So, where to go next....

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So, where to go next....

Postby groovy_chick » Wed Nov 11, 2009 12:06 pm

....ok, am a bit baffled here.

Have had all sorts of investigations done and the only thing that cropped up is that I have mild lumbar spondylolisthesis and low iron. All other investigations show zilch, i.e. MRI spine nothing apart from confirming Xray, endoscopy and colonoscopy nothing, lumbar Xray mild spondylolisthesis, bloods low iron,gait analysis shows functional problem with my feet so had orthotics prescribed, awaiting pelvic ultrasound. Pain clinic said not to have any more investigations and to continue on current meds so am bit stuck, what am I missing? Any ideas? :dunno:
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Re: So, where to go next....

Postby *Lisa* » Wed Nov 11, 2009 4:27 pm

Im baffled to lol...

The only test that rhuemi's do for FM is the tender point test and bloods to rule everything else out and like yourself other investigations as a pre caustion if all these tests are clear then no need to carry on with further examinations :dunno:

You could see a physiotherapist and they can have a feel to see what they think?
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Re: So, where to go next....

Postby groovy_chick » Wed Nov 11, 2009 5:10 pm

*Lisa* wrote:Im baffled to lol...


You could see a physiotherapist and they can have a feel to see what they think?


been there done that got the T shirt :? they were euqally baffled but suggested possible fibro or just sensitisation following minor op or mainly muscular pain due to postural problems. I asked GP about fibro several times but they don't think I fit the criteria so really :dunno:
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Re: So, where to go next....

Postby shazq » Wed Nov 11, 2009 6:50 pm

Hi
You should go back to see your GP.
Have you been seen by a Rheumy? if not ask your GP to send you.
if you are in pain just keep going back. Do you suffer with headaches or had any falls? if you have ask to be seen by the neuro team.

Hope you get some answers soon. :hugs:
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Re: So, where to go next....

Postby groovy_chick » Wed Nov 11, 2009 9:59 pm

Hi,

have seen neuros right at the beginning when I was having lot of shooting pains but they declared me neurologically intact and didn't want any further involvement. Pain clinic also re-checked my reflexes and said they were perfectly fine so really :dunno:
Most of my pain is that horrible 'bone' type pain which is random and intermittent and that muscular aching when it feels like I have done 10 rounds with Tyson overnight. Yes I do get headaches (but who doesn't?!)mainly due to tension in my shoulders which is probably due to dodgy posture.
I also get lot of stiffness in lumbar spine in the morning (I feel this is muscular)after night's sleep and after a day of pottering about or being at work I have to lay on the floor and wait for my back to 'click' back to place and 'relax' cause it's painful but I guess that's muscular too.
I guess my last option is Rheumy referral but I dunno how I can request this if the pain clinic recommend no further treatment or investigation?
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Re: So, where to go next....

Postby LinzWorld » Thu Nov 12, 2009 1:37 pm

You can ask. If they say no, you could always go private for a diagnosis, if not ongoing treatment.
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Re: So, where to go next....

Postby groovy_chick » Thu Nov 12, 2009 4:55 pm

I guess so Linz, I just feel like I ran out of options now.
It's not like I've been told I haven't got any pain, they just said yes I have got pain but they don't know why and can't find any obvious causes and because it's responding to pregabalin to stick to that treatment and do not investigate any further.
I don't know if this means stick to pregabalin indefinitely or eventually consider reducing the dose or coming of it as it doesn't say that in the letter.
I am actually considering forking out for private physio assessment and see if they offer myofascial release too as I feel I have lot of trigger points and referred pain too. I know rubbish posture doesn't help :oops:
So really I guess it's trip back to GP again SIGH :?
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Re: So, where to go next....

Postby lauramath » Sat Nov 14, 2009 10:45 am

Let's not forget that the dodgy posture is often due to the pain that we are *trying* to avoid. I think it is often forgotten that it is a symptom...not JUST a problem.
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Re: So, where to go next....

Postby LinzWorld » Sat Nov 14, 2009 1:54 pm

Dr Andrew Holman and the phyios that work with him in Seattle have been doing a lot of work on this actually, because they're finding that a lot of people with Fibro have positional cervical cord compression and standing in the classic "pain posture" actually puts pressure on the spine, which makes the Fibro so much worse. They're getting great results with PT to help the patients correct this - and dealing with this issue allows the meds for Fibro to work so much better.
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Re: So, where to go next....

Postby groovy_chick » Mon Nov 16, 2009 2:02 pm

[quote="LinzWorld"] a lot of people with Fibro have positional cervical cord compression and standing in the classic "pain posture" actually puts pressure on the spine, which makes the Fibro so much worse. quote]


That's very interesting Linz but how can this be 'proved' ?
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Re: So, where to go next....

Postby LinzWorld » Mon Nov 16, 2009 4:04 pm

Dr Holman is doing research using dynamic MRIs, where thery MRI the neck in neutral, with your head tilted forwards and with your head tilted back. It's not widely available, but there are certain signs that indicate this could be a problem: positive Romberg test; pain at the hairdressers sink or at the dentists; dizziness, pain when looking up; and problems with grip.
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