How do I get my GP to take me seriously?

[ZedT]

I have a herniated disc in my lower spine, spondylosis, severe sciatica, pins and needles, severe bladder incontinence, and debilitating muscle spasms in my back. On a bad day i can barely move, on my very best day i hobble around in pain trying to get on with things. I have three children, the youngest being five, and have been struggling with everyday tasks since November, although my spine has been bad on and off for many years. This condition is now chronic, and i saw a neurologist last month, who, although sympathetic, stated he could do nothing to ease my pain, and sent me for another MRI (4 weeks this Thursday), the results of which I have not received.

I am doing all I can to help myself- stretching exercises, over the counter pain killers, walking stick and perch seat etc. and i am trying to stay positive. But last week i went to see the GP again for better pain relief and was given Amytripiline which i could not tolerate. i have repeatedly asked for a Pain Clinic referral, a Continence Advice referral and a Physio referral. GP is waiting for my latest results and i dont understand why. Whatever my scans show, i am suffering and need support. I feel very awkward asking again and again and Im terrified of becoming a nuisance, after reading about people who have been removed from GP lists after complaining.

Not to mention the fact that as I have been trying to increase my previous full time position from zero hours to five a week (so proud of that....pathetic eh?) we are reduced to pretty much poverty. Ive applied for PIP months ago, no idea whats happening there as ive heard nothing. After my one five hour shift i am literally crippled and in agony, there has to be something to help.

I have an OT coming today (whom i rang myself) to assess me for some equipment to help, and that feels like progress; but how can I make it clearer to my GP I NEED pain relief and support? I try to wait patiently, but my life, and that of my family who have effectively lost mummy in all but spirit, is so MISERABLE. Does anyone have any suggestions as to how i can make my GP understand without risking being told to get lost?

[Butterfly-lady]

Hi there

I have only just joined the Pain concern group, so have only just seen this eight month old post. I am surprised and concerned, given the damage to your spine, that your GP did not prescribe any pain relief, Are you able to see a different doctor within the practice you go to?

[ZedT in reply to Butterfly-lady]

Hi Butterfly lady, thank you for responding to my post. I had forgotten I'd written it! It seems so long ago now. I'm much further along my journey now, please do read my posts to see what's been happening if you want to. The short version is my GPs are not great, but I have found one out of them all who is helpful and caring, and we work together to make life bearable for me. Sadly, being pretty much ignored for so long has caused permanent and irreversible nerve damage leaving me with complete urinary incontinence and chronic severe sciatica, amongst other things. I learned a lesson which is do not be fobbed off, be polite but firm and if you are treated badly or not at all don't be afraid to formally complain. A nurse made a complaint about the state she found me in and that seemed to make the GP take notice. So now I have a much more proactive team of health care professionals helping me. Never got an appointment for the pain clinic though....don't need it now as my consultant prescribes my meds, but technically the appointment is supposed to be in the post!!! Who knows, its been a year since I first went to the GP so maybe it will arrive soon!!!

[Butterfly-lady in reply to ZedT]

Hi there

I am so sorry that you are in this awful situation, with regards to the pain, have you been offered a TENS machine at all? These can help a great deal with pain relief and with no side effects like the drugs.

I have just looked at a couple of your previous posts and noticed a TENS machine was mentioned, did you actually get one?

With regard to the urinary incontinence, I have just discovered a machine that can be prescribed by your GP for that, called the Pelvic Toner see pelvictoner.co.uk Tel: [phone]

On the website it says that:-

"87% of PelvicToner users reported improved bladder control within 4 weeks

80% of PelvicToner users reported an improved sex life within 4 weeks

92% of PelvicToner users reported greater awareness of their pelvic floor after just 2 weeks (source: 2007 user survey)"

It might help.

kind regards

Susan

[ZedT in reply to Butterfly-lady]

Hi Susan, how lovely of you to help me try to find some solutions, thank you so much. my wonderful physio lent me a Tens machine and it did give a little relief at first. Sadly the pain is so severe now that I no longer get any relief from it. However, the pregabalin and my physio give me up to six hours of manageable pain every day, which I work around. The rest of the time I use codeine and Naproxen. Some days are worse than others, and some days are great. I still manages to go to work for up to four hours every day, and as I work in a nursing home (I am a Cognitive Stimulation Therapist working with dementia patients) I have lots of help around me should I need it....its the perfect job!

Now my bladder is a sad story. I have a urethral stenosis which has always caused issues, but now th nerves controling my bladder are permanently damaged from chord compression. There iss nothing wrong with my pelvic floor. My bladder simply does not receive the message to empty when full. It empties on an autonomic reflex. At this point I am still undergoing surgery and my consultant, who is wonderful and an expert in his field, has a consultation booked with me to examine my options. The pelvic toner you suggested would have no effect on me as it works on the muscles not the nerves. It is entirely possible that the surgeon may know of some sort of way to stimulate my nerves when I need a wee, and if the NHS can provide that for me I will try. I am just waiting to see.

I really appreciate your advice though, thank you Susan. X