Hi - after 16 months of chronic and acute pain, that came on suddenly out of nowhere one day, (inside my privates, pelvic area and lower back..) I spent 11 months of these spent on Fentanyl patches and then (due to losing 2 stone in weight and multiple other AWFUL side effects) switching to Buprenorphine 8mg.. I have just started TODAY on Oxynorm 5mg tablets - one or two every four hours.
The chemist was VERY concerned about this level of medication (she is new and din't know me or my history) and REALLY unnerved me. I feel pretty woozy and a bit sick - though this is day one. Can anyone give me any helpful advice? Hopefully, nothing that is going to make me panic, as I live alone - and feelings can really consume me, dealing with this, on my own in a one bedroom flat.
I am worried as OxyNorm is meant to be REALLY addictive...? But surely - if the pain lessens, I can switch back to buprenorphine and then taper down? Unfortunately, the pain is showing no signs of lessening anyway. There are NO appts for a pain management clinic in my area.. they will contact me IF one becomes available. Though I am due to see a Neurologist (finally)!! at the end of April.. as possibly, (2 Osteopaths think) it could be Pudendal Nerve Syndrome.. but I'm a bit unsure...
Could anyone describe the symptoms of Pudendal Nerve Syndrome? I seem to have them all but I CAN sit down - it is more painful when sitting and leaning forward to type on my laptop as I am now.. and I find myself rearranging my position alot if just sitting down talking to someone - I end up trying to adjust my position so I am leaning right back - the weight on my shoulders of a chair with a back, lessening the weight on my privates... could this be Pudendal Nerve Syndrome?
It is worse for me often when walking any particular distance or standing. When it first happened I felt like my insides (which permanently 'sting' like broken glass up there) were hanging out.. however MRIs reveal nothing! So it is not a female hernia, STD, Endemetriosis.. any tips on what Pudendal Nerve Syndrome feels like would be really welcome. As I said, I am finally after 16 months, going to see a neurologist at St Barts in London at the end of April - and wondered if there's any particular questions I should ask - or anything special I should make sure I tell him.. I also have majorly increased urinary frequency -and am constipated. How attractive!! Glad this isn't a dating site.
Any advice on OxyNorm vs Buprenorphine very appreciated - and also Pudendal Nerve Syndrome... thank you!!!
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I also feel REALLY nauseous - is this normal? I had ONE 5mg tablet at 2pm - and now it is 5.30pm.. I'm really nervous about taking too many - when should I have another one.. tonight? Or should I leave it until tomorrow?
Oh poor you, it sounds awful! I would write down all the questions you've asked here and take them to the consultant. Could you ask the osteopaths what they mean by pudendal nerve syndrome & why they think you've got it? I saw an osteopath & he was very good at explaining why certain bits of me hurt and how all the anatomy fitted together (in fact I learned far more from him than I did at uni).
I don't know anything about oxynorm. I have had similar reactions to tramadol - felt really sick & dizzy & just dreadful. It was quite frightening. If you continue to get side effects you should speak to your GP, or it's out of hours could you call NHS Direct.
Yes - thank you, it does - one or two, every 4 to 6 hours - so I've had my second one. I'm suffering withdrawals from the buprenophine, which I wasn't really expecting..
Sometimes, without dwelling on self-pity - I just can't believe any of this is happening. My life used to be 100% normal.. whatever 'normal' is - well, it was normal by comparison to my present reality which is almost like living the life of a 70 year old..! anyway - hopefully things will feel better, when my body adjusts to the new meds. I wonder if anyone else out there has experience of buprenorphine and OxyNorm??? Thank you for your support.
Hi, first of all, find a new chemist, you don't need to be interrogated every time you fill a presciption.You're dose of oxy is a low dose and you have nothing to fear from it.You will find the side effects wear off after a short time.I have been on oxynorm for 8 years and I currently take 100mg 4 times a day, 400mgs daily so I hope you feel better knowing your dose is low and safe
thank you - I certainly do feel better knowing that. That's very helpful thankyou. I just wondered - as every one says it's SO addictive - do you wake up in the morning CRAVING it? Do you have to take it throughout the night? I just wondered as before I've always been on patches or slow release meds.... thank you in advance !
