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    Old 07-12-2016, 04:04 AM   #16
    ddill
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    Re: Frustrated with RLS

    Well, I haven't kept in touch lately but here it goes. The RLS remains the same, or worse. As usual they start acting up early in the day if I don't take my full dosage of Mirapex and night is also the same, I have to take the Mirapex in late afternoon, usually around 4:00 or they start acting up again. I take a larger dosage in the afternoon than I do in the morning.

    I don't know if the change in iron has made any difference but I continue to take what I got at the health food store.

    Meanwhile my hip that I had replaced last October is making a popping noise when I bend over sometimes. I have an appt today with the hip doctor.

    What's worse is that I have pain in both hips that is not on the side where the bursa is and it is not in the groin where the hip arthritis would be but more in between. Plus I have weak leg (thigh) muscles making it difficult to walk. I am unable to put my full weight on my left foot for even a couple of seconds. I am using either a cane or sometimes the walker to get around. This has me concerned. I have an appointment with my primary dr on Thursday and will discuss it with her at that time.

    OK, I think I've rattled on long enough but it feels good to just tell someone about my issues. Thank you for listening.
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    Old 07-18-2016, 02:05 PM   #17
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    Re: Frustrated with RLS

    How did your doctor's appointment go? Right now I am doing physical therapy for the bursitis in my hips. Seems to be working. Not to sound like a broken record, but on the outside chance that the statins are causing the muscle weakness, which I believe can be a side effect, is it worth going off for a month with your doctor's permission? As far as I know it's not a "life saving" medication like high blood pressure medication or insulin or blood thinners. Lastly, as we discussed if you're taking a therapeutic dose of Prozac you may need to double or triple the iron, with your doctor's permission of course and I would just try it for one night. Of course the iron has to be taken before bed on an empty stomach. If you take the right amount of iron, enough to counter the serotonin from the Prozac, you should feel your body relax after one hour and you should drift off to sleep. After 6 to 8 hours the effect of the iron wears off. When I was taking 1mg of melatonin one 25mg tablet of iron was enough. When I raised the melatonin to 3mg then I had to take two iron tablets and relief was there but not quite complete. That's what forced me to go back to the internet and find out about how bad melatonin is for RLS. Anyways, the great thing about stopping melatonin or Prozac for a few days is the fact that it is always there for us. Always. So that should be of some comfort should you decide to give it a go.

     
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    Old 07-18-2016, 03:55 PM   #18
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    Re: Frustrated with RLS

    Have you gotten injections for the bursitis in your hips? I know they worked for me. Of course everyone is different.

    I usually take the iron with dinner.....should I be taking it at another time?

    I fall asleep without a problem but wake up around 4, maybe 5. Sometimes I am able to get back to sleep but that's rare. I take gabapentin 300 mg at night and if I take 2 instead of 1, then I fall back asleep.

    The dr appt for the hip was last week and he says the hip is ok that the sound I hear is the muscle that goes over the hip and recommends PT.

    Next appt is Weds with my rheumo doctor.
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    Old 07-18-2016, 11:17 PM   #19
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    Re: Frustrated with RLS

    OMG if you take the iron with dinner it will do NOTHING for your bedtime RLS. NOTHING!!! You have to take the iron (I would try taking two tablets just for one night) an hour before bed on as empty of a stomach as possible. It would be great if you wait until your RLS is acting up (but don't wait too long) then take the iron. Within one hour you should feel the RLS melt away. It always blows my mind and I've been doing this for years yet it never ceases to amaze me.

    Have not tried injections for the hips. That would have been the next step if the flare didn't quiet down. You're gonna love physical therapy. Xx

     
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    Old 07-19-2016, 06:27 AM   #20
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    Re: Frustrated with RLS

    OK,I take the iron due to anemia, not necessarily for the RLS. I'm assuming that taking it with dinner still increases my iron levels for the anemia.

    I can switch to taking the iron before bedtime but since I already take the Mirapex for my RLS, I will not be waiting for them to act up. No way could I stand one hour of them acting up, waiting for the iron. Hopefully they won't act up! Maybe I should take one iron in the evening but the second one in the morning as my RLS usually starts before lunch.

    How severe is your RLS and how long have you had it? Mine started probably around 35 years ago and is getting progressively worse as it has become an almost all day problem and has also started affecting my arms. I have yet to find someone that has it this severe.

