Fidgety Female

As I am typing, my legs are abouncin'. My RLS had become worse over the years. I have tried many things. Some worked some of the time; some didn't. I started out with soap under the sheet at the end of the bed. HA! Didn't work for me. I then read in a Dr. Gott's column that a RLS sufferer found that three Hawthorne Berry supplement pills worked. It did for a long time, but my doctor was not so sure of it. He preferred magnesium, which worked for a long time. My doctor checked my iron and B levels--they were good. I tried applying Apple Cider Vinegar on my legs which surprisingly helped a little--it smelled till it dried too. I learned that anti-depressants make it worse so I reluctantly gave up Lexapro. Not only do anti-depressants make RLS worse; they also make you fat by seriously increasing your cravings for carbohydrates. AND when I am miserable with RLS, I eat to try to feel better. I also had a needed sleep test--I have sleep apnea, low oxygen intake, and RLS, probably due to all the weight gain. I was put on a low dose of Ropenirole which made me sleepy and gave me relief from RLS for four hours. I started taking one pill two hours before bed and then the other right before I went to bed around 10-10:30 pm. It generally works; however, I could not take it during they day and I could not ride in a car in the afternoon for more than 40 minutes before I was a mess. I was prescribed a low dosage of Gabapentin which I took at noon or later for the day RLS. My doctor said that we would probably have to increase the dosage and he is right. I realized that when I was in the car, my butt would start hurting and the RLS would kick in. I discovered that putting an ice pack on my lower back helped the discomfort and the RLS considerably. (That means inflammation and anti-inflamatory medication has helped until the tummy started hurting.) Another woman with the very same conditions as these changed the name from RLS to RBS (Restless Butt Syndrome) because, for us, they were usually together. That is pretty much my RLS history. I was doing great until I caught a cold. Although the cold is gone, I have not been able to return to the same satisfactory management of this frustrating condition. Like you, I am continually researching and looking for solutions. That is the main reason, I posed on the blog.

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  • I'm awake at 2:17am and I have to be ready to go to work for 10 hours

    at 6am. My legs are moving about like crazy as well.

    I took Vicodin and it helped me for 4 hours. I guess that was as long

    as that pill lasted. (Better than nothing)

    Never knew about Restless Butts, Arms, Face, Neck, Feet until I

    found this site. Usually those parts of my body are pretty good.

    It's always my legs that are nuts and full of energy.

    Good luck with the Gabapentin. Keep us posted on how that works

    out for you. =)

  • I am hearing about medication on this site that I have never heard about before. I have not heard of Vicodin. I am sorry for what you went through last night. I know the feeling all too well. Originally, it was just the legs, but then one night I rolled over onto my arm and I felt the arm muscles twitching. The butt pain may be what is called piriformis syndrome--the location seems right, but the symptoms don't include any jerking. I just know that when my butt hurts when sitting, my legs and once in awhile, all of me, jerk. It involves the sciatic nerve. It could also be sciatica, but again they never say anything about jerking of the legs. Ropenirole is working well for me, but I do have to split the dosage up to get me through the night. It makes you sleepy so you can't take it during the day. I am not sure that Gabapentin is helping much. I am going to go get some magnesium or Hawthorne Berries supplements to help me during the day. Hope you get through the day and get some rest tonight.

  • So sorry, Vicodin is available in the USA.

    It's a narcotic. My dose is lower to medium level.

    I had RLS in my legs (constant urge to move my legs)

    and then later developed kicking, jerking legs. I was

    less aware of that happening than my husband was.

    Usually the jerking legs happens when I think that I am

    in a deep sleep.

  • At the moment I am able to sleep six to seven hours! Reduced antidepressant, increased Pregavalin to 100mg, decreased Neupro patches to 2mg, Tramadol x2 and paracetamol in the day and HRT. But I am putting on weight so I am aiming to reduce Pregavalin. This week on holiday I will be gardening, jewellery making, sorting the house. But I get very tired and I am always in pain so resting is important. Meditating and yoga twice a day is my routine but RLS does not always allow it. I have no dairy or wheat and eat very little carbohydrate. I've given up coffee, alcohol, smoking! I hope this helps.

