Health Organization for Pudendal Education

Well, what I am finding is that I just don't want to swallow the darned pills! I do know this is completely stupid. I've had my pain well controlled since the summer with this stuff, and I've been increasing my activity level, which has been just wonderful. Last night I took the tablet in the end, 3 hrs late, it is lunchtime now and I still haven't taken my morning tablet. I am increasing the other things to compensate, more CES, more TENS.... coping at the moment.

I can't split the pills because they are slow release and if you cut them in half and break the coating, they will release much too quickly and that's not a good idea. HerMajesty has been told that withdrawal can be varied, from nothing at all, right up the scale. I'm hoping that I'm one of the lucky ones - I do tolerate this stuff very well, I don't even get constipated with it at all.

Neurontin - that's a brand name for Gabapentin, yes? I did try gabapentin but the side effects were too much for me, I felt like a zombie, head full of cotton wool, did not feel safe driving. Also constipated, which as you say is a very bad thing and causes more pain. I stopped it over a few weeks and had no problems doing so. Sorry that it wasn't the same for you, I guess it just shows that we are all different and can react very differently. The withdrawal symptoms that you had do sound extremely scary.

I shall get my head round it, never fear! And on Monday I shall ring the Pain Clinic and see if I can talk to the nurse consultant about all this.

Hi calluna, I've read your posts with great interest. I have just joined this wonderful site today and have been soaking up the information willingly given by people like yourself. I was prescribed with Tramadol last week, but have only taken a couple of pills because of my fear of becoming addicted to them. The instruction leaflet makes I believe, a fairly low-key attempt to make this risk apparent. When the pain gets very severe I find it hard to resist taking one though, I guess it's all a bit of a trade-off really, and I did feel drowsy when I took them, but there is a limit to the amount of pain we can take. I can't remember what strength the ones are that I have, I'm at work (sitting on one cheek), and the pills are at home, but I wasn't aware of the 'slow release' aspect. Are all Tramadol slow release do you know?

Thinking ahead of all possible outcomes, do you know if there are any Surgeons who carry out the Operation in the UK to free up the nerve? I have only seen reference to Ops being carried out in France and US.

Kind regards,

John.

Calluna,

I have just noticed this thread today and I am anxious to know how you are doing. What did the nurse consultant have to say?

John,

tramadol comes as immediate release and slow (extended) release. A month or so ago someone posted about PNE surgery in London. If I remember correctly the surgeon's name was Prof Carlstedt. More information for UK patients is on pelvicpain.org.uk and don't forget you are just across the channel from France.

I think I've got my head around this now! I have not yet called the Pain Clinic, but I've been doing a lot of reading, and a lot of thinking. I've realised that I had an emotional response to an emotive statement from the GP - who, after all, is not my usual GP and doesn't know any more of my history than he was able to read in the few minutes between patients.

There is a big difference between being addicted and being dependent. I am dependent on tramadol, I am not addicted. I found this article very helpful, and I have cut and pasted the following table, the two columns are supposed to be side by side but I cannot get the formatting to behave -

Addicts
Addicts take drugs to get high and avoid life
Addicts isolate themselves and become lost to their families.
Addicts are unable to interact appropriately with society.
Addicts are eventually unable to hold down a job.
The life of an addict is a continuous downward spiral.

Pain Patients
Pain patients take drugs to function normally and get on with life.
When pain patients get adequate relief, they become active members of their families.
When pain patients get adequate relief, they interact with and make positive contributions to society.
When pain patients get adequate relief, they are often able to go back to work.
When a pain patient gets adequate relief, their life progresses in a positive, upward direction.

My pain is well managed with my current programme. The Pain Clinic may want me to change my medication in the future, and I'm ok with that - so far, everything they've suggested has helped, after all.


JeanieC - I'm doing well, thankyou! I really shouldn't have let myself get so upset. But hindsight is wonderful, isn't it?

Johnd.h - I think you should go with the medication that has been prescribed to you, and I hope that you feel reassured by the table above, as I did. I've been taking tramadol at or near the maximum daily dose for 16 months now, and I am not addicted to it. It does help my pain in that it takes the edge off, and that is a very valuable help for me. One thing that the Pain Clinic has made very clear to me - it is much easier to control pain by staying on top of it, rather than letting it get going full blast and then try to stop it, if this happens then you need much higher doses. So better to stay on top of it. Pacing is incredibly important, too. I have learnt.... And acceptance is a big part of this, the section on this website about Emotional Aspects is very good indeed.

I would expect that you are taking 'ordinary' tramadol. These are 50mg capsules usually. I expect you will find that the drowsiness wears off - when I first started taking them I did feel very knocked out, but this didn't last longer than the first fortnight. The slow release version was recommended to me by the Pain Clinic, they told me that they have found it much better for controlling neuropathic pain as it provides a more continuous level of medication in the system. My GP had not prescribed them before, and was interested. There are two versions, one lasts 12 hours and the other is 24 hours - I am on the 12 hour ones and for me they have been an improvement over the 'ordinary' tramadol.

There is someone in London who is doing surgery - I remember the name Andrew Baranowski, but I could be wrong about that. I have been told that surgery to correct my problem wouldn't be possible, but I have realised that the doctor who told me that may not know about this surgery in any detail. But in the meantime I am hoping the nerve will heal!

I am actually going to try to wean off tramadol in December, because of my 3 meds it is the one I am least sure is helping me at all. I chose December because I am too busy this month to deal with even mild withdrawl. But will try to remember to let you know how the withdrawl goes.

People must react very differently to medications. I tried Tramadol once and aspirin was more effective. And then to say a morphine patch is the only thing that would be as effective is crazy. I had an overdose when I took just a little bit of morphine. The gang is right. Keep taking what works and don't change. And when they said if it's still working on the pain, you're not needing more then before you first started, you're not addicted!

Kate

JeanieC wrote:Calluna,

I have just noticed this thread today and I am anxious to know how you are doing. What did the nurse consultant have to say?

John,

tramadol comes as immediate release and slow (extended) release. A month or so ago someone posted about PNE surgery in London. If I remember correctly the surgeon's name was Prof Carlstedt. More information for UK patients is on pelvicpain.org.uk and don't forget you are just across the channel from France.

Jeanie, thankyou so much for your reply to my questions. I guess if I am referred to a Pain Clinic that they might then put me on to the slow release Tramadol. Great to know that there might be PNE surgery in London if I need it, and of course as you say, France is just over the channel.

John

Calluna,

I read the article you posted and thought it made a lot of good points. No-one who needs pain medication to function should be made to feel ashamed like you were by a poor choice of words by a doctor who did not know your history. Plus all the other techniques you use such as acupuncture, CES, and behavioural therapy should prove that you are doing your utmost to control pain by natural methods. I am very glad you are doing well again.

Best wishes,
Jeanie

Thankyou Jeanie, I think that whole website has a lot of good articles, but that particular one is very much to the point - I don't think that any of us should be labelled as being addicted when all we are doing is taking our meds as prescribed.

I see from your signature that you have had your surgery, I do hope that you are recovering well.

calluna,
thank you for the excellent post on addicts versus people taking pain meds for pain.
so validating.
bravo.