Does anyone feel knackered all the time?

[exhaustedfox]

I have been so tired for such a long time. I was referred to a sleep specialist who diagnosed RLS. I need to be sharp for my job as an auditor but I really struggle. But just lately my hips have been burning and the fluttering and numbness in my arm & hand are driving me mad. Is there an end to all this?

[Tpebop]

Yep, I do too. I think tiredness is down to two things. The RLS can directly disrupt normal sleep patterns, leading to tiredness. Unfortunately the treatments on offer can have unpleasant side effects; one is extreme tiredness. I believe the Neupro patches I'm on at present are making me so tired during the day. Now my sleep doctor is trying different things. The end result will probably be more than one med. We're simply caught between the devil and the deep blue sea: the RLS keeps us awake; the treatment for it keeps us awake. Hopefully the Mirapexin I've just taken will kick in soon and I can get back to the sleep test I'm meant to be on! I'm not sure if there is an end to it but reading what other sufferers post on this site gives some hope. All the best to you mate, Tpebop.

[Hidden]

I agree, either the RLS keeps us awake or the medications give us horrible side effects, which result in tiredness during the day, or makes us sleepy.

I do know some of us seem to be able to take meds. and have no side effects.

I wish i was one of those people.

[BobM]

Gosh yes!!!!

[Country]

RLS seems to be a complex complaint that affects no two people in the same way. As a result there is no one solution that helps everyone. However I have found Ropinirole an hour before bed time has helped me sleep so soundly that I need less sleep than I have needed for years and wake feeling totally refreshed.

Late afternoons and evenings are still a problem if sitting down. I try not to get into situations where it is not possible to stand. In meetings and concerts I sit at the back and even explain to those nearby in advance that I might need to stand up at some stage. Eating Bananas may be helping. Spraying Magnesium Oil on affected parts does give some relief in the evenings. Obviously I also try to fit in a walk during the evening as well. I guess having a job that involves sitting at a desk does make things more difficult. My Doctor has alsp prescribed Paracetamol in the afternoon and in the evening to relieve the pain. I guess it a case of mix and match to find out what suits you. Good Luck.

[Hidden]

To exhaustedfox, are you on any kind of medication?.... When I was first diagnosed with RLS many years ago, the doctor prescribed levadopa (which may have a diff.name in the UK). It worked amazingly well for me with no side-effects. The 'problem' with levadopa is that it does stop working after some years. For me it was 10-11 years. I loved that drug because it 'kicked in' within 10-15min. It really is worth trying!

Later I took ropinirole until hip surgeries when I had to take too much of it and it backfired on me. Now mirapex does the trick and I use "leg calm oil" or "magnesium oil" on my legs before I go to bed. For some reason these oils

(either one) have helped greatly in staying asleep. Instead of 1-2 hours of sleep at a time I now get 5-7 hours.---To tell the truth, I'm not sure anymore if those oils really make all the difference or is it the brain that tells me that they do!! Whatever it is, I don't care, as long as it works. I feel like a different person since getting more sleep and after taking mirapex.

I hope you do get some help soon!

( look up levadopa and find a diff. name for it )

[exhaustedfox in reply to Hidden]

I have no problem sleeping. I could sleep all night & all day but still wake up knackered. I take ropinirole, walk the dog twice a day and am generally on my feet when I can be. I guess the job doesn't help. But sitting down is so painful. I have been given codeine by the sleep doctor but try not to take it too often because of its addictive nature. I have had a sleep test where it was discovered my brain activity interrupts my sleep on average 8 times an hour. It's my mental sharpness (or lack of it) which concerns me.

[Hidden in reply to exhaustedfox]

Hi, when you had the sleep test done, did they say you kicked in your sleep.? If you are feeling knackered and are sleeping well. then that is usually put down to PLMD, Periodic Limb Movement Disorder...you kick around but it doesnt wake you up like RLS...So you think you have slept well, but the PLMD is not allowing you to.

[nightdancer in reply to exhaustedfox]

You can sleep and sleep, but if you are not reaching the right stages of REM sleep enough times a night, you are going to feel "knackered". (love that word, by the way) If you are not reaching the RIGHT kind of sleep, then it will do you no good at all. Technically, RLS is supposed to be diganosed by clinical criteria by what happens when you are awake. ; PLMD and other sleep disorers like sleep apnea are diagnosed with a sleep study while you are asleep. Your doctor is probably lumping RLS and PLMD altogether, an it does not work that way.

[RLSer]

I want to be supportive but as of now, but there is no cure so there is no end.

My suggestion would be to work w/ your doctor as to exercises and medications that work for you to combat it. Start medications conservatively because if they work, you will need larger doses later. Keep discussing this w/ others w/ rls, like this forum, to educate yourself about RLS.

You are not alone.

[Hidden]

hi Exhaustedfox,

well knackered is my middle name..

jean

[exhaustedfox in reply to Hidden]

I no longer feel quite so alone.

[lego in reply to exhaustedfox]

i know what u mean .what an awful rls is .was beginning to think i was alone

[exhaustedfox in reply to lego]

no, but I think it's a poorly understood condition. Unfortunately it's one of those conditions people think means "lazy". My partner left me because of it and branded me lazy.

