Help

[billjack2]

My name is Liz and need help from others suffering from this horrible condition

[Kaarina Administrator]

If you can give us some more information we are happy to try to help you.

[Madlegs1]

As Kaarina says--

What medications are you on, dose, for how long.?

Have you other illnesses? Medication for them?

Have you a recent blood analysis? Especially iron panel?

Have you read back over the last month's worth of posts and answers on this forum? Does anything strike a chord with your own experience?

Looking forward to hearing from you.

[Jumpey]

Happy to help if you let us have some more info .x

[jezr45]

I've suffered for years from the same issue, not helped with injuries to upper and lower spine. I've found through trial and error that a heavy/weighted blanket or duvet plus amitriptyline works wonders. Speak to your doctor regarding changing your medication and how to safely ome off your existing. Check the replies in the forum as well. Lots of us have found similar/different ways of coping with RLS.

[billjack2 in reply to jezr45]

Thank-you jezr45 have tried weighted blanket and doesn't really help,hopefully as I get over my knee op it will go back to normal where the ripenrole worked wonders my other leg is still OK and the drugs still working .Hope we all find a solution one day

[marsha2306 in reply to jezr45]

Isn’t amitriptyline contraindicated for RLS?

[Joolsg in reply to marsha2306]

Yes

[Joolsg in reply to jezr45]

Amitriptyline worsens RLS for 99% of RLS patients so should be avoided. Same with other antidepressants.

[dahon]

I am on Ropinerole and it helps but there is a danger of augmentation. Looking at the various posts on this forum, Gabapentin seems a better choice of medication as less likely to suffer from augmentation but your iron level should be check first as low iron can cause RLS. I hope you find the answers you need on this site.

[billjack2 in reply to dahon]

Thank you for that😗

[Elffindoe]

Hi, here's a quick summary of the managment of RLS which comprises of 4 things

1) Iron therapy. This is because the main cause of RLS is iron deficiency.

2) Aggravating factors : The identification and if possible, the elimination of things which may be making RLS worse.

3) Medications

4) Self help measures.

You need to consult a doctor. Most will miss 1) and 2) and won't mention 4)

Bear in mind when you do this that most doctors are quite ignorant about how to manage RLS.

1) Iron therapy ; the recommedations are that if all other blood tests are normal then if your FERRITIN level is

a) below 75, start taking an oral iron supploment. No need for a prescription. Over the counter supplments are quite cheap.

b) between 76 and 100, seek an IV iron infusion. This could be quite expensive, but up to 60% of people receiving an infusion have no need for medications.

2) Aggravating factors ; avoiding these can help improve RLS signifcantly in some cases.

Common everyday triggers for RLS are alcohol, sugar, nicotine, caffein and other stimlants.

The two main aggravating factors are

a) Other medications : This includes most antidepressants, e.g. amitriptyline PLUS many others.

b) Diet, inflammation and gut health.

You can read more about these in other posts or in the pinned posts on this site.

Possibly useful supplements include magnesium, vitamin B12/folate, vitamin D, probiotics or a strong anti-oxidant e.g, selenium or celery juice.

3) Medications

If all other measures fail then medications are an option.

The first medications now recommended for RLS are either pregabalin or gabapentin.

Dopamine agonists are no longer recommended as the first treatment, because of the high risk of augmentation and the risk of Impulse Control Disorder. These include pramipexole, ropinirole and rotigotine.

Whoever prescribed you ropinirole should have warned you of the dangers of ropinirole.

You may br able to delay the onset of augmentation for some time by -

a) Taking only the lowest dose that works.

b) If the drug starts to fail, do not increase the dose, but consider switching to another medicine.

c) Never increase the dose above 2mg in any event

d) Monitoring yourself for the signs of augmentation i.e.

- - symptoms start getting worse

- - symptoms start gettinjg earlier in the day

- - symptoms spread from the legs to other parts of the body

- - symptoms starting more quickly

4) Self management

This depends on your individual needs and unique situation and may include things such as

For everybody

- - Making sure you take your medicine correctly

- - Watching for signs of augmentation

- - Avoiding aggravating factors

- - Keeping yourelf updated on medical developments.

Other things might include

- - Strategies for dealing with breakthrough symptoms (e.g weighted blankets).

- - Stress managment strategies if RLS is causing distress.

- - Sleep management strategies if sleep is a problem.

NOTE these latter 3 are not mentioned in medical recommendations for RLS because if the medication is being effective, then they shouldn't be necessary.

However, if they are needed then this suggests treatment is NOT being effective and a treatment review should be considered.

Here's a link to the latest recommendations

mayoclinicproceedings.org/a...