Chronic pain clinic appointment

[Wendymcconnell]

OK ladies I need your help. My long awaited appointment has come through for the pelvic pain clinic in Oxford. I need to ask questions. I am currently taking 150 mg of Pregablin and 75 mg of Amitriptyline. They don't seem to be helping with the pain. Just makes my head feel like it's stuffed full of Cotton wool..Do I ask for a nerve block of some kind or a change in medication? I don't want to waste the appointment. So any questions you can suggest would be helpful. Feeling overwhelmed by evwrything at the moment. A hysterectomy and 2 repairs jobs have left me in so much pain 😣

[Hidden]

From what I know, at the pain clinic they don't rush to offer you anything in particular. The approach is conservative, first they adjust your medication and only if you don't respond to it they can offer nerve block. It is possible to get remission from pain with nerve blocks! How long have you been taking the medication? Whoever prescribed 75 mg of amitriptyline is an idiot, you only need 50 mg, no point in going up. Pregabalin can be increased up to 300 mg. Amitriptyline takes a LONG time to work, between 2 weeks and 3 months even! Pregabalin should work within a month or two maximum. They can switch you to Cymbalta, It works for those who don't respond to amitriptyline.

[Wendymcconnell in reply to Hidden]

Hi. I have been taking the medication for 2 years. To be honest I think the only plus in taking Amitriptyline is that it helps me sleep through the pain at night. I have had 2 local appointments for the pain clinic in the town where I live. This is a pain clinic esp for pelvic pain.

Wendy

[Baileydog]

Hi,

I recently had the same appointment as you but in Manchester and I posted here asking the same questions. I am also on the same dosage of pregabalin but take mirtazipine at night as I developed serious anxiety. At my clinic appointment he went through all medical history, asked me to inform him of my painnand how it affected me etc, then his lady Physio gently examined me. Then they offered me nerve blocks, no discussion of meds at this point. He explained that nerve blocks worked for some and not for others and they would onlyborobably turn the pain down: not cure it. He then said after nerve blocks we would re assess and he would change my medication at some point. He said he did not like pregabalin. But for me it works to some extent.

Make a note of three main questions you would like to ask him.as seriously it gets emotional and you loose track . I wish you a productive appointment. Let us know what happens

[Wendymcconnell in reply to Baileydog]

Thank you. Still trying to work out what to ask. Making notes is helping. Not too sure about nerve blocks as I hear they can sometimes make things worse 😣

Wendy

[Baileydog in reply to Wendymcconnell]

Hi,

whilst waiting for my appointment in the pain clinic i read a good little leaflet, basic and to the point. It said ask 3 important questions.

What is my condition/pain

What are my options regarding treatment

Who id the best person to help me in treating/managing my condition.

there are a million and one question going through your mind i dont doubt, we are all the same. I am currently having pelvic floor physiotherapy with the specialist physio at the clinc and it is workin wonders for my pain at present. So as Sueboo suggested that is a good question also to ask.

[Hidden in reply to Baileydog]

Those 3 questions sum it up perfectly! 😊

[Hidden in reply to Baileydog]

they don't like pregabalin because it's expensive. How disgusting. It actually works very well for some people, for me it was magic

[Baileydog in reply to Hidden]

Hi Maryjane,

I went to my gp today to review pain and she listened and actually took an active part in the conversation. She explained the ins and outs of the medication we are offered for this condition . She wants me to increase my pregabalin dodge as she said I'm only on really low dose. They take the edge off but that's all. She said if I increase it may give me better pain control. Haven't decided what to do . I'm currently on 150mg twice s day. She wants me to now take 300 mg twice a day .

May I ask your dosage that worked well .

