Help for RLS

[wildlegs]

I’ve been taking Tramadol for my RLS for seven years now and it really works. But now we moved from Florida to Wisconsin and the doctors here won’t prescribe it. This is my third day without Tramadol and I’m going crazy I know there are other things out there but who has one that really works for them. I’ve got to try something or my nights are going to be terrible. Any and all help will be appreciated.

[Heatherlss]

So you've just been forced to stop taking Tram abruptly? That is ridiculous. More than anything doctors needed to help you with the transition. No med should be stopped abruptly let alone opiods. I am not sure what to advise you about this. Perhaps, you could try taking DA or Pregablin in the meantime till you sort yourself out with Tram. I hope you were not on too high a dose.

[Hidden]

OMG, I'm sorry to hear about this. What a crazy situation, if you've been prescribed a medicine for something that works for you, then it's hard to see why you can't continue to be prescribed it.

Certainly you shouldn't be left to discontinue a medicine cold turkey and not be offered anything to replace it. That would appear to be neglect or malpractice.

Some of your worsening symptoms may be due to opiate withdrawal effects. In which case they might improve with time.

I realise that the US Health Care System is radically different to the UK system. There might be some comparisons however. Although I understand that there are some differences between states in the US, I believe drugs in the US are licensed by the FDA and hence, I guess that licence applies in any state? In the UK there is one licensing body and licences apply across the whole UK.

However, here there are medicines which GPs General Practitioners, the equivalent, I believe of your PCPs, Primary Care Practitioners are banned from or unwilling to prescribe. However, here, "specialists" can prescribe them and additionally instruct a GP to prescribe.

Perhaps this is something you could explore. There are some good RLS specialists in the US.

The other possibility is that, if you've not previously had any, there are other medications that can be used for RLS. I believe that opiates were originally used for RLS some time ago, but fell out of favour when it was discovered that other medicines e.g. Dopamine Agonists could treat it effectively. These others, came to be considered the "first line" treatments for RLS. "First line" meaning the first drugs that could be tried. Officially, in the UK opiates are now only recommended to be used if the first line treatments fail.

I understand that some experts in the US now do consider an opiate to be the first line treatment, but there is no consistency in this.

Hence, if you still cannot get an opiate prescription. then you could try an alternative.

There two main classes of non-opiate medicines used for RLS, dopamine agonists (DAs) and alpha 2 delta ligands. Based on my own experience and what's now known about the long term effects of a DA, I'd suggest NOT starting on a DA.

I'd suggest in this case try an alpha 2 delts ligand. Gabapentin, Gabapentin enacarbil or Pregabalin. We tend to use generic drug names in the UK. I believe in the US these are called Neurontin, Horizant and Lyrica.

You could also ask for a benzodiazepine, or a "z" drug these help particularly if you have insomnia e.g Clonazepam or Zopiclone.

Additionally, it might help if you explore some of the factors which are known to make RLS worse , (including other medications) and some of the vitamin, mineral and other supplements which may correct any deficiencies you have.

I hope this helps

[YodaDog]

As usual Manerva has given an excellent reply. I would just add that there is a RLS Foundation recognised RLS Quality Care Center in Minnesota - the Center for Sleep Medicine at the Mayo Clinic in Rochester - not sure if visiting them is an option for you or not? Or if anything they might suggest/recommend would be accepted in Wisconsin. Just thought I would make sure you know about them.

[dklohrey]

I have had RLS for about 30 years. My doctor prescribed Requip, 2mg, for me initially. I now take the generic, ropinirole. My dosage was raised to 3mg about a year ago. It is beginning to lose its effectiveness (augmentation?) so I will probably have to go to something else. I do consider myself lucky to have had the drug effective all this time. I have also found compression socks to be a good addition to my treatment. I wear them during the day to relieve the RLS symptoms and take the socks off at night. There is some residual effect, with the RLS symptoms relieved, allowing me to get a decent nights sleep. Triggers for me are alcohol, sugar and , of course, caffeine. I am also beginning to suspect that carbohydrates could be a problem, so I try to eat them in moderation (pizza and beer is a killer and I love that combination). Good luck. I know what you are going through, as early on, I would find myself leaning against the bedroom wall, trying to sleep standing up. I know it sounds crazy but you get desperate.

[bedith6]

Manerva has said it all as regards medication, but this is something I use and I have found it to be very effective. I have a hand held electric percussive massager, it is a powerful one not the silly little thing you sometimes find in chemist shops. I use it at the first signs of the horrible "feelings" and it often gives real relief. I do have severe RLS so I know what you must be going through and the massager won't take the place of drugs but it can help to relieve the awful symptoms. Just give it a try. I bought mine on-line because as I said you need a powerful one. Good Luck

[Madlegs1 in reply to bedith6]

I have and do the same.! 😀

When first mentioned on this site, I did get some funny 'looks'.😝

But a good hard massage up and down the legs really does help.

