we have more knowledge about rls than your average GP about rls life’s little ironies!

I’m taking tramadol for a neurology problem

The dreaded message you know you will eventually receive if you are on opioids! Urgh. You prescribed them for a reason now continue to so and stop wasting my time, and the NHS’s time. Messages like this cause people anxiety too. As he is just a GP, not a neurology expert, I intend on telling him that, and that I’ve tried every other single drug before opioids (had this conversation with him about 10 times now) – I will tell him to pull up the letter from the neurologist on the computer which in it he recommends I be put on oxycodone for my severe rls because all other treatments have failed, so we will see what he has to say about that!They’ve even tried to use my age as an excuse before, but if a 33 year old is suffering as badly as a 63 year old is, I think age is irrelevant. I’ve had rls for 7 years, I’m taking tramadol for a neurology problem that isn’t going anywhere, not for something like back pain, it may not be ideal but nor is my legs and arms moving 24/7, plus all the other negative things that come with it like anxiety, depression, suicidal thoughts etc – like I say, don’t go down without a fight, knowledge is power and there is plenty of knowledge on this page! Collectively, or even individually as patients, we have more knowledge about rls than your average GP about rls life’s little ironies!

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Discussion

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Nicole Roberts Tramadol helps mine too.

Liz Hurst I think tramadol work for me but my gp won’t give him to me x

Joanne Louise Silcock Tramadol is great but addictive and withdrawal is worse causing RLS. Any opioid is a pain to withdraw from.
Good luck

Phillip Newport Yeah withdrawal sounds horrendous, least it’s temporary though unlike rls. Thankyou though

Andi Keltner Joanne Louise Silcock most of us need it for life. Why would we stop them. Two choices. Take a medication that works or kill our selves to escape the torture. Seems like an easy choice to me!!

Jennifer Gordy I’ve had to go off tramadol several times in my life because of doctors stupidity and yes the first couple of times the withdrawals for horrendous but then the last couple of times I just tapered myself down all the way to where I was cutting quarters of the pill and taking that and I have to say I never experienced the withdrawal after that so it makes me feel better about tramadol and taking it cuz now I know how to get off of it if I had to I quit messing around with doctors that are not neurologists because they can’t keep you on something for a long time but a neurologist will and fight the insurance companies to allow them to prescribe you tramadol and tramadol was the only thing that helped me I have severe RLS all over my body both arms both legs my chest my collarbone all at the same time and it makes my narcolepsy symptoms come out full force I end up passing out on my face because of it and then as I go to wake up I’m stuck in a sleep paralysis and can’t breathe and then I’m stuck going through the dying sensations all because my restless legs and body started acting up every night like clockwork I was going to die it was crucial for me to be on tramadol I wouldn’t mess with other doctors if I were you I would go to a neurologist/sleep specialist

Phillip Newport Oh that sounds horrendous!! I feel super lucky I’ve never suffered withdrawals. Sleep paralysis too – I have a few friends who suffer with that 🙁 just out of curiosity do you ever expierence seeing frightening things in the room with you? My friend does, and feels like someone climbs on top of her – I’d end up pissing the bed 😂 sorry you’ve suffered so much though, life can be so cruel

Jennifer Gordy Phillip Newport yeah I think it was like an alien holding me down and I’ve also seen writing in a different language in blood on the walls and closet door and see shadow people moving around super fast

Phillip Newport Crazy! I live in a haunted house and that is bad enough, heard a random gong noise go off near my head just as I turned the lights to go off to sleep the other night ! No explanation. I’ve personally always thought SP is spiritual in nature. I’ve heard of many reports of as soon as people pray to God for help during an episode it makes it instantly stop. Another thing which makes me think it’s spiritual in nature is that I’ve read/watched many reports of people who have never suffered from it in their lives, as soon as they move into a reportedly haunted house, they start suffering from it which I also don’t think it’s a coinsidence! Has it ever stopped when you’ve prayed before? (Don’t worry, in not trying to Bible bash haha!)

