I'm delighted you now have treatment that is helping.As your RLS is from childhood, it is probably caused by low brain iron and you are someone for whom an iv Infusion of Injectafer would work. Raising your serum ferritin above 100 (250-300 according to US experts) will probably dramatically improve your RLS and may even mean you could be med free.
I know it's difficult to get an infusion in Australia, but do ask.
I am in Australia and I had an infusion in Melbourne. I had to visit five doctors to find one who agreed to an infusion. If you are anemic then it's easy and you might be anemic. We would hope that some medical expert has had a blood test done to get a measure of your ferritin concentration but that might not be the case. I would suggest that you ask for an infusion first and then ask for a blood test if that's not the doctors first reaction. I will send some information by private message that might help. I hope that all you need is the infusion. My daughter was anemic and had bad restless legs. She was treated with an infusion and from that day on (3 years or more) has had zero restless legs. Incidently my infusion did nothing for me but the only way to know if it will help is to try it So a few people telling you it didn't help them has nothing to do with whether it will help you or not. My ferritin went up from about 100 to 350
I found your poem absolutely heartbreaking and sincerely hope that your life will now improve and that you will at last be able to sleep. There are some very knowledgeable and helpful people on this site so I hope you ask them for any help or support you need.
You poor poor soul and your younger self. I don’t know how you made it through. If I had had what I have now as a child & with the response you had I’d be only a shell & not likely alive. The only thing I can say is please be proud & realise how strong you are.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with its absorption. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months.
Sweet, powerful and sad! I too had "growing pains" as a child (successfully treated with iron supplements for anemia). Full on RLS 50+ years later also treated with iron. The best is yet to come!
I too was a child sufferer, and I could have been as young as 7. My sister and I had to share a double bed and she remembers getting into trouble from my dad for her shouting at me to keep my legs still. I also remember my mum calling the doctor as I had ‘pains in my legs’ which he put down to growing pains. I’m now 72 and was talking to my husband about going to dignitas as living with RLS is not LIVING, it’s HELL
I feel totally gutted as 9 months ago I came off pramipexole and it wasn’t easy. I think it started well then the end was awful. My doctor tried me on OxyContin, both liquid and slow release tablets but nothing worked. I was referred to a neurologist in July but still waiting for an appointment.A month ago after walking day and night, as mine starts in the early afternoon, I gave in and my doctor put me on slow release ropinarole which is working. However knowing that augmentation will happen again scares me but I couldn’t live how it was
Your poem just breaks my heart. I can't imagine having to deal with RLS at such a young age and getting punished and put down over something you have no control over! You are a survivor and should be very proud! I'm so glad hear that you have under control now! Maybe you could write a book and send some copies to some of these Medical Schools so that the new Docs coming out have to learn about RLS! Just a thought!
I can identify with your story. I was born with RLS, so had to deal with the sensations before I could even walk. I used to squeeze my legs together in what I subsequently found out is called “straining”. Basically it stretches the muscles and alleviates the symptoms, albeit temporarily. However, my parents thought it was masturbating, so as a child I’d get told off and slapped whenever they saw me do it. I grew up thinking I was doing something naughty but didn’t know why it was naughty and I couldn’t not do it as I was driven to distraction night and day by the sensation in my legs. My parents weren’t interested in talking to me or finding out why I was doing what I was doing. I just got punished all through my childhood. As a young adult I discovered what their problem was, and then I thought there was something wrong with me that I somehow needed to be doing that every night. It wasn’t until I was in my 40s that I finally discovered it was RLS, and I still find it hard to talk about it as it’s associated with so much shame for me, even though I know I was never doing anything wrong.
OMFG I KNOW !#@@ Punishment every day. It's the kind of the thing that if people haven't experienced, they have no idea. I was diagnosed at 48. How are you coping now. I told my Dr if he tried it to take sifrol off me I would kill him
I wasn’t doing too bad in later life. It had settled down to just bothering me for a few nights a month until I was prescribed Tramadol, and then Pregabalin, when I was suffering with spinal problems. Tramadol seems to have caused permanent damage to my dopamine receptors, as when I was weaning off it after having taken it for a few years I found my RLS spreading to the base of my spine, left arm and neck. Thought it would settle back down to normal and that it was just the effects of reducing the amount of Tramadol, but that was nearly 3 years ago and it’s still like that. Tried going back on Pregabalin a couple of years ago. It worked briefly but then did nothing. Tried increasing the dose but that stopped working too. So at the moment I’m not taking anything. I have good nights and bad nights, mostly bad, but at least I don’t have the permanent brain fog you get with Pregabalin.
