B12 helping Restless Legs: My... - Pernicious Anaemi...

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B12 helping Restless Legs

smilingjane
smilingjane
β€’54 Replies

My situations 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, as I recently posted on this site, 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 that sometimes as the Oxy dose wears off the RLs dosnt come back, (it always did before the jabs started).

Consequently, I am trying to taper 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?

Thank you in advance for your thoughts an

Jane 😊

Related Tags Oxycodone

54 Replies
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Raising my ferritin levels helped my legs. I do find b12 helps painful achey hips and legs whilst trying to sleep at night.

smilingjane
smilingjane in reply to Nackapan

Thanks Nackapan, that's good to know

😊 What have you found the best way if raising your ferritin levels?

Nackapan
Nackapan in reply to smilingjane

Get a blood test first with full iron screen

Vit d ect

Ferrous fumerate was prescribed I actually bought a lower dose than prescribed as coukdnt tolerate it.

Spartane and solgar gentle iron.

Gp knows what i take.

She eadnt concerned about my ferritin level of 29

Its helped raising if tk 57

Taken a year as kept dipping?

I had a baseline if 68 before ill

Nackapan
Nackapan in reply to Nackapan

57ug/L

smilingjane
smilingjane in reply to Nackapan

Thank you Nackapan.

I will get that test at some point.

These things get so expensive dont they?

But, has to be done.

Thanks for your response and the info.

😊

Nackapan
Nackapan in reply to smilingjane

I get mine done on the NHS

smilingjane
smilingjane in reply to Nackapan

Well that is good to know. I will look into my Ferritin levels. Goid luck for you going forward.

😊

Nackapan
Nackapan in reply to smilingjane

Thank you and to you too

Hi,

Yes, my RLS virtually disappeared with b12 treatment.

Hi Sleepybunny

That's amazing! Really pleased it's worked for you.

Theres hope out there 😊

Mine is quite the opposite.

I became very addicted to Oxycodone & OxyContin (Hillbilly Heroin) as it's known in the states for 8 years.

The RLS I used to think was a myth, until I suffered from it myself & it's absolutely horrible so I'm pleased you've found some relief.

My RLS was caused by the Oxy when I was due a dose & is a well known fact that RLS happens when in withdrawal from Opioids.

Substances deplete essential Vitamins, especially B12 & I put my PA down to high dose long term Oxy.

Well done on reducing, carry on taking your time with tapering & please don't rush it. The slower the better as it will give your Dopamine levels time to adjust before each dosage drop.

Thanks for responding Richie.

I am wondering did your RL stop after you had stopped Oxy? I have had sevear restless legs for years and Opiods are the only thing that have got rid of them. In the end it wasnt just my legs but all over my body, there was no respite 24/7.

I have reduced to 22mls per day but cannot get lower. I really think the b12 is making a little difference. But RL is still rearing its ugly head. As the next dose approaches.

How did you stop Oxy and how long did it take? Were you given other meds to help? When you say you were addicted were you over using?

Do you mind me asking why you were originally prescribed it?

Thanks again for responding. Its good for me to speak to someone who's been there.

Jane πŸ€—

Hi Jane.

I apologise in advance for the very long, drawn out & boring reply 😁

I don't mind you asking at all. I was so very embarrassed & ashamed at the time, but now I will bore anyone senseless who will listen just as long as I can help prevent them getting to the stage I did, a "legal" drug addict with no help & almost forced on to street Heroin, luckily that didn't happen, but does now happen to many on a daily basis.

I posted a small part of my story on the Pain Concern group on here.

I was prescribed it for degenerative disc disease in 5 discs in my back & 2 in my neck caused by a heavy manual job I did for years.

I didn't suffer RLS at all until I was tapering off all the Oxy. Now knowing one cause of RLS is just one of many drug withdrawal symptoms, but obviously not in your case.

I know you'll find this very hard to believe Jane, but I was overprescribed at 800mgs per day due to my tolerance levels building up. After 8 years I was taking 1600mgs per day & should've died from the amount I was taking, all legitimately prescribed by my then Dr.

I have suffered other health problems due to long term, high dose Oxy.

I was turned away by 3 drug clinics when I was screaming for help due to them not helping those addicted to Prescribed medications. It's all down to lack of commissioning by the government I later learned & not many dr's are educated about addiction.

I eventually did get help & was put on Methadone which is what they give Heroin addicts.

