So much pain.....want out

moonlight · Post by **moonlight** » Sun May 18, 2008 4:44 am

Morning

What a night , been up since 4am, took diazepam to calm before bed, ha ha been through worst nightmares ever and RLS went crazy....maybe just because of how I feel at the moment.I have woke to a splitting headache and my legs hurt so much walking about is not stopping the pain.if I take the codeine now I will feel ill all day,but which is worse? I suppose I have to weigh it up, pain or feeling sick, but I might get a little more sleep as I've not had much over the past while and what i've had was so broken up it was only making matters worse.I am so exhausted that it's hard to make a decision or function properly for that matter.I feel really alone at the moment which is helping nothing and I can't go on feeling like this so I have to sort something out.

Thanks for listening

huggles moonlight xx

Post by **ViewsAskew** » Sun May 18, 2008 5:06 am

Oh, so sorry that the diazepam didn't seem to work for you. I wonder if there's some interaction with something else you're taking? I don't think I've ever heard of it making RLS worse...again, just goes to show that each of us is just plain different.

But, since this drug is supposed to either help or be neutral (but not worsen it), I'd definitely talk to your doctor about it. Now, I suppose it could be that it didn't make the RLS worse - that it was just a bad night anyway - but since it happened, the doc should know. Sounds like a different anti-anxiety drug may be necessary. Especially with the odd dreams, as I looked it up and the info I saw says that is suppresses dreaming or REM sleep.

Definitely sounds like this may not be a good drug for you.

Hope you get some rest, soon. I know it's not easy; maybe it will help to remember that many of us have not slept for many days, that we've been exhausted, that we thought we'd never manage...but we did. It's so hard for me to do when I'm caught in the anxiousness of the constant RLS and exhaustion, but if I simply can tell myself, "I've done this many times before, and I also come out on the other side. Other people are doing it right now, too, or just have, and they came or will come out on the other side."

Sometimes that is enough for me to gain some calm and put things in perspective again so I don't feel like everything is spinning out of control.

Post by **Polar Bear** » Sun May 18, 2008 7:57 am

moonlight, I hope you got some sleep, and that things calm down for you, all round.

stitch · Post by **stitch** » Sun May 18, 2008 8:52 pm

Hi Moonlight,

Don't think we have met before but I have been taking clomazepam to help me sleep and mirapex and neurontin for my RLS. I also take Oxycodone for back pain from surgery but I have never had pain with my RLS.

One day I hope to get off the pain med and just take the neurontin and mirapex for my legs. I was on requip and it stopped working but the mirapex has been working for over a year. Good luck, Jeannie

moonlight · Post by **moonlight** » Mon May 19, 2008 6:07 am

Hi Jeannie :cry:

Nice to meet you, I have always had RLS as pain at any time of the day.

last night was wild......woke up at 2am pain excruciating in legs and back and arms.........but also a crawly feeling in my arms...I have never felt the crawly feeling this must be what the others describe in their legs, it was horrible I was scratching my arms to bits.

I got up at 2am walked round the house but could not get rid of the pain so took codeine to help , it took a while but worked so I got back to sleep .When I woke at 6am there it was again so I just got up.My legs are really sore and achey as I kept tensing up my muscles to try to help it and all it resulted in was cramp.

I would so much love a full ,uninterupted nights sleep , as would many others here.I have been sleeping well a while ago and was begining to forget just how badly the lack of sleep hits you and just how awfull you feel.

hope you feel better

huggles
moonlight xx

waterloo2 · Post by **waterloo2** » Mon May 19, 2008 3:41 pm

Hi Moonlight

Feel better soon girl.

love gill

jumpy · Post by **jumpy** » Mon May 19, 2008 4:33 pm

This post makes me think. Can people with pain related to RLS, please describe the pain.

