My situation is that I have been on Oxycodone for 18 months and It has been fantastic in masking my restless legs (and arms) since I developed Augmentation. I have been able to lie and sit whenever I want to!
However it has recently been established that I am deficient in B12 so have started regular B12 injections. My doctor said that RL are are classic sign of B12 deficiency. After 30 years of suffering and trying almost everything I was dubious.
Bot low and be bold! 3 weeks into the injections I am finding as the Oxy dose wears off the RLs dosnt come back, (it always did before the jabs started).
Consequently, I am tapering down the Oxy dose and have reduced from 30 MLS to 15 per day in just a few weeks. It seems like a miracle.
Does anyone else have experience of Starting B12 and that helping their RLs? Also of Oxycodone and RLs?
Many thanks to all in advance for your thoughts and experiences.
Jane ๐
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smilingjane
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Just read your spec Hetherless so see its iron. What an awful situation you've had. I do hope the infusions are working for you.
Best wishes
Jane ๐
This is really great. I'm so glad that the B12 works fo you.
If you've been deficient of B12 for some time, you were probably suffering macrocytic anaemia, which may not be as noticeable as iron deficiency anaemia.
If that's so then as well as your RLS improving you may feel better in other ways e.g. more energy. less tired etc.
This is great information! I too have been struggling with RLS (RL Everything, actually!) Started with my feet, calves, then spread to hands/forearms, and now seems to be in my spine, shoulders, neck, torso - all of me. I have been on Oxycodone now for 6 years for Chronic pain and Osteoarthritis. The Oxycodone has helped the RLS as a side-benefit.
A couple of times when I ran out of my prescription and had to wait until the next day, I was in absolute agony. I don't think that people without RLS really understand just how unbearable it is. I had my B12 levels checked, and they were found to be normal. I do take the oral B12 that you melt under your tongue. Unfortunately it hasn't had much effect on my RLS.
Being on an Opioid for any reason is frightening, given the current sentiment that it is a bad drug. If I am ever faced with my Oxycodone being taken away, I would not be able to bear life. I think I would have to request doctor-assisted suicide. I am glad to hear that B12 has helped you. You must be on Cloud 9.
And to anyone suffering with RLS - Opioids work magic. You don't need a high dose. For me, it completely stops the RLS sensation. I have mentioned this to both my Neurologist and a Neurosurgeon I saw. Both doctors said that I should keep taking it. It really is a good medication. Very few side effects, if any. Opioids have been used for centuries. Pain patients do not abuse this drug, so I think it is horrible how doctors are refusing to prescribe them for chronic pain.
I am really sorry to hear about your RL, Debbie. Your situation seems was as bad as it could get.
I totally understand the gravity of your situation. I myself 18 months ago was at a point where I didnt see a way that I could carry on. It had spread to my arms and was with me 24/7. There was no respite. I couldn't in the end sit or lie down.
It was because I presented at A and E one morning that my GP realised how bad it was and secumned to my request for Oxy. Without it I doubt I would be here today.
I had my B12 checked recently and it was declared ok.
However when I saw a new private endo recently he went through my b. test results from last 6 years which I emailed him before the visit. He noticed that I had been extremely low 3 years ago. Turns out that although results recently looked ok it was because I had been supplementing.
He said that because I had had gut surgery way back that my body wasnt absorbing normally so needed injections and daily sublingual.
I dont quite understand myself but apparently higher b12 test levels look like your okay but some people still need injections regularly, if they dont absorb through the intestines.
I'm not out of the woods yet, it seems to vary a bit some days. Last night for instance my RL came back but not in aggressive usual way.
I read yesterday that around 40% of sufferers of RL are helped by B12 so not a panacea for all. Its also about ferritin and apparently iron reaching the brain.
I absolutely agree thati t is outrageous that people suffering are being denied a drug that can stop the tortuous debilitating disease that is RL.
For those like ourselves that are effected throughout the body, (you more so than me), life without a drug to alleviate is a living hell.
And it gets such bad press which of course is affecting prescribing.
I have a small stash for those days when the script is delayed. ๐
Out if personal interest Debbie what dose do you take?
I currently take 20 mg 4 times a day. I have been on this same dose for about 2 years and it really works well to keep things calm on the RLS front and also the chronic pain.
My diagnosis at this time is Fibromyalgia, Osteoarthritis, RLS and PLMD, Carpal Tunnel, Cubital Tunnel, Spinal Stenosis (Cervical and Lumbar), Anxiety and Depression, Hypertension and Occipital Headaches. When I first saw my current family doctor, he asked me to fill out that pain questionaire where you mark in where in your body the pain is located. He laughed when I handed it to him because everything was colored in except my right knee.
Thankfully he is a good soul and takes pretty good care of me. Of all the things that I have wrong with me, I think the RLS is the most horrifying. I literally want to crawl out of my skin. I find that hot baths with epsom salts help, but as soon as I get out of the bath, the creepy sensation in my hands and feet come back almost instantly. Thank Goodness for Oxycodone. It provides almost instant relief. If anyone else is struggling with RLS and cannot get relief from all the other drugs they recommend, definitely ask if you can try a small dose of Oxycodone at bedtime. It really works, at least for me.
Sevear RLs is a frightening disease to live with and I am so glad for you that you have relief.
Is your Oxy extended relief? I take or did until the last few weeks 15 MLS per 12 hours which was just enough. It started to wear off after 10 hours though. Now I am attempting to reduce, I have the liquid. I take this every 6 hours which is much better cause it works almost straight away and seems to almost last the 6 hours.
I am a bit down today, cause I thought the B12 was working quicker than I think it is so am sticking on the 22 MLS per day of Oxy.
Mind you that's not to say that I am so happy I have it to use. I dread to think what life would be like without it.
A couple of questions if you dont mind?
I have chronic fatigue. Do you think the Oxi is hindering that?
NY other question, do you find you get constipation with it?
It's really helpfull to find someone to talk to and share that understands ๐๐
I have just started taking b12 and.vit d and I seem to find my rls has eased , whether that or ropinirole kicked in I am keeping my fingers crossed these vitamins are helping frightened thou to talk too quick not sure what strength I should be taking
I have ben having B12 injections for years and it has made no differnece at all to my condition. Do hope it continues for you though.
Many years ago I had a test that proved that I did not absorb enough iron so been on Ferrous Sulphate ever since and now have B12 but makes no difference sadly.
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