  • I have never heard of Pregavalin nor paracetamol. I will have to look those up. I tried the low dosage of Neupro. I guess I am one of the few people that it makes symptoms worse--I had a most miserable night followed by a rough day. I have become unhappily obese as a result of craving carbs like a pregnant woman has cravings. I LOVE dairy--my doctor told me that I had beautiful bones. (lol) I am trying coconut oil to reduce my carb cravings. It seems to help, but I haven't been using it long enough to know for sure yet. If it helps me lose belly fat, then it will be a Hallelujah! I think my excess weight worsens the RLS. We spent the weekend working in our garden too. I knit, crochet, and sew mainly in the fall and winter. I had started exercise, but I messed up my knee so that is out for now. I only drink one morning cup of coffee; I rarely drink alcohol and I have never smoked. That is great that you have been able to quit those things. Congratulations! I am going out today to run errands. I am going to pick up some Magnesium or Hawthorne Berries supplements--those worked fairly well with me and I think they would help me during the day at least. Best wishes, Misplernas.

  • Giving up carbs is so darn difficult. I'm not sure that it made

    any difference in my diet over the past month.

    I am doing that green juice in a blender made from fresh

    vegetables, fruits (less fruits) and eating chicken, eggs for

    protein. I have one slice of whole grain bread with butter

    once a day.

    It honestly did nothing, absolutely nothing for RLS.

    I'm still doing it though because of the taste of the greens

    is craveable and delicious after a full month of it.

    I wish you so much luck and send good wishes to you in your

    recent changes.

  • I have lost weight on low carb diets only to find that once I eat carbs, I can't stop--similar to an addict. I am 66 years old so I have tried a lot of things--not the green smoothie though. We have improved our diets considerably--very few sodas--stevia for sugar--more chicken. Vitamin B, iron, and magnesium help. I ate liver and onions and did not have RLS for two days--it was wonderful. I did not have the same effects when I tried again. Enjoyed sharing with you. Best wishes to you too.

  • Me too Cajunfilly. Carbs make RLS worse from

    what I have read so far.

    Vitamin B shots from the doctor are amazing

    for the first 2 days or so and then it's downhill

    slowly. I get shots every 2 weeks.

  • I did not test low on my B12, so I don't know if my doctor would give me B shots or not. As you know, we will try anything if it may help.

  • B12 didn't help with RLS, it only helped my energy levels.

    I had a low low low point last week and part of this one.

    I wasn't sleeping except for minutes at a time.

    I had better sleep these past 2 nights.

    I am somewhat wrapped up in helping someone get through

    something hard and she's making tough decisions.

    She exhausted me with repeating herself again and again.

    Maybe it relaxed me to help her instead of worrying about sleep.

    I slept 5 hours last night and 9 hours the previous night.

    Feels great.

    I doubt that B12 played any part in this at all. I am treating my

    vitamin D deficiency as well... no help with RLS.

  • My B12 level was low, so my doctor suggested I take 1000 mg a day. I've been doing that a year and have noticed no change in energy level or RLS severity.

  • Hi, Yikes,

    Happy to hear that you finally had some rest--9 hours?--wow! It is nice that you are trying to help a person through tough times. I am an non-practicing LPC. That was my last career-- that only lasted three years before my husband wanted me to retire to help him. It was during that career, that my symptoms became severe.

    I have a tendency to overdo things. I am making a sidewalk our of heavy 16" pavers from the driveway down the sloped side of the house to the garden we are creating. I have really worn myself down in that I am not recuperating with rest. Last night I was restless, sleepy, very achy so I was feeling yucky. I remembered I had a whirlpool bathtub--I alway shower--in our main bathroom and, boy, did I utilize it. It really helped to make me feel more relaxed and less achy. It was also a challenge to get in and out of the thing. I was still a bit jerky. I went to bed and as usual, the longer I lay there without going to sleep, the more awake I got so that I had to get up. Eventually, I felt sleepy enough to sleep for 3 hours straight. Then it was pretty much making myself stay in bed as much as possible. I got up at 5:30 am this morning, latest this week.

    I wanted to share that the first time my doctor put me on Gabapentin, it worked UNTIL he changed my anti-depressant to Effexor and then the Gabapentin completely stopped working. I had a discussion with the pharmacist and we believe that Effexor made it to the neurotransmitters first and blocked Gabapentin from working. I am on a small dose of Gabapentin and really need it upped a little bit and maybe the Ropinirole, too.

