, and the benefits of seeing him must outweight the terrible things that would happen if you didn't (like, being completely unable to find anyone else who had even half a clue?) But still I can't fathom it, why he would keep feeding you a drug you don't need. Grr.

Moonlight, I understand completely your frustration at the lack of knowledge here in the UK. My doctor seems willing to listen to me when I suggest things, I'm lucky. But ignorance about RLS is widespread in the UK. I also live in Scotland, like you, and I also have pounded the streets, Edinburgh and other places. Walking actually helps me, but I have always walked, even in pre- RLS days. So I am used to walking, I think that's why it helps me rather than aggravates me. i feel for you, not getting referred to a Neurologist. I can't understand why your doc would not think of doing that.
Have you thought of changing your Doctor? You need help, and your Doc is the first port of call. They must refer hundreds of patients to neurologists every year, so why isn't he/she referring you? I'd push it if I were you, your health and sanity is at stake.