[disclaimer: sorry for the wall of text. Also, English is not my first language]
I'm a bit of a loss at the moment.. I have had sudden onset of RLS since this week, without having had it prior. It's driving me mad and has consumed my thoughts.
For me it's like an itch inside my muscles, primarily in my legs, but also sometimes in my buttocks, between my shoulder blades, in my jaw and neck and in my arms and hands. I also seem to have a tremor and what I would describe as micro spasms in my leg muscles. I'm familiar with having a tremor (diagnosed with ET), but it's more than usual. I've only experienced these kind of tremors before when I was really anxious about something.
Looking back, it started when took ceritizine for my dust allergies. I never took the stuff before, but wanted to try to see if it worked. I used it for 5 days in total, having taken my last one last Tuesday.
I went to the doctor and got my blood checked out. My ferritine level is 183 which looks to be good.
The weird thing is that I've also become a lot more emotional in the past couple of days. Having to cry randomly or when I'm talking to my wife. What is even weirder is when I have cried, the RLS seems to have disappeared.
Having some repressed emotions wouldn't surprise me. We've been in almost total lockdown since March (I'm a diabetic type 1) and only sparsely have seen people the last couple of months. My daughter was born last September and was diagnosed with a thyroid disorder (worried a lot). Also very little sleep because of the night feeding (live in a small apartment, so I always wake up). Because of the hole virus thing I've also avoided going outside, so haven't been getting any exercise. Since Wednesday I do go out walking everyday.
Because of all the anxiety of googling RLS and causes I've also taken Oxazepam the last two nights (5mg dose). The first night after the dose the RLS symptoms disappeared again! The second night it was there, but far less and kind of like a heavy feeling in my calves.
Next Monday I have a new appointment with my doctor. I plan to bet on two horses and get referrals to see a psychologist (for the anxiety and maybe depression?) and a neurologist.
So my questions after this long wall of text:
1. Could ceritizine trigger RLS? I read that it's supposed to be safe, but I find it quite a coincidence. And if it was the trigger, could this side effect disappear in time?
2. Could repressed emotions and anxiety trigger RLS? Or could it give RLS like symptoms? I don't have the usual nightly kicking thats associated with RLS.
3. I read that ferritine levels could be normal despite having low iron values. Should I ask for more extensive iron blood tests? Like Iron, transferrine and saturation?
4. Out of despair I have started taking a lot of supplements: iron, magnesium, zinc, vitamin d (been taking that since March), CBD oil. Should I continue these, or should I drop any of them?
5. I don't take vitamin K with my vitamin D. Could calcium build up cause RLS symptoms? Should I ask for that in the blood test?
6. I've read that GABA and glutamate can play a role in RLS. Might having constant stress reduce GABA? And are there people here that have managed there RLS by focussing on stress reduction?
7. Is it possible to measure GABA and glutamate levels? If so, should I ask for it at my appointment next Monday?
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petersnl
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The last few months have been an average of 5.5~6h of sleep since my daughter was born. Last night I had my first long night rest since September (8h in total). My wife has been carrying al the load of caring for our daughter the last couple of days with the intention of giving me some extra rest. I do feel incredibly guilty for not helping so much and complaining all the time
Hi and sorry to hear of your suffering.
The first thing to consider is whether you have RLS or not.
Here's a link to the official RLS diagnostic criteria.
If the particular symptoms you think match ALL these criteria then you may have RLS. Please note the fifth criteria,
Your symptoms could be explained by anxiety/depression.
Only sedating antihistamines make RLS worse and ceritizine is NOT one of these.
As Madlegs says, if you're taking so many supplements, if any of them work then how do you know which one?
As your ferritin is 183, taking iron orally may have little effect. It's only really effective if your ferritin is less than 75.
The other most significiant supplements for RLS are Vitamin B12, vitamin D and magnesium. You can have blood tests for these. Supplements may help if you have any deficiency in any of these.
One class of medicines used for RLS is aimed at dfecreasing glutamate levels, but before starting such drugs it's best to first confirm that you do have RLS.
Thank you for replying. According to the criteria, I don't seem to have RLS: I don't have the urge to move my legs (or other limbs) when I don't have the weird feeling. Also its not worse at night/evening. It just comes and goes when I'm awake.
I've decided to stop taking all the supplements (with the exception of magnesium). You guys have a good point that I won't know which one would work. I'm just so impatient into stopping this.
I guess I'm a bit relieved you're saying that anxiety/depression could also explain my symptoms. Though I'm not doubting you, I am having trouble finding a credible source for that. I must admit that I have been scouring the web in the search for an explanation of my symptoms and how I could relief them.
Could you point me in the right direction to read up on that? As I said, English is not my first language, so I'm probably missing the correct search terms. I'm only finding correlations the other way around.
Regarding the blood tests. I had my folic acid, B12 and vitamin D levels checked in August. I was feeling tired all the time and asked for this to be checked:
Folic acid: 21 (normal range 5-61)
Vitamin B12: 331 (normal range 148-584)
Vitamin D: 97 (normal range 50-150)
Would the magnesium blood test be reliable since if been taking 400mg a day since yesterday? Also, would a calcium test be a good idea? I haven't been taking vitamin k with my vitamin D, which apparently isn't such a good idea and could give hypercalcemia.