Would you like to my experience with meds, what worked and what didn't?
So I'm going to take the lead and assume that you would indeed like to know what successful meds I am taking.
I was prescribed Madopar and Sifrol when first diagnosed some 20 years ago. Sifrol worked 6 months, and stopped so went off it. My RLS is not just symptoms, it is also pain. The Madopar is for the pain. I'm skipping a few of the inconsequential ones, but will itemise at the end. So I am taking Madopar on it's own, and basically self-medicating. Had three heart attacks, nothing to do with RLS. Went into hospital for open-heart surgery, obviously the heart surgeon was clueless about RLS, ask me why I was taking the Madopar. When I told him, 30 minutes later, there were 4 sleep registrars standing at the foot of my bed. Long story short, they stopped me self medicating, regulated Madopar, and put me back on Sifrol.
From that day onwards, Mumofsam .... (which BTW,. is a great handle), for 15 blissful years, without a word of a lie, I was 100% RLS free. OMG it was fucking amazing. (As you no doubt can imagine). And, well, then life happened.
I was put on Tramadol for pain until I had cortisone shots, when pain ceased, I was taken off Tramadol. Nope, neevver gonna happen. My legs had gotten used to the Tramadol. So what I am taking now for my RLS, is Madopar, Sifrol and Tramadol. I have RLS in my entire body.
Skip this paragraph If you're getting bored.
I broke my left leg and had to have hip replacement surgery. The day after they got me out of bed, and I am walking down the corridor with the physio, and I begin complaining about the pain in my right leg. The more I walked, the more the pain increased. I tell the physio and he goes it can't be in your right, it has to be in your left. No I said, it is in my right leg. No it has to be in your left leg. I go, it is my leg, and it is in my right leg. Everytime I put my right foot down, the pain is simply excruciating. Hip replacement surgery, HELLO .... what surgery.
Even tho it had been 15 years, I recognised it as restless legs pain shooting up my leg. I could actually feel the flames in my arteries. I go that fucking surgeon has cut my Madopar intake down. Take me back to my room and page him. Being a bone surgeon, he too was clueless about RLS, and had cut why dosage in half. I could've killed him.
The shock they all shared, when they heard I could not feel any pain whatsoever from the surgery, because of the excruciating pain that I felt in my right leg. (Thanks to the idiot sugron). They realised then how bad RLS can affect somebody. So yes, of course, once the Madopar was adjusted, I definitely felt the pain from said surgery, in my left hip. Ha ha. No not funny. But it does explain the severity of RLS pain to the uneducated.
Meds that had little or no effect, were Gabapentin, Paxam, a couple others but because they were so inconsequential, I simply can't remember their names.
After reading the so many helpful posts on this site, it would appear that I am indeed one of the very lucky ones. And also one of the unlucky ones.
Unlucky because I've had a lifetime with RLS. Lucky because I have been on Madopar and Sifrol for 20 years now, and still no sign of augmentation. Apparently one can augment with these drugs, (especially Sifrol), from anywhere between 2 mths - approx 5/6 years. So I hope that has been somewhat helpful for you.
Another wee story you may find interesting, and will obviously understand. (But of course, please feel free to skip it, if you feel bordem is setting in).
So I was working in my rock garden, when I fell and landed on my knee. So I rock once again up to another orthopaedic surgeon, (different one different town). Tell him what happened, X-rays taken, go back a few days later, go into this cubicle, the surgeon is joined by a female nurse, and two men in black suits. (At the I had no idea who they were, or why they were there). But I do now. So the clueless surgeon goes, tell 'us' how you hurt your knee. I did. He goes, I'm sorry but I don't believe you. The kind of damage you have done to your knee cannot be caused by falling onto a rock. The only way one can do this kind of severe damage to one's knee, is by kicking, continual kicking. Who or what have you been kicking. (WTF ... I realised then what the two men in black suits were doing there ... They were cops). He obviously suspected that I had been kicking children and/or an animal.
I go, would kicking fresh air, for 6 to 8 hours, every single night without fail, during my entire childhood fit the bill. Why on earth would you do that? ..........
