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  • AADD Moderators: swilow | Vagabond696

my RLS story...

oh man, what an epic few days it has been.
i wish the doctor would have discussed meloxicam with me, he didn't mention anything at all...
had intense stomach burning, shortness of breath, breathing was labored, nausea, fevers and chills, few other random bits and pieces.
did nothing for the pain though lol

i think the stretches and crampeze are doing ok though, so far leg pain is lessened, had alot of trouble sleeping whilst on the meloxicam due to the side effects combined with the stress im going through atm, so hopefully tonight will be ok, feeling much better now.
had only 5 hours sleep over 3 days and it sent me a bit manic yet withdrawn, so would be nice to feel normal again.
 
^ Stomach burning I would expect, but the rest of those symptoms sounds like an allergic reaction to the meloxicam? Maybe you should talk to the doctor about that.
 
i did a bit of reading last night and apparently some people have had a similar reaction...
im not allergic to anything, but the stomach burning and gastro toxic side effects i had was enough to put me off it, dont want another stomach ulcer thanks.
not sure if it needs time for the effects of the medication to be felt (ie. after a week or two), but i noticed no change in terms of pain for the 3 days i was on it other than side effects.
 
sorry if this is becoming more of a journal than anyting, but im still really curious if any of the gear i've done over the years could have pushed my RLS over the edge leading to a breakdown o all other levels.

surely there has to be others out there in similar situation, but hard to tell due to the random variables that can cause the symptoms.

at the moment i get one ok night sleep to one of no sleep at all, thats with 10ug clonidine, and on the second night ill have 2mg xanax as its all i can get onto.
i couldnt find anything stating not to do so, so tonight i had a 25mg seroquel hoping the clonidine and xanax will keep the RLS symptoms that can appear from seroquel away.

i feel if i can get a few decent, properly scheduled days of sleep under my belt i can actually function and feel ok speaking to people or leaving the house.
i really need a job asap or i am going to lose the lease on this house and that will crack me in a way i cant even begin to comprehend. i took the clonidine at 1 hoping it would help, made me feel heavy but my mind was still racing, so had the xanax at 1:45, but i know it doesnt do what it used to, so am only slightly less anxious.
so in comes the 25mg seroquel just as a hope so i can get my second night of 4-5 hours of sleep in a row in over a week.

probly not the best mix, but i cant handle the hyperactive anxiousness i have when i have sleep trouble, its all just a vicious cycle.

again, dont mean to be sounding like im bitching, but i am learning alot along the way, good and bad and i know there are so many other options for sleep aids that can have effects on both my leg pains, depression and insomnia, so just gotta stick with it for now.

i am continuing the stretches, deep heat and crampeze, but the leg raps made the pain ten fold worse and side effects of the anti-inflam were just not worth it as it just added to tress which added to more insomnia, which makes my legs hurt more lol.
so a sad vicious cycle.
 
Hey thanks for putting this up , it's not taught a whole lot in med school and seems to only be a GP who knows about it when patients such as yourself come in
at least you have someone you see regularly, as I can imagine walking in with all those symptoms and past exp with meds would be pretty daunting for a 15 min GP consult.

Seroquel has agitation as a big complaint as you said, so curious to know if this helps.
and Mr Blonde's comments are true about NSAIDS, but you had no positive effects anyhow, so that's that over

here's an excerpt from the GP bible on RSL, may or may not help.


RLS, also known as Ekbom's syndrome, is a rather common movement disorder of the nervous system where the legs feel as though they want to exercise or move when the body is trying to rest. The major complaint of sufferers is of disruption both to sleep and of relaxing activities, such as watching television or reading a book. Prolonged car or airplane travel can be difficult.
RLS is frequently an undiagnosed disorder because people often don't complain about it to their doctor. A Canadian study reported that 15% of people sampled reported ‘leg restlessness’ at bedtime.
The diagnosis is made from the history - there are no special diagnostic tests.
Its prevalence increases with age so it mainly affects elderly people. Women are more prone to get RLS and it is aggravated by pregnancy. The exact cause of primary RLS is not clear. It is not related to exercise and does not appear to follow strenuous exercise.
Symptoms
There is an urge to move legs upon resting, particularly after retiring to bed. This urge is a response to unpleasant sensations in the legs, especially in the calves. The sensations are commonly and variously described as crawling, creeping, prickly, tingling, itching, con-tractions, burning, pulling or tugging, electric shock-like. However, sometimes patients are unable to describe the sensation or refer to it as simply a compulsion to move the legs.
In some patients the arms are affected in a similar way. The symptoms seem to be aggravated by warmth or heat. Many patients with RLS also experience nocturnal myoclonus.
Secondary (medical) causes include:
anaemia
iron deficiency
uraemia
hypothyroidism
pregnancy (usually ceases within weeks of delivery)
drugs (e.g. antihistamines, antiemetics, selective antidepressants, lithium, selective major tranquillisers and antihypertensives)
Management
Iron studies should be performed and, if low, treat with iron and vitamin C tablets. Advise patients that although RLS can come and go for years it usually responds well to treatment.
Self-help advice
Perform activities that can reduce symptoms, for example, a modest amount of walking before bedtime, massage or prescribed exercises (see Figure 71.6). Note: Getting out of bed and going for a walk or run does not seem to help RLS.

