Restless legs. Struggling a lot.

[Hayley20202]

I am 24 . I have fibromyalgia and restless legs. I have been prescribed ropinirole on 1mg for 2 weeks now. And i am still tossing and turning at night and can’t sleep. Waking up during night the checking the time. I am about to cry my eyes out now. I can’t cope

[Hidden]

Hi Hayley,

I'm sorry that you're suffering so much. I have a list of things I do to help. Would you like them?

[Hayley20202 in reply to Hidden]

Yes pleases x

[Hidden in reply to Hayley20202]

Hi, hon! Ok, I will save this post so I know to come back to it tomorrow. Off to bed now (I hope). My husband described last night like he was someone sleeping next to a typewriter. I hope tonight's not the same way.

[Hayley20202 in reply to Hidden]

Oh no. I can’t sleep I’m so exhausted but my body won’t stop moving I can’t find a comfortable place to sleep. X

[Hidden in reply to Hayley20202]

Try taking a hot shower or bath to calm the muscles. If you have epsom salts, you can put some in the bath.

I really hope that helps for tonight. Be back tomorrow.

[ctgafford in reply to Hidden]

Good advice. When all else fails I jump in my hot tub for 20-30 minutes and that does the trick.

[Hidden in reply to ctgafford]

You have a hot tub??!! Lucky you! I wish I had one. I thought I had discovered heaven when I went to my neighbor pool's hottub several years ago when augmening. I would go there every day if it weren't so expensive. I do have a jet sprayer on my shower head that is the closest I can get to the hottub experience. I also have a stand alone bathtub on the way.

[Hayley20202 in reply to Hidden]

Unfortunately I only have a a shower.

[Hidden in reply to Hayley20202]

Us shower people need to stick together, then!✊

[ctgafford in reply to Hidden]

Haha. I thought it was a frivolous buy several years ago when we bought it. Over the last year since I developed RLS I am glad we did it.

[Hidden in reply to ctgafford]

I'd say so!!!😀

[Jimbo77]

I’m really sorry Hayley. Luckily you’ll find a lot of people on this site going through exactly what you are going through. It’s comforting just knowing that you aren’t alone. You may want to discuss combination therapy with your doctor. Depending what you’ve already tried, maybe adding Gabapentin in combination with the ropinirole. I’m in the middle of trying some combination medications now and am not sleeping much either trying to dial in doses and such. Hang in there, we are all in this together.

[involuntarydancer]

Did you find any improvement with ropinerole? It's unusual (though not unknown) for there to be no improvement in rls symptoms when that drug is first started. Many people find that it is almost miraculously effective for a while. It's a high risk drug and if it is not helping your symptoms it might be advisable to discontinue it. Even if it does help, it is worth acquainting yourself with the longterm adverse impact of it and other drugs in the same family - collectively called dopamine agonists.

[Hayley20202 in reply to involuntarydancer]

My doctor started me on 0.25mg for 2 days then then 0.50mg for 2 days then then 1mg for 4 days

Which helped but now I’m on 1mg it isn’t helping it making me more sleepy

[Hidden]

Hi Hayley, sorry to hear you're struggling.

As involuntarydancer says, it unusual for a dopamine agonist (DA) which is what ropinirole is, to not work. They usually do at the first dose.

In which case, I always think it's worth checking if you really do have RLS, it's not unusual for it to be misdiagnosed.

You can check this yourself by comparing your symptoms to the RLS diagnostic Criteria.

Here's a link to them.

irlssg.org/diagnostic-criteria

I also agree that if the ropinirole is not working, because of the longer term risks associated with any DA, it might be best to stop taking it.

Assuming you do have RLS, there are quite a few things which can affect it before considering any medication.

"Idiopathic" RLS is an inherited condition, which doesn't always appear until something triggers it. It's worth considering then, if there's anything in your situation that's doing that. I note that you have fibromyalgia and if you take any medication for this, it may be making your RLS worse. For example, often amitriptyline is prescribed for fibromyalgi and this is a tricyclic antidepressant. SRRI antidepressants are also sometimes prescribed for fibromyalgia. Both these types of antidepressant can make RLS worse.

If you're taking either, you would be better off without them.

Pregnacy in women can often trigger RLS, sometimes during pregnacny, but sometimes afterwards.

There is also quite a long list of other medicines which RLS sufferers should avoid because they can make RLS worse. This includes some over the counter nmedicines like cough medicine or anti-allergy medicines.

