First time poster

[Yorkiebarrr]

Hello all. First time poster here. I'm looking for some help. It's currently 01.52am and I am awake again with restless legs. I've been suffering for a few months, but the last two weeks is unbearable. I'm getting next to no sleep, if I fall to sleep from exhaustion it wakes me up within 30 minutes. My legs cramp and burn so hard its physically painful, and I don't know if it's a thing, but it's spreading to my upper body and arms. I have tried exercises, massage, hot and cold baths, creams. - I feel like I'm being tortured and I don't know where to turn. Any advice please? I have a 3 year old and I'm exhausted.

[67Waterman]

We are lucky nowadays that there is medication that can help Restless Legs Syndrome. Can I suggest you go to your doctor and ask him what medication he can provide to you. I am on Ropinirole / Requip, which is a dopamine-receptor agonist (lack of dopamine in your brain is one of the causes of Restless Legs Syndrome. In addition, I have also starting taking a small dosage of Gabapentin, which is an anticonvulsant, and can directly target the nerve endings in your legs and arms. I hope you get some help, because Restless Legs Syndrome can be one of the most debilitating health issues to have, and so little is known about it.

[Elffindoe in reply to 67Waterman]

Please note that dopamine agonists are no longer recommended for the first treatment of RLS. Therefore newly diagnosed sufferers shouold not be prescribed with one e.g. ropinirole.

Hopefully you've been made awae of the high risk of augmentation withg these drugs

Please read this link

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

[67Waterman in reply to Elffindoe]

That is really interesting and something that I was not aware of - so my apologies. And yes, am suffering augmentation, so am trying to add Gabapentin into the equation ....

[Elffindoe in reply to 67Waterman]

Adding gabapentin may not help.

It's best to wean off the ropinirole.

Read up on augmentation.

[SueJohnson in reply to 67Waterman]

Reduce the ropinirole by .25 mg every 2 weeks. Starting on gabapentin is good because it takes several week to be effective although they won't work until you are off ropinirole for several weeks so don't bother increasing the dose before then.

[Joolsg in reply to 67Waterman]

As Elffindoe advises, dopamine agonists are no longer first line treatment because of the very high rate of augmentation. Withdrawal from DAs can be hellish for the vast majority. Impulse Control Disorder is also very high - about 17%.

[Madlegs1]

Sorry to hear about your situation- it can be incredibly tough coping with a toy ,while you're running on empty.What, if any ,medications are you on?

Did you experience rls while pregnant?

Have you had an iron test?

What exact number is your serum ferritin?

Do you keep an intake diary- food, drink meds. ?

We can better help when we know your situation.

Hoping to hear from you very soon.

All the best.

[Yorkiebarrr in reply to Madlegs1]

Hi there. I suffer quite badly with anxiety and depression. From what I've read so far I know antidepressants can worsen symptoms, but coming off of antidepressants isn't really an option for me.

I'm currently taking:

Sertraline - 100mg

Propranolol - 20mg up to 3x a day when required.

Cocodamol - 30/500 2 tablets when required for pain.

I actually have blood tests booked in this Friday to test for a bunch of things due to fatigue. Including testing for iron deficiency, diabetes, vitamin deficiency.

I did suffer with low iron whilst I was pregnant, but was told it wasn't severely low and was given tablets.

I also did have restless legs when pregnant but very mild and it subsided as soon as I had my daughter.

I don't keep a food/fluid diary. I have IBD so am intolerant to a lots of foods so I generally have a bland very samey diet. But definitely nutrient in vitamins etc. I do drink a lot of tea, but avoid it before bed.

[Elffindoe]

Hi anf so0rry to hear of your situation.

Your RLS sounds svere and it may be that you need some medical.

I'm aasuming you've not had any before.

Please read this link which more or less tells you all about the management of RLS.

mayoclinicproceedings.org/a...

You will need to seea doctor and you can discuss the information in the link with them.

The main points are

You need blood tests for serum iron, transferrin saturation, ferritin and jhaemoglobin.

If these are low then you need treatment for iron deficiency.

If they're normal, if your ferritin is less than 75 then you should start an oral iron supplement. - more information about this, just ask..

The link gives detailed information about the medicines recommended for RLS.

PLEASE NOTE that dopamine agonists, i.e. pramipexole, ropinirole or rotigitine are no longer recommended for the first treatment of RLS.

If your doctor offers a dopamine agonist ask for the alternative i.e. gabapentin or pregabalin.

Also see this link

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

[Joolsg]

Sorry to hear if your situation. Welcone.Can you give us more info.

Are you on any meds at all, including OTC meds like cough and cold remedies? Were you anaemic during your pregnancy? Did you get RLS during your pregnancy?

We can guide you as soon as you give us the information.

The majority of RLS patients can resolve their RLS by raising serum ferritin above 10p, preferably 250 so get a blood test and ask for the actual numbers. Doctors will tell you bloods are fine when they're way too low for people with RLS.

[Yorkiebarrr in reply to Joolsg]

Hi there. I suffer quite badly with anxiety and depression. From what I've read so far I know antidepressants can worsen symptoms, but coming off of antidepressants isn't really an option for me.

I'm currently taking:

Sertraline - 100mg

Propranolol - 20mg up to 3x a day when required.

Cocodamol - 30/500 2 tablets when required for pain.

I actually have blood tests booked in this Friday to test for a bunch of things due to fatigue. Including testing for iron deficiency, diabetes, vitamin deficiency.

I did suffer with low iron whilst I was pregnant, but was told it wasn't severely low and was given tablets.

I also did have restless legs when pregnant but very mild and it subsided as soon as I had my daughter.

[Joolsg in reply to Yorkiebarrr]

Setraline and propranolol are the culprits. Clearly your anxiety and depression need to be weighed against the severity of the RLS.All anti depressants trigger/ worsen RLS but there are a few that are safe. Wellbutrin, trazodone, lamotrigine, depakote, carbamazepine are safe alternatives. Wellbutrin isn't available in the UK though, only USA.

Anti anxiety meds that also help RLS are pregabalin and gabapentin, or diazepam and clonazepam.

However, the first thing you can do is start taking ferrous bisglycinate last thing at night, every other night to raise ferritin levels more quickly. As your levels were low during pregnancy, it will be safe to start taking iron now.

When you get results back, ask for the actual numbers. For RLS, serum ferritin needs to be above 100, preferably 250 and serum iron above 60.

The vast majority of RLS can be resolved by raising levels way above 'normal' but sadly, UK doctors aren't aware of this. The research is all in the USA where iv iron infusions of Injectafer are now given for RLS.

Several have obtained infusions in the UK, I'm one of them, and statistics show 60% will have a dramatic improvement, 20% moderate improvement but 20% will have no improvement. It didn't help me but my dopamine receptors are probably damaged from years on Ropinirole.

If your GP is prepared to read the research, there are papers on iron infusions and raising iron to relieve RLS and alternate day taking of iron to raise levels faster than every day.

I suggest you ask for a long appointment to discuss raising ferritin levels, possible alternative anti depressants/ anti anxiety meds and possibly codeine tablets in the meantime until your iron and ferritin levels are much higher. Codeine is better than co codamol because they're stronger and don't contain the paracetamol which can affect your liver.

[DicCarlson]

I'll be surprised if your iron panel is normal. Be sure to get the actual numbers. You could just start Ferrous Bisglycinate Chelate (also sold as Gentle Iron).