FDA Statement on Opioids : The FDA have... - Restless Legs Syn...

Restless Legs Syndrome

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FDA Statement on Opioids

Joolsg profile image
22 Replies

The FDA have released a helpful statement to distinguish between dependence and addiction to opioids. For those of us dependent on opioids to control our severe RLS, this will be useful to print out for our GPs.

painnewsnetwork.org/stories...

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Joolsg profile image
Joolsg
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22 Replies
Madlegs1 profile image
Madlegs1

Thanks, Jools.

What I've been pointing out here for ages- good to have the FDA actually coming out with it.

It has been shown that the opioid "crisis" has actually forced many people to hard drugs from the street, because they have been refused prescriptions by scared doctors.

Thanks again.

Joolsg profile image
Joolsg in reply toMadlegs1

I know. Certainly opioids are not suitable for people with breathing issues or with history of addiction/abuse but studies have shown they work well for refractory RLS and can be used for many years at low doses. I’m looking into iron infusions and faecal transplants at moment. Interesting articles on ‘sooper poopers’ with great biodiversity in faeces. If transferred to those with auto immune diseases the results are encouraging.

Fun times!

Madlegs1 profile image
Madlegs1 in reply toJoolsg

Utterly disgusting 😲

Although, when I had sickly, newborn calves, after a difficult birth, - I would smear some of the mothers faeces into the calves mouth, to get the antibodies into it, in case it didn't get the colostrum quickly enough!

Good luck to you!😂

in reply toMadlegs1

You have the strangest hobbies Madlegs1, Wood carving too boring?

What sort of word could even be used to describe some one who smears excrement on young animals mouths

Beastialorofaecalpaedophilia might be a good start. :p

Madlegs1 profile image
Madlegs1 in reply to

Way to go, Raffs. Have you applied to the OED for this years new word inclusion??😂

You're a shoo in for word of the day!😎

Mind yourself

in reply toMadlegs1

I'd need to find more than one participant in the activity to have the Noun accept - and that is one search I don't think I'd want to engage in.

Madlegs1 profile image
Madlegs1 in reply to

Might get your hands dirty??😲

Unhappygirl profile image
Unhappygirl in reply toMadlegs1

Can you briefly tell me what theFDA said about opiods, l do no not have a printer or how to look for FDA or what it stands for. Sorry if l sound thick

Madlegs1 profile image
Madlegs1 in reply toUnhappygirl

Just click on the link, in blue writing. It should take you to the article.

Good luck.

Unhappygirl profile image
Unhappygirl in reply toMadlegs1

Many many thanks xx

LotteM profile image
LotteM

Thank you, Joolsg. And thank you FDA. This is meaningful, coming from the very stringent FDA.

Hear, hear. Spread the word!

About F**ling time. I've had more than enough arguments on here over this. It should be stabled to every Dr who denied a RLS suffer an opioid as they hadn't learned this.

In fact if I was an EU diplomat I might say there is a special place in hell for them ;) :p

martino profile image
martino

Thanks very much!

Jumpey profile image
Jumpey

Many thanks Joolsg.Some sense at last! X

Jelbea profile image
Jelbea

Thank you so much Jools. As I have been unable to take anything else due to severe sensitivities I have been on codeine for many years and now oxycodone. I was very upset by the posts recently especially so since I have nobody I can discuss this with since losing my husband and soulmate. Since finding this forum I have felt well supported by you all but this matter worried me so much that I felt I would not be part of the forum anymore. So often on this site people say "we are all different" and I feel that someone making sweeping statements should think how this affects those of us who have no other options. I have spent a year in constant pain from sciatica but in that time I have kept my oxycodone for the night to deal with RLS and it helps me to sleep. The medics suggested taking it during the day also but I did not want to raise the dose so just put up with the pain which is not easy.

I was so pleased to see your post and again thank you

Joolsg profile image
Joolsg in reply toJelbea

You are welcome Jelbea.

Opioids were the first medication used for RLS by Dr Willis in the 1600’s and most RLS experts will prescribe them for severe RLS and/or where patients have tried all other meds.

funnyfennel profile image
funnyfennel

Thanks for info. Does it mean I might be able to get my repeat prescription without requesting it every month and getting anxious when it is late....will ask the doc. I only take a tiny dose of shortec along with the prami, but every month I have to request it, and they will not give it early...quite mad. Is this the same for everyone?

Joolsg profile image
Joolsg in reply tofunnyfennel

Sadly yes- most prescriptions are for a maximum 2 months in UK even though we need them constantly! It’s unfair I agree but I think it’s a budgeting issue more than anything else.

funnyfennel profile image
funnyfennel in reply toJoolsg

I would just like them to provide a week in advance (1 month supply) then I would not sometimes find I have run out. As we all know the stress makes the RLS worse. They wait until the day before I need them...???...

In fact, after speaking to the pharmacist at my practise, she has given me a buffer allowance of 7 pills, in case the prescription is late......Whew, yet the chasing up of the rest still goes on....good luck everyone.

1stdoginohladdie profile image
1stdoginohladdie in reply tofunnyfennel

I have to physically go to the doctor's office for a paper prescription and handcarry it to the pharmacy. Crazy The name of the FDA article is

FDA: Pain Patients Dependendent on Opioids are NOT Addicted

1stdoginohladdie profile image
1stdoginohladdie

I just finished reading the 17 pages of this report from the FDA. It's about time everyone comes to their senses. Those of us suffering from pain of all sorts, RLS being one, have a right to be pain free whenever possible. Mainly, this article can educate doctors and give them a reality check. I'm taking the article to my new primary next month and try to get him on board. My current primary cut me from 2 Oxycodone 5=325 (5 mg oxy and 325 mg tylenol) a day to 1. Now I have to determine if I want to be pain free in the early afternoon or at night. Hang in - we may get help sooner than we think.

funnyfennel profile image
funnyfennel in reply to1stdoginohladdie

Thats awful, so sorry.

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