I just need to vent!!!

I've just really had enough and just want to get this out..hope its ok. I've had this rls since I was about 8 years old. I'm now 54. I'm sure its stress related too wether good or bad stress. I used to get it every now and again but over the years its got worse and worse. I don't think I've had a proper full nights sleep now for about 2 years. Life hasn't been easy in general for quite a while now which I'm sure makes the rls worse and the lack of sleep just adds to the mix. I can't change much in my life at the moment so I can't see things improving much. I'm awake till all hours of the morning and usually give in about 6 am and take codeine which knocks me out for a couple of hours. Then I wake hungover and feel yuk for the day. I have a few cat naps during the day

After some internet study I've just bought some 5 htp which is supposed to help serotonin production and am trying to up my dopamine through diet. Hoping this might help my mood cos I feel totally burnt out. I'm also now taking magnesium calcium and zinc supplements. I've done this for 2 days and my tummy is really upset! Just can't win.

I'm feeling really low and miserable. It's all getting too much. But thanks for this site and I feel better for getting it all out.

32 Replies

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  • Have you had your magnesium and iron levels checked? You CAN take too much iron and get iron overload. people really need to cnsult with their doctors, even when they are thinking about an over the counter med. also, many of OTC meds can make RLS worse. 5HTP may help some with sleep, but once your RLS has kicked into a blazing attack, it certainly is not going to help RLS, in most cases. It is tryptophan, which is found in turkey, tuna, all kjnds of foods. The jury is way out on the 5 HTP, and we have had it banned, unbanned, and banned in the US. YOU say life isnt going to change an time soon. But, I am sure you have invented or read about some coping skills. RLS progresses with age, there is no cure, so keep reading, just make sure you are reading trustworthy web sites. One of the best is the treatment page on rlshelp.org Sleep deprivation can cause all kinds of other health issues. My sleep doc says, "fix the sleep, and fix then you can fix the person". :o) You say it is getting to be too much. My friendly suggestion to you is to find a neurologist who knows about RLS (ask when you make the appointment) and/orv a sleep doctor. The RLS isn't going to get better or go away,, so you have to "attack it" with some treatment now, before it gets to be a total nightmare. I am guessing with this post, that your RLS is turning ino a nightmare now. Venting is good! :o)

  • I totally agree with nightdancer, it doesnt get better, it gets worse with age.

    We all have to find a way to cope with it, medications are usually the only option, unless you have RLS mildy,

    If you sleep better, then what you have to deal with in life becomes better to handle,

    Magnesium was a no no for me, it upset my stomach too and did nothing for my RLS.

    Even with medication, stress can make the RLS act up, i dont think there are many of us who dont deal with stress in our lives

    See your doctor and take advise about what you can take, get your ferritin level checked.

    I went for 14 months without any meds. i was awake every hour through the night, i had to nap in the day just to survive, had no life, would cry through tiredness, felt as if i couldnt take it anymore... So went back to my doctor to ask for the Neupro Patch which had just been approved to use. I had tried almost everything else available but my senstivity to them made me stop them.

    Glad you found a little venting helped.

  • I know exactly how you feel! Its awful and I used to sit up at 4.00am, trying to cry to relieve the pressure of not sleeping and wondering how I was going to function all day! Getting out of bed when you can't sleep is a good idea, theres no point in thrashing around in a place where you should be sleeping. Get out of bed, go put the dishes in the washer, have some hot chocolate - I did find raiding the biscuit jar helped haha! Then go back to bed and try again.

    I only discovered there were meds three years ago - and I take requip, it takes about 20 mins to kick in and then my legs stop going - I know it doesn't work for everyone, but now you are on this site you could have a good read, go to your doctor, and try everything one by one till you find something. Good luck, at least we all know how you feel - we've got the T-shirt too!

  • Oh Dragon, story could be mine, same ages to start, same age today, same way of dealing with it, same 'hang over' same life issues. What on earth do we do????

