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Home > Archive > Lupus Support > August 2005 > Question about pain
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Question about pain
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| So I am going to my doctor in two weeks. Last fall I had alopecia,
severe joint pain, and the butterfly rash. Also have ovarian cysts and
asthma. Ran various tests including ANA, everything came back normal (I
know there is no lupus test) and she said come back in 6 months. Put it
off, finally going now. Anyway, I now only have the rash, several days
a week and always in the afternoons, and intermittent joint pain mostly
in fingers and shoulders and on ocassion knees. I know I need to tell
her about all of this. Here is something I don't know if is important
or not. I have what I can only describe as bone pain several times a
week. Twingy pain that sometimes just twinges and goes other time lasts
for a minute or so. Generally in bones of my thighs. Just now had one
near but not in my left ankle. If I think back, I think this type of
pain is worse when I am having joint pain but this clearly is not joint
pain. Can this be a lupus symptom?
Thanks.
Trish
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| In article <1123650354.434572.163310@g44g2000cwa.googlegroups.com>, TMB
<trishbailey@gmail.com> wrote
>So I am going to my doctor in two weeks.
[]
I suggest:
1 Make a (short!) written list of the things you need to say, so that
you don't spend all the time on the first symptom you mention.
2 Don't be surprised if what the dr thinks most important is not your
own first choice!
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
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| Thanks. 2nd piece of advice is really good for me to remember. Last
time I went she tested me for some really off the wall things because
of symptoms I hadn't thought much about. I am not planning to come out
of there with any more information and closure than before but I do
want to get in their once or twice a year now. Fortunately, I have had
no debilitating symptoms of anything since last fall, everything I get
now I can deal with.
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| "TMB" <trishbailey@gmail.com> wrote in message
news:1123650354.434572.163310@g44g2000cwa.googlegroups.com...
> or not. I have what I can only describe as bone pain several times a
> week. Twingy pain that sometimes just twinges and goes other time lasts
> for a minute or so. Generally in bones of my thighs. Just now had one
> near but not in my left ankle. If I think back, I think this type of
> pain is worse when I am having joint pain but this clearly is not joint
> pain. Can this be a lupus symptom?
>
> Thanks.
> Trish
Hi trish, IMO, any pain could be a lupus symptom. It just has too much
impact on too many parts of the body to discount something as not being
related without proving otherwise. I think know the pain you are talking
about and it could be a neurological sort of pain. But it could still be
muscular though it doens't feel like your typical ache of joint pain. I get
so many stray pains and the question in my doc's opinion is "is it lupus or
is it fibro pain?" And really there's no way to know. However, since it
could be neuromuscular then yes, I do think it's important to mention. And
if it increases then all the more so. lupus and other autoimmune conditions
can attack the nerves. I have this odd sharp pain that I get in the ball of
my right foot now and then. It feels like I've stepped on a needle and it's
embedded itself deep in the foot. it doesn't last long. Sometimes there's a
little bit of a "ghost" that stays there for a few minutes. But it is very
painful when it does happen. It seems to not be at all connected to
activity or other symptoms that I can tell. I would imagine, it's a nerve
that isn't quite right. I don't get it when walking much - so it isn't like
I'm putting pressure on the area. In fat, i most often notice it when
settling in to bed for the night - so I wonder if it's a referred pain from
my lower back problems...
yeesh - did any of that babbling make sense?
it's probably nothing - or at least nothing to be concerned about. But i do
think it needs to be reported.
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| "Andy" <andy@kitzbuhel.demon.co.uk> wrote in message
news:3wYNryCjtb+CFwXw@kitzbuhel.demon.co.uk...
> I suggest:
>
> 1 Make a (short!) written list of the things you need to say, so that
> you don't spend all the time on the first symptom you mention.
>
> 2 Don't be surprised if what the dr thinks most important is not your
> own first choice!
> --
> Andy Taylor [Chair, N E Lupus Group]
> See http://www.northeastlupus.org.uk for more!
yup... agree with AT on this completely.
fortunately, as time has gone on, my doc has gone from "just tell me the one
thing that's bothering you the most" (yeah, how do you pin that down with
this *(&*#($ disease) to "tell me everything that's bothering you." but it
has taken several years to develop that sort of connection with her and I
think her work with the LFA has helped make her a better lupus doc.
Now, I take in my list, categorized as "new/worsened", "same ol' same ol'",
"improved". i typically add brief comments. Example: under the SOSO
category. "Still have daily pain in my left food - but I can walk and it's
not worse so i'm not concerned"
she still goes over every item on the list and refers to her notes. I love
my doc!
fortunately, the SOS and "improved" categories have been larger in recent
years than the "new/worsened" category. she's gonna hear about the hives
though!
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| In article <6%rKe.1416$bm3.431@newssvr27.news.prodigy.net>, KCat
<kcattx@sbcglobal.net> wrote
[]
>yup... agree with AT on this completely.
>
That's a bad sign 
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
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| Beverley 2005-08-11, 8:59 am |
| Since you have pain in your left food maybe you should only eat the right
foods.
(Sorry, I just couldn't help myself on that one.)
Bev
"KCat" <kcattx@sbcglobal.net> wrote in message
news:6%rKe.1416$bm3.431@newssvr27.news.prodigy.net...
> "Andy" <andy@kitzbuhel.demon.co.uk> wrote in message
> news:3wYNryCjtb+CFwXw@kitzbuhel.demon.co.uk...
>
> yup... agree with AT on this completely.
>
> fortunately, as time has gone on, my doc has gone from "just tell me the
one
> thing that's bothering you the most" (yeah, how do you pin that down with
> this *(&*#($ disease) to "tell me everything that's bothering you." but
it
> has taken several years to develop that sort of connection with her and I
> think her work with the LFA has helped make her a better lupus doc.
>
> Now, I take in my list, categorized as "new/worsened", "same ol' same
ol'",
> "improved". i typically add brief comments. Example: under the SOSO
> category. "Still have daily pain in my left food - but I can walk and
it's
> not worse so i'm not concerned"
>
> she still goes over every item on the list and refers to her notes. I
love
> my doc!
>
> fortunately, the SOS and "improved" categories have been larger in recent
> years than the "new/worsened" category. she's gonna hear about the hives
> though!
>
>
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| "Beverley" <beverly.brown28@verizon.net> wrote in message
news:B2HKe.11459$0d.5560@trnddc02...
> Since you have pain in your left food maybe you should only eat the right
> foods.
> (Sorry, I just couldn't help myself on that one.)
> Bev
BAH! you got me. Andy must be slackin' off not to get me on this one.
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