    Go for the hip injections!
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    Old 07-19-2016, 11:43 AM   #21
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    Re: Frustrated with RLS

    My RLS started when I was 12. But it was intermittent and I guess mild because I always eventually fell asleep. It didn't even really bother me during pregnancy much. It turned into restless body in my 40s when I started the melatonin. I didn't make the connection for years but that's when I found out about the iron at night thing. Ferrous sulfate never worked, only the bis-glycinate. The day I stopped the melatonin is the day my RLS went quiet. Fast forward five years to age 52 and just about anything can provoke an attack. One antacid or one benedryl. Even a big meal, especially in the evening. Sometimes I just don't know what is triggering it. As we age, so do our dopamine receptors. Everyone's dopamine receptors age only ours were bad to begin with due to lack of iron in the brain. Well, I should actually say lack of a brain iron reserve. During the day we have enough iron circulating in our blood such that we generally don't get RLS. In the evening everyone's blood iron level drops especially as it gets closer to midnight. The rest of the world isn't affected because they can make a withdrawal from their brain iron reserve and their dopamine receptors keep humming along. Ours come to a grinding halt. By taking iron at night, especially a form that is able to cross the blood brain barrier, we get relief.

     
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    Old 07-30-2016, 08:48 AM   #22
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    Re: Frustrated with RLS

    Monday is my rhiztomy. I have to be there at 12 noon. Hopefully this will give me some relief.
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    Old 09-21-2016, 01:52 PM   #23
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    Re: Frustrated with RLS

    What's up with you girl?

     
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    Old 09-22-2016, 04:12 AM   #24
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    Re: Frustrated with RLS

    The rhizotomy was GREAT. Although I slept thru the procedure the results were just about immediate. No more pain down my leg and I can finally walk. I still have lower back pain but the doctor thinks it is muscular and has sent me to physical therapy. So far I have been to only two sessions but it is obvious that my hips and legs need strengthening. I can actually walk stairs one step at a time!

    Unfortunately yesterday I went o a bus trip and didn't bring my evening pills. Fortunately I had some Aleve in my purse and I took those but by the time I got home around 10:30 I was quickly taking my meds.

    I do have a funny story though about the leg meds. I went to my neurologist for a check up and we decided rather than me taking two .5 mg that I could be switched to one 1.0 mg. (I take that amount in the am and twice that amount in the evening.) So she sends the script into my mail order prescription company. A couple of days later I hadn't gotten an email from the company saying the script was on its way so I called. The lady I got on the phone told me that it didn't come in a 1.0. She listed the amounts and said it only came in .5, .75, 1, 1.5..etc. Now tell me....what is the difference between 1.0 and 1 ???????? After much discussion (on my part) she finally agreed to process the 1 mg rather than the 1.0 mg that was requested !!!!!!!!!
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    Old 09-22-2016, 09:28 AM   #25
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    Re: Frustrated with RLS

    Scary, funny, but mostly scary. You have had one heck of a ride. More than most I'm telling you. So have your legs settled down in terms of the RLS?

     
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    Old 09-22-2016, 04:01 PM   #26
    ddill
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    Re: Frustrated with RLS

    As long as I take my meds on time the legs are ok. How about you?
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    Old 09-22-2016, 04:08 PM   #27
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    Re: Frustrated with RLS

    Quote:
    Originally Posted by ddill View Post
    As long as I take my meds on time the legs are ok. How about you?
    I'm ok as long as I take the iron. Are u still taking?

     
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    Old 09-23-2016, 04:42 AM   #28
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    Re: Frustrated with RLS

    Absolutely!!!! I ran out of the ones I got at the health food store last week and am now taking the ones from the drug store until I can get back to the health food store. It is a 30+ minute drive from where I live. I've been tired which is usually what happens when I stop taking the iron. I'm always doing something --- usually either gardening or sewing or at our local library -- from the time I get up until I go to bed. It is rare for me to sit down and watch tv and although I love to sit down and read I have not done much lately. Without the iron I could never be able to keep going like I do. So I need the iron both for energy and for my legs. Some times I wish it came in a larger dose.
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    Old 05-03-2018, 10:09 PM   #29
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    Re: Frustrated with RLS

    Hi Ddill, time for your annual checkup. Can you please tell us how things are going? And what you're taking to keep going

     
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    Old 05-04-2018, 05:40 PM   #30
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    Re: Frustrated with RLS

    Thanks for checking in with me. The Mirapex continues to be my best drug. It seems to be working so I'm not going to mess with it. Also, the fact that I take gabapentin prior to going to bed may also help.

    I have two other health issues going on at the moment. Lymphedema in my right leg and tear in rotator cuff in my right shoulder.

    I go to a lymphedema clinic twice a week and my leg is doing much, much better.

    Meanwhile I am trying to hold off on the shoulder surgery until after summer but I may not be able to.

    So how are you doing?
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    August 11, 2014: Repair ruptured Achilles tendon.

     
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