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Behçet's UK
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Addicted to Opioids

I’ve been on Durogesic Patches 50-75mcg for over 10yrs now. Take OralMorph for break through pain or when withdrawing from Patches in last day before changing patch.

My Rheumy wants me to come off Opioids. He’s going to try referring to Poisons Unit to get help from them.

I’m just worried what do I take for pain relief once I’m off Opioids!!

What do you peeps use for pain relief.

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OMG I've been going through the same thing and it's been mega hard. I was on the fentanyl lozengers 200mcg about 6times a day and was told that they were killing me.... I was devasted as you can imagine but there was NO ONE absolutely no one to help me with the withdrawal symptoms. I felt really betrayed by everyone and even the behcet's doctors etc. I am struggling come off the fentanyl patches which I try to stay on 50 but the day before I need to change the patch I get really bad withdrawal symptoms so I pop on a 25 aswell, but then take the 25 off when I use the 50.

It's OK for the doctors to take you off these but they forget that it was them that gave you these drugs and it was for pain but you still need an alternative. I haven't had any help from any of the doctors at all apart from my gp who has upped my gabapentin. I'm on 2x 400, 3 times a day as well as all the other tablets. But I also use alot of heat patches and lidocaine patches which you can get from the gp.

The withdrawal symptoms are absolutely vile, I've never experienced anything like it and I still get the feeling. I really hope you have better support than what I did... Good luck and take care!

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I’m so glad I’ve found a twin!!!

(In a nice way)

I also take Zoromorph for break through pain.

My GP wanted me to go to standard rehab with Alcohol & Drug Abusers. I declined as I felt they should pay for it privately as I didn’t put myself into this situation!!! They did. Without explaining it to me. I was 25yrs if she when started!

Very naive & un educated in Opioids.

GP refused to send me private & I refused to go to standard clinic where I would bump into local general public.

For an Asain woman I can get banished from the Community!!! 🤬

Why do GP’s put us in these situations & expect us to deal with it?

Why are they not liable?

Are we just pawn to them?

Trial & error?

I really hope you get the help. Pls ask your Rheumy to get you referred to Poisons Unit. I can get details for you.

Just dreading the withdraws stage. He’s told me it’s going to be a long hard testing few years ahead. 😔

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I can relate to all posts on opioid addiction. Apain specialist put me on Methadone--this was before biologics were available to treat Behcets. Lile a previous poster, standard deep sedation does not work--I need a general anasthetic.

After hip replacement surgery (needed because of osteonecrosis caused by steroids) I decided to stop taking it. Stopping Methadone after 10 years was the most difficult thing I have ever done. I weaned myself to a low dose and then just stopped. It took everthing I had to get through it--it was difficult, but I did it.

Ann, I have the same questions as you. My personality changed--I behaved horribly and did not understand it until I stopped taking the drug. As my pain doctor didn't advise me of the permanent implications of taking opioids long-term and the personality changes, I have lost a great deal. I can only hope that others may benefit from my experience.

All the best.

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So happy when I read posts like these. I may have to go on Methadone eventually to wean myself from Morphine. Dreading it. As my brother is a drug addict & I’ve seen him on Methadone + Class A drugs mixed.

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I love how you add on 25mcg then take off. I do exactly the same!!! Do you find you’re on a high on the first day, even sleep disappears!

I plan all my appts & seeing family around my patch day 1. 😔

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Do you live where you can try CBD and/or THC? I know of one autoimmune type patient who had such great results with weed (THC) when they visited Colorado they moved. This comes from a reliable professional source once removed from said patient.

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I’m from UK, so unfortunately not available openly! I do smoke weed at night to sleep (it helps a lot) A lot of ducking & diving🙄🤨 away from my children & family. Husband smokes with me 🤣

I will be using CBD paste when weaning myself off OPIODS, natural the better. I need the THC is needed for me to relax.

Wish it was prescribed like in the States. It’s another financial stain.

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Did that person have Behcets though, I know that CBD has very mixed success with inflammatory pain for many auto immune and autoinflammatory illnesses , does anybody know the effect CBD could have on Behcets ulcers?

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I’ve never had any issues with my ulcers. My inflammation pain does seem to subside soon after.

It’s prescribed to MS Patients in the UK for the Inflammation Pain.

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It is only very recently used for MS and certain types of infant epilepsy in the UK.

It is being tested for some other inflammatory conditions but there are very mixed results.

What form of CBD do you take ?

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Yes you absolutely right.

I use the oil, a friend makes it at home. So it’s a high strength..

Few drops under my tongue.

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I’ve been using CBD oil mostly. I don’t like smoking it as it harsh.

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No, not BD. Some form of arthritis I think. The speaker was legally refrained from telling that aspect. Autoimmune/Autoinflammatory

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CBD didn’t help much with my ulcers, but a 1:1 combo of a THC/CBD helped my stress which helped my breakouts. CBD alone helped my pain a lot and with less pain I had less stress but still had flares. But I’ve been in a constant flare now for a year.

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There are amazing “chronic pain” clinics in NHS run by Anaesthetists and other medics with psychologist support for patients. They do not treat you like an addict but want to help. I hope your GP/ team can refer you to one of these

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I’m being referred to Poisons Unit & Pain Clinic. Rheumy thinks a joint venture will help me more. A wider support network xxx

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That’s great. Just a shame about the name “poisons unit”!!

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I thought that too 😂🤣

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Pain management programs are mentioned in this link: nhs.uk/live-well/healthy-bo...

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