I am in agony all the time

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moonlight
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I am in agony all the time

Postby moonlight » Sat Aug 08, 2009 9:22 pm

Guys I am in agony I can't get the pain to stop...last nite i slept on the settee was in pain all nite......all day ...each time i stop even when i;m standing.

have just had swine flu ...and landed in hospital with complications because of tamilfu...that was the only time i had no pain!!

am seeing the dr on friday i cant go on like this...the codeine is easing it and not causing any probs after ,at the moment sitting at the computer is agony..strangly enough i also have a trapped nerve down the top of my right leg for last 17yrs and it has been burning like fire and feeling like its tearing my leg apart realy painful for the last four weeks'

i know im a moan but this level of pain is becoming unbearable i cant escape from it

a sad
moonlight :(

ps have taken 90mg codeine at once does this seem too much?
sleep is not only a dream

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Aiken
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Postby Aiken » Sun Aug 09, 2009 2:13 am

I can't say much to help, but I will say that anyone who is in constant pain is fully entitled to moan about it. :(
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

Polar Bear
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Postby Polar Bear » Sun Aug 09, 2009 3:43 am

Good luck with doc on Friday.
Don't know about your dosage but know that I have often taken 60mg. What about googling 'codeine dosage' and see what pops up.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

dogeyed
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Postby dogeyed » Sun Aug 09, 2009 1:55 pm

Moonlight,
That is very interesting about you being in the hospital with the flu, and you had no leg pain! I wonder why. Did they give you some special drugs that coincidentally helped it, OR were you on strict bedrest and didn't get up on your feet at all during that period. I think it's important to figure out how come you were okay whilst in the hospital. That way, you can recreate whatever it was, and perhaps get some relief.

I also know we've all coached you on needing a stronger pain killer than the codeine you've been on, and your prescribing and treating doc for your RLS ought to be willing to do that, for sure. Just tell him the codeine isn't doing it for you anymore, that your legs are a mess all the time, that you're not getting any sleep to speak of.

I do know that the more active a person is, then the more the legs will hurt at rest, particularly if a person stands around on their feet all day for whatever reason, like work, or house cleaning, or taking care of a lot of activities. Me, I'm older and on disability, so I don't have to work, I also neglect my housework and don't cook much anymore, so I stay off my feet most of the time. But whenever I HAVE to do stuff and I'm up and about, then when I finally can rest, my legs will spasm around and they hurt, no matter how good my medicine usually works.

Also, I might add, I recall you are also taking Diazepam, and that medicine needs to be upped a little bit every now and then, or you'll get "withdrawal" type symptoms, and could be if the doc can adjust that medicine too, that possibility of making RLS worse can be eliminated also.

To help with the pain until you see your doc, take some very warm baths, and also get you a little heating pad that you plug in, or even a hot water bottle, and lay it on your legs when you are sitting with your legs up and relaxing, or when you go to sleep. Sometimes an alka seltzer will help with pain, even better than your prescribed drugs, becuz it reduces inflammation. Also, stretching out your calves before you lay down will lessen the intensity of spasm.

I'm relieved you will be seeing your doc this week. I really hope you will stick up for yourself, cry if you have to in front of the doc, just let it all out, so he'll know exactly how bad things have gotten for you. Then maybe he'll give you better medications than you've got. They make medicines for a reason, and if anybody had a reason to get the best medicines and dosages, YOU DO.
GG
"It's not how old you are; it's how awful you feel."

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Neco
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Postby Neco » Sun Aug 09, 2009 2:54 pm

You have got to push your doc hard for a strong painkiller. That's a ridiculous amount of suffering to be in..

90mg of Codeine isn't going to kill you if that's what you're worried about. Once you start going above 150 - 250mg there's not much point in taking it I don't think. As if even that much doesn't help enough for you to feel normal and w/out pain its really best to switch to a strong pain med.

Codine is good for having a tooth pulled, or other dental work and very mild pain.. But it sucks for moderate to severe pain. It's also a horrible choice to try and treat pain like this with. The LD50 (avg lethal dose) is pretty high up there, and the fact that the more you take, the less efficient it becomes makes it not worth it to take more than the daily recommended maximum. But even approaching that is useless in most cases.

I'm not a doctor but I'd say if you stay below 200mg you have nothing to worry about. Codeine becomes useless after about 400mg or so (I forget the exact number) because at that point no matter how much of it you take, your liver can't keep up and will only convert 10% of that into morphine (this is how codeine works) in a 24hr period. 200mg is pretty safe though. As its pretty much around half the maximum recommended daily dose.

I used to go up to the max constantly, just to get "good enough" relief for my RLS.

