my RLS story...
- Thread starter misk
- Start date
Christ!
Bluelighter
- Joined
- Feb 24, 2006
- Messages
- 1,013
I actually helped to get some of those magnetic/copper bracelets removed from shelves from one chain of chemists in adelaide. The way they were advertised was that they were proven to be effective...not the standard 'may be effective'. Complained to the owner of this chemist who I've known for years...he agreed with me that it was deceiving to customers and wrote a letter.
Unfortunately placebo has been selling for hundreds of years...and they sell.
They're dangerous because they can produce a subjective perception that they are actually helping...which might stop that person from seeking further treatment or diagnosis of an underlying condition.
I'd like to think we're getting to the stage where homoeopathy will be known for what it is in the publics mind...seems to be increasing in popularity lately though.
We really need more science taught in schools...kids from reception and year 1 should even be taught WHY we have science and why it's so important.
Unfortunately placebo has been selling for hundreds of years...and they sell.
They're dangerous because they can produce a subjective perception that they are actually helping...which might stop that person from seeking further treatment or diagnosis of an underlying condition.
I'd like to think we're getting to the stage where homoeopathy will be known for what it is in the publics mind...seems to be increasing in popularity lately though.
We really need more science taught in schools...kids from reception and year 1 should even be taught WHY we have science and why it's so important.
Last edited:
i have since tried numerous GPs, all saying they cant help me with my symptoms.
i now suffer from panick attacks, sever anxiety, the pain in my legs is 10 fold even to what it was a month ago.
i attended the emergency room last night and was told i would have to see my GP (after waiting for 9 hours).
i am at my wits end with this, i have found a sooner appointment for a neurologist in late march, and tried to book an appointment with a psychologist, but this requires a pre appointment and a fee to be paid up front.
i now struggle to work and am struggling to pay bills, buy food or pay rent let alone buy medication that these doctors keep throwing at me when i tell them i know of only one thing that will help so far.
this is affecting my life in such a huge way, everything is falling apart and i am losing the ability to think in a way to produce anything positive of late.
i have applied for a centrelink illness allowance, but this will take upto or over 21 days to process, and even then is only 600 a fortnight.
i know this may not be as bad as it is for some, but at the moment i dont want to leave the house, talk to anyone or ask for anymore help as over the 2 years, 60+ doctors and 25+ medications i have tried, i am only going down hill and at a faster rate.
i dont expect there is much that anyone here can do to fix my issues, but at least i have a place to vent where im sure people at least understand.
i have told the doctors all of the symptoms including severe anxiety and panic attacks and they seem to just shrug it off and tell me to try another SSRI (which i have told them gives me extreme insomnia ontop of the RLS symptoms)
im now thinking i may have something more severe that is presenting symptoms similar to RLS as i have the sensation and pain 24/7 with no change at all and slight numbness in my toes.
please, if anyone has any form of advice, i am willing to try absolutely anything at this stage.
i'm unable to get any help with pain medication or any medication that is considered addictive which is reducing my options to near zero.
i now suffer from panick attacks, sever anxiety, the pain in my legs is 10 fold even to what it was a month ago.
i attended the emergency room last night and was told i would have to see my GP (after waiting for 9 hours).
i am at my wits end with this, i have found a sooner appointment for a neurologist in late march, and tried to book an appointment with a psychologist, but this requires a pre appointment and a fee to be paid up front.
i now struggle to work and am struggling to pay bills, buy food or pay rent let alone buy medication that these doctors keep throwing at me when i tell them i know of only one thing that will help so far.
this is affecting my life in such a huge way, everything is falling apart and i am losing the ability to think in a way to produce anything positive of late.
i have applied for a centrelink illness allowance, but this will take upto or over 21 days to process, and even then is only 600 a fortnight.
i know this may not be as bad as it is for some, but at the moment i dont want to leave the house, talk to anyone or ask for anymore help as over the 2 years, 60+ doctors and 25+ medications i have tried, i am only going down hill and at a faster rate.
