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  • AADD Moderators: swilow | Vagabond696

my RLS story...

^ Maybe it's a variable thing? Works for some people, doesn't for others, due to individual biochemistry... akin to how codeine doesn't work for some.

Is it an expensive med to get prescribed? Too bad it's not covered under the PBS...
 
sounds good, although i would see it being mentally addictive if it did indeed manage to cancel out all pain signals being generated, i know for me, having no pain would be a sense of euphoria on its own, so i couldn't imagine someone with much worse, or untreatable pain may feel in a similar situation.

its a shame there are no RCs that have fallen on their ass as stims/psychs but come with unexpected accidental magical pain killing properties lol.
 
That article states 'no apparent side effects', but I could potentially see some side effects akin to what patients with congenital insensitivity to pain experience; i.e., unaware of injuries or other disease processes which may be taking place.
 
mm ive seen a documentary on a kid born with no pain sense at all and it was devastating.
im sure if what they claim is true it would at least give possibilities of treatment without full loss of all sense of pain and good combination possibilities with other medication to strike a balance of some sort.

i have to say, this has been really challenging me mentally and physically over the past week.
sleeping is again very rough, i had less than an hour a night fri-sun with no sleep during the day which makes me feel very anxious and withdrawn making it hard to talk to or see anyone making working impossible even if i did put aside the pain for a few days a week.

hopefully centrelink will approve the illness allowance tomorrow, but they cant tell me 100% yes or no if it will go through, when it will go though or if they need more info.
i have rent due by the 28th, so they had better get there ass into gear, would have been easier to say i'm not working and would have received a payment the next week - although due to a redundancy package i received last year and the fact that i kept working, im sure they would want me to wait a period of time before payments start.

on the plus side, i have an appointment with a psychiatrist tomorrow, whom of which i have no expectations in any way shape or for due to my recent doctor experiences, so any movement there would be great. i do hope at least that the Drs at the clinic will take me seriously after an appointment with the psych.

i've also reconnected with my family a bit as i have no choice (have previously not been into the whole family thing) and they have made an appointment with their regular GP to start a fresh completely which is on thursday. although, after what my mother saw at the emergency room, i think they are starting to believe me when i say getting help has been harder than pulling teeth. and again, no expectations, so any movement would be good also.

still a month til my neurologist appointment at st vinnies, but maybe the new GP will be able to help with a sooner, or even more suitable appointment.

i know it might be hard to believe, but this has destroyed my life as i knew it at the moment. its taken me a while to accept that i guess, doing so helps mentally slightly.
 
mm ive seen a documentary on a kid born with no pain sense at all and it was devastating.
im sure if what they claim is true it would at least give possibilities of treatment without full loss of all sense of pain and good combination possibilities with other medication to strike a balance of some sort.

Well there is congenital insensitivity to pain, which usually does not lead to too many problems though it can be associated with some intellectual disability, and then there is congenital insensitivity to pain with anhidrosis. This can be very serious as the child can be in fever, not realize it, and because they cannot sweat suffer from overheating that leads to irreversible damage to the brain and/or body. Many children born with it do not live very long at all.

i know it might be hard to believe, but this has destroyed my life as i knew it at the moment. its taken me a while to accept that i guess, doing so helps mentally slightly.

I believe you, and I understand how it is hard to come to terms with. If it means anything, at least you are doing all the right things and when you finally get through this you will be stronger for it. All the pain and suffering I have been through, particularly in the last year, has made me a much better person and much more able to deal with the world today.

It's good that you have your family involved as well; even if you're not much of a family person, it's great to have that support there for you and to have people caring about your welfare.

Hope your psychiatrist appointment goes well, comrade. :)
 
thanks, will be interesting to see how it goes.

i wonder if my not having any response to baclofen is anything to go off in this situation.
even at doses above 70mg i feel no different other than slight nausea, ie. no relaxing properties or pain relief.
even xanax unfortunately does very very little anymore, but i assume i now have a tolerance even through very mild use.
no better with the 2 combined at said does either :(
im bout to add some clonidine to the mix, but it still lowers my lood pressure more than anything and had a bit of a white out yesterday.

can anyone suggest any other muscle relaxer or similar that i could try?
i have been unable to discuss this with the GPs either as they think im fishing for benzos :/
 
Obviously a indica dominant strain would be best.