Alcohol, caffeine and refined sugar can trigger symptoms.

There are quite a few non-pharamacological methods you could try for RLS, as well as medicines or even instead of them.

Doggymon knows a few of these. Your doctor may not know.

A lack of iron is strongly associated with RLS. However, this is not iron deficiency anaemia, it's Brain Iron Deficiency (BID), a lack of iron in the brain which can exist even if there is no anaemia.

This can be indicated by a blood test for "ferritin" which is usually carried out for anybody diagnosed with RLS. Unfortunately most doctors think that if the ferritin levels is "normal" (i.e. anything above 15ug/L) they think it's OK. Fot someone with RLS it is not OK. 50% of RLS sufferers can benefit from a ferritin level of at least 100ug/L If your is below 100ug/L then taking an oral iron supplement can help raise it.

You could also have a blood tests for magnesium, vitamin B12 and vitamin D and taking supplements in these can relieve RLS symptoms if you have a deficiency in any of these. If you have no deficiency, then expect no relief.

Some people have success with various diets, e.g. low carbohydrate, low oxalate, gluten free or lactose free. Whether any of these will help is a matter of trial and error.

Unfortunately, although some might disagree with me, these non-pharamcological methods may either relieve symptoms at the time, but not prevent them and/or don't work immediately. E.g. it may take months to raise your ferritin.

You may wish then to still consider taking as RLS medication alongside the above.

As stated above, I suggest you stop taking ropinirole. However, this must be done carefully. It depends aon what dose you've been taking and how long you've been taking it. If you've been taking it more than a week then you may have alreadyv developed some dependency, in which case you may need to reduce it slowly, not just stop suddenly.

Aa Jimbo77 suggests it might be a good idea to ask your doctor to prescribe gabapentin instead of ropinirole. Gabapentin is one of two "alpha 2 delta ligands" which can treat RLS. Although all RLS medicines have side effects, gabapentin does not have the same risk of complications that DAs have.

Gabapentin is especially good at aiding sleep and anxiety and can be used to treat fibromyalgia. It is used for chronic nerve pain and epilepsy.

You have to be aware than unlike the DAs, gabapentin does not work immediately it may take 3 - 4 weeks. Yoi have to keep taking it then for at least 4 weeks. In addition, although the minimum effective dose is at least 900mg, you cannot start on this dose. The starting dose is 300mg and this can be increased by 100mg per day or 300mg per 3 days.

It can be taken ONCE a day, 2 - 3 hours before bedtime.

It's main side effects, at first, are drowsiness, dizziness and stumbling when walking, but these can wear off.

Here's a link to some more information about RLS treatment generally

uptodate.com/contents/treat...

It's possible that your doctor, despite being an NHS doctor is not aware of the national guidelines for the managment of RLS. In which case if you have diffciulty in getting a pescription for gabapentin, then you can refer the doctor to this guidelines. Your NHS doctor can NOT ignore these. They are issued by the UK National Institute for Health and Care Excellence. (NICE)

Here s a link to the guidelines.

cks.nice.org.uk/restless-le...

Note the section called "What drugs should I consider to treat restless legs syndrome?"

I hope this helps

[Hayley20202]

Oh wow. Thank you. I haven’t been told of the long term side effects form taking my medication.

[involuntarydancer]

It is tough to experience conditions like this at such a young age and anything that interferes with sleep on a sustained basis is like a form of torture. You certainly need to get to the bottom of it and find a suitable treatment.

As Manerva says, there is a chance that what you are experiencing is not RLS as that condition usually responds to ropinerole straight away. Most sufferers describe the effects of ropinerole as nearly miraculous when the first take it.

In your shoes I would definitely discontinue ropinerole asap and most certainly I would not increase the dose further. It is a serious medication and should not be taken lightly. The higher the dose the greater the risks.

It is worth considering the diagnostic criteria in the link provided by Manerva. If you post details of your symptoms on here you'll get a lot of feedback.

One of the issues with RLS is that medical practitioners tend not to be all that familiar with the condition and sufferers benefiit greatly by informing themselves as fully as possible about the condition and the treatments available. Manerva has usefully outlined a number of alternative treatments. and you will find plenty of additional suggestions and recommendations on here.

[Hidden]

Good day, Hayley! How'd you do last night? Did my suggestion of a bath/shower help? I hope so!

Here's my list. Hopefully you can find something here:

-knee high compression stockings. The tightness these give are what sometimes calms my leg movements. Since I have movements in my right arm as well, sleeve compressions come in handy as well. These need to be handwashed so they can maintain their tightness.

