Hello, my name is Julie and I have just joined.
I have been taking Ropinirole since being diagnosed with Restless Leg Syndrome in 1991.
This has, of course, increased in severity over 27 years and I am now at my wits end as I can neither sit
or lay to relax. I start work at 4am and finish roughly at 9am 7 days a week delivering newspapers in the
countryside. Its a nice job but I just can’t do it anymore. I wait until 4pm to take the Ropinirole which
eventually will let me lay down and sleep (takes roughly 2 hours of pacing). I am so tired. I am 60 years old but can’t retire until I’m 66.
I have been to our GP on numerous occasions to tell them how bad it has become and how its taken over my life. I cry a lot and that just isn’t me. Our GPs just trivialise it all telling me they don’t know know much about it. I have so many other symptoms that they just won’t listen to.I am going to list my symptoms now:
Every morning I feel sick. I don’t exactly vomit because there is nothing in my stomach to expel but
the sicky feeling can last for 2-3 hours.
I have internal tremors which feels like there is a little engine running inside me.
My muscles from my abdomen to my toes will go into huge very painful spasms and stay that way for upto 3 hours. The abdomen spasms are the worst. As I type this, standing up I am in a lot of pain in my lower abdomen and I feel two rock hard lumps on either side. these will disappear eventually and go soft and more comfortable. My thigh muscles will also go into spasms closely followed by the muscles each side of my shins. My knees will be next and then I can’t walk. It feels like a wedge is being driven deep inside each knee joint. I cry. Ropinirole switches all this off eventually.
I cannot gauge my steps and frequently stumble. When I think I have lifted my right leg high enough (3 inches) to walk over a hosepipe then realise I haven’t and fall. Then cry.
I walk into things and just think I’m clumsy but I never used to be.
I have osteoarthritis in my lower spine and the pain I feel here is nothing compared to the spasms. My
restless legs ALWAYS start in my lower back.
The doctor occasionally allows me some codeine otherwise I take huge amounts of Nurofen which doesn’t help. I also spend a small fortune on Ibruprofen gel which does nothing either.I thought a relaxing massage would be good but only lasted 3 minutes cos I couldn’t lay still. I apologised, paid the lady and went outside and cried. The last time I went to the hairdresser which was March this year She had to cut my hair while I stood up and swayed and moved about. I felt stupid.
This week my spasms have hit my neck and shoulders and fingers. I haven’t told the doctor because he can’t be bothered to listen.
I am in so much pain all the time in one area of my body or another that I do not relax all day but save my 4mg of Ropinirole for when I need sleep before work. You see the Ropinirole not only switches off the symptoms but switches me off too. So my life is ….I walk 19 hours and sleep 5. Im exhausted.
Do you think any of this could be a precursor to Parkinsons???
Any reply I will gladly take on board. Sorry its lengthy and I’m sure I missed stuff out.
Thanks in advance