i dont expect there is much that anyone here can do to fix my issues, but at least i have a place to vent where im sure people at least understand.
i have told the doctors all of the symptoms including severe anxiety and panic attacks and they seem to just shrug it off and tell me to try another SSRI (which i have told them gives me extreme insomnia ontop of the RLS symptoms)
im now thinking i may have something more severe that is presenting symptoms similar to RLS as i have the sensation and pain 24/7 with no change at all and slight numbness in my toes.
please, if anyone has any form of advice, i am willing to try absolutely anything at this stage.
i'm unable to get any help with pain medication or any medication that is considered addictive which is reducing my options to near zero.
Mr Blonde
Bluelighter
- Joined
- Oct 1, 2006
- Messages
- 13,813
I'm really sorry to hear that misk; I am out of alternative ideas here as well. The only thing I can think of is going to your main GP and asking him upfront what the issue is about alprazolam. Ask him if he thinks that you will/might abuse it.
Then, ask if he would be more comfortable if he put you on a daily dosing regimen with the closest pharmacy to your house. Say you just need the prescription up to when you see the neurologist and get information from them, up until then you can just get the doses you need each day.
It might work; I know of a couple of patients who were caught abusing their morphine prescriptions. Due to the severity and legitimacy of their pain their doctors decided to keep them on the drug, but they had to get it each day from their closest pharmacy and take it there.
Have you tried any other long acting benzodiazepines? Because one of those would probably be best for daily dosing, though the doctor might request that the pharmacy lets you take a dose home for night.
Then, ask if he would be more comfortable if he put you on a daily dosing regimen with the closest pharmacy to your house. Say you just need the prescription up to when you see the neurologist and get information from them, up until then you can just get the doses you need each day.
It might work; I know of a couple of patients who were caught abusing their morphine prescriptions. Due to the severity and legitimacy of their pain their doctors decided to keep them on the drug, but they had to get it each day from their closest pharmacy and take it there.
Have you tried any other long acting benzodiazepines? Because one of those would probably be best for daily dosing, though the doctor might request that the pharmacy lets you take a dose home for night.
to be honest the pain during the day i can handle, so im not too fussed with long acting benzos for day time use, but would be good for a good night sleep.
what you have suggested is actually a really good idea!
i was able to get tramadal after pleading with him which is the first time ive ever asked for pain relief and 200mg works, im not sure if they are willing to let me take a dose of that kind, but would be curious if any true opioid which is a bit stronger would help without making the symptoms worse.
from a bit more reading, i have what is called refractory RLS, which doesnt respond to conventional treatment, and has been found to possibly need a combination of benzos, opioids and gabapentin, but it could also be things such as MS or fibromyalgia
what you have suggested is actually a really good idea!
i was able to get tramadal after pleading with him which is the first time ive ever asked for pain relief and 200mg works, im not sure if they are willing to let me take a dose of that kind, but would be curious if any true opioid which is a bit stronger would help without making the symptoms worse.
from a bit more reading, i have what is called refractory RLS, which doesnt respond to conventional treatment, and has been found to possibly need a combination of benzos, opioids and gabapentin, but it could also be things such as MS or fibromyalgia
Mr Blonde
Bluelighter
- Joined
- Oct 1, 2006
- Messages
- 13,813
^ 200mg is a bit high for a starting dose, but if your doctor took you up to that level then he may be open to it again.
Panadeine Forte hasn't worked for you... have you tried a CWE on a bunch of tablets to see if that provides some temporary relief?
Unfortunately, in Australia there isn't much in the range of mid-level opioids. It jumps from prescription codeine/paracetamol and tramadol to morphine, oxycodone and the like which are S8 drugs and are hard to get scripts for most of the time. They are in a whole different ball park to trying to get alprazolam.
Panadeine Forte hasn't worked for you... have you tried a CWE on a bunch of tablets to see if that provides some temporary relief?
