Vietnam Veteran : I'm a disabled... - Restless Legs Syn...

Restless Legs Syndrome

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Vietnam Veteran

Fredanderson profile image
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I'm a disabled veteran. They took my Tramadol away and put me on Gabapenton and ropinirol. This does not work for me at all. I have tried Patient Advocates. Where else can I turn.

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Fredanderson profile image
Fredanderson
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8 Replies

Hi and welcome Fred. There are still avenues to explore:

rlshelp.org

check there for treatment options and with you living in the states if you are lucky enough to be in a forward thinking one you might be able to get cannabis or Kratom legally - both of which can be very useful (particularly the Kratom).

There are a number of drugs that can exacerbate RLS - many antidepressants and antihistamines for example. Also many of us here are getting benefit from taking Gentle Iron. The more we know the more we can help.

Don't forget the search bar to find lots of info. Take care.

If you go to the rls.org website I think they have a printable resume which is designed to be presented to your medical advisors (you may have to join to access it, I'm not sure). It might be worth taking that to your next medical appointment. The medical textbook by Henning, Alan, Early and ?? (I can't remember the exact name but something like Clinical Treatment of RLS) can also be a useful tool in trying to persuade a medical practitioner of the need for opiates in severe cases.

It may be that you need to give the new regime a few months to convince your Primary Healthcare provider that you need the opiates.

Inadequately treated rls is nothing short of torture and I really feel for you. Definitely worth trying stretching exercises and using distraction techniques when the legs strike. It is sometimes difficult to summon the energy/resolve for such tactics but they can be remarkably effective. Raising iron levels (if they are low - you need a serum ferritin test to check - they should optimally be over 100 so make sure you get the actual figure) is also very effective in a majority, though sadly not all, sufferers. Finally, I would second Raff's suggestion of Kratom - I find it very effective against symptoms and you can get it without prescription in the US. Good luck.

Fredanderson profile image
Fredanderson in reply to involuntarydancer

Thank you very much. You have been very helpful.

Bossy50 profile image
Bossy50 in reply to Fredanderson

Yes you've had really good advice here, especially about printing out the information for professionals...I did that and my Doctor became much more helpful. Also you could consider changing your Doctor and saying that the RLS is painful as well as distressing. My Doctor was wary of prescribing Opiates as the use for RLS is what they call 'off label' as it's not licensed to treat RLS..it's only supposed to be prescribed for pain. I tried the cmbination you're on and it didn't work for me either. In fact I've tried everything and the only thing that works for me is Dihydrocodeine. A lot of us have found that opiates are the best way, I was on Tramadol for a couple of years..it worked well and then it made it much much worse. They call it 'Augmentation'. You can search RLS.org to find out about that. Your Doc needs to understand there is no one size fits all for our problem...most of us have had to try many different drug combinations to find the right one. Kratom is good but like Opiates it is addictive. I dont care about being on Opiates because anything is better than RLS. Print the info for professionals out and do give it to a Doc to look at...they can't argue with the world's leading Neuro experts on RLS have to say !!!!!!

Retren profile image
Retren in reply to Fredanderson

Fred anderson 10Dec you might try looking at the RLS information on Nightwalkersit reports on the various methods and physicians which are researching RLS and the advances and medications being used.My neurologist wants my next issue as she mentioned a new experimental medication that is being worked on which may be published soon.I unfortunately have not got my issue recently but I think it would be on line.I live in U S and assume you do as well.We can all sympathize with you this condition is truly diabolical.Have you tried eliminating any foods which might exacerbate the problem as I find anything with gluten preservatives colourings and so forth make it worse.Of course we are all different so one has to experiment all the time.

It is frustrating and actually frightening when medication that you know works for you is withdrawn. I find it hard to understand how physicians can be so apparently heartless. It’s bad enough to suffer from this awful condition but to be denied medication that can make it bearable ... it really beggars belief.

It is well worth trawling through the various responses on here as there are lots of helpful suggestions. I am amazed at how effective distraction is. My Rls is fairly severe (not as bad as some of the very worst cases but not too far short of them) and even so I can often get two hours or more of sleep if I spend a while doing puzzles online when the legs get bad. The distraction has to be very intense to work though - for some reason doing puzzles on paper - sudoku for example - just isn’t enough. For me online chess is extremely absorbing but I imagine a good video game would work well also.

Fredanderson profile image
Fredanderson in reply to involuntarydancer

Well small amounts of Tramadol work very well.

sookie53 profile image
sookie53

Hi there did you try pramipexole, if not you should, let me know. Ropinirole did not work for me, it made my legs go nuts got off right away went back to pramipexole

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