Jennifer Gordy Phillip Newport Nine months ago I moved from a haunted house in Conroe my health problems were a little bit more severe because of it they were just speak things into my ear and it sound like whispers I will get touched in places that I wouldn’t dare say out loud and sleep paralysis was worse had more depression and didn’t even know why finally when I moved to an apartment in Spring my problems got a little bit better but it’s still pretty bad if I go without medication

Jennifer Gordy Phillip Newport It was like I was soaking up everybody’s dying state or call it death state and I would feel everybody’s emotions that we’re dead and I was a skeptical until I started getting touched

Phillip Newport That sounds like my worst nightmare! I think demonic entities were trying to drain you down and make you even weaker, they feed on fear – I have a female friend who says shes felt “penetrated” during an episode! I honestly think it’s spiritual in nature. Although if medication makes it better it makes it hard to decide. Maybe medication just numbs you a little bit or something so they aren’t able to attack as easily, lots of possibilities, but if you have a severe episode, even if you don’t believe in God or Jesus say a prayer, even if you’re an atheist, if it stops you’ll have your answer”

Jennifer Gordy Phillip Newport Sometimes I actually screamed to Jesus praying please help me please tell me what to do

Phillip Newport Did it just continue then after you prayed to Jesus? I wonder why it works for some but not for others during an attack 🙁 if it’s just a dream why does literally everyone expierence the same things, dark shadows, an evil feeling in the room etc

Jennifer Gordy Phillip Newport all the haunted stuff and spirits touching me and all that went away when I moved And my health is more manageable with the right medications now

Phillip Newport Jennifer Gordy well I’m happy to hear that

Phillip Newport Maybe I’m just lucky but I’ve never became physically or mentally addicted to a drug before, all of which I’ve taken from months to years – gabapentin, pregabalin, a whole range of opioids, benzos, I’ve stopped and started again without problem, I’ve never even tapered.

Judith Sweem Phillip Newport II had no withdrawal going off opioids

Sophie Boswell Nor have I off the ones I have… I went 3 days without oxy at the beginning of the week… that’s all covered in my neurology letter to the gp he said the way I take it, as and when I need he’s confident I won’t have any problems which I havnt of the instant release

Sophie Boswell The neurologist over rides the gp mine is great, last time I saw him I had to get it in there and say….. as long as nobody ever takes me off the oxy it’s all good… and he’s written that to my gp ❤️ And sent all my notes to the other hospital so that no one will have bright ideas and take me off it.

Phillip Newport That’s the great thing, and especially as mine suggests oxy so I’m armed with knowledge, and my neurologists advice, and I’m not going to accept anything less than tramadol. I have a feeling he will try and put me on subutex or some shitty drug like that that they give junkies, ironically I could end up becoming dependant on one of those types of opioids. I am getting a bit bored of tramadol though. God I wish I had your neurologist that could write down on my notes to stop pestering me!! Grrr

Phillip Newport Have you tried methadone btw? Just incase they try me on that urgh

Sophie Boswell Subutex is great for rls much much better than methadone I’ve had both cough cough off me mates…. methadone takes too long to work over an hour subutex works in 20 mins…. but the oxynorm works in 10…. if you got a neurologist you shouldn’t be seeing your gp for meds, now my gp won’t touch anything rls with me the gp supports the neurologist but I have to see him for everything rls now…. I’d suggest ditch the gp and go back to your neurologist, I did actually ask for bupromorphine/subutex but he wouldn’t let me have it but he did the oxy after none of the usual stuff not work. Methadone is the worst I need 30 to 50 mls of that It took nearly 90 mins to work and you’ll end up with a bigger habit on meth, defo sunniest if you can get them after oxy they my next fav….. 2ml under the tongue boom 20 mins your ok. Avoid methadone like the plague ask for oxynorm but doubt the gp will let u have it, get back to your neurologist or arnt you with them anymore? Xx

Charlie Coombs Hi Phillip,
I can certainly sympathise with you. The same thing is happening in Australia where the authorities have tightened down so hard on opioids that genuine users are made to feel like druggies
Ian now on methadone which so far after a month is working better than anything else
Good luck

Jennifer Gordy Charlie Coombs I’ve been on tramadol for such a long time the doctor is thinking about putting me on methadone I wasn’t sure about it I’m not worried about addiction or trying to get off of it cuz I could do it the proper way every time and never feel withdrawals not anymore at least

Phillip Newport That’s what I’m thinking, I’m wondering if I’m going to be tried on methadone, I don’t exactly like the idea of being on a drug for drug addicts but if it helps who cares right! Is it really affective then? Apparently it’s highly addictive, so that worries me, even though I’ve never been physically addicted to opioids or benzos before but you never know it could be the one lol