JWH-073 would be a good replacement (i dont know whether this one was a nasty cancer one) for a indica hash type of stoned.
 
yeah, sorry to burst your bubble lol
have tried to smoke weed in the past, it only ever helped me sleep one or two nights then was pointless, never did anything for the pain.

to be honest, so far i get better relief smashing my calves with something hard, benzos are the only thing that have come close to getting relief, but now have a tolerance even with mild use (once or twice a month)

i had 70mg baclofen, 4x nurofen plus, 2mg xanax and 20mg clondidine last night and pretty sure i only fell asleep cause my blood pressure was so low - could still feel the pain right til i remember falling asleep around 4am. today i passed out twice for several hours and was very light headed and pale until around 5ish. pretty much spent the day i bed.

so i'll try again with the same tonight, but with only 40mg baclofen and maybe 10mg clonidine instead.
 
apparently i have arterial compartment syndrome, the doctor managed to find a lot of sore spots of muscle mainly along the shin bone :/

have to wear some tubigrip along the full length of my lower leg, take crampeze and anti inflammatory mobic along with some exercizes and deep heat.

i dont really have high hopes as it doesn't explain why i've had it for going on 2 years and i'm hardly athletic - just some weights over the years, but i did smash clubbing and shuffling pretty hard most weekends for 3 years or so. still, i'm doubtful, but certainly happy to give it a go.

i know my RLS would be separate to that, and i cant see it helping with my sleep as i can't wear the leg wraps in bed. so will be interesting i guess, but no sleep at all last night has me feeling rough as guts. hope this shit works.
 
^ The compartment syndrome could be separate to the RLS and simply something that has developed now that is only adding to the pain you are experiencing. Hopefully the treatments the doctor is going for can relieve some of that pain.

Is this your family's GP by the way?

i dont really have high hopes as it doesn't explain why i've had it for going on 2 years and i'm hardly athletic - just some weights over the years, but i did smash clubbing and shuffling pretty hard most weekends for 3 years or so. still, i'm doubtful, but certainly happy to give it a go.

Compartment syndrome can be caused by other things. Going off wikipedia:

Common causes of compartment syndrome include tibial or forearm fractures, ischemic reperfusion following injury, hemorrhage, vascular puncture, intravenous drug injection, casts, prolonged limb compression, crush injuries and burns.[4][5] Another possible cause can be the use of creatine monohydrate; a history of creatine use has been linked to this condition.[6][7] Compartment syndrome can also occur following surgery in the Lloyd Davis lithotomy position, where the patient's legs are elevated for prolonged periods. As of February 2001, any surgery that is expected to take longer than six hours to complete must include Compartment Syndrome on its list of post-operative complications. The Lloyd Davis lithotomy position can cause extra pressure on the calves and on the pneumatic pressure Flowtron boots worn by the patient.

Anything that could have caused bleeding into the compartment could have lead to the syndrome. I'm interested to see if the meloxicam and leg wraps help.

The main ingredients of Crampeze seem to be rutin and magnesium; magnesium hasn't worked for you so far and rutin doesn't seem to have any studies done in humans, or at least ones showing efficacy; in animals it has anti-inflammatory effects apparently.

Make sure you don't take any other NSAIDS like aspirin, ibuprofen, diclofenac, etc... whilst on the meloxicam due to increased risk of gastrointestinal side effects. I have to make sure I don't take any of those when I take my celecoxib.
 
^ The compartment syndrome could be separate to the RLS and simply something that has developed now that is only adding to the pain you are experiencing. Hopefully the treatments the doctor is going for can relieve some of that pain.

Is this your family's GP by the way?

i dont really have high hopes as it doesn't explain why i've had it for going on 2 years and i'm hardly athletic - just some weights over the years, but i did smash clubbing and shuffling pretty hard most weekends for 3 years or so. still, i'm doubtful, but certainly happy to give it a go.

