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Rls is so hard for me, sometimes I just want relieve

Posted , 15 users are following.

ayomi96
ayomi96

I am quite young I have so much a head of me just started an undergraduate degree of pharmcy my life should be perfect . I have a fiancé who loves me and friends and family who do. My future looks bright but it's somewhat ruined by my rls unlike others it's constant day and night . In the same spots so as you can imagine it makes me so sad. No one understands me nothing seems to be working for me now. And it's so horrible up day and night just laying in my bed with a hot water bottle between my legs for some relieve. I've been neglecting my family , friends and uni work as I just can't find any relieve. I just want to me normal it feels like I'm just living away months of my youth feeling so sad and miserable. I don't know what to do aomestimes I jjat want to end things

3 likes, 46 replies

46 Replies

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  • sharon_17397
    sharon_17397 ayomi96

    Posted

    RLS is awful and I feel for those who have it. I use to have it but am completely free of it. It was a simple fix for me. I started taking Magnesium Bisglycinate supplements. I take 5 capsules throughout the day. 200 mg each. I also had my iron levels checked and I now take iron supplements as well. And NO more RLS for me. Best of luck for you! 
    • Udon
      Udon sharon_17397

      Posted

      Hi Sharon.  I believe that magnesium, especially glycinate form, is one of the finest supplements a person can take.  Our soil supposedly is very depleted of this mineral which means our food is.  However, according to the below scientific study, magneisum may actually inhibit the release of dopamine in the striatum.  We with RLS already have a problem in that area.  I'm sure if you avoid taking it in the evening there will be no problem at all.  And this may be why some people do not get relief from magnesium.  They take too much too late at night.  See second to last line of the following unbelievably confusing paragraph:

      The effects of adenosine and magnesium ion (Mg2+) on striatal dopamine release were studied in awake rats by in vivo microdialysis. The mean striatal basal levels of dopamine release at Mg2+ free perfusate were 56.95 +/- 5.30 fmol/sample (for 20 min). By varying the Mg2+ levels in perfusate from 0 mmol/L to 1, 10 or 40 mmol/L, the dopamine release was inhibited by Mg2+ in a level-dependent manner. Perfusion with modified Ringer's solution containing zero Mg2+ and from 5 to 50 mumol/L adenosine, non-selective adenosine agonist, as well as 0.1 mumol/L 2-chloro-N6-cyclopentyladenosine (CCPA), selective adenosine A1 agonist, showed no effect on dopamine release. However, from 5 to 50 mumol/L adenosine and from 0.1 to 1 mumol/L CCPA plus Mg2+ (1 and 40 mumol/L) perfusion decreased the dopamine release. This inhibitory effect of adenosine and CCPA on striatal dopamine release was enhanced by an increase in extracellular Mg2+ levels. Levels of 50 mumol/L of 8-cyclopentyl-1,3-dimethylxanthine (CPT), a selective adenosine A1 receptor antagonist, in perfusate increased the dopamine release under conditions both with and without Mg2+. This stimulatory effect of CPT on striatal dopamine release was reduced by an increase in extracellular Mg2+ levels. As a result, CPT antagonized the inhibitory effects of adenosine and CCPA on dopamine release under conditions of the presence and absence of Mg2+. These results suggest that the inhibition of striatal dopamine release by adenosine was mediated by adenosine A1 receptor. This inhibition was intensified by Mg2+. This study also revealed that the concentrations of Mg2+, which ranged from physiological to supraphysiological, reduced the striatal dopamine release; furthermore it was found that the physiological concentration of Mg2+ potentiated the effects of adenosine agonists, but inhibited adenosine antagonist. Thus, the present study, using in vivo microdialysis preparations, suggests Mg2+ inhibits the calcium ion channels and enhances the adenosinergic function in the central nervous system.

       

  • Sashalou
    Sashalou ayomi96

    Posted

    Honey! Have you seen your Doctor? I was suicidal until I was prescribed Rotigotine neutron patches. I have also taken Ropinirole which I found less effective but there is a slow release one on the market now.

