hello i’m 17 yo girl going into senior year of high school. i haven’t been diagnosed with RLS bc doctors are all booked up so i can’t see them for months, but i don’t think i can wait that long. this has been my second week of sleeping 2 hrs every day, so only 28 hrs in 14 days. No sleep pills work or anxiety meds relieve the shakiness i have to do to myself. it’s not beginning to affect my whole body to the point where it’s 3am and i’m sitting in the tub crying. i don’t feel like myself anymore, so if anyone has advice on how to be more positive or any advice in general since i’m new to this bc this has been the worst thing of my entire life and i already was living a nightmare in other personal matters. any kind words would help bc i feel so powerless and helpless.
my first post for help: hello i’m 17 yo... - Restless Legs Syn...
my first post for help
Hey Kittygrl I’m so sorry to read this. I also had an awful night last night, decided at 5.30am to sod it and just have a bath - in which, like you, I sat crying.
You must book an appointment with the doc, even if it’s months away.
Have you tried:
Giving up sugar (not fruit or whole foods that have sugar, but anything with processed sugar
Giving up gluten
Magnesium spray to help relax the muscles (it might hurt a bit if you are deficient)
Bathing with magnesium flakes
Massage
Tapping the affected area for some minutes
Stretching before bed: look onyou tube for:Restless Leg Syndrome Relief (RLS) Ask Doctor Jo
Drinking a more more water
I have been tested for low iron but I’m not deficient so am going about trying all of the above. Last night was a particularly bad night for me, with only a half hour of sleep
either side of a night of what felt like an electric current running through my legs.
Up now and getting ready for work, but my goodness!
Oh and I am saving up to buy Restiffic RLS restless leg food wrap. Can’t afford it right now but want to try it.
Good luck and tell the receptionist at the doctors just how serious it is for you. If it continues like this for a few more days of only a couple of hours of sleep per night I would take yourself to A&E and ask for a blood test...sleep deprivation is torture.
thank you so much for taking your time to respond. it comforts me to know someone else knows what i’m going through bc it just seemed so made up. i will try every way you recommend. i started taking iron pills so i’ll see if that helps and my mom has been very helpful and supportive as she can. again thank you and i wish you better nights of sleep and wellbeing
When you say you’re not iron deficient- ask for actual numbers. Doctors will tell you everything is fine if serum ferritin is above 15 but you need levels above 100, preferably 300 if you have RLS. Raising levels totally resolves RLS in 45-50% of sufferers.
I am so sorry for what you are going through. My Restless legs began when I was 18yrs old and I am now 67yrs old.
This site we are on is truly amazing and I am still learning so much.
I have just started taking Iron tablets combined with Vit C
The Vit C helps with the absorption of the Iron Supplement.
There are many other suggestions on here as to what other supplements to take.
I also find massage is excellent.
Can a family member massage your lower back, hips, buttocks and legs, each day, morning and evening.
Avoid alcohol, sugar, (food with additives).
Sleeping pills as you have discovered don't help.
Don't start any medication that is a dopamine agonist.
Others will give you advice.
My thoughts are with you.
Kind regards Julie
what you said is really helpful i can’t thank you enough and i hope you an amazing life. this is all so new and i’m glad there’s kind people like you to help me :))I am sorry to hear you appear to be suffering quite severe symptoms.
As you haven't been properly diagnosed it'd quite important to make sure you do have RLS. One way you can do this is to compare your symptoms to the RLS diagnostic criteria. Your symptoms must match ALL the criteria as there are other conditions that might appear to be RLS but aren't.
Here's a link to the criteria.
irlssg.org/diagnostic-criteria
It shouldn't take months to consult a primary doctor. As you're not sleeping it is urgent. You say you've tried sleeping tablets so did you have a prescription? If not, it's not a good idea to take ptescription sleeping tablets.
If you're taking anything else for sleep especially something with a sedating antihistamine in it, do NOT. This can make RLS worse.
If you do have RLS then you need blood tests for iron deficiency. If you have iron deficiency anaemia that could be causing "secondary" RLS which may be made worse by anxiety and lack of sleep! This can be treated wuth an oral iron supplement.
