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frustrated and desperate for relief

Posted , 4 users are following.

grammyjo
grammyjo

I've had RLS for close to 10 years.  Requip worked for 2 years pramapaxole worked break for 4 years then started havinga few break through episode's which wasn't to bad these last 2 years have been a nightmare I've had aloft of medical problems to deal along with RLS everyday and not just at night.  My Dr tried me on seniment I think its called with no relief at all after4 months I gave up on it.when asked what else can try she said there's nothing that can be done, well I blew up and demanded to see a neurologist since then found out anemic B12 and vit D deficiency he thought one those normal RLS would improve wrong.  Now on Gabapentin 900 and 1 hydrocodone an bed time tomorrow the gabapentin increases to 1200 so far had very little improvement only time I sleep is when totally exhausted I don't dare drive afraid of falling asleep making stupid mistakes at work and on 3 occasions fallen asleep standing up luckily I haven't gotten seriously hurt. I just don't know what to do anymore so tired (pacing as I type this) and frustrated that the doctors don't seem to understand how negatively this is affecting my life anyone have any suggestions

1 like, 16 replies

16 Replies

  • debbie27473
    debbie27473 grammyjo

    Posted

    Hi

    I have suffered for years with this horrid affliction. Doctors do not understand how it makes you feel. Sometimes I think I will go permanently insane if it doesn't stop. I have found that since being diagnosed with pmr and spinal stenosis, my rls has been ten times worse. However I do find that if I take my Tramadol around 9.30pm it really helps to alleviate it when I get into bed. During the day, I have realized that resting anything on my lap (even something light) starts the rls off. Also if I sit on my hands (a habit I am finding hard to break)! Even tight jeans makes it worse. So, if we avoid sitting, laying and wearing clothes we'll be fine! LOL. Don't know if any of this is helpful or if you find the same triggers? Would be great if you could let me know. Take care, Debbie

    • grammyjo
      grammyjo debbie27473

      Posted

      I'm the same way can't have any thing  touch my legs my fiancée tried to help one night and tried to massage them in hopes it would help instead I ended up in tears which made him feel bad.  I wish we had a magic wand that we could wave and make it all better or to make the doctors go through it for just a week then and only then we might get them to understand what we go through everyday
    • grammyjo
      grammyjo

      Posted

      I have now been restless leg free for 4 days.  I ended up in the hospital after an acute asthmatic attack.   The Dr saw how bad and decided to add pramapaxole back along with the gabapentin.  The two together have worked like a dream.  The Dr that treated me said sometimes it takes a cocktail of meds to work 
  • Lindieloo
    Lindieloo grammyjo

    Posted

    I'm on same as you!! I have to say I thought the ripinirole was working but keep taking another one!!

    tranzadole at night as well but stopped as only thing that was doing was my stomache!!

    gabapentine, pain killers the lot but only works for a few hours now, like you I don't know what to do!! Doc says no cure, nothing else she can do!!

    do you smoke?? That's what they blame RLS on for me!!

    • grammyjo
      grammyjo Lindieloo

      Posted

      I don't smoke any more quit several years ago.  I've decided to start doing more research as now my neurologist thinks I may have Parkinson's and that's why RLS so bad.  I have complete nearo work scheduled for Oct 21 now.
    • Lindieloo
      Lindieloo grammyjo

      Posted

      These tablets ripinirole are for Parkinson's but I don't  have Parkinson's, they just supposed to help!!

      I'm gonna be asking to see someone as well tho, getting beyond a joke!!

      ​All  the best to you tho, please keep us up to date!! 

    • grammyjo
      grammyjo Lindieloo

      Posted

      I talked to Dr today and told him the gabapentin is not working so what does he do he increases the gabapentin from 1200 to 1800 and then when I asked him what I could  take or do if it don't work and he's like we'll talk about that when I see you in 2 weeks I felt like slapping him silly.  Why do doctors have to be that way
    • Lindieloo
      Lindieloo grammyjo

      Posted

      Doctors don't really seem to realise just how bad this is!!

      ive had different meds for this and a few of them disagree with me but just have to keep trying what they give you!!

      the ripinirole is supposed to be taken at night but I take 2mg night and soon as I fee it starts through the day I take 1mg, I'm hoping it's work for a while!

      gabapentine as well as pain killers! Hope u can get something more cause they won't do much for u xxx

  • ooops64
    ooops64 grammyjo

    Posted

    I have progressed to jumping legs (periodic leg movement, while sleeping (I get restless legs when relaxing though), it is listed with restless legs. I try sleeping on my stomach, also not very nice, but immersing you foot in very cold water. I fill up our basin in on suite, with cold water and splash the cold onto my legs while in the water, a cold dripping flannel while in the water. 

    I believe it is due to nerves in the legs, as, if I lightly stroke my foot it will jump, during this episode. Also wearing socks in bed, I find the bedclothes can start it off. I have a Thyroid problem, Asthma and non seasonal Ryhinitis, that all keeps me awake also. Do not know if any of thhis helps you but, I find the cold water is shock treatment to my system.

    I have tried lots but the colder the water the better. I have not had medication for this.

  • Lindieloo
    Lindieloo grammyjo

    Posted

    I do that with water, helps for a little while!! I stand outside on cold step, in out shake it all about!! Just a nightmare!!
    • grammyjo
      grammyjo Lindieloo

      Posted

      I found that a hot whirl pool bath helps  a little but only if I stay in the water within minutes of getting out the legs start right back up.
  • grammyjo
    grammyjo

    Posted

    Wednesday the doc upped my gabapentin and still here I am pacing the floor.  Surpose to call office tomorrow and let them know if any change.  That's a resounding no unless you want to add sleep walking into the mix, from what I've read on internet most sleep walking is the result of sleep deprivation I would say that is true for me.  Here's a laugh for you.  When my boyfriend woke up and I wasn't in bed he went to look for me he found me coming out of the bathroom he said I walked right by him like he wasn't there when the went to turn the light off he said the tub was full of water then he noticed that there were eggs in the toilet.  The next day he asked me why I did that.  I couldn't answer I don't recall any of it..  Its funny but yet not cause what else might I do?  I'm just majorally at wits end.
  • Lindieloo
    Lindieloo grammyjo

    Posted

    Gabapentine don't help me anyway!

    i haven't been sleep walking either yet hahaha not funny really but if YA don't laugh yer gonna cry It's just a night mare!!

    • grammyjo
      grammyjo Lindieloo

      Posted

      So true I would rather laugh then cry I've done my share of crying and it only makes me feel worse and the laughing at least takes your mind off it even if its just for a minute
  • grammyjo
    grammyjo

    Posted

    Update I may finally have relief, unfortunately the way I came across it wasn't the best way. I had a severe asthmatic attack and landed in the hospital I told them about it and the nurse acted like she didn't believe me. Well every time they checked on me they saw me pacing finally at pm they called the doctor he ordered required even though it didn't work before well it helped some so next day I talked to the Dr and then he changed topramPaxil he said with that and the gabapentin he said that sometimes the two together work I actually slept most the night only thing that woke me up was another attack and I haven't been bothered with the RLS all day.
    • grammyjo
      grammyjo

      Posted

      Hopefully it will work again tonight and not a fluke I hope that this information will help someone find relief
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