Concerned Wife

Hi, hope this is OK to post. My husband has had mild RLS for many years but last weekend his symptoms suddenly became extreme and constant, seemingly out of the blue. For context, he is 30, and has taken antidepressants for many years without any increase in symptoms. He has also been taking amipiprazole for over 6 weeks without any issues, and this has actually improved his mental health. About a month ago he woke up with shoulder pain and a few weeks ago after no improvement was prescribed naproxen, amitriptyline and codeine. The shoulder pain didn't get better so he stopped taking the pain relief a day or two before he saw a physiotherapist who said it was a nerve in his neck that would get better on its own. The day after he saw the physiotherapist he woke up with unbearable RLS which has worsened then peaked for a week. He is experiencing no pain or tremors but has a crawling sensation up and down both legs like he is being tickled. It is constant all day and although he can sleep at night he can't concentrate on anything or do anything during the day. All he does is sleep or cry. He is off work with a week long sick note. The doctor prescribed him pramipexole at 0.5mg and told him to take one or two a day and they would work within a week. They also suggested he stopped taking the aripiprazole. It has been 4 days and it hasn't made the slightest bit of difference. Yesterday I paid for a video gp appointment and they sent him to our local hospital where he had extensive tests including iron levels, dehydration, ecg, magnesium, b12, white blood cells and various other blood tests. He also had a drip in case he was dehydrated. All of the tests have come back fine and he was sent home. I am not sure what we can do next but the doctor won't be able to see him until Monday and we are about to have an awful weekend, I'm not sure how much longer he can take it. Any suggestions?

[Hidden]

I should also say stopping the aripiprazole doesn't seem to have made a difference, he also tried codeine and that didn't help. He has tried heat, walking, massaging, nothing gives him any relief other than sleeping.

[Joolsg]

If it is RLS, Pramipexole would stop the symptoms. It's often given on a trial basis. If it stops the sensations, it confirms the RLS diagnosis.You say he only gets relief when asleep. Severe RLS stops people sleeping. If your husband has no trouble falling asleep and staying asleep, it doesn't sound like RLS.

Have a look at the diagnostic criteria.

rls-uk.org/symptoms-diagnosis

Movement stops all the sensations. Does walking about relieve the sensations in his legs?

RLS is the Unbearable need to move to get relief.

The fact the RLS didn't worsen on anti depressants and Amitriptyline is another clue that it probably isn't RLS.

Most anti depressants and Amitriptyline make RLS much, much worse.

It sounds like he has a trapped nerve or peripheral neuropathy or fibromyalgia.

I think you should insist on a referral to a neurologist.

As the Pramipexole hasn't helped at all, he should stop taking it. It is no longer prescribed by experts because of the high rates of drug induced worsening.

I'm sorry I can't add more, but it just doesn't sound like RLS.

[SueJohnson]

It doesn't sound like the increased symptoms are RLS since they are in the day and not the night. Also .5 mg pramipexole is the maximum amount and he is taking 2 a day. If it were RLS that would definitely have stopped it. So it sounds like it is a nerve problem. But in the neck? I would see a neurologist who specializes in nerve problems and stop the pramipexole.

[Hidden]

Thank you both, this is very helpful information and we'll look into this to see what the NHS suggests as next steps for possible nerve issues.

[Svengolly]

Odds of eliminating RLS are pretty good ! …

Studies at John Hopkins have shown 50% of rls sufferers get total relief ,

and another 25% partial relief by raising their Ferritin Level (stored iron) !

I had unbearably horrific rls until i raised my low Ferritin levels.

But note some sufferers have "normal" Ferritin levels and only

benefit when they raise them to HIGH levels.

Sometimes as even as high as 400 to get relief.

There is a small chance a person can have dangerously high iron levels so iron and ferritin blood levels should be tested before piling on Iron .

It took me 8 (horrific !) months taking expensive Heme Iron supplements to raise my Ferritin levels ..

but then i got total relief.

I took one of each of these a day …

amazon.com/Proferrin-ES-Pol...

amazon.com/gp/product/B005C...

Five years later my rls came back strong :(((

& no surprise .. my ferritin test came back low .

I was also anemic.. so i was (thank God & Dr. ) ordered iron infusions, and within 2 weeks my rls evaporated , as well as 30 years of insomnia !!!

This whole nightmare (as well as a dozen gut and other health problems)

were surely caused by my stupid choice to be a vegan/vegetarian .

Two years ago i went on the Carnivore diet

(which fixed my 5 decades of gut & nueroligical issues in months) .

I ate tons of grassfed beef , plus some mega-iron rich beef heart monthly.

Meat iron is way higher & more bio-absorbent than plants ...

needless to say my iron/ferritin levels are 5x higher than my veggy years !

If you fear saturated fat or meat or think it’s unethical like i did …

imo we have been grossly misinformed or worse disinformed .

Watch the movie Fat Fiction … Google MeatRx …

and bear in mind our the mainstay of our evolutionary diet was fatty “grass-fed” animals .

Google eatwild to find local humanely raised grassfed meat

[Eryl]

Whay did he eat the day befor his attack? I'd hazard a guess it was something especially sweet of full of refined carbs of refined seed oils both of which are inflammatory which makes the nerves hypersensitive leading to rls and painful joints.

[DicCarlson]

Yeah - if the Prami didn't help it is probably not RLS. Consider that shoulder pain is actually a pinched nerve in the neck - Radiculopathy. It is pain, numbness, or tingling in a particular area of the body. It often happens in the neck or lower back. Watch the video in the presentation...

hopkinsmedicine.org/health/...

[CaraCara]

Sorry to hear about your issue. I tried amitriptyline for neuropathy but like most treatments for nerve conditions, it didn't work except made me drowsy during the day. I'm still searching for a treatment that might work. Sorry can't help further - but keep searching like most of us are doing. All the best.

[Hidden]

Thanks everyone for your help. He has been diagnosed with a trapped nerve condition and is receiving appropriate treatment which seems to be improving the situation. Definitely turned out not to be RLS. I'm not sure how to turn off replies. Thanks.