-heated massage device

-massaging magnesium oil onto your legs, arms, etc. This can be itchy, which is a sign of the mg being absorbed. This can also dry out the skin.

-if you have a bathtub, a soak in Epsom salts is nice and calming. Since this is just another form of mg it can be itchy. I've read that 12 minutes is the recommended max soak time because of this.

-there is something called Relaxing Leg Cream by Magnilife that feels nice and calming on the legs. This can be ordered from Amazon.

-I have tried a freeze gel in the past, but, while helpful to the legs, this made it hard to sleep due to freezing the rest of my body.

-if you have a jet sprayer on your showerhead, pounding that up against ever inch of the legs feels so good!! I got this idea from going to my nearby pool's hottub a few years back and absolutely loving what it did for my legs!!

-I have tried kinesio tape ( helps with bloodflow), but unfortunately to limited help.

-magnesium tablets

-foot bath with bubbles. Mixed successes here. While it helps some nights, the vibrations are enough to trigger an attack other nights.

-good old-fashioned HARD hand massage.

-massage ball with rubber spikes

-"pumping" the legs with a stretch band

-try the exercises halfway down this site healthline.com/health/restl...

-my latest thing has been to take a hot shower right before bed, which I've been having lots of success with.

I'm also part of a gym and do their cardio and strength classes. One of the things learned at a conference for RLS was that any exercise you can do to build up the muscles (strength exercises) is helpful due to the muscle mass that is built. More muscle mass, more dopamine can be stored.

[Hayley20202 in reply to Hidden]

Oh wow. Last night I had a good night I slept all night no movement at all. I don’t understand why some night the tablet don’t work. X

[Hidden in reply to Hayley20202]

That's wonderful!!!👏

Yeah, who knows why that happens. Just when I think I'm on a record stretch, BAM! Bad night! So unfair!

[Hayley20202 in reply to Hidden]

Thank you. I hope I have a good night again. I’m exhausted today I’m over doing it at hone my mum

Keep making me do the garden lifting heavy thing

[Trikkinoy]

I would highly ask for something different. There is a VERY high chance you will start augmenting at some point. The doctor may encourage you to increase the dose, but that is just going to make it harder to get off. If you start augmenting it will be pure HELL. Your RLS will be 10 X worse. I have been off the requip (DA) for about 5 weeks now, but the 6 months before this was hell. I tried sleeping in the bathtub every night and had RLS ALL day and started getting it in my upper body too. I would not move to another DA either because the same thing will happen. I use to take warm Epson salt and Lavender baths. I would rub Icy Hot on my legs every night. Take Calm (Magnesium) its a powder you put in your water. Also Iron and Vitamin C. Have you had your ferritin levels checked? If you are under 100 and some say 200 this can contribute to RLS. I am currently on Gabapentin and a opioid and it has changed my life. I can actually sleep pretty good most nights.

[Midnight-Blue]

I also have RLS (Among other problems) so I know how you feel. Maddening, isn’t it? But there are other ways to help relieve the sensations. (With/without medication.)

To start with unless you like being miserable in your bed while you are experiencing RLS get out of your bed and start WALKING! Walk around your bedroom, hallway, anywhere in your house. If that doesn’t work add some leg stretches. Personally I sweep my kitchen floors, living room (I have both dog and cat.), while standing balance my checkbook, .....it may take a while but eventually I am able to go back and sleep. Be creative yourself & see what works for you. I also have the added bonus of being exhausted so I am able to sleep soundly.

Good luck.

[Hayley20202 in reply to Midnight-Blue]

I can’t as I share a bedroom with my sister so I am going to struggle

[Hidden]

It's great that you're getting lots of advice on dealing with your symptoms on a day to day basis.

However as involuntarydancer and myself are saying, it's not entirely clear that you have RLS. In that case, you may have some other condition.

It's also only fair to emphasise that that taking any drug especially one's like ropinirole which cause dependency and have a high risk of complication when they're not working or aren't even appropriate may have a major impact on the quality of your life.

It's your choice, but if you were to describe your symptoms we may be able to confirm you actually do have RLS or not.

Are you still taking the ropinirole?

[Hayley20202 in reply to Hidden]

Yeah as I can’t get a doctor appointment for a call.

some days the tablet works some says it don’t.