It's sounds very much like what I have, though I have been told that I have neuropathic pain, which can affect any part of your body. I have pain like yours, burning usually. I had this pain before I had chemo after an operation for ovarian and endometrial cancer. After the chemo the pain was much worse and I was confined to bed as it was totally impossible to sit. Some days the pain wasn't too bad, but some days I just lay in bed on my stomach and didn't move. I was prescribed Gabapentin which worked initially, but after the second time I had OxyContin 15 mg twice a day as it was slowacting plus the Gabapentin - 900 mg three times a day. I have tried to cut down, but the pain gets worse. It is nearly three years since this started. My symptoms are different in that walking is no problem and often helps the pain. I come back from a walk sometimes with no pain and this can last for several hours. Sitting is the worst though I agree that sitting forward is the worst. When the pain is too bad I have to go to bed even though this doesn't make it go away it's just marginally better lying down, reading and listening to the radio to try and relax. Stress does make it worse though doesn't cause it.
I wouldn't worry about taking painkillers if they help when it's impossible to live with the pain. It makes life more worth living and enables us to plan doing things like going on holiday and visiting family including three grandchildren.
My pain is also cyclical. Some days are great with little or no pain and others are unbearable and I end up spending long periods of the day in bed. This happens although I take the same amount of painkillers every day. I also have liquid Oxynorm to take as I need it.
I hope this helps. It's sometimes just good to know someone else is in the same situation.
Hi, reading your post is like you are describing me. I have been to osteopaths, physio, London specialists, I'm now being told I just have to manage the pain. I've been like it for 4 years & I want to know if anyone with pudendal nerve entrapment or piriformis can tell me of anything else I can do? Or any specialist in Essex/London area? I've had a pain block injection into the piriformis which released a bit of pain but really hasn't done anything. Please can I have your advice?
It certainly does.. thank you! So sorry to hear of your pain. Mine too comes and goes - with no rhyme or reason. Though, am I right in thinking that cancer precipitated your pain? I do hope you feel better soon. Thank you for the advice re painkillers- I can be guilty of making the pain worse by feeling guilty and worried about the painkillers. There is an element of enjoyment to them - which is obviously the opiates, in conjunction with relief from the pain - and this makes me worry that I am an addict. Though everyone says to me to worry about 'coming off' them - when the pain has gone - and at the moment, the pain is as bad as day one. I'm only 36. Have no children - and am worried that this is consuming my 'child bearing' years.. and also makes finding a boyfriend difficult.. how on earth do I tell potential boyfriends about my 'dark secret'?!! I can dress myself up, and on occasion, go out and meet people.. but then they don't see the next day, when I'm stuck in bed and continually wearing my pyjamas!! It's very lonely being in such pain. I miss working. Silly things. Going to Topshop, catching the tube.. being happy it's Friday - rather than not even knowing what year it is!! Sorry for moaning... it is v nice (not that I revel in others' misery) ! to find and hear of other people going through similar difficulties. I wish you well on your road to recovery! x
I have pudendal neuralgia and I would say the best thing for you to do is visit the pelvic pain network who have lots of info on this and a forum with fellow sufferers. Also if you go onto the pudendal hope website they have a wealth of information and a list of specialists in the UK (there are 2 in London I think, one in Mancester and one in Bristol who I saw recently).
If there is any chance you have this then I would say try to see a specialist in this field asap as it is so unheard of and the sooner you start on the correct treatment path, the better. I would also add please don't think too far ahead into the future, the best thing is to see someone who knows what they are talking about and then you can have a plan of action and be in control. Since I have done that my pain levels have decreased. The worst thing of all is the fear of the unknown. I really hope this helps you. Good luck and take care.x
Hi, I have had exactly the same pains as you have described for the past 13 years, and never been diagnosed . I have had been poked and prodded, scans, internals and a laparoscopy. I have been on that many different tablets over the years that I can't remember half of them. I am now under the pain clinic and have seen my consultant who felt all round my stomach the left side was very tender, he then asked me to sit up, he felt my lower back at which time I nearly shot off the bed in agony. He didn't say exactly what was wrong with me except that my spine isn't straight and that I have to have a series of epidurals, and put me on some more tablets lycrica . xx
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