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diclidophora@yahoo.co.uk - 16 Apr 2006 10:19 GMT

Looks as tho the chat is getting less and less here. You would think
that with the number of people out there suffering from arthritic
disease, more would want to discuss their concerns and treatment - or
is the NHS so good at rheumatology that nobody cares anymore ?

Peter

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Coats - 16 Apr 2006 11:40 GMT

> Looks as tho the chat is getting less and less here. You would think
> that with the number of people out there suffering from arthritic
> disease, more would want to discuss their concerns and treatment - or
> is the NHS so good at rheumatology that nobody cares anymore ?
>
> Peter

I think we'd prefer not to moan too much. I have news but thought I'd wait
til it was confirmed by my GP or someone who should really know.

It seems my RA may not be RA at all. At least according to my
physiotherapist. She thinks I may have a form of hypermobility. Mainly
because I have no inflammatory factor in my blood and the only joints to be
majorly affected are my wrists, knuckles, fingers, ankles and toes. I have
an intermittent back problem but also have problems with muscle strains a
lot and most topical/ local anaesthetics don't work properly for me.
(dentist injections,etc) Seems this is much more likely than RA given all my
problems. This, according to her, is also why ibuprofen doesn't seem to give
much relief at all.
Now if the rheumatologist had explained all this as she did I wouldn't have
thought him such an arse. Seems he put it in his notes just didn't tell me!

So next week I'm off for my first accupuncture session and am going to get
shoe forms to help my flat feet stop being so flat.

Hopefully this will be a step forward and I can go find a hypermobility
group to get advice from.

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Love is a kind of warfare. Ovid, 43BC

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diclidophora@yahoo.co.uk - 16 Apr 2006 19:31 GMT

Best of luck Coats.
Maybe you will be glad you don't have RA.

Peter

> > Looks as tho the chat is getting less and less here. You would think
> > that with the number of people out there suffering from arthritic
[quoted text clipped - 32 lines]
>
> http://www.onlineconverter.co.uk/canda177

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Robin Fairbairns - 17 Apr 2006 10:57 GMT

>> Looks as tho the chat is getting less and less here. You would think
>> that with the number of people out there suffering from arthritic
[quoted text clipped - 3 lines]
>I think we'd prefer not to moan too much. I have news but thought I'd wait
>til it was confirmed by my GP or someone who should really know.

i agree. if we all moaned all the time, it would reduce our ability
to support people who come along with a seeming emergency.

my news arrives later this week (i've got an appointment at the
hospital), and if anything significant turns up, i'll let people know.

>It seems my RA may not be RA at all. At least according to my
>physiotherapist. She thinks I may have a form of hypermobility. Mainly
>because I have no inflammatory factor in my blood and the only joints to be
>majorly affected are my wrists, knuckles, fingers, ankles and toes.

sigh. i have psoriatic arth, and i have very little sign of
inflammatory factor in my blood, and i also have periods of pain
extending no further than peripheral joints (though i've never had it
in my toes).

>I have
>an intermittent back problem but also have problems with muscle strains a
>lot and most topical/ local anaesthetics don't work properly for me.
>(dentist injections,etc) Seems this is much more likely than RA given all my
>problems. This, according to her, is also why ibuprofen doesn't seem to give
>much relief at all.

i had been taking ibuprofen regularly before i was diagnosed (i used
to suffer bad headaches -- not, thank goodness, migraine -- and it was
at that time my drug of choice for dealing with them). i wasn't at
all surprised that ibuprofen wasn't doing anything for me when i was
put on it as a regular thing. however, i have since had relief from
other anti-inflammatories.

>Now if the rheumatologist had explained all this as she did I wouldn't have
>thought him such an arse. Seems he put it in his notes just didn't tell me!

can't have the little patient bothered by a diagnosis, can we? he's
an arse, whether or not he had the right idea.

>So next week I'm off for my first accupuncture session and am going to get
>shoe forms to help my flat feet stop being so flat.
>
>Hopefully this will be a step forward and I can go find a hypermobility
>group to get advice from.

best of luck.

i know nothing about hypermobility (i've never imagined it might be
_my_ problem), but bear in mind, if nothing comes from treatment for
it, that your symptoms don't sound *to me* inconsisten with arthritis.