Last night again I was restless again. Even during the day I can’t keep still I have to keep moving my legs especially

[Hidden in reply to Hayley20202]

I'm so sorry to hear that you're struggling.

I'm afraid I can't really make out what's happening with you without further information.

[Hayley20202 in reply to Hidden]

What sort of information

[Hidden in reply to Hayley20202]

Can you describe your symptoms?

What do they feel like?

What makes them worse, what makes them better?

What are you doing when they happen?

When do they happen?

Are they worse at some times and better at other times, what times.

Are you still taking ropinirole?

How long have you been taking it?

Are you taking any medicines for your fibromyalgia. If so what?

Are you taking any other medicines at all for anything, whether prescribed or not?

Do you regularly drink alcohol, how much?

Is there anything different you do on days when symptoms are worse than on days when they're better.

Are you using any recreational substances or have you recently stopped using them?

Do you have any other health conditions, if so, what?

Your answers can help indicate whether you have RLS or not and also what might be affecting it.

[Hayley20202 in reply to Hidden]

Right okay.

It feels like a strong achy feeling in my legs. That I need to keep moving and stretching them.

I don’t know. I think me being on my feet too long during the day don’t help me.

during the day I can’t keep still I have to keep moving and stretching my legs all day.

Yes I am stilll taking the R yes. Been taking it for 3 weeks now

I am not taking and meds for my fibromyalgia

And not taking nothing else

I don’t drink alcohol at all.

And I hate CFS and rayhnaurds

Arthritis

[Hidden in reply to Hayley20202]

Sorry, the answers you're giving still don't appear to indicate you have RLS with any certainty.

Although some people do feel a deep ache with their RLS it's not the most common description of the sensation accompanying RLS. There are many otber things an ache could be.

.

What brings on symptoms for most people is relaxing, sitting or lying You haven't said that. I suppose having to keep moving might imply that, but there are other reasons for having to move.

Being on your feet too long doesn't sound like RLS.

You don't say when the symptoms are at their worst, it seems to be anytime.

If you look at the diagnostic criteria for RLS, you will see that what you describe does not clearly meet all the criteria.

irlssg.org/diagnostic-criteria

In addition

You don't appear to be taking anything that might trigger RLS. You haven't stopped taking anything which RLS might be a withdrawal effect.

You have got any of the health condition which commonly cause RLS or RLS like symptoms.

The ropinirole isn't working,

My guess is because of all the above, you don't have RLS.

Your symptoms may be possibly related to circulation problems in your legs. Some people experience RLS symptoms dje to circulation problems, but that's usually venous insufficiency. In which case, compression stockings may help.

Your problem may be something associated with the Raynauds condition you have.

You also mentioned fibromyalgia. There is an association between this and RLS symptoms if you do have RLS. If this were the case, IF, then ropinirole is not appropriate.

As both myself and involuntarydancer previously said, it is really inadvisable to continue taking ropinirole if it's not working. Even more so if you don't have RLS anyway.

I'm not entirely sure, but after 3 weeks it's possible you may have developed a dependency on it. Certainly the longer you take it, the more likely that is. That will make it difficult to withdraw from it.

You may feel it is a lifeline at the moment as you say, sometimes it works. Usually it either works or it doesn't. So it's not a lifelibe and is potentially more harm than benefit.

This is only a suggestion, but I suggest you halve the dose and if after a week you don't notice any great difference, then stop it.

Ultimately even it turns out and becomes clear you really do have RLS, before you agree to taking any medication specifically for RLS you need to find out more about up to date treatments. Dopamine agonists like ropinirole are not the only medicines and they're not the preferred ones because of the high risk of complications associated with them. It appears your doctor is ignorant of this.

It would be a good idea to stop the ropinirole overall.

You will need another consultation with your doctor. I don't know whether you actually saw the doctor who prescribed the ropinirole and particularly if he/she did a physical examination. It sounds as if that would be helpful to get a clearer diagnosis

I'm afraid that's the best I can offer.

[1kma]

Sorry you are having such a hard time. The best and quickest way to calm your legs is MAGNESIUM.

Brands that have worked best for me us

*natural calm drink powder Or *natural calm lotion.

THC indica flower or edible is the second best. Even better then magnesium if you can tolerate it.

Remember Sugar, Yeast, gluten, alcohol and food chemicals usually will usually make your legs feel worse.

Keep a food journal. Eat lots of iron , vitamin c, vitamin D and b12.

I tried medication for my legs once and never used them again. I found the remedies above have worked best.