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HeatherB
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Postby HeatherB » Tue Aug 11, 2009 5:13 am

When I do have so much pain that I get a Tylenol 3 from my mom (and that has to be a lot of pain) I take 200mg. I'm only 108 pounds. Doctor proscribed me 200 mg every 4 hours as a teenager after surgery. I was 88 pounds then.

moonlight
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Postby moonlight » Thu Aug 13, 2009 3:24 am

hi soz not replied to add insult to injury my mood crashed however I fought back and am here again.
In hospital sleeping at a different angle seemed to help but of course I cant get that angle at home.
no accupuncture on monday as the dr was on holiday but will start it this monday coming.
yeah i dont want to up the codeine as i will get used to it then wot ,,,it seems to be the only thing working. I will ask for something stronger and for investigations to see if there are any other probs that could be causing the pain.

pain has eased a bit , thank goodness, but as you can see i'm not sleeping again as i'm now on a high.....only a little restlessness with the rls tonite...which makes such a difference.

I also have a permenant pain in the base of my back dont know if this has any bearing on the rls....even coughing hurts.....this pain has been there since my son was born 17yrs ago...sometimes i cant hardly move or relax my back!

anyhow suppose I should go ack to bed and try to sleep as I know from previous experience if i dont then I go for weeks with hardly any sleep and my bipolar becomes way worse....I dont think is good having rls and bipolar as they deffo feed off each other.

I hope this finds you all well or as well as you can be

lov'n' hugs
moonlight xxxx
sleep is not only a dream

moonlight
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Postby moonlight » Fri Aug 14, 2009 8:03 pm

was at gp today no not getting anything different for the pain ....am upset.....to see dr that gives me acupuncture to see if she has any ideas...the one med i can get is amytriptylene but i can as im bipoalr and it makes me irritble , aggressive, depresed and self harm ....so am between a rock and a hard place just now....90mg is ok of codeine as long as its not too often.....I could cry
sleep is not only a dream

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Neco
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Postby Neco » Sat Aug 15, 2009 12:59 pm

What reason did the GP give ?

That's ridiculous.. Can you not write to some kind of board that oversees your public system, or to a supervisor ?

moonlight
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Postby moonlight » Sun Aug 16, 2009 11:35 pm

Just she doesn't want me on stronger painkillers...i'm realy hacked off.....going to pain clinic tomoz , speak to the dr there....I don't hold out much hope.....you know if the dr had rls then she'd understand just how much pain I go thru but she doesn't ....I think they don't take it seriously here.......but I'm most certainly serious about not being able to take much more of this pain :cry:

a dejected moonlight xxx
sleep is not only a dream

dogeyed
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Postby dogeyed » Mon Aug 17, 2009 1:16 pm

Hi Moonlight,
Oh, I'm pretty outraged at your doc for not helping you with the pain, but gosh I'm glad you're going over to the pain clinic, maybe they'll help you. Looks like your doc would have at least tried Mirapex or Requip or something like that, doesn't have opiate in it, might help for a while anyway. If the pain clinic don't help, try a neurologist maybe.

It occurred to me, as I was reading about your back pain and all, I also got low back pain, real sharp, been going on for years. Well, they give me a cousin to Neurontin called Lyrica, they're similar medicines, and overnight that pain in my back went away. They had to up the dose fourfold over the next few months, which is expected and docs ought to know about that, until it plateaus. Might help your RLS a little too.
GG
"It's not how old you are; it's how awful you feel."

moonlight
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Location: scotland

Postby moonlight » Mon Aug 17, 2009 2:44 pm

Hi been to pain clinic for acupuncture again was telling the dr about my plight for help , got an appt for assessment in september to see what can be done for my pain ...she says 90mg of codeine is too much to always take i'll be used to it and wrecked in no time...so stick with acupuncture for next few weeks....she will also check out my back pain.....so heres hoping i get some relief
hugs
moonlight xxx
sleep is not only a dream

Polar Bear
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Postby Polar Bear » Mon Aug 17, 2009 3:17 pm

I would have thought that a stronger pain killing medication which you then take less of would help. Can't understand your doc not wanting to go beyond codeine.

I am also within the UK health system. When I told my doc that codeine was of no real help (along with my requip) he agreed to give me tramadol. I (quite rightly) got a lecture on being careful etc. etc. but my doc fully understood all about the quality of life issues that are so important.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

moonlight
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Location: scotland

Postby moonlight » Thu Aug 27, 2009 6:07 am

Hi Polar bear..she just won't give me stronger pankillers...but at the moment the acupuncture is keepin it at bay...I was wondering if anyone has tried using a tens machine and if so did it help

huggles
moonlight xxx
sleep is not only a dream

Polar Bear
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Postby Polar Bear » Sun Aug 30, 2009 10:49 am

I've never used a tens machine for rls, tho I have used one on a short term basis when having physio.

I daresay it may temporarily help symptoms even if only as a distraction while actually in use but it only covers a small area at a time.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation


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