Unfortunately, in Australia there isn't much in the range of mid-level opioids. It jumps from prescription codeine/paracetamol and tramadol to morphine, oxycodone and the like which are S8 drugs and are hard to get scripts for most of the time. They are in a whole different ball park to trying to get alprazolam.
yeah i know pain meds are hard to get, thats why i never asked, and i didnt want the unwanted attention if there was a chance they wouldnt work anyway.
i did try 50mg tramadal, but it did nothing, then waited 2 hours, had 2, still nothing, waited another 4 hours, then tried 4 and it had some effect.
this will give you some idea of the pain i am experiencing.
i can only assume the chemical makeup of tramadol is different enough to possibly not have the same effect on the tolerance ive built up to codeine over the years, but it takes around 10-15 nurofen plus to relieve the pain, and even then its not complete relief, i think its just the fact that the feeling of the codeine becomes more than the pain, but the pain still exists.
it is extremely difficult for me put the condition and how different medications effect it into words unfortunately.
i know that moderate amounts gabapentin, tramadol and say 1mg xanax would be a great combo, but constant use would outweigh any short relief.
i did try 50mg tramadal, but it did nothing, then waited 2 hours, had 2, still nothing, waited another 4 hours, then tried 4 and it had some effect.
this will give you some idea of the pain i am experiencing.
i can only assume the chemical makeup of tramadol is different enough to possibly not have the same effect on the tolerance ive built up to codeine over the years, but it takes around 10-15 nurofen plus to relieve the pain, and even then its not complete relief, i think its just the fact that the feeling of the codeine becomes more than the pain, but the pain still exists.
it is extremely difficult for me put the condition and how different medications effect it into words unfortunately.
i know that moderate amounts gabapentin, tramadol and say 1mg xanax would be a great combo, but constant use would outweigh any short relief.
Mr Blonde
Bluelighter
- Joined
- Oct 1, 2006
- Messages
- 13,813
^ No problems with understanding your posts comrade, I'm used to having to decipher statements and symptoms people say that are near illegible. 
That's basically how opioids work; they dull the pain. It's still there, but it's lessened and more bearable.
Tramadol is different to the other opioids; it has opioid agonist activity, but also acts on serotonin and norepinephrine which is the leading theory for it's analgesia I believe. I personally don't like it, but if it works for you it's worth a shot. Doesn't sound like it's worked that well though?
It's good you are thinking about the long term. It's just a shame you can't get that short term relief right now. Hopefully the neurologist appointment unveils something and gives you an effective long term treatment plan.
That's basically how opioids work; they dull the pain. It's still there, but it's lessened and more bearable.
Tramadol is different to the other opioids; it has opioid agonist activity, but also acts on serotonin and norepinephrine which is the leading theory for it's analgesia I believe. I personally don't like it, but if it works for you it's worth a shot. Doesn't sound like it's worked that well though?
It's good you are thinking about the long term. It's just a shame you can't get that short term relief right now. Hopefully the neurologist appointment unveils something and gives you an effective long term treatment plan.
im not sure how strong tramadol is, but while it may say help with a migraine or similar, the pain i have may not so much be created in the same way as normal pain (ie. a cut where the brain receives a signal that there is damage done) which is why i think i find it hard to get relief on regular doses.
but i am 100% thinking long term as i have only just recently accepted the fact that i may never find a solution.
i have a feeling my condition may have something to do with norepinephrine or NMDA channels as quite alot of the similar conditions i read about have mentioned an issue with norepinephine in some way or another in conjunction with dopamine (or dopamine receptor damage), GABA, or serotonin.
im hoping i can find some good results through the neurologist so i can provide advice to others who have failed to find any medication or answer to why they have such symptoms.
will be quite interesting.
this forum has been very useful in talking about the condition with people that have better than usual understanding of how medications and the brain work and interact with each other.
you've been very helpful Mr Blonde and you are a great asset to this forum!
but i am 100% thinking long term as i have only just recently accepted the fact that i may never find a solution.
i have a feeling my condition may have something to do with norepinephrine or NMDA channels as quite alot of the similar conditions i read about have mentioned an issue with norepinephine in some way or another in conjunction with dopamine (or dopamine receptor damage), GABA, or serotonin.
im hoping i can find some good results through the neurologist so i can provide advice to others who have failed to find any medication or answer to why they have such symptoms.
will be quite interesting.
this forum has been very useful in talking about the condition with people that have better than usual understanding of how medications and the brain work and interact with each other.
you've been very helpful Mr Blonde and you are a great asset to this forum!
