Canceled flight and feeling overhelmed

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hama90
Posts: 2
Joined: Sun Sep 30, 2018 9:19 pm

Canceled flight and feeling overhelmed

Postby hama90 » Mon Oct 01, 2018 10:11 am

Hello,

I will more and less now rant here a bit to make me feel better. I don't think I can tell this to anyone outside of people with RLS...

So I will tell how I landed here: I deal with headaches Problem all my life. I'm 28 now and it started around 10-11 years ago. It's almost the same time when I started to have Bruxism at night but at that time, I didn't know its a "Problem". Fast Forward I still have Bruxism and did almost anything you can Name it. I have a lot of days with headaches and one of those days was last Friday. I did take a lot of Pills on that day to fight it.
I went to bed later on and woke up terrible. I felt sick and had to puke. Even had Fever Feeling and a lot of strange Feelings as well. I told that my girlfriend and I said Maybe I took too many Pills. She is very fast concerned and told me to call my parents (My girlfriend and I live in different countries at least I hope till next Summer). I called my parents and told them I don't know what to do. I didn't want to go to an emergency since I'm a guy that doesn't like to make a scene out of nothing but we decided to go. So the put me in a room and diagnosed me and now the real RLS story is coming out now: When I was lying without any distraction beside having a fever and feeling to puke, my left foot started to have a very uncomfortable feeling and I felt horrible. The bed was so freaking small and I couldn't really move or stand up because they gave me stuff in my bloodstream. I literaly felt getting crazy now. I did not know how I could survive this and I did not know how long I will stay in the Hospital. I'm a guy that can handle physical pain a lot and already did a lot in my life but this "mental" pain was a disaster. Its literaly being in hell tortured. I knew at this point I had to try to relax. I scrolled a bit on my phone and had a nice view outside so I tried to not fight the "mental pain" of this foot feeling and simply relax. After about 4 hours like this, they let me go home. I wanted to tell my girlfriend about it or my parents but I don't think they understand it.

At home, my foot was still feeling strange but I can relax 50 times better in my own room. Restless Legs is something I knew before this hospital scenario. I remember when I had a 20 hours flight I felt incredibly strange feelings in my foot and thought it is normal that people have that on long flights. This was almost 7 years ago. Since then I have this feeling very few and strangely I have it more when I sleep with someone in my bed. With my ex-girlfriend I had it quite a few times and had problems to sleep and now with my current girlfriend, especially when I slept at her place (her father lives in my country I know long story xD) I needed to scroll through my phone for another 30min to finally sleep.

I maybe panic a lot now since this hospital story but when I look back, I really think this RLS is getting worse now and I'm super afraid.
I also wanted to go to my girlfriend for holiday and Im so afraid of travelling now with this feeling and also feeling still sick, that I cancelled the flight. I told my girlfriend its because Im still sick and she understands it but it also has to do that Im super afraid of now having RLS. I know this all sounds stupid and Im a bit ashamed to be honest but I dealt with a lot in my life and its so unfair if I really have another Problem. Now at home, it got a bit better and I use a lot of magnesium and iron supplements since I heard that helps. Problem is that I have this feeling since Saturday evening nonstop almost in my foot. Some hours less and some more. Maybe because I can't eat and puked a lot?

So my plan is now: I will call today a sleep clinic that is treating RLS syndrome and I could also talk with them about my Bruxism at night. The doctor there knows RLS so its already a good thing. I remember one doctor telling me long ago that I had low Iron so maybe a simple solution can help.

Sorry for the long rant but I had to let out at least a bit here since I should now be with my girlfriend and not alone feeling sick and googling RLS super depressed.

hama90

stjohnh
Posts: 569
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Canceled flight and feeling overhelmed

Postby stjohnh » Mon Oct 01, 2018 1:23 pm

Hama90, welcome do the RLS community. There is lots of good information here and lots of folks that know lots about RLS.

It’s not clear to me from your post that you have RLS. What time do the symptoms usually start? Does the feeling go away immediately when you get up and walk around? Do they come back again in a few minutes after walking around?
Blessings,
Holland

hama90
Posts: 2
Joined: Sun Sep 30, 2018 9:19 pm

Re: Canceled flight and feeling overhelmed

Postby hama90 » Mon Oct 01, 2018 1:39 pm

It starts when I'm in bed and want to sleep. Its only in my left feet. And yes, when I move my feet or walk around it gets better. But I don't have every night. It was more of 3-4 times a month thing but now its common more and more.

Polar Bear
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Location: N. Ireland

Re: Canceled flight and feeling overhelmed

Postby Polar Bear » Mon Oct 01, 2018 2:48 pm

hama90 - if it helps, here are questions to help determine RLS.

