BobM12 years ago

My heart goes out to you gypsy63

We all have bad periods within the disease and I get thru by upping my meds the best I can. You cannot go so long without sleep too many side effects on you and those around you and I dont mean just close family.

I didn't sleep last night and now will be over tired tonight whatever the situation with my RLS so I will over medicate to get thru.

Also are you getting the best support you can from your GP?

Kindest

Bob M

cefndaniel12 years ago

hope you have a better night tonight. I have started taking one tremadol with my ropinorole at night and it has made a huge difference, if your GP will allow this may be worth a try, you do not say where you live?

Hidden12 years ago

Morning , actually slept some last night first time in ages i got more than couple hours , thank you for the response thankfully Bob i live alone so no one to annoy with me being up all night or to take out my frustration on ,

My Dr's don't really know about RLS and therefore not on any meds have tried couple but didn't work for me or i became immune quickly to them ,

guess i just plod on day by day ,

Ropinorole was one drug i tired great worked for 5 days then nothing apart giving me upset tummy gave them a few tries but same thing happened so gave up on them of course Dr like giving out anti-depressants hmm... as you know they can agravate RLS ,

opps have i not said where i live on here lol could have sworn i had will fix that im in Lincolnshire UK .

hope both you guys slept well and have a wonderful day

sal x

Hidden12 years ago

Hiya gypsy63 are can totally relate to you as i have just had the month from hell aswell. Had rls for years but this bad peroid was kicked off cause i took fluoxitine for 3 weeks. My arms and legs and back fingers and toes aswell went mental. Im off it now but for 3 weeks i had very little sleep something li ike 20 hours. I have finally found a doctor that is actially willing tp try andhelp me with it. Unfortunatly there are alot of people that dont underdstand how seriously this can impact on someones life doctors and family friends included. At the moment i am trying to help my family understand but its hard when they think its all in my head and that i just need to relax. Im in the process at the moment of finding the best med that works for me. I really sympathise with you and your deffinatly not on your own i joined this site about a werk ago because i needed to find other people that had it aswell and i needed to educate myslef on rls as much as i could. I have already received immense support and advice on this site your in the right place try and stay strong

Hidden12 years ago

I really feel for you Sal, i think if i was you, by now i would be in the loony bin, sleep deprivation is not a good thing, which i think we have said before in one of your other blogs....

Have you tried sending an e-mail to Dr. B. on his website rlshelp.org he is the RLS specialist in the US. but people all over the world ask for his advise, he MIGHT be able to give you some help on what else you could try to take so you can get some relief. I have ask him myself several times. As long as you explain your situation so he has an idea on what you have tried and what hasnt worked... Its worth a try as he knows everything about RLS and the meds....

Irene...

Hidden12 years ago

To Gypsy. My feelings go out to you because your problem sounds so awful and one so many of us can relate to. When I was at my lowest and in total dispair, I wrote an e-mail to Dr B at rslhelp.org and told him my problem. Within 24 hours I had an answer, which changed everything for me. It was so helpful. So I agree with Elisse. It really is worth writing to get the help you need. And do it soon. Going without sleep for so long is way too hard on the system. Why has your doctor not put you on a different medication??

I switched from ropinirole to mirapex and now sleep triple the hours I slept before.

All the best!

Hidden12 years ago

Afternoon all

Having slept last night woke up feeling rather still guess the body's not use to keeping in one position for so long lol , This is a great site where one can air there're thoughts and feelings knowing that everyone's in the same boat be it some worst than others isn't the issue we all suffer the same,

I've had RLS since i was 8yrs old although have found a Dr that understand getting an appointment with him is hard work as he's either not there or fully booked and you can't pre-book an appointment only one on the day the other Dr's just gives a blank look as if to say what you on about ,

Have writen message to Dr B on rlshelp maybe i didn't put enough im not sure but only got info i already know ,

Don't know about anyone else but i find if i don't sleep i seem to be totally hyperactive the next day not sure why just can't keep still and on the go but even if i do sit to have a coffee i find my legs start and so up again,

Not sure what the meds are called i've tried but know they use for folk that have fits (can't spell right word lol) they didn't work ,

I understand what your saying Perplexed about friends and family although they see you at your worst they just don't seem to understand or appreciate what your going through and expect you to carry on normal with your day time work even when had a bad night/nights or call your symtoms funny names for their own amusement ,

Of course getting over tired makes things worst at nigth when you want to sleep just glad my neighbours don't hear the bath running at 3/4 in the morning ,

May sound an odd thing to think about but think the gas and electric companies make a fair packet out of us lol wonder if we'd get a discount lol hmm..... just a passing thought ..

hope you've all had a wonderful day

sal