Guest guest Posted April 23, 2008 Report Share Posted April 23, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2008 Report Share Posted April 23, 2008 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 Quote Link to comment Share on other sites More sharing options...
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