I was tapering ok over the months but hit a brick wall at 320mgs per day & found it impossible to drop anymore as my mental health became severely affected by it.

I have been fortunate to never suffer with mental health till I became addicted to Oxy.

I've now been off Methadone 18 months. Been off Oxy 4 years in August & don't take anything for pain now.

The endless times I suffered withdrawal were truly horrendous.

The anxiety, depression & even attempting to end my life due to lack of help seemed like an endless deep dark hole I couldn't see a way out of.

I have learned so much from my experience around Opioids having gone through it, how they rewire neurotransmitters in our brain etc, especially Dopamine, & am now trying to raise awareness about the drugs we believe to be safe, just because it's prescribed. Which is why I say please take as long as you need to reduce your dose.

Even though I don't like Facebook, I started a group up due to lockdown 3 months ago, & not being able to do anything to support the many I know are out there.

Its called Opioid Prescription Addiction Support UK , there are 120 people on it already which sadly shows the problem it's becoming.

The Opioid epidemic in America that Oxy helped to start, now sadly takes up to 200 lives every day.

Many think it won't happen here, but they're very wrong.

Different countries with different policies but with ultimately the same end results.

When I was diagnosed with PA & since regular injections, everything has improved loads & still improving.

But the damage I did from all the Oxy will take a while to put right.

But having overcome the hardest fight I've ever faced, I won't give up.

Again so sorry for waffling on, but I have been known to 😁

Hi Ritchie

Thank you for the reply and I like long ... it gives me more info!!

What a horrible time you have had. You have come through it and your right, I cannot believe the strength you were on. And the strength you have portrayed to get to where you are

My GP wont let me go over 30 mls per day. This is the guidelines for Oxy for RLs in the UK.

Apparently, although I think you may scoff at this, there is little opiod abuse amongst those taking for RLs.

I can kind of believe that because RL can be so horrific that one doesn't want to risk the prescription being withdrawn, so I keep very carefully to the dosage.

I am hoping the Amitriptiline, (when I start at end of month) will help me to taper down.

I am aware though that we are at the mercy of things happening, it just takes a couple of days of taking just that little bit more and low and behold .... more is needed for the RL

I am ultra aware of the ease of sliding Imin to abduction. I grew up with a family member suffering.

I dont want ever to be in that situation.

😊

.

Thrones
Thrones in reply to Ritchie1268

Ritchie you should be so proud of yourself ,I’m proud of you what a sad sad story and how strong have you been to get through that,well done your fantastic x

Ritchie1268
Ritchie1268 in reply to Thrones

Thank you Thrones.

It was definitely an experience I will never forget. I know I have been very lucky to survive it, sadly many don't.

It's my passion now to try to educate about what long term, high dose Opioids do to us along with the other health problems they can cause.

Thank you

I have PA for the last 20 years and been having b12 injections. I too had RLS developed about 6 years ago. Tried all types of treatment but nothing seemed to works. However, about 6 months ago my ferritin levels were measured and found to be low at 12ng/ml. Started 210mg ferrous fumigate tablets and at long last my RLS has gone!

I found out that RLS can improve if you keep your ferritin levels about 75ng/ml.

But get your ferritin levels measured first (by NHS) as they can be affected by b12 and you do not eat to take iron if you don't needed.

High ferritin levels stop RLS

Hope this helps

Tony works

Thank you so much for that information.

I will definitely look into this, Nachapan too was helpfull.

This will be my next move ... and who knows, maybe the final link!

Thanks again and I hope your having a good weekend

Jane 😊

Showgem
Showgem in reply to smilingjane

I have struggled with extremely low ferritin levels for as long as can remember so this may have been a factor in my RLS. I also had deficient vit D when this and my vit b12 were tested for the first time at the beginning of last year, my vit b12 was only 58. Maybe a combination of all three!

I also take Nortripilene at night (I found amitriptyline made me feel hungover in the morning) I've taken it for many years after being diagnosed with fibromyalgia, it didn't help with RLS for me.

Hope your RLS improves for you too x

smilingjane
smilingjane in reply to Showgem

Gosh your B12 was very low. Poor you. Do you feel a little better now? The tablets you take st night, do they enable you to sleep? I have huge problems with sleep. And do you have something g to help with RL?

😊

Showgem
Showgem in reply to smilingjane

I feel much, much better thanks. I couldn't walk without support, I was in a very bad way. I'm hoping that I will still have improvement but I've other health problems as well.

