Someone give me strength.

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Someone give me strength.

Postby tireesix » Fri Mar 05, 2010 5:31 pm

Just got a letter from pain management and its like they have ignored everything I have ever said.

Why?

What exactly is the point of me attending the appointments when we get no further than the previous appointment and keep going over old ground because no one can be bothered to write new notes or read the old ones?

Apparently, my pain is being perpetuated by my use of morphine. Ok, so what was causing the pain in the years previous to this past one (cos I have only been on morphine for 9 months)?

Apparently my cold issues are caused by the propranolol. Ok, so I took it from Octoberish to January, so why am I still having cold issues in March, and again, what was causing it in the years previously?

And again, I have been told there are no quick fix answers, I KNOW, all I am asking is for treatment of symptoms, not a miracle, however, they refuse to look at any of the recommended fibro meds other than pregabalin and duloxetine and I can't take those things.

When am I going to find a Doc that is actually going to listen to me?
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Re: Someone give me strength.

Postby velvet » Fri Mar 05, 2010 6:26 pm

:hugs: :hugs: :hugs: :hugs:

wish i could help - i am dealing with a partner who wont listen to me either.
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Re: Someone give me strength.

Postby KateXXXXXX » Sat Mar 06, 2010 10:10 am

Don't wait for your next appointment: WRITE back to whoever wrote this letter, going through each point, as you have here, and answer it and ask the question. When you get to the meds, tell them exactly why you cannot take those two, and ask what else there is available.

Send the letter to ALL the separate consultants and departments dealing with you. Send it registered, and track the letters... Give them a week to get back to you, and then pester them on the phone and with further letters if you don't get a prompt reply.

If they whine that they cannot answer your letters that quickly, ask them why they want you to continue in levels of pain that impair your daily necessary functions, and for how long? Push their guilt buttons (always presuming they have some!), and if you don't get answers, go up the management structure and ask their managers why they are letting these folk leave you in pain.

Meanwhile, have some well padded :hugs: :hugs: :hugs:
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Re: Someone give me strength.

Postby AngelBear » Tue Mar 09, 2010 3:12 pm

What a great reply Kate, you are so right it is a case of push push and saying you do matter.
A smile lifts both you and others
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Re: Someone give me strength.

Postby KateXXXXXX » Wed Mar 10, 2010 1:00 am

One of the things my pain management course taught me was that it doesn't matter, in absolute terms, how much pain I am feeling. Nor does it matter what is causing it (given that it isn't a broken leg all acute appendicitis or some other trauma!). What REALLY matters is how much it's affecting me and impacting on my daily life.

Another was that people have to be forced to do joined up thinking about pain. There's a hell of a lot of GOOD pain management experience and knowledge in long term and terminal cancer care. No-one has seen much of this knowledge seep into other areas where pain is a chronic issue! Why not? Because it's 'cancer care knowledge' not 'chronic pain management knowledge'! Those trying to do their best for their chronic pain management patients don't know it because no-one has seen that it will be useful to the pain management teams and made sure that the research and knowledge was brought to their attention! It was done for cancer patients and disseminated within the cancer care base, but no-one saw that it could be applicable outside cancer care... Except some cancer care nurses! And some of it is slowly seeping into more general use. Finally!

OK, I'm going to take my Grendel-shoulder, tingling fingers, twitching arms and restless legs off to bed for a few hours! Maybe I'll manage tomorrow without a 3 hour siesta in the middle of the day - and have the energy to unroll and inspect the 33m of various silks that arrived today for a wedding project!

We are all allowed to dream...
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Re: Someone give me strength.

Postby tireesix » Thu Mar 18, 2010 2:49 pm

Aaaaaaaaaaaaaaaaaaaaaaaaaaargh.

Just seen a doc about my back. I keep going through periods of it swelling and being incredibly painful to touch and according to the doc I have normal movement (I am super hyper mobile and we had just been discussing this, so its kinda like ummmmmmmm, surprised? Not) and it is caused by me sitting on hard surfaces. I don't sit on hard sufaces so its kinda WTF?

I am really hacked off. Thinking about changing practices, I just give up.
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Re: Someone give me strength.

