This is my second posting, so sorry if it seems incoherent.
To the point, RLS is ruining my life! I exist getting through each day as best I can as I never have any energy. I shan't go into all the details as I did this in my previous posting.
On Monday I went to Papworth RSSC with a visit to my specialist.
Now I believe I have the best of care available, probably the best anywhere in the world.
This makes me fortunate. However my RLS is something that they are struggling with.
When I was first diagnosed, it was great. There you go sir have some cabergoline... Job sorted and by the way would you like to be part if a trial for a new drug for RLS. ( incidentally I didn't complete the trial as I was found to have central sleep hypopneas as well)
A few years later, without a by or leave, sorry sir we can't give you cabergoline any more the side effects are too severe. ( basically it apparently has a tendency to increase compulsive behaviours such a gambling! Damn, if only I had read the side effects I could have been a wealthy man or at least had a lot of fun)
So I had a drug that worked, now withdrawn, then put on Mirapexin which was hopeless, my wife moved into the spare room, and the tiredness increased.
After complaining, I was put on Ropinirole.. I'd like to say that was about as good as a chocolate teapot, but that would be being unfair to the teapot.
This was worse .. The Ropinirole made my head fuzzy and I felt permanently like a zombie.
So then I was told the neupro patches would be better.. No, things deteriorated, I became desperate and asked for a sleep study.. Which happened last October.
The results confirmed my suspicions, my tiredness has gotten worse. Apparently now the same level as a narcoleptic !
So to add to the mix I was put on Gaberpentine as well as the patches.
Well my tiredness is incredible.. My limbs always ache and feel heavy, and I have put in weight and developed fatty liver disease.
So after having the doses played with, I am advised not to drive.
Incidentally most of my career has been as a sales manager, now impossible as I can't drive.
My career is over, to the point my current employer is suggesting retirement on the grounds of ill health! I suspect that would spell the end of any employment possibilities!
Financially I would not be able to afford my house.
So last Monday I visited Papworth again with my wife, who kindly took the day off work to make sure I got there.
I explained about the history, the effects this has on my life and my families life.
I also asked about the available treatments as I am becoming increasingly desperate!
The answer he gave is something I want to share, because it helps the understanding of RLS to its sufferers. "RLS affects different people in different ways, the symptoms are individual. We have a selection of drugs we can try, but cannot guarantee success. All we can do is keep trying"!
So I take this to mean that although RLS would lead you to believe it is one ailment..and one treatment .. This is not the case. There are different varieties.
Ok why is this so important. Because I read so many recommendations for a particular drug/treatment being posted. I know the people posting are trying to help, but this could be dangerous! The drugs are generally mind altering narcotics! So please don't try drugs unless prescribed by your specialist.
But it is also important to note, that for us sufferers, if you do get a treatment that works you are the lucky ones.. I suspect for the rest of us RLS is something that we will have to live with, and deteriorate with. Ultimately bringing an increasingly desperate life, possibly resulting in premature death!
Sorry if this seems dramatic, but , contrary to its frivolous sounding name RLS is a major issue, that destroys lives.
So I am now back on just the Neupro 4mg. I know it will not work and I believe the next stage will be drugs from the opiates.
I am loosing weight now, however I probably now don't have enough calories and this has depleted my energy further. I am trying to get into an exercise routine but getting motivated is tough with such low energy levels. But, do I wish to let fatty liver disease get the better of me! I can't be sure there is a direct link between gaborpentine and FLD, but my doctor seems convinced.
So for me, it seems there is little reassurance. But if is knowledge that is good.
And please, please don't try remedies unless agreed with your specialist, you could be playing Russian roulette.