Click for larger image
Figure 71.6 Stretching exercises for restless legs
Good sleep hygiene, namely regular sleeping hours, gradual relaxation at bedtime, avoidance of non-sleep activities in bed (e.g. reading, eating).
Diet: follow a very healthy diet. Avoid caffeine drinks, smoking and alcohol.
Try keeping the legs cooler than the body for sleeping.
Exercises: a popular treatment is gentle stretching of the legs, particularly of the hamstring and calf muscles for at least 5 minutes before retiring. This can be done by using a wide crepe bandage, scarf or other length of material around the foot to stretch and then relax the legs (as shown in Figure 71.6).
Pharmacological treatment
The following may be effective if simple measures fail:
paracetamol 1000 mg (o) nocte or
clonazepam 1 mg (o) 1 hour before retiring or
paracetamol 1000 mg (o) plus clonazepam 1 mg or diazepam 5 mg
Levodopa, gabapentin, codeine, baclofen and propranolol may be helpful. Carbamazepine, quinine, antipsychotics (avoid), antihistamines (avoid) and antidepressants are generally unhelpful.
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the tubigrip might not be for 'compartment syndrome' esp since you don't add pressure to compartment syndrome, you release it. but prob it is to help lymph up the legs to relieve over all swelling.

take care
 
^Top Post.

At least in the USA i'm aware that Clonazepam (Rivotril/Klonopin) Is considered first line treatment in RLS? It's a brilliant muscle relaxer, and in terms of addiction i personally find it the least addictive benzo, with possibly the least amount of side-effects long term (the users i know who've been on it long term agree, and seem fine).

Lyrica (pregabalin) or Gabapentin are probably great options, however lyrica isn't covered on the PBS for this syndrome, however i can't see a GP having a major problem dodging this up for you.
 
thanks for the post.
good info.
unfortunately i have a tolerance to benzos, i wasn't able to get any decent results from 2mg of clonazapam and really dont want to risk dependence.
i would like to try lyrica, but its just far too expensive, so even if it did work, once i get back into full time work, i wouldnt be able to afford it.

at the moment the legs are doing quite good if i get some sleep, managed 5 hours or so, and i feel great lol. sucks to think 5 hours is a good nights sleep, but better than none :)
had to take 10ug clonidine, 2mg xanax and 25mg seroquel and it was a very nice sleep.

at the moment i need to see a psychiatrist on sat as i have alot of stress from not working, so i need to treat that and get back to working before anything will work. if i cant get to sleep at night on a regular basis i cant hold even a casual job. its a shitty cycle, im stressing about not having enough income, which is effecting me getting to sleep which is effecting getting a job lol.

i was going to discuss avanza or Amitriptyline as a sleep aid as it may help and be able to be used longer than say z non benzo sleep aids, but i was going to discuss Carbamazepine with the Dr as well and wonder why it wouldn't be effective?

anyway, thanks for putting up with my random rants, typing shit out has been a good way of putting my thoughts at ease in some aspects and i hope that others with RLS could only learn from whats been suggested by others
 
I have random episodes where i get pretty bad cramps in those areas of a night time, specifically after large alcohol sessions, but at other times as well.

I can hook up lyrica through an illicit source pretty cheaply, much cheaper than the script price, maybe around 10% of that cost for a box of 150mg tablets.

I daresay you could find a physician to get you an authority dodgily for PBS on the medication. surely. If you discuss the possible treatment with your doctor. I remember once i had an addiction GP for my opiate use, and told her to keep w/d at bay i had been using lyrica, she checked it up in her MIMs book, and was more than happy for me to keep taking it illegally or prescribe it for me, on the sly through pbs.
 
Fuck.
the Dr wouldn't give me lyrica or even repreve on the pbs or something to help me sleep and told me to wait til I see the neirologist at the end of the month.
don't know what category I fall into, but rls is listed as a neurological disorder and I can't get relief from anything else they are willing to give me, so I would have thought I would be able to get it in the pbs.

Have to try a random gp to try get me something to sleep as I lined up a job interview thinking I would at least get something to help :(
 
^ Repreve is not listed on the PBS.

Lyrica is only listed 'for the treatment of refractory neuropathic pain not controlled by other drugs'.

I'm not sure on why he couldn't do a PBS script for on the lyrica... perhaps he considered that since you are going to see the nuerologist maybe he feels that all options have not been exhausted yet so you aren't suitable for a subsidized script?

