How do I live with this!!’: Developed... - Restless Legs Syn...

Restless Legs Syndrome

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How do I live with this!!’

Scott234
Scott234

Developed RLS two weeks ago but also over lockdown have found that I have developed pressure points when I try and sleep. These combined mean I’m getting virtually no sleep.

I’m terrified about my job and my life. Frankly it’s a struggle to get up and my concern is that at 42 I going to have this forever. Sorry if it sounds self indulgent but I need to vent. Friends and work have been very supportive but not sure for how long!!!

13 Replies
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How do you mean it developed two weeks ago? Was there an incident before it, did you make a change to diet or drugs used? Who diagnosed the RLS or is it self diagnosed? How does the RLS manifest itself?

Are you sure this fear is towards RLS and not Covid? There appears to be a link between that and your issues. I am not sure what you mean about pressure points - are you experiencing pain or is there a problem with the skin in those areas?

The more information you give us the better able we will be to help.

Scott234
Scott234 in reply to raffs

I diagnosed myself and chatting to GP but based on the 5 criteria. It comes on late evening and into the night.

I first felt it 2 Sunday’s ago. About two hours before symptoms came on I felt really weak and faint for a short time. I had been struggling to sleep with the pressure point pains I mentioned.

I don’t get major attacks only had 1 so far but always feel the burning.

COVID plays a part yes in my worries about the future but it’s more the lack of sleep as I work for the Civil Service so no real COVID redundancy fears.

Basically when I lie in bed I feel pressure and some pain at certain points on my body which is stopping me fall asleep

raffs
raffs in reply to Scott234

I would think a couple of weeks of restlessness and a self-diagnosis and a brief chat with a GP (ask anyone on here - there are very VERY VERY few Drs that understand RLS in any shape or form although will fire out some hefty and dangerous drugs to those complaining of restlessness without doing a proper IN-DEPTH assessment) isn't really worth that much - it is much too easy to say that and leave it at that.

To me it sounds much MUCH more like a somatization of psychic distress - in other words it sounds like your body is reacting in a physical way to your concerns over covid.

IF the issues only started after lock down and with no other changes to your drug intake (both recreational and prescribed) as many drugs like antidepressants can cause RLS SYMPTOMS (not RLS the condition) and the issue can easily be resolved by stopping the offending drug or physical health problems - renal issues, diabetes, iron deficiency among others can cause these symptoms and must be ruled out before you gain a diagnosis of RLS - there could be either major issues at work OR some simply resolved issue that a decent Dr can examine and resolve.

Without a proper medical assessment you could have major problems starting up or end up on quite damaging drugs to treat a condition you don't have.

Let me take this opportunity to ask Drs who are not seeing people - with your PPE and knowledge are you not still much safer than the ladies and gentlemen on our supermarket checkouts with a screen of perspex who face hundreds of people every day? Have you not dealt with much more contagious and dangerous problems in your practice to date? Jebus but along with the teachers you are letting yourselves down and could do with taking a leaf out of the checkout assistants books!!

I agree with raffs and add that although you say you meet the 5 criteria it doesn't sound as if you do.

You mention pain and you mention pressure points, but although pain can be a part of RLS, pressure points aren't. Furthermore, the principal defining characteristic of RLS i.e. the urge to move. you don't mention. Pain. really, is irrelevant to the diagnosis.

The first 4 criteria all qualify the urge to move, i.e that it may be accompanied by an unpleasant sensation, that it's worse when stiil, that it's relieved by moving and that it's worse at night.

There may be other things that have all 4 of those qualities, but if they're not the urge to move, then they're not RLS.

There are things that can trigger RLS symptoms, but on the whole, RLS does not so suddenly appear as you describe. Usually either someone has mild symptoms which when triggered, get worse, or the mild symptoms gradually get worse.

Pressure points or "trigger points" are more typical of fibromyalgia.

creakyjoints.org/diagnosis/...

These will be painful when you're lying down as you'll be lying on them. This will probably also be at night, because you probably don't lie down at other times. The pain will reduce when you get up, becasue you're taking the pressure off them. It's pain though, not the urge to move.

Doctors find this difficult to diagnose as much as they possibly misdiagnose RLS. I get the impression that when they don't know what soemthing is then they tend to say it's RLS.

Alternatively, it's true, anxiety might be the problem as raffs also says.