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Robin Fairbairns, Cambridge

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Coats - 26 Apr 2006 20:37 GMT

> my news arrives later this week (i've got an appointment at the
> hospital), and if anything significant turns up, i'll let people know.

And did it? Turn up I mean.

>> It seems my RA may not be RA at all. At least according to my
>> physiotherapist. She thinks I may have a form of hypermobility.
[quoted text clipped - 5 lines]
> extending no further than peripheral joints (though i've never had it
> in my toes).

Well, my latest treatment is starting to include RA symptoms so you never
know.

>> I have
>> an intermittent back problem but also have problems with muscle
[quoted text clipped - 8 lines]
> put on it as a regular thing. however, i have since had relief from
> other anti-inflammatories.

Now it seems that the accupuncture I'm having now is working, well mostly.

:-)

My feet seem to be responding the best, after the first session I didn't
need any painkillers for them for 4 days. I've been for another go today, at
the moment theyre itching like mad. That apparantly is a good sign. I think
its bleddy annoying myself especially as I can't itch inside my joints.

>> Now if the rheumatologist had explained all this as she did I
>> wouldn't have thought him such an arse. Seems he put it in his notes
>> just didn't tell me!
> can't have the little patient bothered by a diagnosis, can we? he's
> an arse, whether or not he had the right idea.

Well I still think so even if the alternative to a diagnosis is easing
things. I'd still like to know what I *have* got.

>> So next week I'm off for my first accupuncture session and am going
>> to get shoe forms to help my flat feet stop being so flat.
>> Hopefully this will be a step forward and I can go find a
>> hypermobility group to get advice from.
>
> best of luck.

Well I'm still here!

> i know nothing about hypermobility (i've never imagined it might be
> _my_ problem), but bear in mind, if nothing comes from treatment for
> it, that your symptoms don't sound *to me* inconsisten with arthritis.

Well, now theres the thing. My feet are responding fantastically to the
accupuncture treatment based on the hypermobility model. My hands are either
worse or at very best the same, they may just feel worse cos I have no pain
in my feet for a few days after the needles.

I seem to think this diagnosis buisiness is a very fickle thing. I have two
at the moment. I wonder if I can get any more before my pain killers run out
and I have to see the GP again?

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Murphy's Sixth Law: If you perceive that there are four possible ways in
which a procedure can go wrong and circumvent these, then a fifth way,
unprepared for, will promptly develop.

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Robin Fairbairns - 27 Apr 2006 09:18 GMT

>> my news arrives later this week (i've got an appointment at the
>> hospital), and if anything significant turns up, i'll let people know.
>
>And did it? Turn up I mean.

yes. it was so "null" i forgot to mention it. roughly "keep taking
the pills and come back in a long time from now".

which i might have railed about if i felt worse than i do.

however, i go into hospital today for something completely irrelevant
to arthritis, so i've got other things on my mind.

>> sigh. i have psoriatic arth, and i have very little sign of
>> inflammatory factor in my blood, and i also have periods of pain
[quoted text clipped - 9 lines]
>:-)
>[etc]

best of luck with all your jollity. i shall expect another report in
a week or two when i stagger back to this seat with lots of tedious
paraphenalia attached to my aching old body.

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Robin Fairbairns, Cambridge

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Alison - 16 Apr 2006 20:26 GMT

I'm sleepng ZZzzz. <G>
Alison

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Splodge - 17 Apr 2006 11:21 GMT

I'm here, Peter, but unfortunately not too well. I saw my surgeon's
Registrar on Thursday and he doesn't have any answers to why I'm still in
pain, nor does my GP, and nor does my physio lady. My leg is numb in one
part and pins and needles in the rest.

I'm going back to get an appointment with my GP this week as I know I need a
soft tissue scan (is that MRI or CAT?) or a referral to someone.

Hope everyone here had a good Easter holiday

Splodge (Jan)

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diclidophora@yahoo.co.uk - 17 Apr 2006 17:32 GMT

Good to hear from you all. No we don't want to moan a lot, but a
certain amount of venting can help. I suppose that is what a support
group is about.

I wouldn't want to seea this one die, so it was with this in mind that
I asked about sleeping.

Jan. Sounds to me as tho a referral would be agood thing. You have to
get this thing diagnosed I think.

