Yikes........so good to see you.....I am over the moon that you are back...we have lost so many of our favourite members recently.....so good on you for not giving up on us!!
It sounds like you have had a really horrible time..I wish there was something I could say to help.good luck whenyou go to see your doc I hope you get the help you need x x x. Stay strong
Hi Yikes, good to see you back hun..... You sound like you have been through the mill lately, so sorry you have been having such a hard time. And i for one, enjoyed your posts and i missed them.. Wish i knew how to help you... But come here anytime you like and vent away....
Have you tried laying with your legs elevated about hip level? That helped my restless legs for years but of course, in the night, I would then get pins and needles: or my legs would fall onto my husband <rolls eyes>. Narcotics won't help long term. Other problems develop with regular usage but I can understand your reasoning. When I had bad panic attacks I would have taken heroin if I had thought it would 'cure' me so that I could face the World. My very good GP prescribed medication for irritable bowel syndrome to stop the intense 24 hour nausea as well as betablockas to aid the anxiety. Fortunately! :-).
Which over the counter medications do you have access to? Maybe building up a working relationship with a pharmacist at a chemist/drug store to discuss the merits of the various combinations? Some can be taken 'over the limit' for short periods of time and a pharmacist can give advice. Also this condition is linked to low potassium levels - I found that eating 2 bananas daily every day eased symptoms and after 5days that awful feeling in the night had gone.
How long will your chemotherapy treatment continue for? Some conditions can be made worse/eased when this is taking place. RA = rheumatoid arthritis?
My RLS was helped hugely by taking magnesium phosphate which is readily available. (health food shop, supermarket). If you've not tried it's worth it. I often took it with a cocodamol with the last does of the day. And now i've stopped taking it there's no return of RLS - mine was not a long-term case as many on here but a nasty bout after a back op as in past years I've only had intermittent RLS. This was a nasty round but the impact of Mag Phos was instant. Good Luck Yikes.
My RLS has been so much better ( I even regularly get some sleep) since I have been taking ferrous sulphate tablets. I hope to have a blood test next week to see what level I am at now from 8 weeks ago when I had a reading of 6
Best thing I ever did and i wouldn't have been aware of the importance of this without reading it on the RLS blog
Good luck on your test. A 6 is really low. So, 8 weeks may not have gotten your levels up too much higher, as it usually takes a long time to get your ferritin up even a few points. Of course, it all depends, but on the avg, it takes a few months to get that number up depending on how your own body stores iron. Here's hoping! And, I hope it does help you. Weird how some people respond to iron treatment, and some do not. I had iron infusions done in the US, and got my ferritin way up there, without overloading, and my RLS did not seem to care one bit. So, good luck!
Thankyou for your good wishes. I was unable to deal with any of the other meds prescribed, so I am so glad i had some success with this. It's not perfect but a hundred times better than before. I had all the other stuff checked as well (magnesium, B12 etc) and all seems to be ok with them.
The only thing i cannot understand about the whole thing is (please don't laugh) it works better if i sleep with my head at the bottom of the bed and feet at the top. I'm not a believer in Feng Shui either lol
What works for some is useless for others Heigh Ho!
How any of you guys who suffer SO badly with RLS get through life without out throwing a 'fit'
every day of the week, I don't know !!!
I think you're all amazing !!!!
When I lived in the US it was a joke in our house that my husband would call out to my son to " hide the AK 47" cos I was making such a fuss when I couldn't sleep with the RLS but that was how mad & upset I would get !!!!!!!!!!
I have just been talking to my daughter on Skype & she's sending me more tablets to help !
Sad that you can not get some additional help in finding a
sleep solution... I am on board with you 100%.
You do what you've gotta to get that sleep.
It's so different than feeding an addiction.
Too bad it doesn't get the respect.
Its a matter of survival i guess, Finding what will work, even for a little while, beside the meds, which sometimes dont work, gets us all through each day and night. I am sure most of us, throw a fit at times. Getting mad at it is a good coping method. Altho down days do happen.
Some have more than just RLS to cope with, so it makes it even hard to cope then i think
I have noticed since joining this forum that a lot of the members have other medical problems as well as RLS. At my Drs appoint. this week I mentioned this to him and also that fact that some people tell me that having their legs elevated helps their RLS, I asked him how come this makes it worse for me? He said that people that are helped by having their legs elevated are not truly suffering from classic RLS where as mine is "classic RLS" which is not helped by this. There are so many different types of RLS and reasons for RLS, if you are suffering from other illnesses magnessium and iron tablets will help the condition, you must persist with these meds for a few months, and high doses. If you have kidney related illnesses RLS will last as long as you have the illness. If you have classic RLS it's a matter of finding what suits you. A lot of my information comes from my Dr. who attends conferences all round the world concerning RLS. I hope this information helps some of the members.
Iron doesnt help all of us, ive had iron pills, before, more times than i can recall, but my iron levels never improve, allways low ferritin when im tested,
I have a few other health problems also, and magnessium doesnt help me, my RLS is Primary, runs in the family, and ive had it since i was 16-17 years old, plus i have it 24/7,
There are two "types" of RLS, one is Primary RLS, that is the inherited type. Then there is Secondary RLS, thats when people have a underlying condition, taking iron most probably helps with secondary RLS, their underlying condition is low Ferritin Level, which can when taking iron pills can help with RLS. Diabetics can develope RLS, Pregnant women can develope RLS. So lots of reason why people can have RLS. But i only know of two types of RLS. Lots of different levels of RLS, from mild to severe.
