WITS END

[Ambler58]

Hi everyone , just had yet another night of no sleep due to RLS , my Gabapentin doesn't seem to be working very well at the moment ( 4 X 300mg a day ) for the last 12 years .Good spells of a couple of weeks of little or no problems , and then a few weeks of at least 2 nights not being able to sleep - made worse having taken Zoplicone last thing at night to sleep , so you can imagine full on Zombie mode the next day . Can never seem to find the correct amount of exercise - either too little or too much , would welcome any tips on exercise or supplements please , failing that lots of sympathy and TLC , it's a comfort knowing that your not on your own , which it doe's feel like in the early hours as I'm sure we all know .

Many Thanks Paul 🆘️

[Joolsg]

Hi Paul,I see others advised you to take the gabapentin at NIGHT only and in doses of 600mg taken 2 hours apart. Also Madlegs pointed out that anti depressants trigger/worsen RLS and you should discuss a switch to a safe alternative, like trazodone or Bupropion, with your GP.

SueJohnson also suggested full iron panel blood tests.

Did you follow up those suggestions with your GP? Raising serum ferritin above 100ųg, preferably 200ųg, resolves many cases of RLS and switching to an RLS safe anti anxiety med can also resolve many cases.

I think you should take those suggested steps before increasing the medication.

[Strike26 in reply to Joolsg]

Hi Paul, and all,

Not got good news I’m afraid but just wanted you to know you’re not alone. I never slept well from my teens onwards, now 66, and around 40 RLS arrived. Thanks to the advice on here, Gabapentin controls the extreme level, by some 80% - fantastic improvement. But sleep- worse than ever, 3 hours is my maximum. All the sleepers, herbal substances fail to work, or leave me groggy the next day, which I cannot stand. But, like myself trying Gabapentin, you should keep on asking your doc to prescribe other drugs- you might find the one that works for you (sorry, I’m sounding like a dating agency!!!). Alex

[Jumpey]

I agree with Jools. Hang on in there and you will find a way. We've all been there and are rooting for you.

[Simkin]

My gabapentin stopped working so I had to go on the opioid buprenorphine which works a treat thus far.

[Danni54]

You will always get sympathy, TLC and great advice on this Forum. I came on here desperate, in pain and not able to sleep for such a long time but now I have been given, by my Dr. , Buprenorphine which has really helped my RLS. I have multiple health problems and to get relief from RLS which was making me so depressed and the other problems worse , is a blessing. You will get there with support from people here. I started going for walks again. I used to walk my dog's for 2 - 3 hour's a day but had a cancer misdiagnosis and have 2 fractured vertebrae amongst other problems and then got RLS so all of that walking stopped and even worse, I can't have a dog !! Since the RLS calmed down, I have been going for short walks when the other pain isn't too bad and I'm building it up. Might be worth trying and start with 20 minutes and a bit more 3 day's later and so on but don't overdo it and push yourself too much ! Wishing you all the best and better times.

[Ambler58 in reply to Danni54]

Many thanks Danni54 for those kind encouraging words , I too use to go out walking with my lovely Dotty but since she's gone ( 7 months ) hardly been out of the house - unless it's in the car with my son , must get back too it - miss it so much .Thanks again Paul

My Dotty 💔😒

[Danni54 in reply to Ambler58]

What a beautiful girl. I'm so sorry. 7 month's is not long and they break your heart when they go don't they ? I have always had dog's and my husband had to take me on , many moon's ago, with my rescue dog, Bess, Irish Water Spaniel and her darling son , Gandalf! He was like a black Retriever. Since then we have had Golden Retriever's who helped to keep me sane ! My husband is a cat person so we now have 2 rescue, 10 year old cat's ! They are spoilt now having been hit but I can't take them for a walk and they don't snuggle etc. but they make me laugh now that they are settling in....after 10 month's! Would you be able to get another dog , maybe a therapy dog ? Maybe your son would help you with a dog ? Just a thought. Walking, even with the pain, is so good for our mood and physical health isn't it? I'm stubborn and not ready to give in . I drive the medic's mad because they keep saying that I'm doing too much but Munroist is right. If we do too much, we suffer, too little, we suffer so, we have to find the right amount of exercise.

Whenever you feel down and as though you are battling on your own , then post here because I asked quite a lot of question's from the amazing people on this Forum and have always had help and support. Please let us know how you get on...and maybe talk to your son about getting a 🐕 dog ! Take care.

[Ambler58 in reply to Danni54]

Thank you Danni54 , unfortunately after having 4 dogs and 2 cats over a 35 period I'm unable to get any more pets as I am on the verge of moving into rented accommodation , and landlords don't want to have animals on there property- something to do with insurance . I had a knock back a few months ago when I filled in an application form for a dog walker at my local animal rescue , they wouldn't except me because I couldn't supply names of referees. I was looking after a freinds dog but unfortunately it had to be put to sleep the other day as he cancer . Along with so many other things going on it's just one giant hurdle after another at the moment , not that unusual for me - except at the end of the day I would look at Dotty and say at least I've got you , but not now .

DOTTY BOO ❤️

[Munroist]

The normal recommendation is for moderate exercise which generally seems to be the standard 10k steps a day and not too intense. I cycle and hill walk and after very intense activity I find my legs are significantly worse at night, waking me up several times, while if I have a week off and just do 10k steps daily at a comfortable pace things get a lot better. Conversely if I do very little exercise I also get restless at night so 10k is the sweet spot. Personally I enjoy the exercise so I push myself harder at times and take the consequences.

[Ambler58 in reply to Munroist]

I've got to pull my finger out and get to it , got into a bad habit of using elements as a reason not to walk - will take your advice on board- thank you