Good morning all

FIRST AND FOREMOST THANK YOU ALL for your support and things have eased a little due to your advice on here and had 2 and a half hours sleep last night,Cut out coffee etc etc and altered meds along with codiene phosphate and feel better in myself. Doctor rang me Friday morning after consultation with senior doctor and she said they have been looking over my latest records and blood test results and get this: have discovered that they have found that my kidneys are not functioning as they should be and may have chronic kidney disease ? and have to go for scans and test etc etc and this my be an underlying factor ???????? sorry good people but i,m asking for info off you again is there any link [ LUCKY TO HAVE PEOPLE WHO UNDERSTAND RLS AND CAUSES ] Thanks again all NICK x

28 Replies

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  • Hi Nick, good to hear from you and glad things are a bit better

    Yes kidney disease is a well known cause of Secondary restless legs so it may be that you are now getting to the route cause of your symptoms.

    Let us know how you go on

    Take care

    Pipps x

  • your support as been a god send thanks again i,m sure you can tell that i think things are getting better slowly but onward and its mostly down to this website and you good people

  • Great news to have some news- and at least you have got a positive reaction for your efforts.

    Hopefully you will now get a good outcome to all your troubles this past while.

    Really happy for you- it's been a long troubled road- you should be able to see an end to it all now.

    All the very best.

  • Thank you your support as been great as with all of you on here

  • Hi Nick, really happy to hear things are on the up for you, i know it took a while and you never thought it would happen. As Pipps has said yes kidney disease is known as Secondary RLS. I found this link for you, it might be helpful for you. kidneyabc.com/ckd-symptoms/...

  • Elisse thanks for link just printed it off interesting maybe they have found a cause of my RLS sounds wrong that a illness could make another one better lol thanks again for all your help you have all been a god send to me

  • Nick,

    So glad you managed 2 hours sleep- even that small amount can make the world seem a better place. As all have said above, kidney disease is a common factor in secondary RLS so now doctors have that info, I really hope they can sort out relief for the RLS and get help with your kidneys. You have been really strong and you will get help and relief. Take care,

    Jools

    ( p.s feeling almost human myself as just slept from 9-12, first time I've slept more than 1.5 hrs in one go for ages)

  • Jools thats me at the moment no more than 1.5 hrs in one go. grrrrr.

  • It's horrible, isn't it? Let's just hope things take a turn for the better soon...

    X

  • Hi Joolsg and Elisse, I am dismayed to read of how badly you are both sleeping. Are you awake with rls symptoms or just a sort of related insomnia? Do you go back to sleep again after the 1.5 hour wake up or do you just lie awake for a while? Do you mind my asking what meds you are on?

    This is a major problem for me. I keep meaning to start a thread on the subject - the difficulty of being awake and alert even when symptoms are more or less under control. I find that I almost enjoy being awake so long as I don't have the jumpy legs but the next day ... it's just not possible to live a normal life like that. I am currently using cannabis baked into a cookie and find it very effective for getting me to sleep and keeping me asleep but I don't really want to take it all the time (apart from the little issue of its being illegal). I am concerned that it builds up in the system and I fear it will cause panic attacks and anxiety or other unwanted side effects.

    Actually, I think I will start a thread now.

  • hi Involuntary dancer,

    I am now on oxycontin 10mg twice a day ( I was on ropinirole but developed severe augmentation and went through withdrawal in August).I used tramadol during withdrawal but it seemed to stop working shortly after. I then went on gabapentin from August - Feb '17 which helped for a short while but then seemed to stop. I've been on oxycontin for 3 weeks and am absolutely distraught that I may have to stop as for the last 2 weeks I've been getting severe anxiety/panic attacks. ( the side effects do mention panic attacks as a side effect) I never, ever thought I'd say it but they are even worse?? than the RLS. The only time I've ever had a panic attack in my life before was when using cannabis to help me through ropinirole withdrawal. If I stop the oxycontin I'm not sure what I will be able to take for the RLS. I've sent an email to Dr Buchfuhrer to see if he can suggest anything and I have an appointment with Prof Ray Choudhuri at Kings in 2 weeks.