1. Do you experience the urge to move?
2. Is the need to move overwhelming to the point that you cannot resist moving your legs?
3. Will the urge to move increase if you are in a confined position?
4. Do you have symptoms both sitting and lying?
5. How long do you need to be at rest before your leg symptoms begin?
6. Do your symptoms only begin when your legs are in a specific posture?
7. How quickly do you get relief when you start moving?
8. Do your leg symptoms occur when you are walking?
9. If you have obtained relief with walking, do the symptoms ever return while you continue to walk?
10. When are your symptoms worst?
11. When you are symptoms least?
12. Do you find your symptoms are less in the morning.

Have you ever spoken to your GP about this with a view to confirmation that it is RLS and to consider treatment.
It might also be a good idea to have your ferritin serum level checked, this is pretty important for an RLS sufferer. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, (especially if we are taking a DA drug such as pramipezole or ropinerole.) When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

You may also find useful information in the section Physical Treatments, ways to try and alleviate discomfort without medication.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Location: Northwest Territories, Canada

Re: Canceled flight and feeling overhelmed

Postby badnights » Tue Oct 02, 2018 2:15 am

Hi hama90
Everything you say sounds like a description of WED/RLS: its being worse on long plane flight, when there's no distraction, and when the bed is small or shared; and the way you describe how you felt, including that it was torture, that you thought everyone had this, that you didn't know how to describe it to your family - your description is very much a description of WED/RLS. (The newer name for RLS is Willis-Ekbom disease). The only odd thing is that it is only in your left foot, which suggests to me that maybe the WED/RLS is secondary to some other issue (a pinched nerve? but there is no scientific evidence for such a thought, that I know of).

What you feel is fear, and that's normal! But a bit of knowledge will reduce that fear and make everything much more bearable. Read as much as you can about the disease. There are a lot of incredibly useful pamphlets and brochures on the RLS Foundation's website at www.rls.org. Check out the topic called A Good Place to Start in the Just Joined forum on this board. Go over the questions Betty listed - answers that indicate WED/RLS are given at the end of this post.

The iron is a good step. Get a doctor to order a complete iron panel including serum ferritin. If your ferritin level is below 100, and your doctor confirms you are not at risk for hemachromatosis, then probably supplementing with iron would help the symptoms.

Beware doctors who say they know RLS/WED! Many do not! Many will prescribe dopamine agonists (Mirapex/pramipexole or Requip/ropinirole) without even checking your ferritin. Many people can be helped by taking iron alone, and the dopamine agonists are a cruel road to go down, they almost always will cause a worsening of the symptoms they were meant to improve (this phenomenon is called augmentation) Beware any doctor who recommends dopamine medications without checking your ferritin first, and beware those who cannot answer you when you ask what augmentation is. That said, seeing a good sleep doctor who really does know WED/RLS would be of benefit to you.

But really you have to check for other issues to do with neurons .. the fact that it's only in your left foot bothers me and makes me suspect there might be something else that could be fixed that would make the WED/RLS symptoms go away (note I am not medically trained in any way). I don;t really know what you would check, but someone else might have ideas.

And as for dealing with other people, and feeling shame: there is no shame in having a weird disease. If you actually have it (I suspect you do, but a secondary form), tell people you have Willis-Ekbom Disease (WED). It was formerly known as Restless Legs Syndrome but that name is a hangover from before there had been much research into its cause. A syndrome is a collection of symptoms with no known underlying pathophysiology, but WED/RLS is a disease, because it is known to have an underlying pathology, which is becoming better and better understood (lack of iron in certain parts of the brain and dysfunction of a number of interlinked neurotransmitter systems (dopamine, glutamate, adenosine, and endogenous opioid systems)). Tell them that WED/RLS is a sensori-motor disorder, that is, a disruption of the sensory and motor systems, that it is circadian and is worse in the evening and early night, that the abnormal sensations include a compelling urge to move and are triggered by physical and mental relaxation: yes! it happens at night when you relax, so how do you sleep? You can tell them that only one disease exists that causes greater sleep loss than WED/RLS - and that disease is fatal (it's called Fatal Familial Insomnia. I'm happy I have WED/RLS and not that one.)

Finally, come back and rant whenever you feel like it. That's what we're here for. And don't worry; it will all work out. Remember to arm yourself with information.

The answers that would mean you probably have WED/RLS are below:
1. Do you experience the urge to move? yes
2. Is the need to move overwhelming to the point that you cannot resist moving your legs? yes
3. Will the urge to move increase if you are in a confined position? yes
4. Do you have symptoms both sitting and lying? yes (but sometimes only lying)
5. How long do you need to be at rest before your leg symptoms begin? (the less time the more likley its WED. I think)
6. Do your symptoms only begin when your legs are in a specific posture? no
7. How quickly do you get relief when you start moving? right away
8. Do your leg symptoms occur when you are walking? no (yes in severe cases)
9. If you have obtained relief with walking, do the symptoms ever return while you continue to walk? no
10. When are your symptoms worst? evening and early night
11. When you are symptoms least? morning, or daytime
12. Do you find your symptoms are less in the morning. yes
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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