Sandra

[Hidden in reply to Baileydog]

Hello, I am really happy to hear you have an intelligent, caring GP! It's wonderful when patients are being listened to. I used to take Pregabalin in 2014, I was on 300 mg but I felt it was really really strong and it made my skin and body go numb (a good thing when you have buzzing nerves under your skin). Doctors don't like to prescribe it because it costs around 100 GBP per box. I was on 300 mg for 8 months at the time. I achieved comeplete remission of neuropathy with this and 50 mg of amitriptyline. I was pain free and off medication for 1 year and 4 months. I am now back on Amitriptyline at 50 mg and have added mindfulness and stress reduction because pain is regulated and maintained through the sympathetic nervous system and hence I can't be so anxious all the time, my medication won;t work... You can take 600 mg a day, my pain consultant from 2014 at ST Thomas' hospital said 300 mg was enough for my case, but you can go higher of course. Another interesting combination is taking 2 anticonvulsants! Like topamax and lyrica together, they increase each other's potency. I genuinely hope you achieve pain relief like I did, however I do know it takes some time for the medication to work

[Baileydog in reply to Hidden]

Thank you for your reply, it's something to think about. She was undecided wether to add amitryp into the combination but I also take mirtazipine to calm my anxiety down. I had a bit of a rough time with nerve pain and it triggered anxiety disorder which I too try meditation/relaxation techniques. At least I am hopeful that she is willing to help and that gives us some support . So onwards and upwards! This pelvic pain has a mind of its own !!

Sandra

[Hidden in reply to Baileydog]

anxiety medication usually works very well for nerve pain as well, like clonazepam

[Hidden in reply to Baileydog]

I am on 600mg per day, slowly worked up to that in the last month or so. Not doing anything for my PN, and I am drowsy and forgetful.

[Hidden]

I think it's important to ask if they can identify if it is nerve pain and which nerve it is. Sometimes trapped nervesvcan be dealt with. I hope they recommend some specialist physio, if not ask you can be referred.

[Wendymcconnell in reply to Hidden]

Hi Sue. I have had 4 appointments with a pelvic floor physio. She was very helpful and suggested pilaties which I am currently doing. Not seen any difference yet

Wendy

[Woodlandxnirvana]

Do muscle relaxers help at all? Or Tramadol? I've never used the nerve blockers, but I am able to get through most days alternating 50 mg tramadol and roboxin/soma every 1.5-2 hours. I reach a tolerance on roboxin and soma quickly, so I switch back and forth every 4 days. I'm also on gabapentin (which I HATE!)

The cymbalta did help me, but I can't take it because of side effects.

I also make my own vaginal suppositories using 1 baclofen and some cannabis oil in a bullet-shaped ice cube maker. I put the meds in each "bullet" and then fill to the brim with coconut oil and freeze. That helps me a lot, but I have to use it when I'm laying down :/

I wish you the best of luck. I hope the doctor is kind and open to you.

[Wendymcconnell in reply to Woodlandxnirvana]

I found the Tramadol just made me feel very weird and spaced out. You are the second person to mention vaginal suppositories. Maybe I should look into that ?

Wendy

[Chica1943]

I am in agreement with the Adm who posted below. There are often instances in having another kind of surgery like hysterectomy in which the pudental nerve is damaged. Mine was damaged by the mesh. It can cause horrendous pain. And sadly, there are too many doctors that aren't even knowledgeable about pudental pain and causes. Try talking to him.

Also, there are several groups on facebook that deal with pudental neuralgia , pelvic floor dysfunction. You can read many stories of other women and ask any question you wish.

I hope your apt is fruitful. Please keep us posted.

[fudge1 in reply to Chica1943]

The Mesh *can cause damage in some people and I am currently trying to find a way to get it removed. I have only just recently learned they actually do it at the same time as a hysterectomy. I have found all the pain relief I have tried has limited pain relief.

Molly

*edited by admin

Not all mesh is linked to the controversy surrounding mesh

[Foxwalks]

HI there, good luck with your appointment. My main pain killer is gabapentin and I was prescribed amitryptline which I hated and just felt as if I was in a fog all of the time. This was replaced by Nortryptiline which is much nicer to take and has the desired effect. My Gabapentine is at a much higher level than your medication as I take 4 x 400mg daily. I suffer from rectal neuralgia and this combination of meds works 80% of the time for me, if this is any help to you.

Take care, joan

[fudge1]

Can I ask what your repair jobs were for and who did the ops. I had my surgery at Oxford and I have an appointment with Mr Vic Rai at the Pelvic Floor Centre at the Womens Centre this month.

[Gars]

Wendy, I would pursue nerve block. It can be diagnostic as well as provide a reprieve. Just my 2 cents. when I have blocks it restores my faith that this ailment is temporary and that surgery may offer great help.