How significant is stress to RLS?

[Betty/WV]

Hi Helen1965: It sounds like you have a great "fella". What a blessing. As for jogging, I think it is great you like to jog. Myself, I hate exercising! But I'm 73 and don't feel good most of the time. But then again I didn't like it when I was young, but I always put forth an effort to exercise then. Why don't you just cut down on how long you jog, and also how often. Trial and error, see how it works out.
Nice reading your posts.

BETTY/WV

[ViewsAskew]

Yes, the relaxation thing is the one that's a puzzle to me. I love to jog and walk, it sounds strange but that IS my way of relaxing. I (used to ) love the buzz afterwards. But now I am learning that too much exercise can aggravate the RLS demon, so does that mean I should stop jogging altogether, or jog as often but not for as long, or just jog for the same length of time but less frequently? Can anyone advise me on this, I really don't want to stop running altogether.
I am due to see my Doc on Xmas Eve, and my lovely fella went all the way through to see my MS nurse today (I was working), to collect information on possible medication and other things that the Doc needs to read, and he even delivered it to the Doctor's surgery. And then he made the appointment for me to see the Doctor! All of this without me knowing about it. Of course, when he told me everything that he had done for me today, I cried. Yet again. So maybe, just maybe, I will get a decent sleep in time for Christmas, what a fantastic present that would be for me ,and my fella too... I have honestly forgotten that person that used to be me, and I quite liked her.

Helen, I think you have to adjust until you find a happy medium on the exercise. For me, I need it, but I can't do too much. None is very bad. Too much is very bad. So, what's the Goldilock's serving?

For me it's swimming, biking, or walking, with some light aerobics or weight lifting. heavy weights are a problem. Heavy aerobics are a problem. So, I do a Nia dance class once or twice a week, try to walk daily (1-4 miles), and bike during the summer - no more than 10 miles a day, usually less.

My fingers are crossed that you get lovely sleep for Christmas. Enjoy a snuggle with your sweetie. And, if not, it'll happen soon enough.

I've just gotten a few glimpses of my old self in the last week. I still don't have it completely right, but it's better. Yesterday, at a party, I was able to look in from outside and see that I was, for at least part of the time, mostly who I think of myself as being. It felt nice.

[helen1965]

I enjoyed reading that, and I hope to God I can say the same things as you soon. I am going to cut down on the jogging at night, even though it was only 15 minutes a time, and keep the jogging for the mornings of my days off, which I really enjoy, as that sets me up for the rest of the day. And I am going to start taking a walk in the evenings again, I did that faithfully until my lovely fella moved in with me, (when the RLS really took hold, funnily enough), and I have missed it. So that will be started up again instead of the nightly running. And has anyone tried these drugs: Ardartrel which is a Dopamine Agonist sometimes also known as Ropinarole: Rotigotine which comes in a patch form: Clorazepam. These are all possible drugs for me to try according to the paperwork my MS nurse has sent to my Doctor. If anyone has tried any of them, were they successful? I appreciate these drugs may have a different name in the US, I am in Scotland. Thanks for listening, everyone. X

[ViewsAskew]

Ropinerole is successfully used by many. If you can find it, Mirapexin may be a better alternative. They are very similar, however some recent studies give a slight edge to Mirapexin. About 80% of people who take these two drugs are happy for a long time.

There are three concerns: 1) Take the lowest possible amount for as long as you can. 2) Do not start them if your iron stores (your ferritin) is low as this is currently being thought to increase potential risk of #3 in this list. 3) These drugs carry a risk of making the RLS worse. It often starts getting worse around 16-18 months after starting it. BUT, if you made sure you followed 1 and 2, it should decrease this risk significantly. And, when it happens, if it happens, as long as you know to look for it and can talk to a doc right away, all should be fine.

I personally am not in favor of clonazapam when starting out. There is no research proof that is helps RLS (it will conk you out and may make you unaware of the RLS) and it carries a high risk of physical dependence. Most of us have to change drugs at some point. Unless other things don't work, it seems best to me to wait to try the ones that carry additional risks.