    I think some doctors are not familiar with the condition and therefore do not know what to prescribe. Google the items I have mentioned and go to your doctor with the information. Good luck - hope you can find relief soon.

    • ayomi96
      ayomi96 Sashalou

      Posted

      Thanks for the reply , I have had pramproxiale and ropinrole . The latter ropinrole worked a treat ! But after 2 months it came back so the doctor gave me pramproxiale which made me tired and angry . I am going to book an appointment and see if can get the patches thank you for your reply means a lot
    • alitom
      alitom ayomi96

      Posted

      I'm very sorry about the bad timr you're having with RLS and my heart goes out to you. It's an awaful condition and people have no idea what the sufferers go through unlessthey suffer from it themselves or are living with people who do. My husband has suffered for many many years and has tried many remedies but unfortunately nothing seems to work. Some medications work for him but short-term only then we're back to square one. I don't want to dampen your hopes with the Rotigotine patches but please be careful as some side effects can be really nasty. When my husband had to increase the dosage to 3mg patches it worked wonders for his legs but not on his mind. The side effects were scary. I'm not saying that everyone suffers in the same way and hope that this won't be so in your case but please, if you start to notice any strange changes, do go and tell your GP as soon as possible. I really hope they work well for you.

      Best wishes,

      Alitom 

    • Flangies
      Flangies alitom

      Posted

      Hello and thanks for your response. I take gabepentine for my restless legs and altho better than it was I do still sometimes suffer!! The last 4 nights for instance have been bad and around 4 Months ago I suffered for 15 nights straight! It is so debilitating and really is depressing. Hope your husband gets some relief soon
  • karl30005
    karl30005 ayomi96

    Posted

    Sorry to hear about your distress ayomi, I satrted with RLS last July and like posters have said most doctors arent familiar with RLS, Iwas lucky after 3 months of appointments I met with a doctor whose husband was a neurologist and they started me on roprinorole, whilst this had side effects it did make the symptons better, I'm on patches now and it is better. The problem with RLS is something caused augmentation, in other words when your body becomes used to the medication and its effects lessen. With some this may be years of relief, with others (like myself) its a few weeks. There is relief out there and it took me bursting into tears with the doctor for them to take action. Waiting lists for specialist neurologist is 18 months though often cancellations are given, mine was after 4 months. Try to cope Ive been off work for 7 weeks now and still at square one, what you must realise is because of the lack of sleep your outlook on life becomes very dismal, things will improve but it does take time before relief is got, the very best of luck and hound your GP for help or even ask to see another!!
    • ayomi96
      ayomi96 karl30005

      Posted

      Hey Karl , thanks for the reply. I will definitely inquire about these patches.
  • Hazel_Kennedy
    Hazel_Kennedy ayomi96

    Posted

    I have had RLS for 20 years and have found that taking 2 x 30mg dihydrocodeine about 6pm each evening has virtually cured my symptoms. Occasionally get in in the afternoon if I am bored and just get up and walk round for a while and it wears off. Don't want to take tomany tablets. 
  • robgau
    robgau ayomi96

    Posted

    I know RLS can be miserable. I've strugged with it for almost 40 years. I've taken a lot of different vitamins, minerals, supplements, etc. over the years. I've tried to avoid medications but now take 1/2 the starter dose of Requip along with some Melatonin and B12 at night. That usually works most nights as long as I don't eat too late and avoid coffee, tea, cokes and sugar. I try to avoid fried, greasy, or salty foods at night. I used to get up at night and do stretches or sometimes take 3 hot showers throughout the night to finally get to sleep.

    It's hard to eat healthy but it will make a difference. The more vegetables the better. Green leafy vegetables like spinach are very good for RLS. I think it's the iron and folic acid. If you can keep from eating after 7PM, it makes a BIG difference as well.

    When it affects me during the day, I take the equivalent of 1/2 a cup of coffee of caffeine with a full glass of water. It almost always helps during the day. I cut a 220mg tablet into 4 pieces and keep it in a pill fob in my pocket for several years now.

    Hope you find some relief. Will definitely say a prayer for you!

