Linking conditions

Hi I'm new here but a long term severe RLS sufferer. I also have Fowler's Syndrome, which is a neurological bladder condition, and have an implanted Neuro transmitter in my back.  When I saw my Consultant Neurologist he said he had heard of a link between the two.  Has anyone out there got this?

The condition is chronic urine retention due to lack of signals from the brain to the nerves which control your bladder/bowel.

I started on ropinarole which initially worked but augmentation set in, then put on the patches, which were useless, and now on pramepexole which are keeping my rls under control.

Please please insist on seeing a neurologist, one who specialises in movement disorders, as at last, somebody knew what I was talking about

8 Replies

  • Hi Pennyfarthing, l read your post with interest. I had previously not heard of Fowlers Syndrome. It sounds tough to deal with on top of the RLS as well.

    I think the lack of response to your post is more to do with the community being unfamiliar with this condition, rather than a lack of interest.

    I have both RLS and Hyperhidrosis of the hands and have come across one or two others in the same boat.

    It would be great if there were others in the same situation, as the forum is very supportive and it's always good to know you are not the only one with this or that symptom/reactions etc.

    You are spot on with your advice ref seeing consultants who understand the condition. I personally have seen four separate "experts" only one of which l felt really understood RLS. 

    Good luck going forward.

  • Legsandmore, I had hyperhydrosis of the hands,had an op for it over 20 years ago so no longer a problem. You may already know about the op but just incase you don't it went by the fancy name of a Bilateral Thoracic Palmar Sympathectomy! ! ...Pipps x 

  • Hi Pipps, l also had the same op in 1997. What a coincidence ! Just out of interest, do your hands ever sweat, even just a little? Sometimes when l get very overheated my right palm will sweat just a bit. In theory it can't, but once in a while it does.

  • Hi Legsandmore, no my hands ÑEVER  sweat now!! Following the op I had some compensatory sweating on my back for a couple of years and I used to get a strange sensation as though I was sweating  (but actually wasn't ) when I would eat . fortunately that all settled . What a strange pair we are with our sweaty hands and restless bodies LOL XX

  • I had really sweaty hands for as long as l could remember. School was a nightmare, my teachers back then seemed to have an obsession with children holding hands! It really came to a head in secondary school when l was expected to do sewing, needle craft and knitting. I simply could not do that kind of activity as the material, thread, wool all got soaked. I also found it impossible to write with a fountain pen and ink, as the paper would get damp and the ink would run.

    I remember one teacher going mad at me in front of the whole class, it was so humiliating. My mum took me to the GP who said l was "highly strung" and needed my nerves calming down. He prescribed some medication for me. He said l should take one of the little blue pills whenever my hands were troublesome, which was pretty much all the time. I carried the pills around in an enamelled pill box in my blazer pocket.

    It was only later that my parents realised that l had been given Valium and l was popping them like Smarties at the age of 13. Needless to say that period in my education was very laid back. I can laugh about it now, but actually it was pretty awful.

    It wasn't until l was in my 30's that l realised it was a recognised condition and took the decision to have the surgery.

    l too get compensatory sweating in my feet, which my poor hubby describes as radioactive.

    We are indeed a strange pair or is that unique ?

  • Hi Pennyfarthing,

    I just typed Fowlers Syndrome into the Search Box at the top of the page and there are quite a few postings that mention this syndrome but they are scattered in different forums.


  • Hi pennyfarthing,  i have been dealing with my own RLS problems and so not been on here so much.

    I have never heard of Fowlers syndrome. but i doubt it is linked to RLS.   Yes both are neurological but from different parts of the brain.  Just as Parkinson's and RLS are both neurological but both different conditions.   It seems you are just unfortunate to have both RLS and Fowlers' syndrome together.   As Kaarina has said, look to see if there is a HealthUnlocked forum which can give you support for your Fowlers syndrome.  :)

  • In 22 years I have never heard of Fowler's Syndrome being connected to RLS. it is most likely a co-morbid condition. As much as we would like to blame poor old RLS for a lot of things, we just cannot. We can have several different neurological conditions at once,  but as far as I know, and I have discussed this with a prominent international RLS expert/specialist in the past and his opinion is no, they are not connected. But, that is of "as now". Who knows, we need a lot more studies done and funding those are a big issue.

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