I have Chronic Pan and RLS. Both are treated with some of the same medications, Opiates are one. My doctor got me an appointment with the Pain specialist for the Oregon Health Sciences University Knight Cancer Institute (Phil Knight, Nike Shoes) .I mean I got Lucky with my Insurance, Oregon Health Plan (Medicaid) Insurance the NHS pay physicians and other providers a tad less I believe, and taxes all enough so the UK does have Universal Coverage, or close to it, The HewSA has lifetimes to go to catch up.
Doctor's and clinics here exclude Public Pay patients. Getting an appointment like had Friday afternoon is very rare.
Pardon my French, The Doc and I had a rare, for me, one on one respectful talk, a regular BS session. It was very enjoyable. The result of it is He doesn't approve of using Morphine alone to treat both conditions, Chronic Pain and RLS. I thought, I hoped, I begged, that Morphine would lessen the intensity of my RLS Not So. I'm back on Square One Morphine Norco, and Lidocaine Patches. Yes, All, The Patches Still work Very Well.
Get yourself a Box of Enda Pharmaceuticals Lidoderm Lidocaine Patches 5%. On this Side of "The Pond" they're available only by prescription, on your side they're probably OTC. Here uncovered by Insurance they can cost over $400 a box. If the mfg participates in a Discount Program, they're $77/box I haven' tried any of the non prescription ones available on AMAZON. I have a small supply of mine left,
Now, I have a Lidoderm patch on my leg .I can go to sleep with a flexing and clenching leg minimized, well hopefully I can Off to Bed Bub
Morphine helps, but it isn't the solution for me. I know Alcohol is regarded as a stressor. I do much better after a shot of Rum Aye Matey
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BBGuess45
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Hi BBGuess, the UK does work different from you all across the pond regarding health care. We pay for it while we are in work, so much taken from wages. If you become sick or out of work, all health care is free. When you retire like i am, its all free.
So we can mostly get any med without too much trouble, only if "they" consider it too expensive like the neupro patch we can have a bit of a fight to get it. altho my doctors let me have it without a fight. So, depends on where you live in this country on how easy or hard it is to get what you would like to try. We call it the Post Code Lottery.
Anyway, i asked my doctor about the Lidocaine patches and he declined me having them. Nothing to do with expense, just said they were not suitable for RLS. So, can i ask what you were given those patches for, was it for RLS or another complaint.
Your doctor should prescribe for you for the persistent back ache you've been complaining about., and You have been making quite a racket.
When my lower back is killing me I have a friend or a caregiver peel the plastic backing off one and put it on my lower back just to the right of my sacrum, or Shhh, I inappropriately peel the plastic covering off one and place it 'portrait' length along the side of my left thigh. I'd remind him/her that there is nothing appropriate about RLS. It's idiosyncratic, has no cause, thusly no easy simple conventional. Ask him/her to take a chance, eat a peach, and treat you. What does your doc care if its 'appropriate' or not You're paying for it/them, you're suffering, and you pay his/her bill, or NHS does for you.
I'd find another doctor. What does the the sawbones think. That you're planning on doing? supplying Lidocaine patches to the black market?
Havent had the chance to find out if i am a Lidocaine Patch Junkie yet. LOL
I have just changed surgeries, cant do it again. We can only go to a surgery in our catchment area. Not like in the USA you can fire your doctors and find another.
Elisse, Fire sometimes yes. To find the right doctor means a lot of hunting. Emily is my doctor now. O am so fortunate to have met her, I'm medically well educated which intimidates a lot of doctors...a sign of age, meaning lack of familiarity with Tech, with patients using Forums like this, and Portals. A Portal is a communications interface with your doctor and his/her clinic, ordering medical records, list of medications and a Medical History, plus a messaging interface to and from your doctor. digital between appointment appointments. Quite Cool Your right doctor should be able to use The Portal. Many doctors are too stuffy to communicate with mere patients. I'm sure you know what/who I'm describing. I've left the practices of several uptight docs, that couldn't just talk with me one on one, relaxed, shooting the shit is the phrase. Talking the Talk refers to the Vietnam War, but means what it says literally.
Emily and I can write or sit in the exam room, Talking the talk and shooting the shit medically easily and very relaxed I enjoy her and likewise.
The NHS is portrayed as inflexible, procedurally. Does it change. Can it change? can you request a new doctor ever? or are you ask for a new Primary Care Physician. Here, I'd call my insurance for a list of Primary Care Physicians whose clinics are accepting New Patients, then go and applying for an appointment.