    The oxycontin most definitely dampens down the RLS sensations but I still wake with a jerk/spasm every hour. I'm then awake for up to an hour doing breathing exercises and stretching, and then fall back to sleep for another hour. It's like water torture. Sometimes feel like turning up at A&E and asking them to knock me out for 12 hours!

    I know what you mean about the cannabis but someone on this site told me the panic attack on the cannabis could have been because the THC content was too high but as it's illegal here in the UK it's impossible to find/buy a strain that's low in THC. I can just imagine the conversation on a dodgy street corner...

    What meds are you on and are you managing to get longer periods of sleep?

    take care,

    Jools

  • Hi Jools,

    Thanks so much for getting back to me - and so fully. I have read many of your sensible and measured posts. I think we have been on a similar journey as I went through the d/a withdrawal last May/June. Your current regime sounds unsatisfactory - I really feel for you as have had the exact sensation you describe of jerking awake, although happily not at present. Can also relate to your comments about A & E - when I was withdrawing from d/a my husband considered taking me there and asking them to put me in a voluntary coma he was so worried about me getting no sleep.

    I was prescribed pregabalin (Lyrica) which is an A2D ligand like gabapentin. I did not find it made much impact on my rls symptoms and did not like the 'druggy' feeling during the following day so I stopped it last Autumn.

    I also took Oxycontin for quite a few months - it was the only thing to make any impact on my post d/a rls until I got my iron levels up. I had to take 30 mg per day to quiet the legs. I have to say I loved the Oxycontin but hate the idea of being on anything that is so resistant to being discontinued. I also found that I was ridiculously wakeful at night time while I was on it. Eventually I reintroduced Lyrica to try to combat the wakefulness. It worked for a while and then it became less effective even for inducing sleep and still the 'druggy' feeling the following day. Also I hated the idea of taking a prescription drug solely to deal with a side effect of another prescription drug.

    I was very lucky in that as my ferritin levels rose, my symptoms abated appreciably. I am also off work at present but intending to start again (late in the day as I am entering my 50s) in October, so I am determined to try everything to get the optimal regime for my legs before then. I read elsewhere that Kratom was good for rls so ordered some and found it very effective (albeit sadly illegal here - I get it in small brown paper parcels from Holland and feel very daring!)

    So I weaned myself off Oxycontin and Lyrica and now rely largely on Kratom though I do also have a Relaxis pad which helps when symptoms are not severe. BUT I still have major problems with lying awake and alert (I have now started a thread so apologies as I am repeating myself).

    I have experienced those panic attacks you describe - I was never prone to anything like that previously but when I was coming off oxycontin I got them something awful. I am also nervous about getting them if I allow cannabis to build up in my system.

    I am so sorry for being so long-winded - will finish up in a sec. Because of the cannabis difficulty you describe (not knowing about the strain and high thc), I have bought my own seeds (doubly daring on top of the kratom and having to get my unfortunate teenagers to source cannabis for me) and am going to try growing some but still would prefer to have at least one other option to alternate cannabis with.

    Have you tried pure cbd oil for the panic attacks. It is actually legal here (Ireland) - not sure about UK - and is supposed to be particularly effective for panic attacks and nervousness? I used a high percentage oil when I was coming off Oxycontin for the second time recently and I think it helped quite a bit - but it's hard to be certain what is working and what isn't.

    I really wish you all the best in your journey with Oxycontin and generally - it is so scary when you feel your list of options growing thinner but keep the faith - I believe that there is a regime out there for every rls sufferer. Unfortunately it can take time and persistence to find it. I love having this forum (and one other I am on) as it gives me comfort and courage. I do not believe I would have tried some of the options but for the encouragement of others and I would definitely know a lot less about my condition.

    Rachel

  • Involuntarydancer I hadn't realised that you're in Ireland for some reason I thought that you was in the States. Interesting comment thanks for telling us your story

    Pipps x

  • thank you Pippin :-)

  • nightdancer is the one in the States.