    • Udon
      Udon robgau

      Posted

      Hi Robgau. Just wanted to let u know that melatonin can make RLS worse. 3mg gave me restless body. Statins, meteor in even HRT can make RLS worse. Everyone who has RLS has to look at every drug and supplement they r taking. Including 5htp and Splenda.
    • robgau
      robgau Udon

      Posted

      Thanks Udon. I usually only take 1mg of melatonin. I think it works for me because I'm taking it with Requip and B12. It seems to help me get a little deeper sleep. I may try just the half dose of Requip and B12 and see if it works just as well. You mentioned Splenda. I've been suspicious that some sugar free hard candy may be causing the RLS to start sometimes during the day.
  • graham9772
    graham9772 ayomi96

    Posted

    Dear Ayomi96

    You have lots of friends and a loving fiance to help you through this. 

    My suggestion would be

    Change Doctor  yous is apparently struggling and quite likely doesn't understand.   There is a chance that a new doctor will recognise the symptoms as something other than RLS.   Does your medical system in the UK restrict your choice of doctors?

    Tell the doctor you need to see a counseller URGENTLY because you are feeling very low.  NOTE that many of the drugs you are likely to be given have serious psychological side effects.   MAKE sure your doctor knows how desparate you feel.

    Do you have anything else wrong?   I had sciatica and arthritus and my (new) doctor told me he had seen or heard of RLS being triggered by the pain from either of these.   I haven't seen much about this on any forums.

    Soon you'll be  a Pharmacist and you will meet people with RLS looking for help so here's a chance to help your self and you might learn something of value to the rest of us.  WEe need you to help US!

    Print out the posts here that are making suggestions and show them to your new doctor.

    Try some of the non-drug things you will find in this forum   Most of them aren't conflicting   For example it is no problem to try some magnesium and the bioactive form mentioned here sounds like a good starting point.  I take magnesium  but I take it with my iron and Vitamin C in the morning...   I think I'll change to taking both at night.   My doctor has told me that both iron and magnesium are things that build slowly in the body but maybe he hasn't thought abot the quick acting form mentioned by a few posts here.

    Try iron  it helped with me and there are many others.  It didn't give complete relief but it started.

    Try magnesium  There are quite a few people who have mentioned relief by taking that.

    Its quite likely that some things might help a bit by themselves but you need several together to give real relief.

    TODAY start a FODMAP diet.   It costs nothing, you get to eat lots of delicious rice cakes and peanut butter, lactose free milk, a banana a day, an orange a day and so on.   There arwe hundreds of foods you can eat on this diet but quite a few common ones that you must cut out completely for a while.    Go to the Monash web site and see what vegetables to eat.   Some people might say eat lots of green veges but (as an example) they might not be intolerant of the type of sugar that's in Broccolli whereas you might be.  So No broccolli, No Onion No Garlic etc   Go on a stritct FODMAP diet   Read all the posts here about diet.   See ""RLS and diet""   See if you can get your doctor to find a dietician with experience in FODMAP diets.  The doctor and the dietician might both know this as a diet for people with irritable bowel syndrome because that is who it was developed for.

    What city are you in in UK?   There is a clinic in London I can find the details or you can search for FODMAP London    I think its london Bridge hospital but let me know if you have trouble finding it.

    There are lots of us out here who know what you're going through ands we are sympathetic.

    Dont put too much faith in seeing a neurologist.   I paid a small fortune to one such specialist who told me that my GP was doing a good job with the drugs that weren't working and that he didn't believe in the effect of diet.   Its still worth going  because you might have something else.