Compartment syndrome can be caused by other things. Going off wikipedia:

Common causes of compartment syndrome include tibial or forearm fractures, ischemic reperfusion following injury, hemorrhage, vascular puncture, intravenous drug injection, casts, prolonged limb compression, crush injuries and burns.[4][5] Another possible cause can be the use of creatine monohydrate; a history of creatine use has been linked to this condition.[6][7] Compartment syndrome can also occur following surgery in the Lloyd Davis lithotomy position, where the patient's legs are elevated for prolonged periods. As of February 2001, any surgery that is expected to take longer than six hours to complete must include Compartment Syndrome on its list of post-operative complications. The Lloyd Davis lithotomy position can cause extra pressure on the calves and on the pneumatic pressure Flowtron boots worn by the patient.

Anything that could have caused bleeding into the compartment could have lead to the syndrome. I'm interested to see if the meloxicam and leg wraps help.

The main ingredients of Crampeze seem to be rutin and magnesium; magnesium hasn't worked for you so far and rutin doesn't seem to have any studies done in humans, or at least ones showing efficacy; in animals it has anti-inflammatory effects apparently.

Make sure you don't take any other NSAIDS like aspirin, ibuprofen, diclofenac, etc... whilst on the meloxicam due to increased risk of gastrointestinal side effects. I have to make sure I don't take any of those when I take my celecoxib.
 
yeah i had a quick read of it, i would have thought i would notice any swelling or bleeding enough to cause that amount of pressure to cause say nerve damage, and this is something that has gotten worse over the last year or so.

i tried to explain i have tried magnesium and knew what was in crampeze, even told him i'd had a recent blood test with no issues, but he insisted i have to combine all treatments.
and yes, it's my familys GP, i actually used to live in the same area and used to see the same doctor, was bout 6 years ago though lol.

i also read up on meloxicam also and made note of the fact it was an NSAIDS, which can increase tinnitus - which is one of my main causes of insomnia, combined with the leg pains and anxiety its just too much for me to overcome. so i'm hoping its not worsened. i dont have high hopes of sleeping with no luck using 100mg of voltaran in the past, but need to try and stay positive. i'm also not looking forward to the stomach abuse, my appetite is shot at the moment and am finding it very hard to eat at all let alone a 'big' meal before meds as the dr quoted.

anyway, can't work, can't do anything else, so don't have much to lose atm.
he advised me to cancel my appointment with the neurologist, but i've come too far to not give it a shot also.
 
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^ I think aspirin is the major NSAID associated with tinnitus and hearing loss, though the others can also cause problems. It is generally in overdose or prolonged use though that this occurs I believe. Also, the hearing loss from aspirin is reversible in most cases though I am not sure about the tinnitus and I can't find anything explaining the mechanism of action for this side effects.

Keep the neurologist appointment, doctors love to think that they know exactly what is going on and that second opinions are unnecessary.

ETA: Also, the gastrointestinal effects of meloxicam are apparently less then a lot of other NSAIDS, which is a plus.
 
thanks for the info.

according to this site (http://www.spinalhealth.net/inj-comp.html) my pain should increase with exercise and feel better once stopped, mine is the opposite - mine is relieved by exercise. it also states that prolonged pressure can lead to amputation.

according to the info i've read, my leg would need to be near on exploding, or at least feel like it at some point in time for no more than 12 hours. the Dr explained that my muscles need time to heal with support (from the wraps) but i can't see me having the condition for this length of time only to get progressively more painful with the amount of inactivity over the recent months at least.

still, i will give it a shot and go the 2 weeks, if anything, to help rule it out.
 
I have extreme RLS for years which was brought on by a nerve disorder that was caused by a15yr extremely abusive relationship.The best things ive found for RLS is excercise (like cycling)every night before you go to bed and neurotin...but the excercise before bed was the big key.
 
^ regarding hearing loss there was a study published last year:

http://www.sciencedaily.com/releases/2010/03/100301091421.htm

I can't find a free link to the full paper though. It's "Analgesic Use and the Risk of Hearing Loss in Men" published in the March 2010 issue of the American Journal of Medicine.

Yeah, and there was a thread here in AusDD as well I think about that... I was reading that article and a few others all about the same study while I was searching before posting and it seemed mightily familiar. :)
 
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