Cheers.

[LanaCSR]

That is horrible! In the meantime until you can get the meds worked out, order some Kratom online. It is a lifesaver for me!!

[Madlegs1 in reply to LanaCSR]

Which variety and where from? And what dose!?

[LanaCSR in reply to Madlegs1]

Anything from the red variety is good for pain and/or RLS. Also, Maeng Da is very effective. I use an online seller in the United States, but there are a bunch of kratom sellers out there. I have heard that online is the best place to order from as opposed to going into a local store. As far as dose, I started with a half teaspoon mixed in just enough orange juice to get it down. It is sold in capsules and loose powder. I get the most immediate effect from the powder. Hope this helps!

[Madlegs1 in reply to LanaCSR]

Thankyou.

[Joolsg]

There are 3 healthcare providers in Wisconsin on the rls.org website. I think the US group keeps a list of doctors who are knowledgeable about RLS and will prescribe low dose opioids.

The doctors are:

Jitendra Baruah in Milwaukee - [phone]

John Edwards in Appleton 920 954 2551 and

Cami Matthews in Madison ( no number given).

Hope you can see one of them and get your tramadol.

It’s barbaric to refuse to prescribe a treatment you’ve been on for years without help to reduce it slowly - and they should be aware of all the studies on low dose opioids for RLS- Johns Hopkins and Mayo Clinic have great info- maybe print off and take with you

mayoclinicproceedings.org/a...

[wildlegs in reply to Joolsg]

Thank you for the tips. Two nights ago were my first without Tramadol and it was horrible. From 6pm to 3 am I was a twitching machine. I must have put on 50 miles walking around the house. I see another doctor on Monday maybe I’ll get something to help until I can get my Tramadol back.

[Meritus]

This is advice for anyone on here who has not heard of some of the natural treatments. I discovered Aesculus (horse chestnut drops) from A.Vogel and take magnesium citrate capsules with vitamin b6. None of these have completely driven rls away but I now have some nights free of it and others where it is less troublesome. In the last month I have added CBD oil by Vitality, 1200 mg strength which helps relaxation and sleep. 300mg did not work for me.

I have also drastically reduced my salt intake. An online book from the USA that I down-loaded a few years ago advised that we all have too much in our diets, often in manufactured food and drinks. I used to love olives, cheese and salted nuts. It was this book that advised the magnesium but I found that the levels recommended, though they worked quite well, were too high and drastic for my constitution!

I also found foot clamps called Restiffic designed by a doctor who suffers rls, available in the UK online. Worn for up to an hour, these are also effective when the rls comes on before bedtime.

They can be worn in bed but I found them too cumbersome. They are very expensive but have a money-back guarantee.

I have never used any of the prescription drugs as I am not prepared to put up with the extreme side effects and relative ineffectiveness.

I hope this helps. But why is there not more serious research into the cause and treatment of what appears to be a modern scourge, driving so many to distraction? Thank God for this forum!

[Graham3196 in reply to Meritus]

I dont think this is a modern scourge. First diagnosed in 1640 I think but I might be exaggerating. My memory is not so good because of the RLS you know.

[Meritus in reply to Graham3196]

I clearly made an assumption because I had never heard of it until I started to have it around 3 years ago! Thanks for putting me right. I have been too busy searching for a remedy to research the history of it. You'd think there would be more information after 400years.

I have today re-ordered 1200mg CBD from the same supplier and a skin spray also. Was virtually free of rls last night so must be doing something right!

[Graham3196 in reply to Meritus]

Glad to hear somethings working for you!!

In another demonstration of how slow the system can work. Iron is now considered to be very important but the original discovery of this was in about 1955 It just took about 60 or 70 years for this discovery to filter through to become a treatment. Doctor Buchfuhrer now recommends increasing iron as the first action to take in treatment of RLS.

How can this happen?? Is it because RLS patients are not annoying their politicians frequently enough to ensure money is available for research? Then you have to ask why are not 5% of our politicians suffering from RLS and so noisily promoting funding research out of a purely selfish motive??

Research being done right now wont help me much but it would be nice to know that someone is working to help my daughters as they age.

What can we do to get reports on progress in research and making sure that money is directed towards "our" disease. Its hard to find time just to stay in touch.

[Graham3196]

Phone your old doctor and ask them to email you a prescription or even do some friendly deal with them to post a few tablets to you until something better is done.

Depending on your relationship with your Florida doctor ring and ask them to phone a doctor near you and try to negotiate an arrangement that gets what you need.

Even try a public hospital. There must be someone in Wiconsin with an ounce of common sense.

Move to a better Place!

[wildlegs in reply to Graham3196]

I did just what you mentioned and he sent a perception to a nearby pharmacy for 30 days worth. I’m still

Looking for a doctor who’ll prescribe Tramadol in Wisconsin but feel better about it now.

[Graham3196 in reply to wildlegs]

in 30 days you will find some sense.