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Restless Legs Syndrome
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Diagnosis help

Hi everyone, I'm new to the forum :)

I'm pretty sure I have RLS. I've been struggling for about 18months now and it seems to be getting progressively worse. I barely sleep and am struggling to function during the day.

My doctor seems to respond S though I'm a hypochondriac.

Does anyone have any tips for getting diagnosed -it would be great to know what tests to ask the doctor to conduct to try and get some help as I'm struggling to cope.

Thanks!

Jess

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Hi Jessicado

Unfortunately there are no specific tests for a diagnosis of RLS but this may help you/your doctor:

rls-uk.org/diagnosis/

As your symptoms only started relatively recently I wonder if you have started to take any prescribed medication or OTC medications that may have triggered the RLS:

Some medications to avoid are listed here: rls-uk.org/treatment/

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Hi,

They normally diagnose from the symtpms you have - I don't think there's an official 'test' as such.

(Currently away due to aching legs 😪)

Take amitripline daily to ease.

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Awake!

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Hi JessicaReb

The vast majority of RLS sufferers cannot tolerate Amitriptyline as it makes their symptoms much worse. It is listed on the RLS-UK website as one of the medications to avoid. Here is the link: rls-uk.org/treatment/

I hope you soon settle and are able to sleep.

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Is JessicaReb the same person as Jessicado?

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No :)

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Hi all,

Thank you for the replies. I might take these links to my doctor next time I visit so he can read the information. My symptoms match the diagnosis criteria exactly and the videos diaries sound so much like my own experiences!

I'm keen to find a secondary cause (if possible) because my symptoms seemed to start very suddenly. Although I haven't started any new medications (except a steroid spray for nasal allergies so I will check the ingredients on that).

JessicaReb is not the same person :)

My physio wants me to take amitriptaline for a neck injury and related nerve pain but I'm very wary. It's really useful to know that this could also make RLS worse. Is Gabapentin equally concerning?

Thanks so much!

Jess

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I was prescribed Gabapentin for nerve pain following a disc removal from my neck. I had no benefit from it and each time I went back to GP the dose was increased. I put three stones on and was still in pain.I didn't know that Gabapentin is so difficult to come off. I insisted I wanted to stop taking it, it's dangerous to stop suddenly and I decreased the dose gradually, taking almost six months to be free from it. Ironically the extra weight which I cannot shift has made all my symptoms worse.

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Thanks Elle, I am so reluctant to take the nerve pain drugs but my clinician is really pushing it because my pain isn't responding to physio. I'm waiting MRI results so hopefully that will shed some light! I am strongly thinking I won't take amitrypyaline or gabapentin but my leg pain is keeping me up all nights. I slept for the first time in wks last night but only because I took 10mg diazepam!

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It was just my experience, I have had the best relief from a home made Magnesium oil that does not cost the earth, smells lovely and makes my skin softer at the same time. I saw the recipe on line somewhere, will put it on if you would like it. I just need to say I have several lots of meds 31 tablets a day, in the interest of fairness Gabapentin might have reacted with something else.

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I'd love to see the recipe! At the moment, I have to rub my legs from top to bottom in excessive amounts of deepheat (often numerous times throughout the night) because the burning pain sometimes just about makes it possible to ignore the usual pain :} so I'm definitely up for trying something else :)

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Me too. I make my own as it is MUCH cheaper abd , as I've said before anytime I can avoid commercial products, I fee;\l better knowing the exact ingredients.

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Hi, Jessicado. The formula for making your own magnesium oil is simple and cheap. Rather than print it here I will give you the website I got mine from. I keep my oil minimal-don't add essential oils for fragrance etc. But the following website has all the details, explanations for things that helped me when I first started. It is much more detailed. The website is wellnessmama.com I use this site frequently but I want to be clear I have no connection with it in any way. You could also google magnesium oil and get other sites with recipes. I did this and settled on the one above. Check it out; after pulling it up type in magnesium oil recipe. Let me know what you think. I use it every night after a nice warm shower sitting on my shower chair and letting warm water run over my legs. This helps me sleep at least a little longer. there have been times I've gotten up in the early morning hours and repeated the whole process to be able to go back to sleep, You can always sit in the tub in warm water with epsom salts. This is actually better that the shower. But my knees make getting out of the tub difficult. If this wasn't a problem for me, I'd probably be living in the bathtub before bed. Sometimes I take a small dose of Xanax as the rls pain makes me so anxious and I've found if I can relieve my anxiety and calm down I can deal with the pain better, feel less frustrated, making things better all around. I am also working on raising my ferritin level. It's not for me to contradict your doctor but I am leary of immediately starting some of the meds supposedly for rls. and I'm especially leary of doctors who try to prescribe them early on. I worked as a registered nurse for almost 40 years (am 73 and retired now) so I think there are times we need some fancy medical care but for my rls which is God-awful but not life threatening I prefer to start with less invasive, more natural treatments that, even if they turn out not to help everyone, at least do no harm. I can only tell you what I would do. First, I would not be bullied into treatments or meds I didn't understand and feel comfortable with. Is your doctor empathetic and really interested in helping you find solutions that work for YOU or do you feel you are being hustled out of the office prescription in hand. YOU are the customer, he works for YOU and YOU are his copartner in your healthcare. For me, this is my key mindset which drives my decisions. It's not his pain and he is not the one losing sleep. A friend of mine reminds me often "Don't take better care of your car than your body." This includes not giving your power away to healthcare providers who may or may not have your best interests at heart. Good luck; keep reading the posts, you will learn a lot and begin compiling various things that will help you that doctors may not even know about. Take care burmag

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I was diagnosed after a sleep study for REM behaviour disorder. When the results went back to my GP I mentioned as a passing comment that I didn't know anything about the REM problem as I was asleep but the constant need to move and the creepy crawly pain in my legs was a problem he said straight away that he thought it was RLS and started me on Ropinerol. Mine is out of control I'm on far too much Ropinerol but the Neurologist monitors it

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Jessicado,

First of all, you are NOT a hypochondriac! If your doctor is saying you are then you need a new doctor. You need help, and to have anyone (especially the very person meant to help, for God's sake!!!) call you a hypochondriac is not helpful. For a doctor to do this is a disgrace!

Secondly: you said (in a previous post) that you think you might have something else going on that you don't know about? This could very well be. Please check out my post of PLMD by clicking on my username and the post "PLMD". PLMD stands for Periodic Limb Movement Disorder, it is considered a sleep disorder since it happens at night, and it can only be diagnosed through a sleep study. 80% of those with RLS also have PLMD. I am SO sorry you are having a hard time coping. I really feel for you because I'm barely coping myself. My sleep quality is extremely poor (due to PLMD) and going through everyday life is too much for me. Despite this, please message me if you want to talk. You can do this by clicking on my username and clicking "message" on the top right.

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You will have fine quality of life with Tramadol. Don't be afraid to take this medicine.

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Try Tramadol, it takes away all my pain.

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