If you don't have iron deficiency anaemia, then you may have "primary" RLS. In this case you will have BRAIN iron deficiency, (BID).
The blood tests are for serum iron, transferrin, ferritin and haemoglobin.
If you do have RLS, hence BID if your ferritin is below 75ug/L then taking an oral iron supplement can help treat BID. This can take 3 months or more, it's no magic pill, I'm afraid. There are also "special" ways of taking iron so that it's more effective.
There are all kinds of medicines that make RLS worse, this includes antidepressants and antihistamines. You shoukd avoid all recreational substances except cannabis, which may actually help RLS, IN SMALL AMOUNTS.
Food can also be a factor and anything you eat which might be causing inflammation ( which can be without you knowing) can make RLS worse, this can include added sugar and anything with sugar or refined carbohydrates in it. If you're gluten or lactose sensitive that can be a factor. You might ask your doctor to be tested for gluten/lactose sensitivity and SIBO (Small Intestine Bacterial Overgrowth). Look this up.
If you DO have RLS then your doctor may suggest a RLS medication. This should only be done as a last resort as these are potent drugs with potentially awful side effects.
There are two alternative kinds of med. Your Dr should offer a choice, not just tell you one of these.
One kind are called alpha 2 delta ligands. RLS organisations recommend one of these, pregabalin or gabapentin be tried first. These are particularly good at relieving insomnia and anxiety.
The others are dopamine agonists, (DAs), pramipexole, ropinirole or rotigotine. These are NOT recommended as a first choice because of the complications they cause. If you're Dr only mentions one of these, this may be because they don't know about the others, so you will have to ask.
A benzodiazepine, e.g. clonazepam or diazepam may help if you haven't already tried one. These have a muscle relaxant effect. These are potentially addictive you must not take one without consulting a doctor.
If you have insomnia anxiety is a major factor, it causes a vicious circle. Consider what strategies you can use to relieve anxiety.
It would be good if you can confirm the diagnosis of RLS as then you'll know what you're dealing with. If it's something else then it will need diagnosing.
Unfortunately, if you have primary RLS, there is, as yet, no cure. You will need to study it and find as much as you can how to manage it. I'm afraid you can't rely on doctors for this. You may be referred to a neurologist, you can't even rely on them. Many doctors cause more harm than good when it comes to RLS.
Do consult your primary doctor however and tell us how you got on.
Covid 19 is not an excuse for denying you a consultation. Sleeplessness is dangerous and you are an urgent case.
thank you! this was helpful. i have add and ptsd so a lot of people suggested beta blockers, but hopefully my doctors will give me an opening soon. again thank you for taking your time for me
Since you don't say how your symptoms compare to the RLS diagnostic criteria I can't say definitively, but from what you write and based on the shakiness and insomnia I'd say that this is acute anxiety, not RLS.
If that's the case then I'm sorry my suggestions will be no help at all.
If it is anxiety then a beta blocker may help the shakiness.. However it would not help with the anxiety. If it were RLS it would make things worse, but I think it unlikely.
If you have any medication for ADD or PTSD then your symptoms could be related to these. If you have PTSD then acute anxiety seems highly likely. I wonder if you are having any active treatment of any kind.
If you're not currently under the care of a mental health service, then a referral may be helpful.
Not knowing all the detail, at your age it's difficult perhaps, because you're possibly having to make the transition from CAMHS to adult services.
I hope that clarifies things a bit. See a doctor as soon as possible, you shouldn't have to wait months. I don't think you have RLS.
Hi, I’m so sorry that you are so young and are going though this. First of all, do NOT take any of the sleep aides you can buy over the counter. They usually contain an ingredient that make RLS worse through the night.
I would try doing some exercise during the day if possible.
Stay up at night as long as possible. Until your eyes are so tired you can’t stay awake. I usually get my best sleep if I stay up until my eyes wont stay open any longer. About 4-5:00 am. If you can’t get in to see a doctor, see if a (PA) physician assistant or (NP) nurse practitioneR. Honestly I’ve had better luck treating with a nurse practitioner.