It's clear you don't have RLS.
Your blood tests appear normal.
Based only on these two things, it seems you could stop taking any supplements.
Your symptoms -
You mention tremors, which can be exacerbated by anxiety. You also mention symptoms which sound like "fasciculations", also exacerbated by anxiety.
This a vicious circle since you are becoming increasingly anxious because of your symptoms.
These could also be exacerbated by fatigue because of insomnia.
Insomnia can be caused by anxiety and becoming emotional/ crying is depression.
It would be a good idea to get out for some exercise.
I also suggest you seek some professional help, a doctor.
Self diagnosing any condition isn't always a good idea.
Peter, I agree with Manerva. I doubt it is RLS. I think you are wise seeing your gp and asking for a referral to a psychologist and a neurologist. Note: few neurologists are knowledgeable about RLS. If you think what you have is a RLS and they go along with it, they may probably prescribe a dopamine agonist (ropinirole or pramipexole), which is not a good idea as no longer the first line mediocine for RLS and otherwise a too strong medicine to take without proper reason. I have a gut feeling you should address your anxiety and you tiredness (try sleep hygiene, however difficult with a baby) first. Also, as you have diabetes type I, your symptoms may well be rather neuropathic. But then, diabetes is a know condition potentially causing (secondary) RLS.
Finally, don't self medicate until you really have a good diagnosis. And even then, better discuss with your doctor.
Thanks for the reply (also thanks Minerva!). The last week has been such a rollercoaster, and with everything that has happened the past 3 years, some stress/anxiety/depression(?)-build up wouldn't be that strange:- diabetes t1 diagnose
- a burn-out
- my wife having had a severe depression
- Arrhythmia (which have been mostly alleviated by proper medication now)
- panic attacks (mostly when I was on sotalol for my Arrhythmia, but probably had them before being on them)
- my daughter being born without a thyroid, which caused a lot of worries (she's on proper meds and doing fantastic now 😀)
I really wanted it to be something that I could fix fast, hence all the supplements. I'm glad I posted here and am grateful for all the good replies
I'm guessing that I will mostly benefit from psychologist, but will keep in mind you're advice about the neurologist.
Ps. The random crying spells I have seem to alleviate the symptoms a bit. Guess the floodgates just needed to be opened.
And yes I'm from The Netherlands. Guessing from your name, you are too?
Ja, ik ook. Als je meer nederlandse info wilt, stuur me dan een pm (klik op mijn naam en dan zie je t wel). Je /jullie hebt/ hebben het wel voor je kiezen gekregen, niet gek dat je daar stress en meer van hebt.
Hi, like several others here I suspect anxiety is playing a significant part here. It may sound odd that it can cause odd aches and pains and sensations but that has been my experience and I’ve seen it many times. It seems like you have a lot going on and things to manage which may be outside your control which can contribute to stress and I think you are doing the right thing by talking about it and sharing. I personally have found meditation useful over the last couple of years and have found the Headspace app useful although there are a few others such as Calm. Taking just 10 or 20 minutes a day to reflect and listen to yourself can help with perspective and understanding what you are feeling. I’m not a “mystic “ type and I find it’s a very useful technique for getting some space between you and the very real symptoms you are feeling. All the best.
Thank you for all the replies, I really appreciate it. I had my appointment with my GP this morning and got a referral for a psychologist and a neurologist. I'm more and more convinced that it is an anxiety problem (broke down in tears at the doctor again..), so will probably even cancel the appointment with the neurologist (waiting lists are quite long here) when I get the anxiety and stress under control (read:
Just for legacy sake (for when people google on these problems): I tried a hot bath with epsom salt for the first time in my life this morning and it really does seem to help in calming me. No idea if it helps for RLS, but there you have it :). For now coffee is banned, so is youtube in bed (such a bad habbit) and daily walks are now on the schedule. Hopefully the psychologist can teach me techniques to vent my stress and anxiety more regularly instead of bottling up (unconsciously).
I will try to remember to make an update in this thread in a few weeks, so people with similar problems can see what to do about it.
I'm so sorry to hear about your RLS. Everyone on here knows just how miserable it is. My RLS came on me after I had my knees replaced.
It sounds like you're trying all the right things. One thing that helps me is to keep track of what I'm eating. Certain foods may trigger it. For me its foods in the nightshade family, tomatoes and potatoes. Also too many carbs and sugar does it too. Also look out for the chemicals in processed foods MSG and borates in commercial bread. Caffeine may be another.
A supplement I have just started taking called GABA, is wonderful!
It's fast acting and so far, has helped considerably.. My doctoror has had me on ropinirol and I'm hoping to wean off of it if I can. I want to stop the pharmaceuticals all together.
Try to stay happy and content if you can and focus on something other than your twitchy legs! My pets help me with that. I have my pug dogs, aquariums and even a terrarium with a couple of frogs! Caring for them takes my focus off of myself.
Good luck on this. My thoughts and prayers are with you
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