    I just dont know............maybe a miracle cure will arrive :)

    Kindest

    Bob M

  • thankyou for your lovely words x

  • Sounds as if you need to go back to YOUR doctor Bob, maybe its time for you to try something else if you are having a bad time with what you are taking now. We all got a long time before that miracle cure arrives...

    Irene.. :)

  • Mine's stress-related too. Unlike, it seems, pretty much everyone my condition has actually improved over the years, which flies in the face of what it's supposed to do. When I was a child it affected me every day, day and night, but now it's just bad on a few nights a month, and some evenings when I try to settle to watch TV. I've never taken anything for it, but have had to find my own methods. I hope venting has helped you, and as has been suggested, maybe your GP can help?

  • Thank you all for your lovely replies.its good to have some support. I know codeine works for me as long as I have a break from it every few days so I can keep it at one pill. My doctor is happy for me to use it. He's very sympathetic but not very knowledgeable. So maybe I need to push him for a referral to a higher power! I sort of cope with the rls usually but the last couple of years have been tough life wise and it all just gets too much. I know it will pass and we all have stress . I am just a bit overwhelmed at the moment. I'm hoping the htp will give my brain a blast of serotonin so I can cope a bit better. I just feel burnt out. I'm sure you understand. I know what I need to do to make me feel better but can't be bothered if you see what I mean...black dog time.........but thanks all for being here. No one else really understands...sorry i sound really .pathetic This too shall pass

  • Maybe you are feeling depressed, it sounds a bit like you are, by the cant be bothered to go and get some medication for your RLS. You sound as if you are in a vicious circle, and once you get some proper meds, to help you sleep, then as i said before, that alone will make you feel better all round..

    Codeine is used for RLS, but its still sounds as if you need something more than that..

    We all cope with everyday life better after a good nights sleep.

    Think about going back to your doctor with info on the medications which are used for RLS...show him what is available...

  • Thanks Elisse I will think about going back to the doctor. Can anyone advise the best route to take with requesting treatment . Such as which drug to try first . Cos I'm not sure my doctor will know. I'm sure he will be understanding. I've done lots of googling but its very confusing . I can't really get my head round using the dopamine stuff like roprinole . If I eat a million avocados and bananas would this not help. I know it sounds silly that I don't know this already. Seeing as I have been suffering rls for so long. I've internet searched for years and found no real help but stuff seems to have appeared more recently. I never thought of joining a site like this before. I understand that constant stress gradually reduces dopamine and serotonin..I have also had addiction problems in the past maybe its connected. I also feel more comfortable with advice from people on here as I know I am understood.

  • Hi Dragon, Like you my RLS started when I was 8 and got really bad in my 50s. But I think it was probably the stress of my mother having a breakdown that made it unbearable and drove me to the doctor. My GP knew what I was talking about, said "Well we usually start people with pramipexole" and gave me the prescription. So there are doctors out there who do know about RLS - please don't be put off finding one. And pramipexole works for me at night but I'm thimnking of getting (maybe making) a lectern to stand at in the evenings when I can't sit still. At the moment I use the ironing board but something more elegant for the sitting room would be nice!

  • That made me chuckle.standing at a lecturn watching coronation street!!

  • Hi thedragon :-)

    You have come to the right place. We all need to have a good rant, moan,scream, shout about this horrible thing called RLS.

    You will find all here sympathetic as we all suffer the same to a greater or lesser degree. I have had RLS since 1984, after major surgery, why after surgery I don't know, there seems to be some common factors amongst us all, but we havn't niled it yet (See; What is/are the cause(es) of RLS?)

    You are obviously sounding depressed, for one , there are several here who are willing and able to listen to you and reply 24/7 (almost!)

    and second, try and see your (or another) GP, explain what your condition is, ask what meds you can have etc. The GP's job is to listen to the patient, who can explain what is wrong far better than a medical examination! Insist on being told what meds are available, then it's up the the GP to explain and proscribe them.