    Hope you have a great day, Yikes.

  • I've also tried Gabapentin and Requip to no avail. Did nothing at all.

  • Hi, I suffered with RLS whilst pregnant and do still get it occasionally. I use Halcyon Bracelets halcyonbracelets.com/ with instant results! It made such a difference. No medication, just wearing bracelets, no harm to baby either.

  • I will look into it. Thank you for the recommendation.

  • Dear Fidgety Female - I have taken ADs since the mid-1990s and have NEVER craved foodstuffs. Therefore I have not gained weight. Other health factors can make people crave foods ........ if we could get to the cause of RLS we would all be in a better place! I found bananas daily helped and occasionally need to take Ibuprofen an hour before bed. Diet plays a huge part in our general health as does exercise and I think humans have forgotten how to nourish the body/brain ..........

    Having read further down your 'report' I see that you suffer from 'back pain' - have you seen an Orthopaedic Surgeon recently? I have sciatica and it hits me just as you describe. Usually worse in the night when I'm not moving around and often when I have been sitting for a long while, I get up like an old person :-(. It was found a few years ago that men: when driving would have a wallet in their back pockets: went to the GP complaining of back pain - took out the wallets whilst driving and hey presto! Also, people who wear 'bad' footwear however fashionable, are putting intense strain on lower lumbar region and muscles - maybe looking at what we wear and when might help a bit. If you watch folks in the main street of your town .......... do a quiet critique and then apply what you see to your wardrobe? I did to mine about 18 mnoths ago and have felt much better around the lower back .......... sometimes the most obvious things go by me ....... '-)

  • Thanks for the advice and encouragement. I think I was born with a sweet tooth/carb craving gene. I am a LPC and I know that many do gain weight on ADs, but I am sure other factors contribute to it as well. I am able to control the carb cravings better at times than others. I handle carbs like an alcoholic handles alcohol. I consider myself a carb addict. My sister-in-law who is a nurse believes I need to be tested for Type 2 Diabetes. I am so jealous of you not gaining weight! : ) Congratulations!

    About the back pain--I have an outstanding chiropractor who has helped clear up the lower back pain. I am fairly certain that the pain I am experiencing in the buttocks where I sit is Piriformis Syndrome, another problem that doctors are not sure what to do with. I haven't seen my chiropractor for some time to ask him about it. The ice pack on the very low back helps the inflammation of that butt pain and RLS while traveling. Taking magnesium or Hawthorne Berries really helps the RLS, too, since I can't take Ropinerole during the day. In addition, I am taking glucomine chondroitin (?) for my thin cartilage in my knee and I am hoping that the pain in my butt will go away too. Many years ago, I had this or a similar pain in one hip (without the RLS) and the glucomine chondroitin(?) cleared it up. Keeping my fingers crossed. By the way, you are absolutely correct about wardrobe affecting back pain. I am careful about the shoes I wear. Thanks, again, for the suggestions I should consider.

  • I have Stage 4 kidney disease and restless legs syndrome as a result. Mine affects me 24/7, not just at night. My legs are CONSTANTLY moving. I've tried everything to help get sleep including lavender aromatherapy, Benadryl, Effexor (originally prescribed for hot flashes as I'm menopausal), valerian and Xanax (originally prescribed for anxiety when I had advanced breast cancer). None worked except the Xanax; unfortunately; my doctors took me off of it. I've tried to get them to re-prescribe it to no avail. My current doctor just prescribed Lexapro for anxiety, but I see it also makes RLS worse, so I guess I won't be taking it either. I'm at my wit's end with this. I stopped taking the Effexor, Benadryl and valerian upon learning they actually make RLS worse.

    Every night I'm up until at least 2 a.m. until I FINALLY drift off to sleep from pure exhaustion. An hour later, I'm up to pee. I go back to sleep most of the time, but then the pattern repeats until I finally can't go back to sleep around 7 a.m and am forced to get up. Some nights I do well to get two hours sleep. This severe insomnia has been going on over a year and I don't know how much longer I can go on. As of now I can barely function due to ungodly fatigue. I don't know what else to do.

    Severe anxiety also plays a part, which is something I've had all my life and I'm nearly 47. Many nights I'm so exhausted I can't hold my eyes open, yet my mind is racing 100 mph. I stay up hours worrying incessantly about things.

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