Scott234
Scott234 in reply to Manerva

Last night I had the experience in bed of not being able to settle and had to move my legs.

Manerva
Manerva in reply to Scott234

One of the biggest problems there seems to be with diagnosing RLS is the words that people use to describe their symptoms.

This is no criticism, but some people's descriptions are too ambiguous or unspecific which means they can be interpreted in different ways.

Being unable to settle is a feature of RLS, but it's also a feature of insomnia more generally. Similarly there could be many reasons why people feel they need to move their legs.

As an example, as I'm writing, I'm having the feeling that I have to move my left leg. This is because I'm getting a burning sensation at the front of my ankle and I know changing position may relieve it. I also know it's NOT RLS, it's nerve pain due to a spinal problem. RLS feels completely different.

In addition, it's a known phenomenon that when we learn about the symptoms of a particular health issue we start noticing that we have them, even when we've never noticed before.

The fifth diagnostic criteria for RLS is that the symptoms can't be explained by anything else and I'd say what you've described so far could be. You also have symptoms, pressure points, that indicate something else.

I wouldn't want you to particularly start taking RLS medications based on a misdiagnosis.

If you need to move your legs, how exactly would you describe that sensation?

Scott234
Scott234 in reply to Manerva

To be honest it’s hard to say. Last night in bed I couldn’t get comfortable until I moved the legs either through walking or moving them in bed. It then subsided around 4:30 after coming on at around 2 when I had woken up

I suppose my question is if you were in my place how would you approach this. Basically I’m trying to come up with a strategy to go forward and try and enable medical professionals to try and figure out what is happening and can it be treated.

I really don’t want to go on RLS medication, the stores on this site particularly around augmentation and DAWS are very sobering. However I also cannot carry on as I am as it is and will have a dramatic impact on my quality of life. My friends have been really supportive but I don’t want to drive them away due to this.

Manerva
Manerva in reply to Scott234

Sorry to be pedantic about this but you're not giving the description of your symptoms that people with RLS typically give.

Although it might be suspected that you have RLS it needs confirming, there are other things e.g. fibromyalgia that it could be.

You could try all the non-pharmacological measures that can be taken for RLS, but these aren't going to work immediately and might not work at all, especially if you don't have RLS.

You really need a confirmed diagnosis. Your GP doesn' t sound too helpful but you could go back to them. Rather than discussing the RLS criteria and whether you meet them or not, describe what symptoms you have and ask what they might be.

If the GP can't confirm the diagnosis, ask for a referral to a neurologist.

Sorry, it would probably be a great relief for you to think you definitely have RLS and could then do something to deal with it. However, you don't meet the fifth criteria. In addition, you have symptoms that don't fit the criteria (pressure points) and your description of your symptoms is not typical.

Hi Scott, I think there are a number of over the counter medications that can cause strange sensations. I think anything with Dextromethorphan (ie Nyquil, cough syrups, allergy medications, etc.) Anything new that you are taking or doing might be the culprit. I hope you can get things to settle down. RLS has to be the worst disorder you can have. It is not bearable.

I have to agree with you, RLS can be unbearable and damaging to our health generally. Sleep deprivation can lead to other serious health issues.

It's also evident that various medicines can make RLS symptoms worse. One such class of medicines is anything with a sedating antihistamine in, i.e. some cough medicines, otc sleep aids, anti-allergy medicines.

This is because RLS symptoms are worse when our dopamine levels are low and that's why symptoms are worse at night. Sedating anti-histamines lower dopamine levels.

In most cases these sedating anti-histamines do NOT cause RLS sensations in people who don't have pre-existing RLS. So if they make symptoms worse, it's because you have RLS.

Some very potent ones, e.g. those used as an anti-psychotic can cause Parkinson's Disease like symptoms.

I found that the essential hallmark of RLS was indeed the sensation to move your legs - so much so that you can't lay there for long - tired as all get out, you HAVE to get up and walk around. The only relief I ever found was to raise my legs to almost vertical with a stack of cushions and maybe got 2 hours of sleep.

That foot raising technique is something I have never tried or heard of. I will have to give it a try.

You are completely justified in your concerns. Make an appointment with a neurologist ASAP and also a holistic doctor who can determine if inflammation is at the root of the problem, A great resource for people with RLS is RLS.org. Become a member for $35 annual fee. They have a wealth of knowledge.

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