Rotigotine is withdrawn in the US (or at least was). The researchers have hypothesized that a constant dose of a dopamine agonist would even further decrease the above risk of #3. It wasn't on the market long enough to find out. They had trouble with the patches, so withdrew it to fix the problem. It was re-approved in Europe a short time later, but not in the US.

If it was me, I'd probably try the patch first, but ONLY if I knew I could get it in a very, very low dose. RLS patients often do not need a lot of these drugs. They had to decide a starting point, so they chose a point that is higher than some researchers recommend. Just being cautious, seems that going lower is better. If it doesn't work, increase it. If it does, great, less drug in your body, less chance of side effects, less potential for problems 2 and 3 above.

Whatever you do, just pay a lot of attention to how you're doing. Let us know.

[SquirmingSusan]

Yes, the relaxation thing is the one that's a puzzle to me. I love to jog and walk, it sounds strange but that IS my way of relaxing. I (used to ) love the buzz afterwards. But now I am learning that too much exercise can aggravate the RLS demon, so does that mean I should stop jogging altogether, or jog as often but not for as long, or just jog for the same length of time but less frequently? Can anyone advise me on this, I really don't want to stop running altogether.

I love to exercise too. In fact, I should put on my cross country ski boots and take the dog out on the trail tonight. Not sure I'm going to make it, though, with all the holiday stuff I have left to do. Heck I wouldn't quit exercising unless there was just no way to deal with the increased RLS. I would ask the doctor to increase my meds before I quit exercising. Since you're seeing the doctor in a couple days you may want to wait and see if you can get meds to manage your RLS, and then see if the meds cover the increased RLS from exercise.

Whenever I hear anything about "relaxation" I just cringe. Exercise IS also my form of relaxation. Sitting in a spa works too, but I like that best after a good run on skis or a long swim.

I can't do any of those relaxation exercises where you sit and focus on breathing or whatever. I have this software called "Journey to the Wild Divine" which is to help people learn to meditate. It has music and visuals, and has me do breathing techniques. It's very relaxing until...

... all of a sudden it's like someone let snakes loose under my skin.
I'll stick to exercise.

I am due to see my Doc on Xmas Eve, and my lovely fella went all the way through to see my MS nurse today (I was working), to collect information on possible medication and other things that the Doc needs to read, and he even delivered it to the Doctor's surgery. And then he made the appointment for me to see the Doctor! All of this without me knowing about it. Of course, when he told me everything that he had done for me today, I cried. Yet again. So maybe, just maybe, I will get a decent sleep in time for Christmas, what a fantastic present that would be for me ,and my fella too... I have honestly forgotten that person that used to be me, and I quite liked her.

Wow, what a nice guy! Can you have him cloned and send me a copy? I hear they have the technology in Scotland. I hope you get your Christmas wish of a good night's sleep.

[Polar Bear]

Yes, they have the technology in Scotland, only problem is everyone would go baaaaahhhhh baaaaahhhh.

Glad you are seeing your doc before xmas. I am over here in Northern Ireland, just a stone's throw from you. (was over your way twice this year in Aberdeen in February and then to Edinburgh in August for the Tattoo) so we are both under the same health care system.

You ask about Adartrel - I have been on it for 3 years with some success tho best relief has been when it was supplemented with Tramadol in the evenings. However I have symptoms of longstanding which are 24/7 which likely require more treatment than yourself.

Your fella sounds a diamond and his support will be a great asset.

I see you have printed off a oopy of the Algorithm, make sure to take this with you to discuss with your doc. Most docs have a healthy respect for the Mayo Clinic information especially as most docs (mine included and which he admits himself) know very little about the treatment of rls and are happy to receive some accredited rls guidline.

Please keep us informed of how your appointment toes on christmas eve, and may you be blessed with a good sleep and a cuddle.

[Hugo_Westinghouse]

I think I should define what I mean by "relaxation."

Is stretching out on the couch relaxing for me (or any of us?) In most cases, absolutely not. I meant relaxing your mind more than anything. When I feel my RLS really flare up, I sometimes help myself by taking a few deep breaths and trying to put myself in a better state of mind. It sounds sort of hokey, I admit, but it often works for me.