Postby nattyone » Thu Mar 18, 2010 3:20 pm

my docs crazy too .

hes decided this week i have rhuematoid arthritus , both my gp and another gp at the same clinic who has a special interest in fibro think its fibro , based on my symptons i agree.

first appointment the rheumatologist tells me not all pain can be diagnosed
orders x rays and blood tests and tells me come back in 9 months

went back in 9 months : he looks at blood resuklts and x rays and says probably psioratic arthritus ( no evidence other than i have a skin disorder)

went to dermotolgist who told me the result of my skin biopsy showed it was definatly not psiorisis but something genetic.( cant recall name)

back at the rheumatologist i tell him i dont have psyoratic arthritus .
he looks again at the same x rays and blood test results from all those months ago then declares its probably rheumatoid arthriytus( no signs in the bloods or x ray). he asks me to go on a disease modifying drug and come back in november.

i call my gp and tell her what happened she says how bizzare and that she cant see why he thinks its that when all the symptons match much better with fibro. she also tells me no chance of my taking the recomended drug since my kidneys are already compromised by the drugs im on.

i got a letter come thru today from rheumatology , he wants me to go in in april! oooh me thinks im in trouble for doubting my dx . i am scared to be honest but i want the right dx not just any old one or none at all.

im going to have to call my gp and see why the rheumatologist is calling me back in , if its just to yell at me i am not going , if he has evidence to support his diagnosis then i will.

so yes drs are a crazy bunch , maybe they have * the fog*
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Re: Someone give me strength.

Postby tireesix » Fri Mar 26, 2010 5:48 pm

Yup Natty, they be mighty loopy in the head.

So, I saw my GP today. Apparently, I am losing weight because I am depressed. I am not depressed, I am pissed off because they don't listen. She also said, we only need to worry about your weight loss when you don't need to lose it. I am under 9 1/2 stone now, at what point does 5' 7'' person need to not lose weight cos I know that by the time I get to 9 stone 1 lb I will be classed as under weight.

I am just really fed up, all I wanted was something to help with the pain, that is all I have been asking for since my fibro took a massive nose dive last November and the only things I have asked for are things that have been advised for fibro because god forbid, I want to lead some kind of normalish life.

Everything is hurting so bad at the moment, increasing my morphine has helped some what, coming off anti depressants has helped with my mood swings.

gotta go, baby is hacked off at the moment.
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Re: Someone give me strength.

Postby tireesix » Tue Apr 06, 2010 1:58 pm

New appt, different doc, same practice, fingers crossed, today at 3:30!
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Re: Someone give me strength.

Postby tireesix » Thu Apr 15, 2010 1:05 pm

I have decided that I am now definitely leaving my current GP.

A) I can't see a different GP in the practice because no one else will deal with me because apparently the doc I see regularly knows me better than the others. So, it would seem, that according to them, its impossible to build up a new relationship with a new patient.

B) I told them last appointment that I have a pain management appointment in May. The Docs bright idea to help me out was to refer me to pain management, WTF? I ALREADY have an appointment with pain management, just more proof that they don't listen to a thing I say.

I am fuming right now. All I have asked of them is to look at different meds that might help and they have just made it so difficult with comments like 'but morphine is the strongest there is' or 'hows your mood' or 'I haven't tried it before so I don't know what its like and as a result, I am not willing to prescribe it to you' or 'I don't agree with benzodiazepams (I was asking for a true muscle relaxant as advised by the NHS website etc etc rather than a benzo) because they are addictive (and yet I take morphine and tramadol)'.

Totally had enough. As my DH has said, while they are messing me around, my life is quite literally s*******. My kids ask for DH instead of me, I am snappy and irritable and because of the pain, not able to do what I want with them. This is literally, causing issues within the family and I try really hard not to let it but its really difficult.
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Re: Someone give me strength.

Postby LinzWorld » Thu Apr 15, 2010 2:56 pm

Have you informed your GP surgery that you want to change GPs? I did that ages ago and they booked me in with a different GP, who I then told that I wanted to change GPs to explain why I was seeing them not my usual GP.
I run FibroAction, a small national charity raising awareness of Fibromyalgia Syndrome. I am not a qualified healthcare professional. If you would like medical references for any facts quoted, just PM me.
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