Hi people I'm struggling at the moment with a variety of
symptoms that to some degree appear to be pointing to some
more sinister cause than my usual mishmash of problems
(Lupus/Sjogren's/Fibromyalgia) - I've had the dx's for 10
years and they've all been fairly stable until last year,
when everything went somewhat pearshaped. Started off with
teeth issues leaving me unable to eat sweet things any more,
investigations showing that this was most likely a flareup
of my SJS - fine i thought. But then I started having a
severe pain in my right hip which was totally different to
my 'normal' pain - much more intense, dull ache and just
interminable. Much worse at night despite my having a
flotation mattress which I've used for pressure relief (due
to the FMS) for many years, thus keeping me awake and
leaving me worse off the next day. I lost a lot of weight
last year - dropped 12 pounds over a short space of time
(from 110 pounds down to 88 to 90 or so) and I'm 5'7" so you
can tell I'm pretty underweight at the minute. I've a lot of
other symptoms that really don't fit into any obvious
category (shoulder/arm/elbow pain in specific locations with
some swelling in the latter, but not down to my FMS
apparently, localised neck pain, right kidney pain etc and a
host of others), and am now getting a bit concerned. I was
put on OxyContin for my FMS pain 2 years ago and initially
only needed it for a few months over the winter - that
changed last year and I found that not only could I suddenly
not do without it I needed more, although am still on a very
minimal dose in comparison to many at 20 mg. However, it
barely holds my pain and my doc is reticent to up the dose
as yet. My Rheumy says that my pain is not joint related and
given the weight loss and location/intensity of the pain he
too is concerned so has now ordered a bone scan.
I suppose I'm just wondering if anyone else has experience
of similar symptoms in relation to bone cancer specifically
or indeed any other type, as I've also got new abdominal
pain mostly overnight with no other symptoms during the day.
No gynae reason for it as I've had a hysterectomy. Right
kidney is marginally affected by my lupus but not requiring
treatment as yet.
I'm in the UK so would appreciate contact from others
locally too. I should perhaps say that I'm not a
hypochondriac by nature, but my latest round of problems is
making me into one :-)), and I don't normally concern myself
either with my symptoms as I'm well used to having many
undiagnosed ones over the past 10 years or so, but this past
year, something has changed, and I just can't pin it down -
given the intensity and severity of this pain I'm truly
hoping they figure out some cause for it. I'm 45 and am
rapidly losing what little independence I had before last
year - currently can't walk far, sit, or stand without
flaring up in minutes and thus can't really cope with
shopping etc, yet need exercise to prevent the fibro flaring
more and adding to the picture.
Sorry this has been a shade longwinded - but hard to try
and give enough info for you to perhaps give me some
solid feedback. Emails welcome if you would like to
contact me that way.
THanks for your patience and hope to hear from some of you
soon. Romayne (Belfast, N.I.)