Home | Contact Us | FAQ | Search & Site Map | Link to Us
Sign In | Join | Other 45 Sites in Network
Home
Discussion Groups
General
GeneralCardiologyVisionDentistryPharmacyLaboratoryNutritionAlternative
Diseases and Disorders
AIDSAlzheimer'sArthritisAsthmaCancerBreast CancerDiabetesEpilepsyGlaucomaHepatitisHerpesLupusProstate BPHProstate CancerProstatitisSinusitisTinnitus

Medical Forum / Diseases and Disorders / Arthritis / May 2005

Tip: Looking for answers? Try searching our database.

Joint pain and hotness that ebbs, returns, and moves to different joints

Thread view: 
Enable EMail Alerts  Start New Thread
Thread rating: 
spodosaurus - 16 May 2005 08:20 GMT
Hi all,

I'm hoping to get some feedback from the folks here who have
experienced, or know someone who has experienced, something similar to
what is happening to me now (and for the last 4 months). Before I
describe it I should let you know that aside from the aplastic anaemia
and the side effects of the treatment for it, I do not have any blood
work that would account for what is happening.

It started out four months ago as pain in the middle three toes of each
foot and only at the first metatarsal/phalanges joints. Then it spread
into the right heel and the left ankle (though the left ankle already
has serious problems, with near full collapse of the talar dome from
osteonecrosis and poolry healed tendon and ligament damage). Next it
spread into both knees, with the right knee being worse (about 6 weeks
ago we found more 'subclinical' osteonecrosis in the right proximal
tibia below the knee joint, but that pain I'm experiencing feels like
it's in the joint itself over the cartilage). Then it spread to both
index fingers and my left elbow and wrist (MRI found some osteonecrosis
in part of the lunate bone in the left wrist).

The pain seemed to subside a bit after about a month. Then my lumbar
spine started hurting, deep into the bones and around the facet joints
between the vertebrae. An MRI showed patchy marrow signature, but I
don't think this is unexpected with aplastic anaemia and the treatment
I'm on. We're following this up. However, there was no osteonecrosis or
any other reason for the pain that was visible on this MRI (and the
radiologist took a good look, too, and wants more information about my
medical history: he's fascinated by the patchy marrow signature). This
pain was VERY bad. Then, after 2-3 weeks, it started to ease. The pain
in the toes, right heel, and both knees was still there, but less severe
now.

Unfortunately, the pain moved to the right sacroiliac joint and was
quite severe. An x-ray showed some signs of long term stress to the
joint (probably from my odd walk due to the collapse of the left ankle),
and I'll find out the results of a bone scan tomorrow, but the pain came
on suddenly and for no apparent reason, not slowly over time. I could
stand, but not lean over even slightly. Once standing, I was pretty much
okay. But standing up from a seated position was intensely painful.
Laying down in bed or sitting up fram a laying position hurt even worse.
 The pain from rolling over at night while I slept was quite bad and
ALWAYS woke me. Then, it started to ease after a month.

Now, my toes on both feet, both of my elbows, and both of my knees are
hurting quite badly. The joints feel hot to the touch, and I've been
running a low grade fever for a while now (37.5 C). I was wearing a
wind-breaker jacket one day, and when my wife touched my arm at the
elbow she was surprised to feel the heat coming through the coat...but
only at the elbow. The joints feel inflamed and even a little
pressurised. There's a slight rubbing/grinding feeling in the elbows
when the pain gets worse. The right SI joint has started becoming
slightly more painful again, and facet joints in the lumbar spine are
hurting again now, too.

I really don't know what the heck is going on, but the pain is wearing
me down and restricting my movements (more than they already are). I
cannot take any opiate based painkillers as they cause side effects that
could potentially cause greater health problems, and panadol (tylenol)
doesn't help the pain (and it's not the greatest thing to be stressing
my already stressed liver with). We're thinking about starting me back
on celebrex, but I'd like to know what the heck is going on before we
treat the problem! I'm used to osteoarthritis from known causes, but
this is something new to my experience.

Based on the pattern of symptoms and the lack of evidence for a cause
(seronegative for rheumatoid factor), does anyone have any idea what
this might be?