    Hang in there.   We are all on your side

    Cheers

    Graham

     

    • Udon
      Udon graham9772

      Posted

      Graham, from what I have read, arthritis and sciatica can undoubtedly lead to RLS.  Picture this, people with RLS have shoddy dopamine receptors (mostly their D2 receptors) in a part of the brain called the substania niger.  Supposedly we have plenty of dopamine, maybe even more than the average bear, but the portholes (d2 receptors) through which the dopamine is "released" into the central nervous system (aka spinal column) are bad, very bad.  The receptors need iron to function properly, but people with RLS have anemic brains.  Anyways, imagine that we have a drip (rather than a stream) of dopamine traveling down our spines to the peripheral nervous system (aka arms and legs).  Let's assume that the drip is actually enough to quiet our arms and legs but then throw it one curve ball, such as problems with the spine (I call them bumps in the road) and you have all out RLS.  Another curve ball would be melatonin or anti-histamines or anti-depressants or MS or kidney failure or rheumatoid arthritis or thyroid dysfunction. 

      I read a study regarding about 100 patients with traumatic spinal cord injury.  Every single one of them had RLS.  If the injury is severe enough, such that there is a complete road block that prevents the chemical signal (dopamine) from getting to the peripheral nervous system then it seems even if you're not pre-disposed to RLS, you will get it.

      So, it seems that the vast majority of the world can take Benedryl, Tagamet or melatonin and never get RLS.  Same is true for sciatica.  The vast majority will never know from RLS.  But those of us with only a drip can't afford anything gumming up the works.

       

    • graham9772
      graham9772 Udon

      Posted

      Hi Udon

      Thats very interesting.  I give points to my doctor for being on the right track.  Are you a specialist or a GP?

      Can you please send a reference to that research  concerning spinal injuries and RLS.

    • Udon
      Udon graham9772

      Posted

      Oops, it's being moderated?  I guess you can google "spinal cord injury and rls."  It is a study published by Science Direct.

       

    • Udon
      Udon graham9772

      Posted

      No, I am not anything close to a doctor, I'm an attorney, but work for the government.  And like you, I find I have to figure out my own way in this world and not rely on doctors.  Between you, me and the four corners of my computer screen, I do not like taking iron for a multitude of reasons.  My red blood count is high (15.4), my male internist said he was jealous.  And my stores hover around 100.  Several years ago when I stopped all of the RLS unfriendly drugs I stopped needing the iron.  But as we age, myself included, our D2 receptors age as well.  Most of the population doesn't even notice it but I have noticed it.  Lots of things will trigger it now, including eating dinner late and too much.  I find myself running for the iron many nights.  I don't feel iron supplements are particularly healthy and are more of a dead end, unlike magnesium.  I took magnesium for many years and it never seemed to help my RLS.  But I took it in the evening, and maybe not enough?  I read yet another article that said magnesium actually inhibits the release of dopamine, so it is definitely not something you want to take at night.  But I would imagine that if you took large quantities of it during the day then it would have a laxative effect and it seems that for those of us with RLS it is always a good idea to keep the critters moving along and out of trouble.  smile  And like I said before, it seems that (in rats) consistently under eating will increase the number and quality of our d2 receptors.  And I guess that if you are going to undereat, then what you do eat must be nutrient dense and eaten before sundown.  I had a gi doc that once told me you want to eat between sun up and sun down, as our ancestors did, and because our gi tract has its very own special circadian rhythm and that if you follow this rhythm you will improve your gut.  So he thinks.

      Anyways, one of these days, when unemployment is down, and wages are up and the sun shines most of the time, I will do everything in my power to stop the iron, which to me is no different than any of the dopamine agonists.  Unlike what most people think, I believe that we with RLS are more alike than different.  I believe we all have anemic brains and shoddy d2 receptors - that get ever more shoddy as we age.  You may have sciatica that is triggering your RLS and I may have degenerative discs, and someone else might have lesions on their spine from MS, but at the end of the day, a very long day, the domino effect that follows these conditions or ingested substances is the same. Drip, drip, //..

       

    • Sashalou
      Sashalou Udon

      Posted

      I have googled 'spinal chord injury and rls'. Very interesting! My rls started sometime after I slipped a disc, but was just more of a nuisance than debilitating. However about 8 years ago I damaged my back pretty badly on a 'wild ride' on a boat on the sea (yep I should have known better!). After that my rls was not only involuntary movements but acute pain in my legs at the same time. I had not made a connection between the injuries and rls prior to your post. Thank you for the information.
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