    Hope this helps, try and keep smiling, warm baths are a very good way of relaxing prior to sleep, especially with a liberal dose of Dead Sea Salts!

  • Thankyou all for being here...I feel a bit teary now. So good to offload .

  • Hey;... tears can be good and healing. We've all been there.

    When going to the doc, make a few notes to take with you about what you really need to say. Also if you go to the RLSF Site there is a document called RLS MEDICAL BULLETIN. It gives great information and is great for a doc to look at . You could print it out and highlight the parts that are relevant to you.

    You want relief from symptoms.

    You want sleep

    and You probably need an anti depressant... which is a little bit of a challenge with RLS medications. Sometimes they need to be increased a little to be able to manage the AD.If your doc is not familiar then provide documentation. I asked for the RLS Medical Bulletin to be put into my file.

  • Good idea. Thankyou

  • Just to add to everyone else you aren't alone although it feels like it at 3 in the morning. You aren't pathetic at all those who don't suffer have no idea what it's like. Pitilium can I also put an order in for a lecturn it would be more elegant that the radiator.

  • After a really good week, the first in ages, my partner who is also 54 and wears patches 24hours for RLS had a really bad night last night too. As jigglylegs says I cannot begin to imagine what it is like and all I could offer was a freshly squeezed pineapple juice an a big hug this morning. I really feel for you and am sending you a hug too.

  • Pineapple juice.....thats so nice of you .....

    I am so relieved to have found this site..I`ve been dealing with this crap for so long all on my own...I cant explain the relief that we all have the same stuff

    and ive just come on the big computer and found loads more pages which i couldnt see on my phone which i was using all yesterday

    I felt so low yesterday I took 2 codeine at 11 pm.. it took me some time to fall asleep but i slept till 8.30 even though it was drug induced i do feel a bit better. Talked to my partner a lot and got some crap out of my head so that helped so i went to sleep with a quiet mind for a change

    Thankyou all for yesterday x x x

  • How I wish this site had been available when I first started with this! Having a place where people actually understand helps. I have always been anti-prescription drugs but RLS changed that! I had 3 young children and a full time job, and ended up falling asleep at the wheel (fortunately without anything but severe emotional trauma). Sleep is NOT an option for anybody. I have found the Neupro patch to be the only reliable remedy. It has changed my life. Yes, it causes a lot of itch - but it's far better to itch than twitch! I am inclined to disagree with the conversations here re: antidepressant drugs. Maybe if you can find a way to SLEEP that would not be necessary. If you can't sleep, EVERYTHING is worse. I highly recommend trying the patch. Doesn't work for everybody I understand, but has given me a chance to deal with life! GOOD LUCK...

  • I'm 55 and believe I've had RLS all my life (I was a very fidgety child!) but every time I mentioned it to different GPs over the years, I was brushed off with "you're too young to have RLS" - a classic misunderstanding of the condition.

    For years, I'd been taking Solpadol (codeine + paracetomol) every night, just to get to sleep but that only gave me a couple of hours' sleep and I'd often get up in the middle of the night to take more.

    Finally, last month, my current GP heard me and gave me a formal diagnosis. Since then I've been taking dopamine tablets, and the affect has been amazing. I'm still not sleeping solidly through the night, but even when I wake up, MY LEGS ARE STILL!

    I discussed changing my diet to increase my dopamine levels, but my GP said that it would involve eating massive amounts of the right foods to attain a beneficial level. I've not looked into that, but frankly the tablets are keeping my legs still for the first time in decades so I'm happy with that.

    I hope your doctor will take the time to listen, and that you can find something as beneficial to help you

  • I'm getting very interested in this dopamine/ serotonin thing. I don't know anything much about it but it doesn't sound right to me that one can't increase dopamine through diet. If you look at a " normal" person with no problems at all who's body is working properly then they would be getting all they need through diet. I'm sure a small imbalance in amimo acids etc would have a detrimental affect. Sorry if I'm not explaining it very well but its all new to me But something I want to look into more .

