Struggling: Evening all.... I had... - Restless Legs Syn...

Restless Legs Syndrome
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Struggling

Sparky81
Sparky81

Evening all....

I had an accident around 8 years ago now and initially had more problems with my lower back than my legs. Within around 6 months my back was starting to recover but very slowly and I was sent to have an epidural steroid injection. Very soon after this I was made aware this injection had failed to work but problems were starting with my legs.

I have been to Salford royal hospital, Macclesfield general hospital and now I'm awaiting my next. Everyone I have seen have dismissed the problems with my legs and pointed to further treatment of the lower back... Until 12 months ago I moved doctors and I was started to be listened to. As you can see I've been given plenty of medications, I've tried numerous other things to help but nothing is working.

Finally I've been diagnosed with restless leg syndrome but this has gone from mild symptoms to very aggressive symptoms very quickly.

So I ask ...

Has this been unchallenged for too long and it's taken hold ?

Anyone know of anything that's improved their symptoms ?

Anything else I can put to my doctor that hasn't yet been done ?

Thank you for your time in reading this much appreciated x

14 Replies
oldestnewest

Sorry for all your tale of woe.

Firdt we need to know what medications you have been on. Many are triggers for rls. It will help us to know.

Have you had your ferritin checked- what number was it?

Did you have to wean off opioids after any operation?

Get back to us and someone will reply further- I'm just about to go to sleep.

Cheers.

Sparky81
Sparky81
in reply to Madlegs1

I had a steroid epidural in my lower back to start with and since I've had gabapentin, quinine, ropinirole and now currently pramipexole. I've had blood tests and they have come back with no other underlying health condition that could be contributing to the Rls. It's taken 6 years for a doctor to conclude that the symptoms are that of restless e but that's still not helping. I still work although I've dropped to 20hours and I eat healthy and as active as possible. On average I get 4 hours sleep a night.

Thankyou

Madlegs1
Madlegs1
in reply to Sparky81

How long on the Prami and what dose is it at now?

Madlegs1
Madlegs1
in reply to Madlegs1

You need to find out your ferritin level as a number. Don't be fobbed off by " oh , you're ok"

Sparky81
Sparky81
in reply to Madlegs1

I've been on the pramipexole for only 6 weeks now. The dose is 0.088mg and I have just 1at night around 60-90mins before I go to bed. I'm not noticing a difference as yet and I've been prescribed this for 2 months. I have a referral back to neurology but that's not until end of March 2019.

Madlegs1
Madlegs1
in reply to Sparky81

So- not augmentation.

You could googl all your medications as " medication and rls" and see what comes up.

Good luck.

Hidden
Hidden
in reply to Sparky81

In Madlegs1 absence (and I really hope you are getting some good quality sleep Madlegs!) I think what will immediately spring to most people's mind is augmentation. Can you pin down when the symptoms went from mild to aggressive? If you were on ropinirole or pramipexole at the time it is likely that you augmented. See rls-uk.org/augmentation-reb... as a starting point for explaining this if it is a concept that you have not yet come across it.

I have not luckily (yet) experienced augmentation as I am fairly new to medication for RLS as it took years to get a diagnosis, but from the huge amount I have learnt on this forum, you will need to be weaned off the pramipexole slowly and with the support of opiates.

Do you think this might be a possibility? If so, others on here will be able to advise you better than I can on what to do about it.

If not a possibility, are you on any other medications for other conditions (eg anti-depressants) or taking non-prescribed medications on a regular basis (eg sleep aids, allergy meds)? Many of these can aggravate RLS.

I have no doubt you will get some helpful advice here, and I wish you all the best, you have had a rotten time.

Sparky81
Sparky81
in reply to Hidden

None of the medication I've had seem to have aggravated this, it just seems to have started and very quickly progressed. I was mainly on naproxen and gabapentin for my back but was taken off them before being reintroduced to gabapentin when I've complained about my legs. I feel that my concerns with my legs were brushed aside really and feel it could possibly be to late to maintain or reduce the symptoms. I am taking pizotifen that's prescribed for migraines I used to get regular and again only since my accident. This I actually working though and again my symptoms were already well present before I was prescribed this.

