Health Organization for Pudendal Education

hello to every one and thank you in advance for the halp you might be able to give me.
I am going quite insane with trying to keep up with what meds I am takinghow many, and what for , it is not an option to go back to my gp because if he wants he could remind me of my pain management which is quiet laughable.
I have suffered for 3 yrs and a bit seen everyone and done everything and now at last I have a referal to Dr. Barowonski. NHS
For two and a bit years I had no pain management and then two turned up ,neither of them knowing about each others commitment to me.
I learned that one was diagnostic and theraputic and the other was Pain control not looking for a cause just pain control..so I went to see both.
That could only be done once. I chose the diagnostic pain management and that is where I had the procedure from hell the unguided Transvaginal bilaterol
Pudendal nerve block which had no effect from the beginning....I have had some really bad days where lying down is my only saviour.I look around and see all the household jobs I have started but unable to finish because the pain has been so so bad.
I was taking garberpentin in the begining but changed to Lyrica 150mg x 3 and amytriptlyne 75mg at night along with paracetamol,
The pain manegement wanted me to higher this dose but I said that was high enough I couldn't drive myself anywhere, or go to the shops and was getting deppressed big time I mention cymbaltor/ Duloxotin...and he said it wasn't suitable for me and told me to take an extra amytryptlyne. I tried to get in touch with him because I was absolutly more useless than before, also making terrible spelling mistakes and forgetting things.
As it was difficult to reach my pain manager which I think is dreadful. I went to my new gp as seemingly me researching my symptoms didn't go down to well with 2 of the gps at the surgery .
One suggested he couldn't offer me any more care as I had gone behind his back. Well hey ho...I went to see my new gp at a new surgery and he prescribed cymbalta for me straight away...30mg after two weeks I was in even more pain, and spent most of ten days in bed I had no energy and was in terrible pain and just wanted to sleep .I managed to crawl to the doctors and told him all this and he raised the cymbalta to 60mg.
So he scrubbed the lyrica off my presciption ...something is not right here I feel because I cant stay awake and still in pain....I still wear the fentanly pain patches but they last only two days instead of three....can anyone unsramble this mess for me I feel I am taking the wrong stuff now and quiet worried as well as in dreadful pain to get up the stairs to the computor 9 stairs takes me twenty two mins something is not right thanks for listening from little mo

Hello again little mo

I am so sorry to hear that you are in such pain and having such difficulty. But I am glad to hear that you have your NHS referral to Dr Baronowski, that is excellent. Do you have a date for the appointment yet?

From my own experience, getting an appointment to see your pain management consultant does tend to take a while. It is always difficult to contact them. Remember that these people are usually consultant anaesthetists, they may work at more than one hospital and they are likely to be in surgery if they are not in the clinic. And in the clinic they are usually booked solid with patients. The clinics are not set up for urgent cases, they are about advice for the long term. If you ring and ask for an appointment, you should be seen in a couple of weeks. It really is best to go to your GP if you have an immediate problem.

If you could tell us what meds you are taking at the moment, and the dosages, I am sure that someone more knowledgeable than I am will be along soon and will be able to offer some advice.

From what you have said, I think that the list may be -

Fentanyl patch every two days
Cymbalta 60mg
Amitriptyline 75mg at night
Paracetamol - what dose by the way?

Is that right? Was there anything else?

And if I've got it right, your main problems at the moment are that you are still in considerable pain, and you can't stay awake.

Some thoughts - the fentanyl patches have a side effect of sleepiness. As you know, you are taking them more often than recommended - do you think that this could be why you are having problems staying awake? And do you think that you could be building up some tolerance to this drug?

You are taking the recommended dose of Cymbalta for neuropathic pain, note that this does also have a side effect of sleepiness. You are also on a moderate dose of amitriptyline, this could go higher if needed. But do remember that there is a side effect of sleepiness for this drug also.

Many people get pain relief with the combination of an anti-depressant and an anticonvulsant. You are on a very strong opiate, plus two anti-depressants, but no anti-convulsant. So that might be something to think about - there are alternatives to gabapentin and lyrica.

Please don't worry about the housework. Rest when you need to, take your time, and be kind to yourself.

By the way - did you ever get the chance to read the book I suggested? - this one - I am sure you would benefit from it. I am re-reading it myself at the moment.

THANK YOU Calluna
No I didn't get to read that book...maybe I felt I wasn't ready for it at that time or some other crisis happened, but looking at the selection of books you kindly guided me to I think I want to read them all.
You have the list right the paracetomal is the usual dose you buy at the counter but can only have two pkts. The diazapam wasn't on the list I dont think I dont think I wrote that down it used to be 2mg x2a day now it is 5mgx2 everything else is right thanks Calluna I will aend off for the book tommorrow thank you again for the reccomendation.
little mo
xx

Good morning little mo - and I do hope that today is a better day for you. I am so glad that you are going to read that book, it is full of helpful stuff. I use it a lot, and I hope that you benefit from it as much as I have.

So we've got a list -

Fentanyl patch every 48 hours (recommended is 72 hours)
Cymbalta 60mg
Amitriptyline 75mg at night
Paracetamol 1000mg 4 times a day
Diazepam 5mg twice a day

It seems to me that with the continuing pain, they haven't found the right combination of meds for you yet. It is hard on you, of course, whilst they are finding out what works for you. Until they get this right, it is important that you continue to give feedback to your GP and to your pain management consultant when you see him/her. If you have not had any help from a particular drug - or if it used to help, but no longer does - these are things that they need to know.

With regard to your difficulty staying awake, I suggest that it may be any one of the four drugs you are taking which have sleepiness/drowsiness as a side effect, or it may be some combination of the four which is causing the problem. For instance - maybe you were ok with three of them, and adding in the fourth is when it started? Something like that, perhaps? This is definitely something that you need to discuss with your doctors - if side effects reach the point where they are affecting your quality of life, they need to get feedback from you about it.


How long have you been on the diazepam, little mo? And what about the fentanyl?

Hi little mo
Amytrip made me very very tired and I couldn't wake up in the mornings, it also gave me constipation (basically because it put my bowels to sleep) which is not good for PN. I switched to an antidepressant called Venlafaxine (Effexor) XL which is an SSNRI and works well for patient with nerve problems. I take this one a day with a combination of Lyrics 150mg twice a day which works quite well for me. I have breakthrough pain of course, but can understand your frustrations about the jobs pilling up. Regarding the Lyrica, I tended to find, like with all medication side effects, that they grow less troublesome over time, so my advice would be to persevere.

Good that you’ve got the appointment with Dr B in London. He will sort you out and any medical that he prescribes will be forwarded to your GP so they know what to give you. To speed things up if you could manage to go privately to see him then I would say it is well worth it. It speeds up the initial consultation process from the NHS, but if you need any treatment you can revert back to the NHS. I've done this before to cut out long long waiting times on NHS to see consultants.

Take care and good luck
Peaches

Thanks peaches some good information to go by there I am very gratefull . hope you are well
love mo
xx
John if you are reading the boards, thanks and I got your message will be phoning you soon and glad you had a good holiday
love from me
xx