Is Anyone There

[sudokufan]

Hi All. Can I just check - is this society still active? I paid for membership recently, had an acknowledgement and some cards, but when I thought I'd emailed the society I got no reply. I'm struggling much more with RLS now, though I've had it for about 60 years, and take 2 mg Ropinirole at night, which gets me a few hours sleep but evenings are much worse than 6 months ago. Seeing my GP tomorrow but any support from this society would be so gratefully received. (I'm so glad doctor's listen about it now, however, for most of my life it was just shrugged off.)

[Kaarina Administrator]

Hi sudokufan,

From what you are saying, you have paid your membership fee to RLS-UK and have received information from them ie a few past newsletters etc . Is that correct ? The RLS-UK website is rls-uk.org and RLS-UK is active. This is the contacts page website address, should you wish to email RLS-UK rls-uk.org/contact

This is the HealthUnlocked RLS-UK forum where you can write a post or read other postings members have posted. There is a link on the RLS-UK website to this community.

Madlegs has suggested in amongst his banter that it may be a good idea to read up about augmentation before you see your GP tomorrow. This is a helpful suggestion and here is a link that you may find of interest: sleepreviewmag.com/2015/02/...

I hope this helps.

[sudokufan in reply to Kaarina]

Thanks Kaarina. I think I understand some of what you mean, but since sending my money I haven't heard anything from RLS-UK other than receiving a few business cards to advertise the organisation. I'll try your contact address above. Thank you so much. I'll try to read up more on augmentation - I did read what's on the RLS-UK website about it but it somehow didn't register that it might apply to my problem. I am furious about the "Madlegs" character above, who thinks it's a joke to pretend he or she is some kind of fraudster? But you can't help that.

[Kaarina Administrator in reply to sudokufan]

Hi again sudokufan,

I have decided to delete Madlegs reply to you. Please do get in touch with me again, should you have any queries about your membership of RLS-UK or use the contact website address above. Thank you so much for joining. You can always private message me on this community by using the icon that looks like two speech bubbles. I hope your GP appointment goes ok for you tomorrow. Look after yourself, all good wishes to you.

[KenBR in reply to Kaarina]

I don't think Madlegs meant any harm, in the least. I read the comment and was not at all put off by it. Also, for what it's worth,

Madlegs has given all of us great information and support.

I say all of the above in the spirit of good will

[martino in reply to Kaarina]

What a shame I haven’t seen Madlegs reply. I almost always enjoy reading them!

[sweetiepye in reply to Kaarina]

That was rather heavy handed. This kind of response from admin. causes the fear of posting that exists on site. Not to mention the invaluable information Madlegs shares which benefits so many. Pam

[nightdancer in reply to sweetiepye]

I do nor know of any reason why someone should be "afraid" to post on here. For one thing, it is totally anonymous. But, I did not see the original comment that was deleted, so I cannot speak to that.

[sweetiepye in reply to nightdancer]

I was commenting on the action of the administrator as it seemed ambiguous to me. A number of people have mentioned being afraid to post because of fear of rejection. They seem to have no problem with replies. Unless there is something blatant stated I don't see why anything needs to be deleted.

[Allyp69]

So sorry you have suffered with RLS for over 60 years. 50 years for me but in the UK doctors didn't take much interest and I had to manage the best I could. As everyone on medication seems to need more and more I am relieved that I didn't take anything. I hope you get support from here as there are a lot of people struggling. But for me, medication was not the answer. I take magnesium and folic acid, Valerian if I can't sleep, wear copper bracelets, and avoid social situations where I can't walk about if necessary.

[Hidden in reply to Allyp69]

I so envy you that you can continue to manage your RLS without medication. I did manage for decades before it became so severe that I was unable to sleep, night after night, for a long time. If that had continued any longer, I'm sure I would have become seriously ill, or had an accident.

It seems once it's got to the point that you're compelled to take medication then it's unlikely you'll ever manage without them again.

I'm lucky, (at the moment), since I only take gabapentin and this controls my RLS. I would be taking it for neuropathy anyway and originally started it for that reason. I am managing on a relatively low does and suffer little side effects. I don't have to avoid anything.

I wish I'd known a decade ago about the various non medical measures to relieve RLS so will never know if I could have managed on these alone. I ended up seeing a neurologist and being prescribed a dopamine agonist without any warnings. This was wonderful at first but after 6 - 7 years turned quite nasty. I took me ages to realise how nasty since there was a lot of other issues happening for me. However, it would have been good to avoid augmentation.

So I hope you can continue to avoid medications, that's the better option. However, I would say, if it got to the point that your RLS is significantly affecting your quality of life then informed use of medication can be a great help.

[Allyp69 in reply to Hidden]

Thanks ...glad you are getting helpful replies 🙂

[Hidden]

Hello, I hope you've sorted out the problem with RLS-UK now and that your GP appointment goes, or has gone well.

I don't subscribe to RLS -UK myself. (Sorry RLS -UK), but use this community regularly and have found it an excellent source of information and helpful advice. I've found out more about my RLS since joining this community over the past year than I learned from any doctor over many years previously. There is a profound scarcity of RLS medical experts, I'm afraid.

There are regular contributors to the community that are a source of information and expertise. Sometimes there is some banter and humour from them. It's good to have a bit of humour, but it doesn't always come across too well with text only and no tone of voice or visible smile.

So don't be put off by this, contributors are well intentioned.

[nightdancer in reply to Hidden]

I agree. Sometimes an intended attempt at humor can be taken the wrong way with the written word. We cannot hear voice inflections, etc. But, madlegs has always been a good contributor here, and a friend. We are all sleep deprived, so things can be taken out of context, or not understood sometimes.

[cedesigns749]

Good day to you,

Started with Ropinirole 1912, at 2 x 1 mg x 2 times per day, later 2014 stock shortage brought the logical 2 mm x twice a day. Especially this time of year I take first dose +- 1600 and second 2130 - 2200 Swear by them.

Miss you dosage and will be reminded for the rest of the night.

Early this year hospitalised for arterial bypass in legs, refused my regular dosage so did not sleep for 56 hours, which convinced the experts that there was definitely benefit to be had.

Was asked to try Proximal some time ago, gave me hallucinations, so quickly reverted.

Again it is surprising that after so long with RLS that your doctor has not increased the dosage, or tried another method. Best of luck with the future.