Behcet's Syndrome Society
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Pain

Hi ladies and gentlemen hope all is going the best it can get with our Bechet's. I should like to ring out what pain relive you are prescribed. I started on codeine phosphate but no joy then tramadol no luck diydrocodeine still not that good. Now I'm on zomorph slow release which is still a bit early to see the full effects. I just want to bve out of pain a little so I can play with Babylon the floor without struggling getting up or around she has only just learnt to crawl so very very upset. Im missing a lot because off always sleeping always in pain and I ring my body so I'll I'm in bed really early with headaches and joint pain which is not normal pain this pain is really bad in hip lower back knees ankles feet toes and elbows. I have been diagnosed with BD for years now and it us getting worst and getting me really down. I have 4 kids 3 in school age so just feel sorry for them. My wife has been a total god send she looks after my kids and me and I really thankfull to her. She is special having to put up with me keep being I'll sleeping and 4 kids I take my hat off for her. She has been my best friend and rock. I also been diagnosed with fiybro somethink.

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I have not been diagnosed with BD yet. I posted just above you. I was prescribed Vicodin 10/325 at 8 tabs a day then my doctor put me on methadone 20mg a day for pain also. I found great pain control at first with these medications then would build a tolerance and need more. The above are my end dosages. I developed hyperglesia from all the opiates for the past 10 years. Hyperglesia is pain caused by the brain wanting and needing more and more opiates to feel normal. I'm now off of everything except the last 10mg of methadone which is being tapered. At the time I needed these medications as I could hardly walk the pain was so bad. Now that I've come off most of them I am having severe neck and shoulder pain. I'm also exhibiting symptoms of neurological involvement.

My point is with any opiate take as little as possible and go up as slowly as possible to be functional. Over time you will require more and more to reach the same level. That's ok though. Just be mindful that pain relief often comes at a cost as time goes on I sure wish my doctor would have told me this when I started I would have waited to increase doses and prolonged my relief

Other medications I have tried are Lyrica, neurontin, Ultram. I currently take Aleve and Methocarbamol.

You didn't mention your dose. I hope it works for you. The best time of your life is when your kids are young and you deserve to enjoy it. Pain kept me a lot of great times with my children when they were young. Whatever gives you the relief you need to participate is what I would do if I had it to do over.

Christie

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Hi Pete11 Sorry to read that you are in so much pain at the moment. Have you had a review of your Behcet's and treatments lately? If not perhaps time to visit a consultant. Remember to keep a diary of the various pains and how things are affecting you. Please you have the support of a super partner. Good luck with finding some relief for the pain. Are you in the UK and are you seen by one of the Behcet's Centres of Excellence - If not would you like the details? info@behcetsdisease.org.uk

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Hi thanks for the reply. I have a appointment very soon with Prof in aintree Liverpool hospital. My wife is amazing and people on here are also great to talk to. Thanks everyone

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Really pleased you have an appointment coming up and your in good hands there. Good luck and best wishes.

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