I don't sleep well, I think the idea of the medication I take at night is that it helps me to "let go" of pain. I'm taking quite a low dose now.

😊

smilingjane
smilingjane in reply to Showgem

Do you gave oain relief through the day?

Showgem
Showgem in reply to smilingjane

Usually only paracetamol and sometimes ibuprofen, I used to have to take codeine so much less pain now.

smilingjane
smilingjane in reply to Showgem

I am really pleased to hear that.

Congratulations and I really hope you continue to improve.

All the very best

Jane 😊

Showgem
Showgem in reply to smilingjane

Thanks x

My restless legs have greatly improved with b12 injections

smilingjane
smilingjane in reply to Showgem

Interesting. Have they completely gone?

Not quite but I don't nearly kick my hubby out of bed any more πŸ˜‚

smilingjane
smilingjane in reply to Showgem

Ha! That's good to hear.

Can you remember how long it took for the B12 to kick in?

😊

It's been gradually, I've been on injections for 16 months. I had had these as well as terribly painful spasms and cramps all over which had got worse over years, all have greatly improved and I don't get the spasms at all now.

smilingjane
smilingjane in reply to Showgem

So do you think the pains and spasms were due to your body recovering from the lack of B12?

😊

Showgem
Showgem in reply to smilingjane

No, this was before my PA diagnosis, I believe they were from damaged nerves and muscles as they started to improve after starting b12 injections.

smilingjane
smilingjane in reply to Showgem

That is great!

Pleased it's working for you

😊

Liyaelize
Liyaelize in reply to Showgem

What form of B12 are you using. Thanks

Hi Liyaelise

Injections

😊

Thanks there's 3 types of B12. Which injections are you using. Is it Hydroxocobalamin or Methelcobalicum.

Blessings

Aha I see πŸ€—

It's the Hidro

Thanks 😊

Hi Lyyaelise

I get mine from Germany, it is called, Hydroxocobalaminacetat (German)and the packet has Rotexmedica on the packet, if you tap that into Google there are 2 or3 sites that come up.

I will send another msge in a sec when I've looked it up where U get mine from.

😊

Hi

I use Velsandap. (German company).

You can use pay Pal to pay which makes ordering easier because it autofill your details , As long as you have an Amazon account of course.

Please give me a shout or anyone on this site for any further advice.

Good luck with everything

Jane 😊

Showgem
Showgem in reply to Liyaelize

Hydroxocobalamin injections

Liyaelize
Liyaelize in reply to Showgem

Thanks so much. Please would you be willing to share the link to your product so that I know where to order from. I'm in the USA

Showgem
Showgem in reply to Liyaelize

I'm currently still getting them for self injection from my GP. I'm waiting to see another neurologist because I have nerve damage so I begged him for b12 to inject myself until I saw the neurologist (the nurse showed me how). He said OK but you have to space them out as you will eventually only get them every 2 - 3 months. This was as shutdown started so obviously everything has been on hold. I ran out and became worse again so begged some more.

I really struggle to go longer than weekly and I don't think he will continue prescribing them after this lot so I expect to end up having to source them myself.

There is excellent information on where to source supplies on here.

Fantastic so pleased for you, it’s a horrible affliction, I do sympathise as I have it myself.

smilingjane
smilingjane in reply to Kazania

Do you have medication that helps?

😊

Kazania
Kazania in reply to smilingjane

No I don’t think I’ve got it badly. GP’s are hard enough to see and talk to as it is. I drink Tonic Water and think it helps but mainly I just have to move about until it stops. But annoyingly it’s often when I’m tired and I just want to sit down.

smilingjane
smilingjane in reply to Kazania

I know, its sods law isnt it!

If it does get worse ever. (hopefully that will never happen). please make sure that you check with the experts on here before starting any drug treatments. πŸ˜ŠπŸ™

Kazania
Kazania in reply to smilingjane

Thanks for the advice. With B12 inj maybe I’ll be ok. πŸ˜„. Keep well.

smilingjane
smilingjane in reply to Kazania

You too πŸ€—

Thanks

Could anyone please share the link of the B12 Hydroxocobalamin in Germany spent ages trying to find it Lol. Thanks

Tap Valsandap into Google and that's your site When on the site tap in Rotexmedica Hydrocobalamanin and the product will come up.

Pay through Amazon pay and it saves you putting the details in. It autofill for you.

Hope it goes well.Jane 😊

Thanks so much

Your welcome 😊

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