Wow, you’ve really been through it, haven’t you! Thanks for taking the time to post that, it’s really interesting to hear your experience.
For me, RLS isn’t pain. The only way I can describe it is as if your muscles are itching and it’s a gnawing sensation that drives you mad. The other thing I can liken it to is the sensation you get when you want to stretch, but multiplied hundreds of times. It can also feel a bit like the sensation you get when you’ve overstretched a muscle and it feels a bit jelly-like, if that makes sense. So stretching the muscles in any way possible gives relief while the muscle is being stretched, but the sensations return the moment you stop. I often thump the top of my thighs to cause mild pain in my legs, as that relieves the sensations momentarily too.
My RLS is definitely linked to stress and as a young woman always used to get worse during the week I was pre-menstrual. As a child any kind of stress immediately “went to my legs” and caused unbearable RLS sensations in them. I went through a few years in my teens when, every time I used to try running for a bus to jump on it while it was at the traffic lights, my RLS kicked in big time. My legs felt like jelly and lead at the same time, and I just couldn’t run. My other school friends would all have run and jumped on board and for me it was like being in a nightmare, with my legs just shutting down on me and being hardly able to move my legs, let alone run. I’d be getting slower and slower, though thankfully on these occasions I’d just make it by the skin of my teeth. It was truly horrible. Then, one day, I was suddenly able to run again! I still have times though when I’m walking and can feel RLS sensations in my legs.
As I already said, my symptoms had settled down to just a few days a month (the PMT days) and other than that I was relatively RLS free, and never bad enough to need any kind of meds. Until the dreaded Tramadol came along and ruined everything. I’d guessed Tramadol had done something, then there was a post on here by a doctor who said that Tramadol had caused her RLS to become permanently worse despite no longer taking it, and she was saying she suspected it had caused permanent damage to the dopamine receptors in her brain. So she confirmed and voiced what I suspected. It’s not augmentation, which I had people saying, as it’s now nearly three years since I last took Tramadol, and it only started spreading as I was weaning off it.
There are times when it feels like I’m getting RLS sensations in my scalp, from my forehead upwards. The worst one is the neck, as I find myself flinging my head from side to side and all over the place to relieve the symptoms and it drives me nuts.
It’s interesting what you say about your knees. Both my knees are really bad and painful. I was told in my 30s it was down to having flat feet and the knee caps being pulled out of place by one set of muscles/ ligaments holding the kneecap muscles being overused and the other set being underused and weak. Must admit I’ve never thought about it in the context of RLS before. I don’t think I kick a lot in my sleep - least ways when I’ve asked my husband he says no, but that could just be him being a sound sleeper.
My dream would be to have something like a TENS machine, with pads for my thighs, back, neck etc, giving low level pain to the areas affected as I reckon that would relieve my symptoms when I get them. It might also help with pain of course too. No way to ever find out though!
I could really kick myself, (no pun intended), because when I first was diagnosed, 30+ years ago, the specialist asked me to write a Quality of Life statement. I had no idea what he was talking about. I had to write how RLS had affected by life. I think I typed about 5/6 Page. Giving their headings, eg QOL STATEMENT, DESCRIPTION OF MY RLS, etc. Have no idea where it is now. It might help you. It might help others too.
Have replied above before seeing your post. I’m in the northeast of England. I don’t mind continuing our conversation by PM or here. Up to you. PM might be easier and would bore less other people 😂
So I am trying to send you a pm, but when I type in your username MumofSam, it won't accept it. Try sending a test one to first and I can reciprocate. My username is TEAH35.
Sorry MumofSam, I stuffed it up. Your test did come thru, and I answered with a long text. And then somehow I then managed to delete the whole thing. Please send another text through, because it still won't allow me to use your handle. Thanks, and again I am sorry. And angry. Because I had written such a long text.
I am so sorry, I've done it again. I know how now. I responded to your message, spell check didn't pick it up, I highlighted and hit delete, and bang ... Everything was gone, including your message. It still won't let me pm MumofSam. But it will allow me to reply to your pm.
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MY STORY sad but true
Buprenorphine Update and new story 
Hi, I'm new, my story and a few questions.
any successful stories switching from opioid to pregabalin? 
Electrifying leg/foot cramps worse! Is this a sign of augmentation from Ropinirole?