TIA,

Ari

Signature

spammage trappage: replace fishies_ with yahoo

I'm going to die rather sooner than I'd like. I tried to protect my
neighbours from crime, and became the victim of it. Complications in
hospital following this resulted in a serious illness. I now need a bone
marrow transplant. Many people around the world are waiting for a marrow
transplant, too. Please volunteer to be a marrow donor:
http://www.abmdr.org.au/
http://www.marrow.org/

Harvey R. Stone - 16 May 2005 13:19 GMT
> Hi all,
>
[quoted text clipped - 66 lines]
>
> Ari

Hi Ari,    I started to say gout but this has gone wayyy beyond what gout
does and you have seen an RD sooooooooo,,,, I can certainly see why you
would be scratching your head.    I can only tell you what I would do.   I
would ask my RD for a 75=100mg steroid shot in my butt to see if anything
changes.    I keep a prescription of prednisone for surprises my RA throws
at me every now and then.    I have just used 15mg-3 pills yesterday to see
if my lungs would clear up a little.   I am back to taking my Enbrel shots
everyweek because my shoulders started to be an everyday problem.
Everything we do is connected to something else.     You did not say what
medicine you take Ari.
Harv
spodosaurus - 16 May 2005 14:25 GMT
>>Hi all,
>>
[quoted text clipped - 69 lines]
> Hi Ari,    I started to say gout but this has gone wayyy beyond what gout
> does

That was my first thought, and my RD's first thought, too. The anabolic
steroids can increase my uric acid levels. However, my tests were in the
middle of the normal range for these.

> and you have seen an RD sooooooooo,,,, I can certainly see why you
> would be scratching your head.    I can only tell you what I would do.   I
> would ask my RD for a 75=100mg steroid shot in my butt to see if anything
> changes.  

I have to be careful with prednisone as I'm already immunosuppressed
with cyclosporine, and pred makes me VERY prone to fungal infections (a
place I do not want to revisit). We'll probably try celebrex again
first, but I'm hesitant because of some strangeness in my platelet count
(probably coincidental) when I went off celebrex last year.

> I keep a prescription of prednisone for surprises my RA throws
> at me every now and then.    I have just used 15mg-3 pills yesterday to see
[quoted text clipped - 3 lines]
> medicine you take Ari.
> Harv

The pain isn't as bad as the serum sickness I had following T-cell
ablation therapies. In those instances, I ended up unable to move or
even speak without 125mg of pred daily until the reaction eased.

I'm taking a buttload of medicine! (I guess 'a mouthful' would be a more
accurate expression, but several of these pills look like they should be
used as farm animal suppositories by the size of them!) There are more
that I'd like to take (and my doctors would like me to be able to take),
but either my marrow won't tolerate them or they stress other organ
systems, so I get by on the minimum. These include: deca durabolin,
cyclosporine, fluconozole, neupogen, somac, desferal, etc.

Ari

Signature

spammage trappage: replace fishies_ with yahoo

I'm going to die rather sooner than I'd like. I tried to protect my
neighbours from crime, and became the victim of it. Complications in
hospital following this resulted in a serious illness. I now need a bone
marrow transplant. Many people around the world are waiting for a marrow
transplant, too. Please volunteer to be a marrow donor:
http://www.abmdr.org.au/
http://www.marrow.org/

Harvey R. Stone - 16 May 2005 14:48 GMT
There are more
> that I'd like to take (and my doctors would like me to be able to take),
> but either my marrow won't tolerate them or they stress other organ
> systems, so I get by on the minimum. These include: deca durabolin,
> cyclosporine, fluconozole, neupogen, somac, desferal, etc.
>
> Ari

Whewww,   I am going to be honest with you Ari.  In my mind you and Diane W
are in the same class.   I do not know if you should take anyones advice
because your condition is so serious and complicated that my only advice
would be for your to get your doctors heads together and Expect help,,,,
Keep them informed about all of it.   It could one of your medicines or the
combo of two or more prescribed by more than one doctor.
    I also wish you good luck with it all and please do not let this go on
and on.  Things can get worse.
Harv

ps    Sorry, to be such a downer.
spodosaurus - 16 May 2005 15:21 GMT
> There are more
>
[quoted text clipped - 16 lines]
>
> ps    Sorry, to be such a downer.