Are you on any medications right now? Look them up and see if they could cause RLS? It won’t say it on the side effects part of the prescription so you’re going to have to look them up on the internet. I can tell You antihistamines and antidepressants will cause RLS. DO NOT STOP ANYTHING THAT A DOCTOR PRESCRIBED. YOU MUST SPEAK TO A DOCTOR BEFORE DOING SO.
Please stay in touch. Stay calm, it WILL get better.
i was on many antidepressants for a while and it didn’t start happening when i started taking Seroquel. it began to help at first but stopped immediately and gave me RLS, we changed and changed meds. as of now i’m only on a muscle relaxer bc we saw the antidepressants weren’t working . mentally i feel a lot better but the pain hasn’t stopped. Thank you so much for your response <3
Stress really triggers RLS so try to do some yoga and meditation.
Ask for blood tests- serum ferritin should be above 100, preferably 300.
If you want to start supplements- try ferrous bisglycinate EVERY OTHER NIGHT as it raises levels faster & gets iron to the brain where it’s needed.
Try magnesium Threonate at night as well and ensure you’re not taking any anti depressants or anti histamines as they cause or worsen RLS.
Look up the pinned posts on this site to see if it is RLS you have. It is the unbearable need to move that’s the main criterium.
Gentle leg weight training and squats will also help and the hottest bath you can handle. Leg massages and compression socks also help relieve symptoms.
Many control their symptoms by avoiding triggers so keep a food, drink, meds diary and note anything that makes it worse.
Common triggers are alcohol, sugar, caffeine and carbohydrates. Also artificial sweeteners.
I hope you can see a doctor soon- via FaceTime or Skype if necessary.
Hi Kittygirl you have had some excellent advice from some of our members. Did you look at the diagnostic criteria that Manerva posted in his reply to check that it is 100 % restless legs syndrome? I notice you mention anxiety meds in your post which ones are you on as many antidepressants are also prescribed for anxiety and can make RLS worse? Do not stop any meds before seeking advice from a health professional though
Did you start on anything new 2 weeks ago? Did anything change?
Keep talking to us and ask any questions there's no such thing as a silly question here You have lots of support now. Please let you doctor know that you urgently need an appointment. Let us know how you go on
Pipps x .
I have consulted a doctor and they recommended me to a Neurologist in a few weeks. Meds can be a possible cause. Seroquel which is an ssri started my symptoms. i took that for two months before stopping and that’s been over a year ago. I am diagnosed with PTSD and Anxiety and ADD. I’ve been through hundreds of meds to help but nothing but adderall seemed to help with anxiety and depression, and my sleep was better. i had to stop because i abused adderall and wasn’t using it healthily. i’ve been on other ADD meds but it’s not the same, lol i sound like a druggie a lil. for about a week now i’ve started on guanadine (.2mg) which is a muscle relaxer and doesn’t have any noticeable affect. thank you for taking your time to respond i appreciate this so much to hear your perspective:))
Hi Julie. I’m so so sorry you are having such a rough go lately. I think you will find that things will start moving quickly in the right direction once you see a neurologist. I wanted to quickly share that Gabapentin and Lyrica are one of the first line drugs that your neurologist should try if they determine you do have RLS. They are also prescribed as an off brand drug for anxiety and depression. I found it to help with my anxiety which was a really nice added bonus. Once you see your doc make sure to post on here what their proposed treatment plan is. The incredibly knowledgeable folks on this site will help you know if it’s a suitable treatment plan. And make sure to read Joolsg’s post above. Not many doctors know that your ferritin should be between 200-300. We can provide you with supporting documentation if you need it. Best of luck to you. We are all here if you need us.
Hello my darling,
I started to get RLS before lockdown when I was stressed, anxious and didn’t stretch before bed. I’m 21 so I know how it feels to be young and have these problems! I noticed that my RLS becomes aggravated when I’m due on my period which is so annoying! This forum gives so much advice and help from many lovely people so utilise their information as much as you can! I really hope you’re able to sort the issue out and well done for coping too. It’s not easy, I’m sure you’re doing absolutely amazing my lovely💕 x
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