Best wishes to all

Peter

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baino - 18 Apr 2006 00:49 GMT

No just suffering in silence these days and lurking in the background. I'm
still suffering with excruciating pain in elbows hands,knees and ankles,
doctor has put me on painkilling patches called Fentanyl, supposed to be
very controled drug, each patch is applied to the chest wall for 3 days and
then changed. It slowly releases the painkilling treatment for absorption by
the body this is being used in conjunction with 2 x 500mg 4 hourly
paracetamol and 8 x 30mg dihydrocodeine 3 hourly along with my other drugs.
Started them on Sunday and felt rotten today feeling very nauseaus and still
sore. Going back into hospital soon (8th May) cant come soon enough as there
is only so much pain you can stand before it buggers you up completely.

I also have a similar condition to Splodge in that I also have numbness and
pins and needles in my left leg but only in parts, its quite painful and can
seem like its on fire at times and also has a feeling of an electric shok
shooting through it. My Rheumatologist told me that its because the either
ulna or ulnar nerve is trapped, they keep an eye on it but he said even with
an operation it could still take a couple of years to rectify. He also said
its most common in people who are overweight, but its a catch twenty two
situation you can't exercise when your in pain, simple!! so weight will go
on, however I've lost over 6 stone and its still bothers me.

Robert

<

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Splodge - 18 Apr 2006 19:33 GMT

> No just suffering in silence these days and lurking in the background. I'm
> still suffering with excruciating pain in elbows hands,knees and ankles,
[quoted text clipped - 20 lines]
>
> Robert

You must be rattling, Robert, but at least it's not too long till May 8th.
Sorry to hear it's so bad.
I don't suppose your Rheumy told you what the ulnar nerve gets trapped in,
did he? Wouldn't that give bad back pain? I still don't have a disgnosis for
mine, even though I saw my surgeon's Registrar last week.
I'm a few pounds overweight but nothing to worry about, so that's another
"diagnosis" ruled out:))
Congrats on the weight loss
Splodge

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baino - 18 Apr 2006 23:29 GMT

Yes rattling is a fair assessment, No he didn't say why it gets trapped but
I can always ask and post an update, would it not be the muscle and bone,
I'm not sure but what I do know is its bloody paiful at times and I get no
relief from it. As regards bad back pain, I'm fortunate enough not to suffer
from this, however I suffer from everything else. Thanks for the congrats
when I was first diagnosed I was pretty bad and still am but I did put on
weight although it was'nt through stuffing my face it was just lack of
exercise and missing my physical job, I used to be a fisherman but with the
RA, cold and damp of the north sea, did'nt mix so was forced to give it up.
I dont normally look forward to my hospital appointments but this time I am
as I'm suffering still quite bad, tried all the anti-tnf's but the didn't
work along with conventional dmards, this time I'm supposed to be going onto
the research drug Rituximab and will post here when I get discharged back
home.

> You must be rattling, Robert, but at least it's not too long till May 8th.
> Sorry to hear it's so bad.
[quoted text clipped - 5 lines]
> Congrats on the weight loss
> Splodge

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Robin Fairbairns - 19 Apr 2006 11:08 GMT

>Yes rattling is a fair assessment, No he didn't say why it gets trapped but
>I can always ask and post an update, would it not be the muscle and bone,
>I'm not sure but what I do know is its bloody paiful at times and I get no
>relief from it.

i had numbness and tingling, with periods of excruciating pain, too.
when i had finally persuaded the rheum people this was for real they
sent me for an nmr body scan (a nasty experience).

they got the pictures back (amazing pictures, i thought), and
immediately spotted the problem: growths on the inside of my spine.
they referred me to a neurosurgeon, who said "if you had been talking
to me first, i could have saved on the nmr". apparently, the symptom
of excruciating pain while walking but no problem cycling, is highly
indicative of the need for a lumbar laminectomy ... which i was duly
given. (this, aiui, is a sort of decoke of the spinal duct.)

neurosurgery is complete magic. there was a guy came in with a brain
tumour: while he was waiting for his op, we observed him degenerating,
and before he went downstairs he could hardly even talk to his wife.
back from the (very long) op, he was laughing and joking with us!

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Robin Fairbairns, Cambridge

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