Mr Blonde
Bluelighter
- Joined
- Oct 1, 2006
- Messages
- 13,813
^ No problems, brother.
Tramadol is theorized to have some NMDA antagonist effects. You could test out whether an NMDA antagonist would help by dosing on something like DXM. Not too high, you don't want to go on a full fledged dissociative trip, but maybe a first plateau type dose. 100-200mg, to see if it helps with your symptoms at all.
Propranolol is a beta-adrenergic antagonist which could be useful in seeing if it helps reduce some symptoms.
Dopamine would almost definitely play a part, but since dopamine agonists have not had much effect maybe a different mechanism plays a big part. Have you had much experience with dopamine releasing agents or dopamine reuptake inhibitors?
Tramadol is theorized to have some NMDA antagonist effects. You could test out whether an NMDA antagonist would help by dosing on something like DXM. Not too high, you don't want to go on a full fledged dissociative trip, but maybe a first plateau type dose. 100-200mg, to see if it helps with your symptoms at all.
Propranolol is a beta-adrenergic antagonist which could be useful in seeing if it helps reduce some symptoms.
Dopamine would almost definitely play a part, but since dopamine agonists have not had much effect maybe a different mechanism plays a big part. Have you had much experience with dopamine releasing agents or dopamine reuptake inhibitors?
is a GP likely to prescribe a trial of DXM though?
a DRI is on the list to discuss with the neurologist as there are many varied types and combinations and i have looked into it in the past as my brother has severe ADHD, so there could possibly be imbalances that don't quite trigger the behavioral aspects.
i do agree, but from the reading i've done after my previous treatments, finding which dopamine receptor has the issue, what the issue is and perhaps even having a combination of receptors that need opposite or varied treatment could make treatment difficult.
im a bit unsure about exactly how much specific detail tests done by a neurologist will be able to provide, but reading through the details of Fibromyalgia again (http://en.wikipedia.org/wiki/Fibromyalgia) i noticed a few bits and pieces i didn't think much of last time and it mentions much of what we have discussed which will be another point of discussion for the neurologist.
again, very useful information to know, thank you. i have learned more from this thread than the 2 years from GPs and specialists lol.
edit - some of these medications may be worth discussing with a GP to see if they have any knowledge of them.
http://en.wikipedia.org/wiki/Tropisetron
http://en.wikipedia.org/wiki/Cyclobenzaprine
http://en.wikipedia.org/wiki/Tizanidine
http://en.wikipedia.org/wiki/Cymbalta
a DRI is on the list to discuss with the neurologist as there are many varied types and combinations and i have looked into it in the past as my brother has severe ADHD, so there could possibly be imbalances that don't quite trigger the behavioral aspects.
i do agree, but from the reading i've done after my previous treatments, finding which dopamine receptor has the issue, what the issue is and perhaps even having a combination of receptors that need opposite or varied treatment could make treatment difficult.
im a bit unsure about exactly how much specific detail tests done by a neurologist will be able to provide, but reading through the details of Fibromyalgia again (http://en.wikipedia.org/wiki/Fibromyalgia) i noticed a few bits and pieces i didn't think much of last time and it mentions much of what we have discussed which will be another point of discussion for the neurologist.
again, very useful information to know, thank you. i have learned more from this thread than the 2 years from GPs and specialists lol.
edit - some of these medications may be worth discussing with a GP to see if they have any knowledge of them.
http://en.wikipedia.org/wiki/Tropisetron
http://en.wikipedia.org/wiki/Cyclobenzaprine
http://en.wikipedia.org/wiki/Tizanidine
http://en.wikipedia.org/wiki/Cymbalta
Last edited:
Mr Blonde
Bluelighter
- Joined
- Oct 1, 2006
- Messages
- 13,813
Just go to a pharmacy, get some Robitussin DX and try it for yourself. Watch out for the nausea though, and don't combine it with other serotonergic drugs as there is a risk of serotonin syndrome.