As far as exercise goes, I LOVE exercising but it certainly demands a happy medium. If I go out for a rigorous run at 9:30 PM then try to sleep at 11:00, forget about it. If I'm planning on doing any really rigorous exercise, I try to do it earlier in the day. Walking or skating or playing hoops doesn't bother me as much though. I don't know why.

[helen1965]

I have finally had a test for my Ferratin levels, and had the results today. Apparently a normal level can be anything between 25 and 350. Mine is 13. So it's significantly lower than it should be, and now I am prescribed a Ferrous Sulphate medication. I nearly cried when I was told the results, I thought maybe, just maybe, this is the light at the end of the tunnel. I know I shouldn't expect to see results immediately, but Oh God I was tempted to down the whole lot in one go!!! So maybe I won't need all the drugs I have been looking into, maybe this will be enough!! And now maybe my partner and I can actually start planning a nearly normal life, one that isn't dominated by a near total lack of sleep....
I will keep you posted.

[helen1965]

I forgot to say that I realise that I shouldn't take cold remedies with my RLS, but can anyone tell me exactly why? I didn't tend to take them anyway, but I have the start of a cold now (just in time for the New Year), and I'd like to know if this would include throat sweets for the sore throat part of it? I hope not, because I've been taking them sporadically for the last two days. But anyway, I've got my lovely new friend, the Ferrous Sulphate medication now!! ( I hope.)

[ViewsAskew]

Helen - I surely hope the iron works. My ferritin has been between 8 and 32 for the last 6 years. It's hard to get it higher, so take that stuff religiously. If you can, take it on an empty stomach and with vitamin C (unless C is already in your tabs).

Many people experience lessened RLS when increasing iron. Some don't get any help at all. Some have their RLS go away.

Try to be realistic (and I do know how hard that is - we all want this to go away so badly). It's a long emotional tumble if you're holding on to something as the be-all-end-all and it turns out to be something else. You can imagine how I know that.

[SquirmingSusan]

Helen, I hope you're in that large percentage of people who respond to increasing their ferritin levels.

As for cold medicine - most of us are OK with decongestants, cough suppressants, and expectorants. Just watch out for cold medicines that have antihistamines. Those can make the RLS go crazy, especially if the antihistamine is benadryl.

[helen1965]

Thank you for the advice everyone. I sincerely hope this is it, although I've been 'walking' since 4 a.m., but I do realise it will take a while for the Iron to build up in my poor, tired body. Have to say that when I went to bed last night I felt fantastic, my arms and legs were absolutely fine. I do realise that part of my euphoria was more than likely to be due to the fact that I have at least been given a reason why the last 9 months have been so bad, and all the time it was nothing to do with my MS (which I hadn't been convinced of anyway). I just wish that someone had offered me the test for Ferratin levels at the beginning, I may have been sleeping by now!!

[ViewsAskew]

If I remember correctly, it can take 9 months or longer to get your ferritin increased dramatically when taking it orally. If your doctor is willing, you could have an infusion - that is instantaneous. Many doctors will not do it, but it's worth asking.

There is a brand of iron called Nifirex - one tablet contains 150 mg elemental iron. That is worth almost 3 of the typical tablets of ferrous sulfate. It's expensive, but your insurance might cover it. Taking 1 a day beats 3 a day! I also don't know if these is a European equivalent...

[helen1965]

Thank you for all your replies. I have been taking the Ferous Sulphate religiously for 5 weeks now, along with Clonazepam at night. I notice a difference, I actually had two whole nights sleep at one period, alas it didn't last, but I have just about got the night walking down to once a night, although sometimes that has lasted an hour, so I am still losing sleep but not as much as I was. I pin my hopes on getting my iron levels up, I cannot face the fact that I may spend the rest of my life getting up for an hour at 4.30 a.m. every single night. I am moving house in 7 weeks time, that means changing doctors too, that will be another laugh(??). Anyway, the main thing is that there is some improvement, and hopefully there will be more.

[Polar Bear]

Its wonderful that you have made some progress.

I understand that you don't want always to have to get up for an hour every night and hopefully with further progress in your iron and medication regime this will improve. I still get up every night, usually for a couple of hours, and am resigned to this, fortunately I no longer have an early start each morning.

Good luck in finding that your new doctor will be rls aware or willing to become so with your help.