I hate down time

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I have suffered from RLS since I was 12 years old and now 62 years later the disease has only worsen.

I just heard of the forum today and it gives me comfort to know there are others we are experencing the same feelings as I am. I was referred to a neurologist approximately 20 years ago and now I have recently been advised that they are unable to control by legs with their prescribed parkinson medication and will be referring me to the pain clinic.

I have tried so many variables of drugs withh the latest being the Neupro patch-started at 4 mg, then it was increased to 8 mg every 24 hours. The drug is relatively new in Canada. My legs some nights are so bad that I have tken up to 16 mgs at one time. Unfortunately the drug no longer impacts my rls.

I am at my wits end now as my body is no longer responding to the prescribed drugs and now I feel I am left alone to self medicate my self until I finally get some relief from these horrible leg sensations. 

People always assosciate RLS with pain but it is not pain- I find it difficult to decribe the sensation I feel-can anyone share their thoughts.

Just recently  I have been approved for legal marijuana

It has been 5 nights since I had a good nights sleep and feeling somewhat depressed.

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6 Replies

  • Posted

    I really feel for you Shirley. I am 63 on Sunday and I can't remember a time when I didn't have this problem. I also see a neurologist who has upped my medication to its limit. I have a sleep disorder and I am on full meds

    for that as well. I don't just have restless legs I have to move my whole body and it's exhausting. I wonder what good a pain clinic will do for you, although I really hope it works for you. What I wouldn't give for a whole night's sleep.

    Let us know how you are getting on

    Lynn xxx

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    • Posted

      Thank you for your response to my message

      My son referred me to this forum and this is the first contact with an individual that truly understand what RLS is and it's symtoms.

      I am at my maximum limit for pramipexole medication which is 4.5 mgs. I was honest with my neurologist  and advised her I have taken up to 9 mgs in a day and my legs still remain restless and I had no side effects. I was on the neupro patch and started with 4 mgs -changing the patch every 24 hrs. That dosage increased to 8 mgs-which was the maximum-this medication was great at the start as it fed my body continually and my legs  were less restless during the day.It was  a relatively expensive drug and the results after 6 months provided minimal relief.

      I had surgery on my rotar cuff and the doctor placed me on oxycotton. for 1 week- my RLS symptons totally disappeared. I thought I was cured  .

      I mentioned this to my neurologist and that is why she is referring me to the pain clinic as her expertise in managing this drug is limited. Although I have been referred to the pain clinic it has not been confirmed they will take me on as a patient.

      My next step is legal marijuana-I have been approved and am waiting to have my order placed. I will provide more details once this has been done.

      Thank you for sharing Lynne

      Sam ( this the name I am called by)

       

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  • Posted

    You have my sympathy, I have had the condition since early childhood, I am now 80 years old.  What they call ADHD is only a description of behaviour; it does not explain the cause.  Some advice.  #1. Stop thinking about RLS as a disease.  It is not a disease.  It is simply a deficiency of dopamine uptake.  Furthermore as you age it will move from the legs into your spinal column causing spasms throughout your body.  #2. The patches you are taking cause a rash so if you haven't tried ropinirole (which goes by the name Requip) give that a try.  2mg. once around mid afternoon and then around 8 pm take another 8mg.  This has helped me enormously.  #3 Do an internet search for foods that help your body produce dopamine.  #4. If you are taking Sinemet talk to your doctor and tell her that you want to get off of that particular dopamine agonist.  It causes augmentation and you end up worse off than without it.  #5.  If you have access to a hot tub use it regularly before your legs start bothering  you.  #6. Get into a shower, turn the temperature to as hot as you can stand it, then switch the water quickly to the coldest setting (it will cause you to gasp or even scream out in shock) stand under the cold water for at least to the count of 60, then switch back to the hot water. Do this same thing at least three times.  Finish with medium temp. or cold.  This system will interrupt the electrical impulses causing that nightmarish sensation of RLS whether it is in your legs, one leg or spinal column.  Keep in mind that the sensation is caused by brain chemistry and is not really in the legs.  As you know movement gives some relief, that is why little kids with it cannot sit still in class, so they are mistakenly given all sorts of drugs.  Requip is not a drug.  It addresses the dopamine problem. Many people have a minor form of this condition.  Anyone who has trouble sitting still in a cinema, or on their sofa, or in a plane, or anyone who bounces one or the other of their legs in that rapid repetition has the condition and doesn't realize it; they are generally uncomfortable without moving and that movement gives some relief.  Excercise as much as you can during the day.  Do not smoke, cut out caffeine entirely, neither product is good for you even under so-called normal circumstances. Take medical cannibis under a doctor's supervision if  you are lucky enough to find one who knows what she/he is doing.  It helps enormously especially if you take it before the sensation starts or just at the beginning.  You know when the sensation is coming on, listen to your body's signals. Masturbate.  It also helps.  I wish you great luck, concentration, and a calming of the condition.  Loss of sleep can drive you literally crazy.  If you find you cannot sleep do not just lie there and twitch and squirm, get up and do something which you consider productive.  Minimize the time you spend in front of a screen be it TV or a computer.  If you do watch TV avoid as much of the crap, violence, insanity, cruelty you can.   Forget the nightly news.  It has become toxic. Watch only what makes you laugh.  Learn to meditate by removing language from your head.  If you can sit or lie still even for a brief time and not allow words to come into your head it will help your condition. Try to be at peace with yourself,.  Good luck. 

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    • Posted

      Thank you Rondre for your response and the recommendations. I certainly did not think  of all of these. It was interesting to hear of the additional experiences from some one more senior than myself. They say RLS symptoms progress with age.

       Somedays I honestly feel defeated.

      Your positive attitide to rls is inspiring.

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  • Posted

    I've had RLS since I was a kid and I'm now 55. It's definitely miserable and exhausting. Living sleep deprived and working at a desk all day wears you down. I've tried a lot of things over the years. I've taken Requip off and on but I don't like the drugged feeling the next day. Lately I've been taking iron bisglycinate before bed. It usually helps but lately I've been drinking a mix of a tablespoon of barley grass powder mixed in about 8 oz of water and 8oz of Bolthouse green goodness (a mix of fruits, spinach, and other veggies). I drink it about an hour before bed and take 25 mg of the iron. I take another 25 mg of iron just before bed. So far it works every night without other medication. No more getting up to take extra hot showers or stretch in the the middle of the night. Hope this helps. 

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    • Posted

      Oh wow another iron bisglycinate junkie. I love it. Actually it's love hate. I would love not to have to take the iron. I wait to see if I have RLS before taking but many nights these days I do have. What I would love is a site wide experiment where people find a natural dopamine ANTAGONIST such as 5htp or melatonin and take by day to build up their dopamine receptors. Supposedly intermittent fasting, anaerobic exercise and uridine mono phosphate will all build up receptors.

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