  • I wonder if it's something to do with the way the body produces or processes dopamine?

    For example, I also have high cholesterol and it's only controlled my statins. My cholesterol level was in double figures as far back as my twenties, when I weighed 7 stone, was running twice daily and sticking to a low-cholesterol diet, so I know that it's a fault in my body's make-up. This is why I wonder if low dopamine levels can be something you're born with.

    I've yet to look into it, but will let you know if I find anything.

  • thanks Helygen..I see what you mean!.. From my history, maybe i have genetic low dopamine or something..it would go some way to explaining how my life has run. Its really got my mind working...need to study methinks!!

  • Glad to hear you now have medication which is keeping your legs still..

    I expect you are waking because of years of waking in the night, your body clock is out of key.

    I think your doctor is right about the food, would take an awful lot of the right food to up the dopamine. I wish it was that easy, i would be eating buckets full..!! :)

  • Thank you :)

    I also think I'm still waking regularly because that's simply what my body is used to (most frustrating!). Hopefully, now that my legs are sleeping all night, the rest of me will take the hint eventually ;)

    According to one online source, dopamine rich foods include all proteins (meat, milk products, fish, beans, nuts, soy products) as well as bananas and blueberries, which enforces my suspicion that those of us with RLS have a problem processing it, since it's available via the average healthy diet. I'm still 'researching' though, so there may be more to it

  • I understand what you mean...I think my body is so used to not going to sleep, it has quite literally forgotten how to.

  • Thanks all for all your input. I am getting a bit confused on the site because I dont know what I`ve posted in reply to what thead , blog or question!! well I am new. Maybe I`ll get a bit more used to it cos there is such a lot of cross reference. but since joining the site, finding it after all these years, I am feeling a lot better. For a long time now I have just been putting up with all the RLS crap thinking there was nothing much I can do, but I feel as though I`ve found some will to fight back!!!

    any way this is where I am today. Ive been taking the 5 htp since Friday ,..this is to help the serotonin

    along with magnesium, calcium and zinc for the rls...I`m eating dopamine helpful stuff like bananas , almonds, avocados. I am beginning to think that may be my problem as I have suffered depression on and off all my life and have had alcohol problems in the past. I still have quite an obsessive personality...can you tell??? ha ha

    Maybe rls is conected somhow...I want to look into it more.

    I`ve taken 2 codeine for the last 2 nights to knock me out and stop the rls before it starts. I do wake feeling groggy but its better than no sleep at all.

    So at the moment I am feeling much more positive than I was last weekend..(I really felt desperate and was getting scared)

    THANKYOU FOR HELPING ME THROUGH X X X X

  • I know everyone seems to want a simple pill to fix their problem but have you tried the support or compression stockings. It actually seems to work for most people. I try my best to sleep without them but If I cant stay still, I put on the stockings and usually can sleep great. I try to suggest this on other RLS forums but most people without trying give all kinds of excuses why it won't work for them, But from previous surveys, its the one treatment that seems to work for most people.

    I am male, but If it works and I don't need meds then i'm all for it.

    Give it a try, you got nothing to lose.

  • .I have suffered RLS for 30 + years after years of research and useless GP,s I am now 95% cured I take,

    Cayenne (500mg), Curcumin (500mg), Devils Claw (2000 mg), Ginger Root (550 mg),Licorice DGL, St Johns Wart (all homeopathic meds) take twice a day.

    Plus: Magnesium (500mg), Zinc (15mg) (1 hour before bed)Alternatively All of the above once a day plus pramipexole (from your GP.Sounds alot but it has given me my life back i was a chronic sufferer an did not sllep for more years than i can remember, hope this helps someone, it does work, good luck

  • I had a great Dr. that put me on requip years ago and it does help some except I also can have really bad nights. I take 1 2mg once to three times. I maintain at one, but lately really bad so three. Have you talked to your dr.?

  • Hi thisold its not a good idea to keep upping the dose of requip as it can make symptoms worse in the long run.Best to change to a different treatment

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