Thanks for the help, Pat

moonlight · Post by **moonlight** » Mon May 19, 2008 7:20 pm

Hi Jumpy

The pain I have is not like a tummy ache pain or if you cut yourself or if you hurt your back.
It is a pain which creeps through my body , it feels like trapped nerve pain which starts not too bad but if I don't move it escalates till its unbearable.
The pain is inside my legs ,arms and back but when it is very bad if I touch my legs they are very very sensitive and sore then I can't stand covers or anything on me as I litterally leap like something very hot has burn't me.
Maybe someone else can explain this better to you

hope I've been of some help

moonlight x

Ann -I have upped the diazepam and have got better results it seems to help keep me out of my low mood but also stops me going crazy high, I know I can't take them for a long period but dr gave me them to tide me over till I see psych next week who will tell me my options.
I am on trimethoprim and the RLS has been so much worse , so I think thats the cause.I have to take them till wednesday and then I hope to have some relief.

jumpy · Post by **jumpy** » Mon May 19, 2008 9:33 pm

Hello again,

Thanks for getting back so soon. The reason I asked for a description of the pain, is because mine seems to be related to RLS in that it's only noticeable if I am sedate. Like sitting in my chair or in bed. If it starts..I have to move. My gp calls it neuropathy. I had a nerve study that showed damage. And because I am diabetic, he thinks its' diabetic neuropathy. At least that's what I think he thinks. I don't seem to have the clasic symptoms of diabetic neuropathy. It's more of a deep muscle ache. Like if you have been on your feet too long.
I thought maybe my muscles hurt because I'm moving them all the time???
I'm trying to sort this all out. I have found you have to do your own research because you know your body better than anyone else.
We've tried so many meds and the only thing that works is lortab and Requip. Maybe I need to be happy with that. It's more than some people get.

Hope you're better, Pat

waterloo2 · Post by **waterloo2** » Tue May 20, 2008 12:52 am

Hi Jumpy

Mine feel like they have been doing exercises.....lol
Its hurts my Arthiritis too.

gill

:roll:

moonlight · Post by **moonlight** » Tue May 20, 2008 6:26 am

Hi Pat

Just replied and it disappeard.
Deep muscle ache, yes I could describe what i feel today like that and its only 7am.

Last night the RLS was real bad again, took diazepam and codeine then slept for 6hrs, the RLS is still there

I deff think it's the trimethoprim as i never have it like this 24/7, yes I have it bad for several days at a time but this is different ,it doesn't ease at anytime so relaxing is out of the question and I cant take diazepam and codeine to knock myself out all the time.

Can't wait till wed, meds finnished then , suppose it will take a couple of days til its out of my system, deff adding to my list of not takes .

Got a group this morning Ha Ha it should be fun!!!!!!!!!! I think not :lol:

anyway have to go and make bfast have sat long enough.

Take care
huggles
moonlight

SquirmingSusan · Post by **SquirmingSusan** » Tue May 20, 2008 6:56 pm

Hi Moonlight, I hope you're feeling better by now. I've been off line with computer problems and can only pop in for a minute right now, but should be around more soon. I believe you have my regular email address if you need to write.

As for the pain - mine feels like there are tiny little trolls in my legs trying to pull the muscles off the bones. When the pain isn't there, it's the crawly feeling.

jumpy · Post by **jumpy** » Wed May 21, 2008 10:21 pm

OK, too much moving of the muscles?? Trolls, love that.. Really hurts the arthritis, yes. In both knees, hips, and lower back. Sounds like RLS related. Probably acerbated by the statin drugs making the muscles weak. I've been off them for about 5 months.

But overworked muscles seems to make sense. I do find myself bouncing around in my chair or bed although I really don't have the conscious need to. ( because the Requip and Lortab take care of that) I wonder if the constant movement is habit instilled since childhood to correct the RLS???

You know how you have tried to relax to stop the need to move but it doesn't work?I'm trying that again. Thanks for the input, Pat

jumpy · Post by **jumpy** » Wed May 21, 2008 10:30 pm

Hi Moonlight, Hope you are done with your bad meds. and hope that was the problem.

You should be feeling better soon... Pat

moonlight · Post by **moonlight** » Fri May 23, 2008 6:29 am

Hi Pat

Off the meds at last and have had two nights sleep with no RLS, what a relief....they are deffinately on my no no list.
I have been doing a lot of walking recently...as I can't drive when I take the diazepem...so I've been taking the bus ..been given a free bus pass which covers the entire country lasts for three years...yipee ..so I walk in between getting the bus already I feel more energy for doing this, I walked so much yesterday that my legs ached last night ...but it wasn't RLS.

Hope you get on better

huggles
moonlight x