I send links to Emily pointing out new ideas on RLS or whatever condition for her to review. can you do that with your doctor? They are awfully busy with their Business of being Dr. So and So, Office Managers and Physicians equally,
They don't have the 'free' time to research like we do. I try to help the Doc help me. I print articles out and bring them with me, and most important, I bring a numbered or bulleted list with me of things I want to discuss. During the 15-20 minute visit, ya wanna git yer money's worth. Oh Yeah.
Elisse, the patches work for me, start hunting for professional references to them working. I can't be the only person,
Educate your doctor. NHS, your insurance, might not pay for them for RLS, then buy a few, or complain about that awful back strain you have from when you fell twisting your back. Hope these ideas help
Thanks BBGuess. Seems some doctors what ever country you live in can inflexible.
I think that the patches "Could" work depending on your symptoms - those that are dopamine deficient may "not" get relief while someone who has muscle pain or
skin pain (like neuropathy) may get total relief. Don't forget that some diagnostics are incorrect because the doctor doesn't really understand RLS. They might lump all leg pains into RLS because they don't know where else to put it. I do believe that fibromyalgia is overdiagnosed in the same manner. Primary Care doctors and some specialists are just too exhausted and overworked to have the time to truly understand RLS...
I do believe you 100% that you are getting total and lasting relief from the patches
but since you do not know for certain if what you are feeling is the same as the next
guy or girl then none of us can say that it works for everyone. Lidocaine does numb
the skin and maybe gets down into other tissues of the leg like Muscles... but we are
not even sure if that's where RLS comes from. Short of giving an epidural which would
paralyze the entire leg, we can't say if it starts in the legs or in the brain... if anyone did really know that without a doubt, RLS would be a thing of the past. You are being heard loud and clear. Your idea is noble but most people are getting "more" relief when dopamine is added to the brain by pill form. Studies back that... there are so many places that are checked that the results cannot be changed or tilted in one direction or the other. The testing must take place under an outside party's testing facility.. they can come to the facility but it can't be Pfizer approving these drugs for the FDA or setting the disclaimer. That is independent but allows PFizer to use their own marketing department to " include" the truth in it's consumer rights bill.. Oh complicated, I know. I did a little bit of work in this not very long ago...
Thanks for contributing your thoughts and ideas. Maybe it will work for some. =)
in reply to
Yikes, you should know by now that RLS is nothing to do with our muscles. RLS is neurological, it comes from the brain.
in reply to
now don't "you" sound like the "lady who is expert on rls and l do believe that its You that he was talking about. You are so kind and a great teacher....with that said. Thank you. I stand corrected. : )
I am no expert on RLS. Any research on good websites will tell you RLS is neurological. RLS is either Primary or Secondary. Most have the Primary RLS, its genetic. We have some dodgy genes. Secondary RLS can be treated by a underlying cause.
in reply to
I had a brain fart. Simple as that. Thanks for the correction. You do know a ton about les and you do help people out so.......you are. The one.
Oh, and not everyone can take the dopamine meds. They dont work for everyone or some cant tolerate the side effects or they end up with augmentation. So, people try to look for alternatives. Thats what BBGuess to trying to say. He has found what seems to work for him by using the Lidocaine patches, my doctor when i asked wouldnt let me try them. Someone else's doctor maybe will. Just saying.
in reply to
I too, cannot understand how Lidocaine patches work for the urge to move the legs. I can understand pain, I can understand un-tensing the muscles but the legs will still want to move.. there is nothing in lidocaine that would stop that urge.
I am wondering if perhaps BBGuess stumbled onto a diagnostic test to rule out true RLS which is that urge to move. I would say that if you used Lidocaine for the legs and it brought relief that you probably have something else... not RLS...
Some do get full relief from taking Iron.... Iron and dopamine.. standing up and walking.. dopamine has to be the carrier of the iron (useable iron) and walking helps blood pump - all of the nerves run down the spine from the brain....to the tips of your toes...there is no lidocaine in this picture.
What is it in Lidocaine that could possibly relax the muscles? It's just not there for me. Lidocaine numbs the small nerves ( skin ) Can it really do more than that?
I dont know either why they work for him. Didnt you say in a comment on here the other day, you used them when in hospital.. ? You said they worked for you but it wore off...
No, the patches work All the time, BUT their use for RLS is undocumented and Insurance won't pay for them. Also, Elisse, didn't you say that your NHS doctor wouldn't prescribe them? They aren't cheap. OMD's prescribe analgesic patches that might work in conjunction with Acupuncture. Worth a try, remember Chinese Practitioners like cash, not checks or Plastic. I'd recommend giving Oriental Medicine a Try. I've done well with it 2500 years of medical and herbal practice is longer than Western Medicine. Barefoot Doctors can do some amazing things
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What can I expect from Neurology Referral?
augmentation on neupro+Gabapentin. should I switch to a different dopamine agonist? All that’s helping is cannabis. 
anyone got a cure for RLS
