Post Support for RLS

Since having RLS. I've basically been told that sorry you can't drive anymore, career over..

Taking this a bit further I am sure I am not alone in thinking this, but there is no where to go for Post Support following diagnosis of RLS. For me it is Scary, being reliant on loved ones for transport and finance.

What benefits are we entitled to? Who can help us put our lives back on track? There is support out there but very difficult to find.

Am I alone in thinking that in the main we are a minority group and if we had dimensia or epilepsy or similar there are places we can go that understand and can guide you to cope with the practicalities, offer support and advice for partners.

For RLS there is nothing that understands the condition or offer pathways to support.

Is this something people would find useful? I am happy to start investigating if I am not wasting my time!

6 Replies

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  • Hi VinceFW

    I am sorry that due to RLS you have been told you can no longer drive which follows on that your career is over. That is such an immense thing to take on board. You are correct when you say that we are a minority group and struggle to get heard. We also struggle with GPs not being knowledgeable about RLS. There is this forum, FB and the RLS-UK charity to help us:

    rls-uk.org/

    Perhaps you could contact the chair or vice-chair of the charity with a view to discussing what you could do to help in any way, if you feel this would be something you would wish to do. I am a paid up member of the charity and am looking forward to attending the AGM in London in early September. I went along last year and found it useful to meet others with the condition and to listen and learn from the guest speakers.

    Kaarina

  • Hi VinceFW

    The link to the FB Page is:

    facebook.com/RLSUK

    Kaarina

  • Hi Vince have been looking over your past posts and see you have been having a rotten time of it.As far as I know thete is no Post Support available specifically for a rls diagnosis, I have had it for over 30 years and have never even seen a neurologist it was diagnosed by my GP(I am in uk) and have only ever tried one med which was mirapex.Yes it is scarey when you are mo longer able to work and have to rely on others , I tookearly(very early!) retirement but this was on grounds of another condition I have so I do get a small, actually miniscule pension.I am still able to drive an automatic although I know at least one member who had had to have her car adaptednto steering wheel controls, However it is the tiredness with you rather than foot controls so don't suppose that will help in your case.On the benefit s question it seems unlikely you would get any help based on income but you may qualify for job seekers allowance contribution based but citizens advice probably best to advice you there, PIP which has taken over from DLA may be worth trying for as it takes into account how a condition affects you rather than the condition itself .Yes I agree RLS is very misunderstood by many including the medical world and is very trivial sounding yet can have a profound effect on a persons life.I think one of the reasons for this is because it is a condition that affects people differently and with a wide range of severity, Some have very mild occasional symptoms , others severe constant symptoms. I am sure many sufferers would benefit from some help as you say regarding work and family issues, RLS UK is the only support that I know of in UK, Thete may he may be more but I not heard of any, I am sure any other help you come across would ve helpful to others, I kmow Job Centres used to have stafv to help those with disabilities back intobwork but I don't know if they still do. What treatments are you currently on and how much sleep are you getting at present? I wishnyou well and hope your situation (somehow) improves,...kim

  • So sorry you have been left by the wayside. I have had RLS since I was a child. I'm now 52 and I was diagnosed with Fibromyalgia in 2004 but had it way before that. Anyway I take Opana ER and it has helped with both. Don't know if it would help you as everyone is different but it's worth checking into. I know how depressing it is when our independence is taken away from us. I was a mess. RLS is more widespread than you'd think as with lots of other diseases. I think it would be great to form a support group. I know that it's very hard to go it alone. Plus really only others who suffer with it can really relate to what you go through day and night day after day. xxx Mitzi

  • This is a tricky one. We are all aware that there is a lack of knowledge amongst GPs and even some neurologists about RLS. RLS UK are trying to spread awareness of the condition amongst the general public and medical professions. However, we are a small charity run by a small group of volunteers. We do not have the manpower or funds that the larger charities do. I hope this will change over time. I think this is why this forum is so useful and well used - because there is a lack of information and support out there.

    RLS UK does have a Helpline offering support and advice but I appreciate that you are looking for more than that. I suppose that having to stop driving as a result of RLS is relatively unusual but we have certainly had some similar queries on here before. For example, about employment rights and benefits.

    Everyone's symptoms, treatments and medical histories are so different that I think it makes it even harder to treat. Even in America where a lot more research is being carried out, the cause of RLS is still not known for sure.

    I know someone who is looking into Pathways for RLS and I will ask them if their project covers the type of support you mention. In the meantime, any research you carry out will be appreciated. Perhaps we can put it on the RLS UK website, put it on the forum or publish it in our members newsletter.

    With thanks and best wishes

    Rosie Braidley - Vice Chair RLS UK

  • Thanks all for your posting. I am finding out new things all the time. This forum does a great job in getting people together.

    My "Vision" is to provide a service that signposts sufferers of sleep disorders to organisations that can help them. I am finding out loads already.if the support mechanism is in place then I would hope that sleep centres would embrace the idea and something could be offered at the point of diagnosis.

    Thorough having suffered depression, I have found some useful organisations, such as the Suffolk well being centre who offer counselling, the shaw trust who help disadvantaged people find new work and Suffolk a Family Carers ( who I am goung to be volunteering for) who offer support to family members who care for others by signposting Carers to organisations that can support them. I hope to find out more interesting connections as time goes by.

    I am claiming ESA and applying for PIP, although not a kings ransom and well below what I am used to my income being, helps a little.

    I suspect I will have to broaden the concept out to cover all sleep disorders to gain support from sleep centres.

    But maybe, just maybe something positive can come from this condition!

    I will keep you posted, I first need to move the project from a concept to a plan and then get working on developing it into a support system.

    Am I barking mad or is this a good idea?

    Regards

    Vince

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