Research into chronic pain

[rowantree]

I am undertaking PhD research into chronic pain- patient's experience of their GPs & how to improve the support patients get. I'd really value comments on the best approach. Www.tamartree.simplesite.com

[Regnofibro1]

Because of this illness it makes it hard for us to communicate our problems. I wish doctors would take a little more time with us. Really listen and ask questions to get answers out. But mainly take a little more time with us. Now days it seems like they rush us in and out. They need to take time. Maybe send us some forms about what issues we are having a month or two before hand. So when we get there they have a better understanding of what we deal with.

[Tigger24]

I am lucky to have a fab GP. She listens to me and discusses options. She asks my opinion on how I want to proceed with treatment. I have recently been diagnosed with fibromyalgia and the symptoms were so diverse. Yes, there was pain, but so much more. I thought i was dying or going mad. The fact that she listened and believed me - I cannot imagine where I would be if I was trying to convince someone of my pain and other symptoms and they were not listening. Again it comes down to time and a partnership rather than a patronising approach. Good luck with the PhD.

[Greymouth111]

Yes I have had trigeminal neuralgia for 14 years.I have been on many medications but the side effects are too great so I have to come off them.My GP has been supportive only when I come up with a line of treatment I want to pursue through my own research.I have no support when going up on meds or coming down off them.I am left to my own devices.And anyway who can blame him ,he only has seven minutes to see me! This last factor,time, is the valid point.If GPs had more time to see you they would be more able to listen to you especially in illnesss that are quite rare as in the case of TN.

Sorry I'm not sure whether you are a Ph.D student in the USA or UK.I am writing based on UK doctors.

[Hurtingmom]

My GP is ok- she is interested in what you can do to improve your health but when I had odd symptoms- she wasn't really helpful. At least she wasn't as bad as the neurologist who said it was nothing but anxiety. It was also severe spinal nerve compression as shown on an MRI and prediabetes but with neuropathy symptoms from both. Thank goodness, other doctors were not as useless as the neurologist or I'd not be feeling even a little better

[kathlaidlaw]

I have one of the best if not the best gps there are he will take as long as I need he is not trying to push me out of the door . and the best thing he talks to me not at me

[Hidden]

My GP is great, But knew nothing about fibro when i was first diagnosed

. After trying several times to get him to believe me, i took a list of symptoms with all those that i suffer from ticked off and with a comment about how it affects me.

Something worked, he is now more inclined to listen to me and to discuss things.

One unexpected bonus was that when i took some information leaflets into the surgery for fibroaction. It was put into my notes that i am a member of the forum.

It means that when i see someone new they dont try to fob me off as they used to.

[xshazx66]

There are 2 Dr's at the surgery I use and you are able to choose which one you see the one Dr says fibro is just a word they use for collection of aches and pains and it's all in most peoples heads! needless to say I don't see this Dr anymore,

[Hannah21b in reply to xshazx66]

A lot of people think this! It is not in our heads. I had 4-5 different appointments and had blood samples taken but all came back clear. My doctor had no idea why I was feeling the way I did???I then saw another doctor who thought he knew what it was and I saw a specialist who diagnosed me with a form of Fibro, A Form? how many forms are they. suggested I speak to my doctor for some Amatriptyline?

I have been back since to the doc, itchy head, itchy ears she did not mention this is a symptom of Fibro. Most doctors do not know, that is worrying that we have to tell them!!! I did not know it was related until I read on this forum that it is a symtom!! along with other related conditions I read on here. Maybe the doctors should read and learn from us?

[achydunlin]

I think the problem with fibro (at least this is my experience of it) is that it's so variable. I might make an appointment to see a GP because my joint pain/muscle pain has got much worse in the last couple of days or another symptom has hit me that I've haven't had before (i.e. a burning feeling in my head/blurry vision... take your pick) and by the time you get to the appointment I might be having a good day. When I say a good day - I mean only one part is hurting (for me it's always my hands...).

There's also the problem that not all health authorities and GP surgeries are up to speed on what fibro is or the treatments for it. the first GP I saw just kept upping my painkillers to a ridiculous degree. Another GP changed these, put me on an additional one and told me that this wasn't just a case of 'if that doesn't work you're stuck' (which is what the first GP had said - i.e. like last chance saloon)... but that there were tons of other options.

Also (sorry long post) the fact that I'd read of so many people on these health forums who'd been to a pain clinic whilst my surgery GPs looked at me like I'd grown another head when I mentioned this possibility.

A more informative and comprehensive approach should be applied across authorities for those with chronic pain.

[xshazx66 in reply to achydunlin]

This sounds like my experience, but now every visit to Dr's with new symptoms I'm told it's fibro related and they up the pain killers I take amitriptyline, half the time my GP will say mention this at your next specialist appointment, which could be 6months away,

[TheAuthor]

I have quite a few other medical conditions besides Fibro, including Osteoarthritis, Osteoporosis, Asthma, COPD, Migraines, No Coccyx, Costochondritis, GORD and Sleep Apnea to mention a few.

My experience of GP's and Consultants varies as they all have their own ideas and not always for the best? Some are not just more knowledgeable than others but more emphatic and sympathetic than others. Some will give me a new medication where others (I get the feeling) are more interested in their budgets?

I have a care plan due to all my health problems but I tend to look after myself anyway. I take 26 different medications a day and they leave me feeling all over the place at times.

if you want to know anything in particular please send me a private message. I also want to gneuinely and sincerely wish you all the best of luck with your PhD.

All my hopes and dreams for you

Ken

[rowantree]

Thank you so much all of you. Your comments are very useful. Would any of you mind commenting on my proposal itself - do I need to change the approach? Please go to tamartree.simplesite.com to comment. Thank you. I will be back to ask for people to complete a survey when I get that far!