Has RLS started for anyone else after an operation

[Rebeccanorth27]

Hello everyone, I’m 29 years of age and just recently in the past few months started getting restless legs. I just stay awake all night and it’s starting to become unbearable and effect day to day life. It started about a week maybe 2 after I got out of hospital and had an operation. Has anyone else had a similar experience or do you think it’s just a coincidence. I appreciate any help/advice I can get. Thank you

[Hidden]

Hello Rebecca,

I'm sorry you're having this problem and I appreciate from personal experience how awful it must be.

I'm sure that you want information about an effective and immediate solution. I'll try to give you that.

Two things are immediately important

1) The diagnosis of RLS needs confirming, it could be something that mimics RLS.

2) If possible whatever has caused this needs to be identified.

As regards 1) you can compare your symptoms to the accepted diagnostic criteria for RLS.

Here's a link

irlssg.org/diagnostic-criteria

You also ought to consult your GP.

2) There are many things that can, apparently suddenly, "trigger" RLS.

Whether or not the surgery was a trigger in your case depends on -

- what the surgery was for

- what medications you were given during and after surgery

- any undetected consequences of the surgery

- whether you had (mild) symptoms before the surgery.

2) is important because if something is "triggering" or causing your symptoms at this time, then removing the trigger, cause or correcting them will relieve your symptoms.

I think you need to know that it's commonly accepted that there are two types of RLS.

"Primary" RLS is considered to be a condition in itself and genetic in origins.

"Secondary RLS" is considered to be a result of some other health condition.

FOR BOTH - discovering any trigger or aggravating factor is important. For secondary RLS the underlying health condition needs treating.

Some possibilities in your case

- if you were given opioids during or after surgery, RLS can be a withdrawal effect.

- if you had blood loss during surgery,

- if you were unable to take adequate nutrition.

Most aggravating factors in primary RLS are other medications. Are you taking any? Pregnancy can be a huge factor.

Underlying conditions for secondary RLS includes anaemia, diabetes, thyroid dysfunction etc.

Most people with RLS have the primary type. I'm afraid this is chronic, life long and gets worse with age.

I think it's really VERY important that you consider the following

1) I appreciate how desperate you must feel, but don't rush into agreeing to take a treatment that may have adverse long term consequences.

2) Iron therapy is a significant treatment for RLS but takes time to be effective. Don't forget about it in your rush to get immediate relief.

3) there are psychological and emotional factors in RLS that can worsen your experience of it. There are also psycho-social, occupational, educational and even spiritual consequences to primary RLS. Do NOT dismiss these.

For immediate relief you will need medication. When this happens it's easy to think problem solved and forget 2) and 3).

Medication

This is based on the assumption that you've not taken medication before

- your GP will be able to prescribe an appropriate medication. However, be aware that they may know little about managing RLS and they are known to prescribe inappropriate medication.

- they may want to refer you to a specialist usually a neurologist. This could take a long time, so the GP still needs to prescribe something immediately to avoid you unnecessary suffering.

-the internationally recommended first biomedical treatment for RLS symptoms is either pregabalin or gabapentin. UK official recommendations do identify these as one alternative.

These may take several weeks to work. During this time initial side effects can be moderately severe until you get used to the drug. Note that many people in these first weeks experience side effects and no benefit, day it isn't working and stop taking it. This is a real shame.

UK guidelines also state that if sleep is a problem then a SHORT term course of a sleeping aid can help, typically a benzodiazepine, e,g, clonazepam.

Please note that any health professional cannot expect you to consent to any treatment unless you are fully informed about its benefits, its risks and any alternatives.

Doctors should agree a treatment plan through discussion with you and not simply impose a treatment of THEIR choice on you. There are both legal and ethical reasons for this.

I strongly suggest you read the following link.

pubmed.ncbi.nlm.nih.gov/274...

In the meantime!

Some simple measures which may help you.

- avoid alcohol, sugar, sugary foods, nicotine and caffeine.

- if you use recreational drugs, be aware that some can make RLS worse. One exception is cannabis which can actually help.

- if you can't sleep, don't lie there struggling, get up! RLS sufferers tend to develop phobias, one is a fear of going to bed. "Bed dread!"

- do something to distract yourself from the symptoms either mentally or physically. Obviously any physical activity shouldn't involve too much exertion.

I appreciate that if you're not in bed and doing things, you won't be able to sleep, but lying in bed not sleeping is worse.

- gentle exercise can help with RLS, including leg stretches. Avoid strenuous exercise, keeping "fit" is not the same as keeping healthy.

- keep a food diary of what you eat, on a daily basis, and what your symptoms are like.

- anxiety is a major factor in RLS whether you're aware of it it not. You may be under stress at this time anyway, you've just had surgery. You will be anxious about sleeping. If you have primary RLS you need some long term stress management strategies.

When you see the GP, ask for blood tests for iron deficiency.

You may need to educate your GP about the biomedical management of RLS. You can refer them to the following websites.

cks.nice.org.uk/topics/rest...

mayoclinicproceedings.org/a...

[Joolsg]

Many people do report that their RLS started after an operation, particularly if it involves bones. Also spinal anaesthetic can trigger it. The anti nausea meds given after anaesthetic can also trigger RLS.It may resolve after a few weeks, but if it doesn't, follow the steps/advice listed by Manerva.

[Mycatis6]

I too think it is linked to surgery I had a Whipple's for cancer last year and after 7 hours of surgery spent 10 days in ITU then 7 weeks in HDU. The RSL stared on my 4th week and was so bad and has been ever since. I did not eat or drink for 6 months post op I was fed via a tube which suggest mine is not food related but I do stick to a very low Carb diet.I cannot work out what is triggering my RSL weather it is a deficit or drug induced. I personally think Proton Pump Inhibitors are not helping my RSL and have reduced and now stopped taking them to see if I get any relief. I have Barrett's oesphagus so will have to go back on some kind of PPI to protect it. I have taken 3 months to come off pramipexole and find though it is no better it is now worse.

[Hidden]

I had a knee replacement operation 7 years ago and was told my rls would get worse - which is an understatement., operation was a success! RH.

[Munroist]

I have seen many posts saying that RLS got worse after an operation so you are not alone. Mine got worse after spine issues but no operation. If feels like the trauma to the body can trigger it. It's yet another unexplained aspect of this complex condition.