Thank you

Hidden
Hidden
in reply to Sparky81

I completely emphasise with having concerns brushed aside - my doctors kept telling me there was nothing wrong me with and insisting that I took anti depressants. Which I now know aggravated my condition. I also took a lot of antihistamines and cold remedies because I felt like I was going down with the flu all the time - again, these would have aggravated my legs. Since I was diagnosed in February this year my symptoms have got worse but I have to admit, though, that in part I feel this is because knowing what is wrong has made me focus on the RLS/PLMS symptoms directly rather than the peripheral symptoms (headaches etc). It was a huge relief to get a diagnosis but, as I still haven't found a treatment that works and have had to take so much time off work, I have become massively stressed which of course makes me even more focused on my RLS/PLMS and disrupts my sleep even more.

Maybe you haven't found the right treatment yet? it's really hard that it takes time, but I am trying to accept that it is trial and error, everyone is different, and that one day (my consultant keeps telling me) I will get relief.

So please, please don't think it is too late and the time has passed for you to get it under control. It's a real shame you have such a long time until your next appointment, any chance you think you could get your doctor to refer you to a sleep clinic in the interim? They may well know more than neurology.

Are you still on gabapentin as well as the prami? If not, did the gaba help you sleep before and could it be worth asking to add that back in? A combination of meds usually works better than a single med for RLS (from what I have read on this forum).

This sounds a lot like my story. I too injured my lumbar area. I had RLS before I knew what is was. I just knew something was very wrong.

Only recently has my RLS been the worse ever. Part of that reason I believe is bc I contacted a viral infection that left me exhausted and non active. For me, I have to be up doing things or the RLS is sure to come.

I have learned much from this site and a couple of “home” tricks that have helped.

Warm bath with massaging, I bought a mini trampoline for soft bouncing.

I see a Neurologist next month for possible (I hope), medication help.

Good luck.

Hidden
Hidden

From what you said, I just rather wonder if the epidural did something that triggered the RLS somehow? My personal experience is that RLS got horrible when my lower back got messed up years ago. As I progressed with chiropractic treatments, the RLS did get noticeably better, but it took several weeks to notice improvement. I've seen posts from others that imply that back trouble could be connected.

I still have relatively mild RLS, and as I get older, it does seem to get somewhat worse, though diet changes are helping a lot- no sugar, no starchy stuff that converts to sugars. I hope you can nail down your triggers! Have you tried magnesium yet?

Sparky81
Sparky81
in reply to Hidden

I haven't tried magnesium, I'm at a bit of a loss of where to go next as very little advice about alternatives has been given to me.

Could you tell me in what form I can take magnesium and is it something you can get from somewhere like Holland and Barrett ?

Thanks for your reply, my GP has said it's quite possible that the Rls started as a result of a failed epidural but won't be drawn to whether it's a definite answer. I never had any health issues prior to my accident, but lots since.

Madlegs1
Madlegs1
in reply to Sparky81

Any magnesium will do. Citrate is probably best and HnB is grand.

There seems to be a conflict of advice on best forms of mg to take- used to be that oxide was least bioavailable ( so very good as a laxative) but others have said differently.

The best way to take mg is dermally- on the skin. As a bath - Epsom salts 2or3 cups in hot bath, soak for 20mins. Or make up solution of half and half water and epsom salts by volume. Rub on legs. Wash off after 15 mins if it stings too much. Won't kill you!😆

Cheers.

Hidden
Hidden
in reply to Sparky81

Like Madlegs 1 said, the spray version of magnesium seems to work for a lot of people. Try health food stores locally, but it's certainly on amazon.com. The stuff can sting on your freshly shaved legs; some just rub it into their feet. Epsom salts may be a better option if the spray stings too much. Definitely magnesium citrate or malate as an oral supplement. Other common triggers include all kinds of medications including over-the-counter stuff; others can be more specific on that topic, though I believe cholesterol meds (statins) and SSRI type antidepressants can cause RLS. And there's an endless list of dietary triggers, sugar and caffeine topping that list. I've found that the better I am at avoiding carbs- starchy stuff and flour products- the better I do at night. And there are apparently some food additives that can be triggers as well; perhaps some of the other forum members can add which those would be. I'm so sorry you've had so much trouble since the accident. Logically, you'd think it's all related. If you get desperate and can afford it, it might be worth trying chiropractic. Just a thought.

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