And if it was specifically going to be used for sleep then I can see why he wouldn't write it, not that I agree with it but I see where he is coming from.

Most doctors are careful about making sure people are actually eligible for the PBS, as they can get in trouble for not prescribing properly under it. Enough trouble and they won't be eligible to write PBS scripts at all, which would make them a fairly unpopular doctor I imagine.
 
nah hes aware of the fact that i have pain 24/7 because of the RLS and even said himself that i have tried all medication (except opiates which they won't prescribe) that would be given to someone with RLS.
im in another fucked situation where i cant afford full price medication but there isn't anything on the PBS that they can give me.
 
^ That's fucked then. I wonder why he wouldn't do it under the PBS?

Is this still your family's doctor? Maybe go back to one of the other ones and ask him for a PBS script for Lyrica. It's a pain to see a lot of doctors though.
 
nah it was the place i've had a bit of trouble with, but they do walk ins, so sometimes is my only option cause i cant really plan when i don't sleep and can't get an appointment with the familys GP til next week. other than that, i have to sit and wait until i see the neurologist, but
im really worried they will tell me 'i cant fix you' and i'll be back at square one.

ended up getting some zopiclone off the GP round the corner which ive only seen once before, but he didn't do it under the PBS either :/ dunno what the deal is there.
will be the first night of semi normal sleep in over 2-3 weeks if all goes to plan.
 
so the psych thinks i have anxiety-depression syndrome.
my anxiety gets out of hand which makes me depressed apparently.
sadly most of this is caused by my legs, but at least i can attempt to treat this so i can get back to work eventually.

he gave me the anti-psychotic zyprexa (olanzapine), but im a bit unsure if it will achieve anything different to the seroquel :/

it has a long half life and should help me sleep, so we'll see how it goes anyway.
 
^ I was on risperidone, which at the max is at the low end of the half-life of olanzapine and I was always wanting to just sleep and do nothing each day.

I don't like antipsychotics at all, I don't feel as if they even really helped me at all. They reduced psychotic symptoms for me obviously, but that benefit was basically cancelled out by the depression it caused. :\
 
well sadly the olanzapine gives me full body restlessness which is quite bad and increases my leg pain.
it didn't make me tired and have had 2mg xanax and 2x zopiclone.
i only have enough tablets to get me to the next appointment, so cant double up, but if i did id be in more or a situation.

he did say there was a few other meds he had in mind if this did what we thought (ie. made RLS worse)

argh
time for antipsycotic number 3...

zeldox is the psychiatrists next choice.
dont know if i attract doctors that have no idea or what, but i dont really have the mental capacity to do this trial and error shit.
they better at least give me the referral to a pain clinic or something that actually helps my legs.
 
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why the fuck is life made so hard for people with medical problems...
today i asked for my medical records to be released to me on the spot (as i have had done in the past at other clinics) and was told this is not possible.
i then talked them in to it and had to sign a release form which is sent to head office for them to consider the matter, then charge me $17 to have them released which could take weeks.

i'm trying to get on a disability payment as a sickness allowance isn't enough for me to live on plus pay for medical tests or medication so i have to wait months for one appointment at a public service meanwhile no one helps as i get the response 'wait until you see such and such'.

i haven't been able to work more than one or two days a week since september last year but no cunt wants to accept that i qualify for a disability fund, so hopefully if i can show that i've been to so many doctors for the same issue for almost 3 years someone will clue on to the fact that maybe i need more help.

i was given a referral to a pain clinic which didn't exist, then when i asked to be referred properly they refused to do so without a diagnoses, nor provided pain relief other than voltaran rapid 50...

i feel like a cunt complaining about it cause i know other people have it worse off, but fuck me, i'm not an addict getting an intervention, hitting the lowest point of my life isn't going to help me in any way.

/rant - sorry to bitch.

edit - so i went to my normal GP and tried to discuss the disability allowance and he span some shit about normal GPs not being able to sign off on a disability form even with documents of my history and said the neurologist would need to do this, he also its 'only' 2 months until the followup appointment...

i dont get it. i've been on a steady decline mentally, financially and physically since june 2009 because of this shit but i just keep getting told to wait.
 
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ive tried gabapentin, but not pregabalin due to the cost.
gabapentin wasnt bad, but the dose needed to be quite high so again cost was a factor.

i search randomly for new RLS treatment occasionally but havent found anything, so ill have a look at this 'new' formulation and see what the go is.

at the moment my Dr is sticking to his 'does not respond to analgesia' yet the strongest pain killer ive had is digesic lol.

my biggest limit is finding treatment on the PBS so i can actually afford to buy it.
edit - forgot to ask, how would this effect the australian distribution and class of it in terms of being on the PBS?
 
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