At wits end

I have had RLS since a child but the last four years its became unbearable.

Im now on ropinrol 4mg daily my RSL starts early afternoon and as a HGV driver its torture.

I take my 4mg at 7.30 pm every nite just after my food then in half hours time im sick go very cold and fall asleep suddenly about 5-7 times over the next hour, then I spend the evening fighting the RLS standing in the room rocking genly on my feet almost in tears just wanting it to stop so I can sit down and watch tv in peace, dont get me wrong some evenings i take my 4mg and in an hour I have no RLS annd sit with my wife and enjoy the evening.

Ive been back to the doctors today and told me I have to wait until August 6th to see the doctor who diagnosed me, because the DR I seen this am has no knowlege on RLS.

There must be some sort of releif out there for me apart from ropinrol which makes me sick and feeling so unwell all the time. This is like a living hell dreading every evening of RLS or as my wife calls it river dancing. If any one has any suggestions to what will help ease the symptoms then please im willing to try any thing.

27 Replies

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  • HI,

    I would give vitamin d3 a try? I took the fist pill 1pm and my spasm's stopped, the following day I didn't take one to see if it was a fluke, I had bad spasm's, I've been taking 2000iu a day for the past 2 months and I get no spasm's at all, but after 2 month's they came back, I've done loads of research and the reason I tried vitamin d is when on holiday in Cyprus I had an amelioration of all my symptoms and when back in the UK in less than 24hours my symptoms were back, I've read the active form of vitamin d Calcitriol has a half life of upto 15hours? which makes sence? but for vitamin d to be converted to the active form in our bodies it needs magnesium, I researched the water in Cyprus and it contains: Sodium, Magnesium, Potassium and Calcium and I've been using pink himalayan salt along with vitamin d for the past week and my spasms have stopped and my neuropathic pain has eased.

    I definatley recommend giving it a try? it must be Vitamin D3 though not D2.

    All the best

    Steve

  • I am not sure if you say you have RLS, or just muscle spasm's because RLS, is not the same as having muscle spasm's...!!!!

  • i get muscle spasm with my RLS if i try keep still when having a bad attack the spasm then go up my back have been told it's all connected :(

    but then been told all sorts lol

    sal x

  • I've been diagnosed with RLS not spasms.

  • pink Himalayan salt you say is that to take as a tablet or to be put in your bath water ???. sorry if I am sounding a bit dim.

  • if you go to your home page there is a comment on the Himalayan salt

  • Thanks that answered my question. Bath it is then lol

  • lmao

  • Just so you know, most likely any hot bath is going to help, salt or not. many, many people take hot baths for relief, others rn their fet under cold water.

  • i have 3 baths a day does help for a short while just hope i don't wake the neighbours at 3 in the morning lol never tried the salt wonder if it works or dries your skin out hmm....

  • hot baths help me a lot when i have a bad attack

  • Thank you steven ill try that today.

  • Hope you work out when and how to take the meds good luck to you

    sal

  • thanks

  • Well, Ropinerole is not the only "egg in the basket" as far as RLS meds. If you are taking 4 mgs at once, I would first suggest that you split up that dose. It is going to wear off during the night, so 4 mgas all at once is a big dose. Also, look up info about augmentation when on this med or any other med in it's class( Parkinson's/dopamine agonists) Augmentation happens when you are on too high of a dose for you personally, or the med stops working as well as it did. This is bery common, and you should talk to your doctor who DOES know about RLS, and ask him about augmentation. For Requip that is the highest dose you should bev taking for RLS. Doses for Parkinson's are way higher. since you only seem toknow about Requip/ropinierole...... go to rlshelp.org and look at the treatment page. Read that info, and then go on to "Drugs and Foods to Avoid" VERY IMPORTANT section. Many prescription meds as well as over the counter meds can set your legs right off. With RLS it ias important to know what NOT to take, as well as what there is available that might work for you. You can msg me any time.

  • sorry about typos! ;o) Sleep deprivation is ugly.

  • Nightdancer, as always top post!!

    Bob M

  • I still have RLS but Neupro patches have made a big difference. Suggest you explore that route too

  • Neupro patches are in the same class of meds that Ropinerole is. It just bypasses your stomach because it is a patch. The advantage of that is hopefully less nausea, and getting medication into you at a regualr rate 24/7.

  • ropinerole was the worse drug for me, caused terrible augmentation for me, used the patch, with good results, but i finally stopped working for me, now im using Mirapexin, and doing ok with it, so you see there are other meds you can try,

  • I cant thank u all enough. X

  • Neupro patches are very good but leave scars and itch a lot !

  • Change your practice Riverdancer, I had too to get the best support. My GP didn't know about RLS but she found out for me and we eventually got a cocktail of meds that work 99% of the time.

    I use: Gabapentin, Oxycontin, Pramipexole, Solpadol, Oramorph all at various times but getting my new Dr ( I moved) to get on board was hard work!!

    Kindest

    Bob M

  • Hi Riverdancer

    I'm so sorry to hear you're going through such hell. I have RLS together with periodic limb movement disorder, and it's the latter which keeps me twitching until the early hours. I'm also on Ropinirole, 3.5mg and luckily it does seem to work very well for me - but only if I avoid salt, sugar and alcohol after 7pm every night. Should I dare to have two slices of cheese on toast after 7pm, I'm awake nearly all night with the twitching, despite the Ropinirole. I also find that it can make me sick but am told that, if you take it with food, this helps the sickness. I've discovered that a couple of small potatoes put in the microwave for around 5 mins, and eaten with a very small amount of light Philadelphia cheese does the trick. I've also heard the advice that, if you split the dose, this helps the sickness. I've also joined not only this forum but another one here: bb.rls.org/index.php. Again, there are some lovely helpful people there (like here) who will answer any questions you may have. They have different "discussion boards on all sorts of topics RLS-related. I discovered there this helpful document: rls.org/Document.Doc?&id=2112 (looks like these links aren't coming across as hyperlinks, so you may have to copy and paste), which the person who posted it initially suggested that you could take to your GP and work through with them, if they are unfamiliar with how to treat RLS. As mentioned above, there are many different medications you can try which will help. There is a whole discussion board on the bb.rls.org site for both pharmaceutical options and non-pharmaceutical options. Another thing - it is worth getting your ferritin levels checked. I'm not sure I completely understand it properly, but us RLS sufferers need to have a count of between 50-100 - apparently it can be only around 20 for a "normal" person. It is something to do with the way our bodies store iron. If you find your ferritin level is less than 50-100, you can take iron tablets with vitamin C to try and increase it. Here's another link to a doc which your GP may find helpful: mayoclinicproceedings.org/a... - all about how to manage RLS and the medications you can take for it.

    I wish you good luck and really hope you find some answers.

    Angie

  • .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

  • newscientist.com/article/dn...

    There is with out a doubt truth in this. If your cause is Dopamine related like mine.

    Has anyone else found this?

    P.S sorry to any offended.

  • No one should have to go thru that. I take Mirapex. Tell your doctor to give it to you.... same meds that they use for Parkinson's Disease. I CALL IT A MIRACLE... Hope this helps you!!

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