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I agree with this, ive allways been aware of 2 types, but was a bit unsure if i should say so, my RLS is Primary, and yes on the levels also, some of us get it mildly some get it 24/7
I have always thought that I have the inherited RLS because my mother and her sister suffered quite badly. Both my sisters have it also and we tend to walk the floor. I have had RLS intermittently for about 40 yrs or so, it only getting critical and screamingly horrible, affecting my arms also during the last 5 years. Therefore I cannot equate the reasoning as since I have been taking ferrous sulphate I am much improved, not perfect I might add, but definitely improved
i did say, iron does not help all, so therefore it will help a few, thats one of the nasty things about this illness, no two people are the same, maybe one of the reasons that there isnt a cure for us yet.
Yikes, I am new on this forum and so I do not know about what hurt your feelings. But let me tell you, There is no one that understands throwing a fit more than I do. I have been there and done that, but I have put up with this for so long that I just give up on the fits these days. You certainly do have more to deal with than I do, but one fit I do feel like throwing more than anything is the stupidity of the name that is given this disease. RLS??? What? Forget the Restless legs....it is in my whole body day and night. And it is not restlessness, it is a horrible sensation that will not stop many times even when moving around. I find it impossible to describe really. And you name the remedies, I have tried them all. Hydrocodone will help somewhat, but it is addictive. I had one doctor who would not give it to me. He didn't have a clue as to how to treat my condition. I am now on the Neupro patch and Horizant together. Alone they do not work. Together they are working enough for me to get some sleep, but I have to take a sleeping pill most nights. And sometimes even a hydrocodone. I still feel it slightly in my body (arms and hands along with legs as well), and I am sure augmentation will set in one of these days. I seriously do not know what I will do then. I literally was not getting more than and hours sleep a day before using these latest meds. This disease controls my life. I cannot commit to anything because my lack of sleep keeps me forgetful, cranky, unreliable.
Chatline I know exactly how you feel, the fear that one day nothing will work haunts me every night. I get it in my arms also when I try to withdraw from the fentanyl patches, and it is worse than the sensation in my legs. Ellise and Tallula, you are right, there are 2 types of RLS. I worded it incorrectly, the primary RLS affects people differently making it seem like they are different types. When I asked about "raising my legs" that was when my Dr told me that true RLS suffers would not benefit from this because you need to have the blood circulating down to your feet.
OOOOHHHH...so your doctor is saying that raising your legs
will do nothing for RLS...??? We are just trying to hear you
correctly... I am so surprised what comes out of doctor's mouths.
I am a bit confused by your doctors statement on needing the blood circulating down to your feet. As far as i know blood circulation hasnt any thing to do with RLS. RLS, is neurological,
?? RLS is neurological, it has nothing to do with circulation , dont know where your doctors coming from here ??
I found GREAT relief by sleeping with feet above my head, i.e. on the headboard. Or on top of 3 double blankets folded under my side of the mattress. Or as stated above, laying on the bed with legs hung over (a bit like carpal tunnel syndrome relief) until I got pins and needles in all of the positions. The GP who says it is 'not' RLS needs to suffer him/her self <rant>. When I was owned by a dog who liked 3 walks a day and the further the better, there was no rhyme nor reason whether I had RLS at night - or not. The only thing I have found is to keep an eye on my diet i.e. eating bananas = upping potassium levels.
RLS is felt in the arms and hands by many, many people. That is why we strongly suggested Restless Limb Disease for a new name, but the US foundation is going with WED, Willis Ekbom Disease. That is a WORSE name, IMHO. how long does it take to explain that one? See my blog on it. LOL Restless Legs may not be the right name, but WED is not either, especially when it is only being used by SOME orgs. in the US and Canada, but not the rest of the world, Chatline. Probably 80% of us get it 24/7 in all extremities. And, let;'s emphasize very clearly here that RLS has nothing to do with circulation at all, and putting the feet up on the headboard or up against the wall does help some people. It makes no difference where your blood is running, because RLS is neurological. just saying that sometimes our doctors think they know the answer, or just do not know about it, so he is giving the wrong information to you about circulation. Glad to see you posting again.
Again I am wording things incorrectly!!!!!!! I am very well aware that RLS has nothing to do with circulation and that it is neurological, I've had it for 45 yrs!!!!!!!! It's to do with the message being transmitted to parts of the body, the minute I put my legs up, Bam!! RLS! I sometimes have to hang them over the bed. My Dr travels the world attending conferences on RLS and is one of the top Sleep Disorder Doctors in Australia.
I live in Frankston on the Mornington Peninsula, do you know the suburbs? we don't have any RLS group in Melbourne that I know of. I know about the stretching Yikes I spend a lot of time stretching those legs!!
I found a group for RLS that meets in person. I have not attended it yet.
I sure don't know Melbourne..
To be honest, I would have to look Melbourne up on the map.
My mind drew a blank..
It's lack of good quality sleep and a big dose of Advil.
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So, good luck!
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