It could be difficult, and perhaps impossible depending on the cause of your symptoms, to narrow it all down to one or two receptors. A DRI would increase dopamine levels across the board, hit most/all of the targets and possibly improve your condition.
This makes me think of something else, a reason for why dopamine agonists might not have worked. Dopamine agonists in general aren't euphoric, however substances that release dopamine such as amphetamine, or that inhibit the re-uptake of dopamine, a la methylphenidate, are euphoric. As if only dopamine itself can provide that pleasure, and drugs that try to mimic it fall short somehow. If you can increase your levels of dopamine itself, then you may have better luck relieving symptoms.
This is all assuming that a lack of dopamine or a dysfunction of the system is to blame, rather then another disease. And long term use of a dopaminergic could worsen things, as your brain decreases dopamine output and down-regulates receptors in an attempt to normalize. Lowering your doses, or going off the stimulant, could cause a severe rebound.
Levo-dopa is another substance you could look into; a precursor to dopamine that is used in Parkinson's patients to increase dopamine levels.
I have a friend who has fibromyalgia. She was on SSRIs to try and treat it, which worked for a little while but then stopped having a positive effect. The most recent news I know was that she was rx'd morphine sustained-release to relieve the pain, since she had been unable to work for a while and was on Centrelink benefits.
i have tried sinemet, which is ldopa/carbida so it helps cross the blood brain barrier, it increased symptoms ten fold.
this is why im looking in other areas, although, when i would take ghb for an extended period, my legs would be insanely sore once i stop, obviously a withdrawal symptom, but god only knows why, and it may not be linked anyway lol.
from what i understand, Fibromyalgia may not present all symptoms which is what has me intrigued in that regard as RLS is rarely such a constant consistent pain
sorry for all this rambling, i obviously do alot of random reading of various conditions.
the more info i can present to the neurologist the better.
lagger, i know you have a similar story, spill the beans, im extremely curious about the symptoms and other related issues other people with RLS or RLS like symptoms have.
this is why im looking in other areas, although, when i would take ghb for an extended period, my legs would be insanely sore once i stop, obviously a withdrawal symptom, but god only knows why, and it may not be linked anyway lol.
from what i understand, Fibromyalgia may not present all symptoms which is what has me intrigued in that regard as RLS is rarely such a constant consistent pain
sorry for all this rambling, i obviously do alot of random reading of various conditions.
the more info i can present to the neurologist the better.
lagger, i know you have a similar story, spill the beans, im extremely curious about the symptoms and other related issues other people with RLS or RLS like symptoms have.
Mr Blonde
Bluelighter
- Joined
- Oct 1, 2006
- Messages
- 13,813
^ Exactly, while you are waiting for your appointment you should get all you can learn and write down so as to get the best possible outcome.
And it is possible fibromyalgia could be a cause or present; it is often uncommon that someone gets all the symptoms of a disease. Sometimes it is just the major symptoms, or certain symptoms.
Weird that the L-dopa increased your symptoms... anyway, I'd go for the low dose DXM experiment for now and see if a NMDA antagonist helps at all.
I gotta get some sleep now, but have a good night. :D
And it is possible fibromyalgia could be a cause or present; it is often uncommon that someone gets all the symptoms of a disease. Sometimes it is just the major symptoms, or certain symptoms.
Weird that the L-dopa increased your symptoms... anyway, I'd go for the low dose DXM experiment for now and see if a NMDA antagonist helps at all.
I gotta get some sleep now, but have a good night. :D