No worries, Harv, it's good to get a response. My doctors communicate
fairly well locally. I've found, though, that investigating other
possibilities can sometimes improve my care or at the very least improve
my understanding of different treatments that do not apply to me. If I
get an idea from research or from other people's discussions (there are
aplastic anaemia mailing lists) I can gather the information from the
medical journals concerned, familiarise myself with the information (my
background tends to allow me to understand the empirical research), and
bring the idea for a new or different treatment approach to my doctors
and they are responsive. Right now, one of my questions for my RD
tomorrow is going to be about seronegative RA, and idea I was introduced
to here on this news group :-)

Ari

Signature

spammage trappage: replace fishies_ with yahoo

I'm going to die rather sooner than I'd like. I tried to protect my
neighbours from crime, and became the victim of it. Complications in
hospital following this resulted in a serious illness. I now need a bone
marrow transplant. Many people around the world are waiting for a marrow
transplant, too. Please volunteer to be a marrow donor:
http://www.abmdr.org.au/
http://www.marrow.org/

NW - 16 May 2005 15:38 GMT
Hi Ari,

No idea if this is what you might have, but some of the things you
mention - particularly the sacroiliac joint and lumbar spine pain - as
well as the knee, toe and elbow pain sounds like ankylosing spondylitis
or some other seronegative(they aren't associated with rheumatoid
factor) spondyloartopathy, like psoriatic arthritis with spondylitis,
or reactive arthritis. It's pretty common to wake up in the night from
the back pain in too and having problems sitting up or standing up.

AS is usually insidious, though, but reactive arthritis can come up
quickly after an infection, particularly gut infections. AS usually
starts in younger people; late teens - early thirties, and are slightly
more common in men than in women. The majority of those with AS are
HLA-B27 positive, but those with other spondyloarthropaties are
B27-positive to a lesser extent. Some people have normal ESR and CRP
despite active inflammation too.

You can check at Spondylitis Association of America's description to
see if it feels familiar:

http://www.spondylitis.org/about/main.aspx
spodosaurus - 16 May 2005 15:54 GMT
> Hi Ari,
>
[quoted text clipped - 18 lines]
>
> http://www.spondylitis.org/about/main.aspx

Thanks NW. I'm pretty sure they've checked me years back for HLA B27 and
I was negative (sacroiliac injury from powerlifting that didn't heal
well), but I'll be sure to ask and ask about the ESR and CRP as well
(how much use ESR will be is debatable, as I'm transfusion dependant and
none of those cells are my own) but I'm fairly certain that CRP was
normal as well. I seem to recall having a mild infection around the time
that this started, but then again, my memory is a bit foggy because I
was always getting subcutaneous infections from the low neutrophils and
the daily subQ infusions of Desferal. The pain came on fast initially,
and I may have just thought I was coming down with something and getting
increased joint pain as a result.

Ari

Signature

spammage trappage: replace fishies_ with yahoo

I'm going to die rather sooner than I'd like. I tried to protect my
neighbours from crime, and became the victim of it. Complications in
hospital following this resulted in a serious illness. I now need a bone
marrow transplant. Many people around the world are waiting for a marrow
transplant, too. Please volunteer to be a marrow donor:
http://www.abmdr.org.au/
http://www.marrow.org/

d'huit - 16 May 2005 21:26 GMT
((((((((((ari))))))))))  i'm totally guessing, here, based upon my personal
experience which is different than yours, so don't put too much stock in
what i am suggesting.  just think about it and if it seems possible to you,
ask about it.  i think it is *possible* that your altered gait has played
into this somehow, ari.

i know that, from an orthopedic standpoint, when my gait first changed
(because of my car wreck) it threw everything else off and after quite
awhile, i started hurting in odd places, where i never hurt before.  but,
after the lumbar epidurals that caused me to stop limping, after 33+ years
of limping, some of the pains i was familiar with on one side of my body
shifted to the other side of my body.  and on the occassional days when i do
limp now, those same pains shift back to the other side again.  so, i'm
positive these particular pains of mine are all related to my gait.

don't know if that helps you or not ari.  but it was just a thought.  maybe
ask your orthopod if it is possible that these pains are altered gait
related?

kate

> Hi all,
>
[quoted text clipped - 66 lines]
>
> Ari
 
Sign In
Join
My Latest Posts
My Monitored Threads
My Blog
My Photo Gallery
My Profile
My Homepage

Start New Thread
Enable EMail Alerts
Rate this Thread



©2008 Advenet LLC   Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.