[Hidden in reply to exhaustedfox]

hi, mine left, "its all in your head", well hello most of it is !!, hence the dopamine drugs!!, but now i have a lovely partner, who will pace the floor with me, or leave me in peace, whatever i want

jean

[nightdancer in reply to exhaustedfox]

A "Doctor" who lost her license to practice in several states had an article up on her web site called, "Forget the Media Hype about RLS." She said , and I quote," if you would get your lazy asses out of your recliners and quit watching TV ads for RLS meds, you would not 'think' you have RLS. This article has since been removed from her web site after a letter writing campaign by some RLSer's I know, since she could not take all of the negative feedback. However, it still exists on other web sites.

[exhaustedfox in reply to nightdancer]

If you can't stand the heat, stay out of the kitchen Would she like electrodes stuck to her head to prove what she already knows? I have the proof to show my deep sleep is interrupted all night long?

[Tpebop]

I've been doing a bit of research whilst waiting for the Mirapexine to kick in (pun only slightly intended!), based on my own experiences, posts featured above and what I've just been looking up on t'internet. The reason exhaustedfox (and more than likely myself) is knackered is because s/he has periodic limb movement disorder (PLMD). Unlike RLS it happens continuously throughout the night WITHOUT YOU KNOWING ABOUT IT (although sleeping partners most certainly do). Like other sleeping disorders it causes major sleep deprivation, hence being knackered, As exhaustedfox knows it can be treated in similar ways to RLS. I must be more assertive with my GP and sleep doc and get this RLS and probably PLMD sorted out. We aren't fricking lazy, sleeplessnes and being knackered all the time is hell!

[Hidden]

Myself and Nightdancer did comment on having PLMD. which both of us thought was happening to exhaustedfox.

Sorry you seem to have PLMD too. Some are unfortunate to suffer with RLS and PLMD.

PLMD will show up in a sleep study not like RLS which doesnt have a test to show you have it.

[exhaustedfox in reply to Hidden]

I had the sleep test and the diagnosis came back as rls. I don't care what the label says. I just want my life back. It's not much fun nodding off in meetings and being put under the microscope at work because one's mental sharpness has abandoned ship.

[Darcy]

I feel tired and worn out as well, but that's the side effects of the medication, I suppose the body does build up a tolerance eventually, but until then, I just get on with it. I lucky I am retired, so if i do feel tired, I can Cat Nap!

[exhaustedfox in reply to Darcy]

Listen to your body. I wish I could cat nap, but I guess in time I will have the leisure to do so. Keep smiling!

[jumpylegs in reply to Darcy]

I also am retired, 3 years now, and previous to that I was working full time trying to cope with rls 24/7 in arms and legs, and only getting 2 or 3 hours sleep per night. Being retired means no stress of watching the clock in the middle of the night and we all know that stress doesn't help rls. With a tweek in medication I am now getting about 6 or 7 hours sleep and find that my best sleep time is after 2am. Happily not having to get up for work makes it all so much easier.

[Darcy in reply to jumpylegs]

Hi jumpylegs

glad you are managing your sleep now. I know from personal experience that a little 'tweak' of the meds can do the trick, also, a lot of people don't realise the sleep adjustment that has to be made on retirement, again I speak from personal experience.

[Elmstreet]

I feel for you! I spent years of my married life sleeping on the floor so my partner could at least get a good nights sleep and both of us weren't exhausted. If you look up RLS on Wikipedia it shows the sleep patterns of an RLS patient - they are pathetic! Requip helps me, but also I can't do late nights and stress - I still do but I know the punishment is coming! Requip helps me hugely, but I am watching my iron levels too.

[Hidden]

I also am exhausted all the time, even before the diagnosis I slept badly, about 5 hours a night , now only 2 or 3. I have fallen asleep in the bath twice now. My Doctor put me on Premipexole, maybe that is making me worse. Suddenly today I am having bad dizzy spells and my movements have slowed, its taken me ages to type this! I hope you get some relief soon, it must be so hard trying to cope with work too. I never thought I would say I am glad I don't work since an accident 3 years ago, but I am afraid I could not possibly work now. it seems I get a bit worse every day.

[Mishmashed]

Me too foxy - I feel as dumb as a box of hair most of the time

[christie524]

feel same as you ,am goin to try eating low oxalate food as recimended by Dr Clare Morrison in Daily Mail says she cured herself of restless legs also Fibromyalgia,worth a try.

[KellyKellySP]

I'm also exhausted all the time!! I completely understand what your saying. I fear what my mental Status will be like the older I get due to my lack of sleep. I'm taking gabapentin 1200 MG at night and still tired. It was just raised from 800 to 1200. I hope it helps!! What med are u on?

[Hidden]

Yep, totally understand what your saying! It’s exhausting going through life exhausted all the time!

One of the things I am going to do today is talk to a pharmacist about when I should take all medicines (including vitamins). It’s easiest right now just to take all my medicines at once, but deep down I know I shouldn’t do that because one has arousing effects, one needs to be taken alone on an empty stomach, one needs to be taken with water, one with vitamin c, etc. It’s exhausting just thinking about it all! It’s also exhausting feeling guilty that you are not following the correct protocol.

I am hoping that this will help.