RE: doing poorly...(and RA question)

[Guest guest]

Hi Donna, well this is a big subject but I’ve had a similar experience, so I

will have a go, if you like. First of all, as someone who first got ill when

my kids were 3 & 5, you deserve a medal! And yes, Chuck E Cheese is just a

terrible environment for folks like us! Flashing lights, no daylight, the

noise levels etc. and sugar…bad girl…overdoing…but almost inevitable with

kids!

Now to the joint stuff. It is typical to have joint pain without redness or

swelling in ME or CFS. I have had joint pain for many years, for me

especially in my hips (never the same after childbirth), but also one joint

or a pair will flare up and stiffen (and may be a bit swollen, and hot to

the touch though not reddened) for a few days…very painful! And yes,

sometimes the whole shebang seizes up and just hurts.

But I did finally make it to a Rheumatologist…and he just got totally

confused! Without the redness and swelling they don’t really know what to

make of you. I did have the MRI and bone scan, but all that showed up was

some possible damage in my SI joint – that showed in the X ray but not the

other scans.

He eventually concluded I had a “Nonspecific Inflammatory Arthritis”,

somewhere in between RA and AS. But half of people who present with

arthritis symptoms do not “bing” on the RA blood test…even if that’s what

they have…it’s not that reliable a test.

As I am anaphylactially allergic to virtually all pain killers, there was

not much he could do. But, I have achieved a pain reduction of about ¾ by

using herbal/enzymatic anti-inflammatory agents. I had started taking

Curcumin (the standardized extract of the spice Turmeric – not very

expensive) about a month before the bone scan, and my pain had dropped right

down, which is why I think the inflamm did not show. Now I also take a

product (recommended by my alternative practitioner) called “SerraNatto”,

(made byBiomed), which I understand to be enzymatic.

I really recommend this route, as there are not the side effects as with

such drugs as Celebrex or long term steroid use. I’ve heard it said that

Curcumin is as effective as NSAIDS (no I can’t source the quote or

research!), all I can say is about 3 weeks after I started taking it there

was a marked (even incredible) improvement of my high chronic pain levels,

particularly the joint stuff, which got a lot worse after my big relapse 2

years ago. Now I just get occasional episodes that are much milder, and that

resolve quite quickly.

But I also avoid flare triggers as much as possible…like overusing a sore

joint. But as a mama of small children, I know this is not always possible!

My kids are grown now so I can suit myself. TC and I hope you are feeling

better soon. Aylwin xox

[Guest guest]

Hi Sheila, I totally agree that the winter weather has something to do with

pain levels…and for me particularly, the level of damp more than the actual

temperature. I say I don’t have SAD (seasonal affective disorder, basically

winter blues), but DAD…Damp Disorder LOL! Aylwin xox