  • Jools having panic attacks is not good and can be scary. I am sorry the oxy seems to be doing that to you. I hope either Dr. B or the Professor at Kings has an answer for you. x

  • Thanks Elisse,

    I will stay hopeful. Thanks for the the kind thoughts. It means a lot, hope you manage to get some rest soon.

    Take care,

    Jools

  • My problem is not that the meds do not work for me, but that i am extremely sensitive to them all, and i think i have tried them all over the years. So, if i take enough of whatever med i am using at the time, i sleep all night (sounds good doesnt it to those who cant sleep) BUT, i suffer with really bad side effects the next day, which stay with me all day. Either i am really dizzy which is not good feeling that all day, or i am drowsy, or i get a mixture of both. I have taken any of the meds for a time for my body to adjust, but it doesnt. I know, that some people never have side effects get better. So, i try to take as little of whatever med i am trying at the time so i get some sleep which is better than none. But its exhausting as we know having sleep deprivation night after night. At the moment its one tramadol then later in the evening its a tiny bit of pramipexole. I have tried different low doses of combinations, taking them at different times of day or evening. I can when i start a med get a few days of good nights and great days. then its all down hill. :( I am always mostly able to give advice and help for others when they are having trouble with their meds. But cant sort my self out, and i have enough knowledge on RLS and the meds.

  • That last paragraph proves what a special person that makes you.your words and support have seen me come through the dark tunnel hope we can do the same for you, now i,m wishing you relief if anyone deserves it it,s you regards nick

  • Thanks you for your kinds words. but i am not any more special than the next person really i'm not. As i am retired i can nap anytime during the day when i need to, so that makes a big difference. Well thats if my stupid legs let me nap. :P This forum and other groups i belong to is where i pay forward what i have gained in experience and knowledge. If it helps others then its all good. :)

  • Wow; Elisse, I am starting to realize how comparatively fortunate I am. Nick is absolutely right - it takes a very special person to share as generously as you do when your own situation is so difficult. I am really blown away thinking how hard it must be for you and also joolsg who has comparable difficulties. I am in bed now having taken my Kratom and cookie fervently wishing for a good night for you and all who have cause to be on this forum.

  • As i have said to Nick, i am really not special, just some one who passes on my knowledge about RLS and hope that it helps others. I hope you got some sleep last night, and wasnt laying awake with insomnia. :)

  • Thank you. I had a wonderful night and felt really normal today which is amazing for me. If one could only know that even one day in every 10 would be that good ...

  • I am so so glad your nightmare is nearing its end Nick. I haven't commented before but have followed your posts and willed you to succeed. Good luck for the future.x

  • Met some old college friends this weekend. One had a medical marijuana cigarette that we all passed around. It was extremely potent - 2 hits was all it took to make me extremely stoned. A fun evening - but more importantly best night's sleep I've had in months! I believe medical marijuana is available as an oil with or without the THC component. It might be a help for insomnia and RLS if it is available legally.

  • I am glad you had a fun night and also found a correlation between mmj and sleep. This entirely corroborates my experience. As I have frequently posted, cannabis - particularly as an edible baked into a cookie - is the only thing that works reliably to counteract the insomnia element of my rls. However, it is the THC component that is effective - pure CBD oil does little or nothing for my insomnia, although I believe it is helpful for anxiety. It is optimal to obtain a strain of cannabis that has THC and CBD as my understanding is that the CBD can sort of tamp down the more psychotic effects of the THC but you do need the THC.

  • Thanks for the info. MM is actually legal here (NY, USA) but it is hard to get a Rx for it.

  • healthline.com/health-slide...

    Hi Raffs,

    I bumped into an old acquaintance today and ended up talking about RLS. She had kidney problems and RLS and mentioned a link to potassium. She followed a low potassium diet to alleviate symptoms and it helped. Just thought I'd let you know in case you want to try reducing high potassium foods to see if it helps you. The link above lists the main culprits which are high in potassium and which you should avoid- mainly milk, bananas, potatoes, whole grains and tomatoes.

    Obviously, mention it to your doctor but maybe see if it helps a little to avoid those foods for a while. Not sure if the link above will work, but fingers crossed.

    take care,

    Jools

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