who's playing this game?
reggikko:
Quote from: ness on 2005 August 21, 13:33:03
fish oil... *shudder*
I take it for chronic fatigue syndrome (the discussion on what that is can wait for another time), it works well there, but does stuff all for the arthritis that it is supposed to be good for that I also have...
Ness
Interesting. I have Fibromyalgia and some chronic fatigue issues that don't fit the fibro profile. May need to buy some fish oil capsules.
Ness:
not necessarily... the fish oil came out of some hideously expensive tests which analysed in minute detail just which fats were in my blood and which amino acids were in my urine - that way they could figure out what was going wrong in the body...
my CFS mainly affected me in cognitive ways (ever forgotten what you were saying quite literally in the middle of saying it? looked at a class of kids you've taught for 18 months and suddenly not known a single name?) and emotional ways - basically I was a depressed and miserable wet rag who couldn't remember a darn thing and could hardly move during the day, but would lie awake all night and be completely unable to sleep... scary days!
the omega 3 fish oils are one of the building blocks of serotonin, supplement that and the body can then make it properly, slowly correcting the problem - without those tests (and the company is no longer in existence), it would be difficult to know which particular oil you may need - could be fish oil, could be evening primrose oil, I even heard of a case where it turned out to be palmitic acid (found in coconut milk)
I do hope you manage to find something that works for the fibromyalgia... I know just how sucky it can be to have a condition that the medical world knows basically nothing about - no sooner did we get the CFS under control than a weird arthritic condition affecting every single joint in my body popped up - sort of responded, sort of didn't, no sign of what it actually is, so no idea of how to actually treat the thing!
Ness
reggikko:
Quote from: ness on 2005 August 23, 06:48:09
my CFS mainly affected me in cognitive ways (ever forgotten what you were saying quite literally in the middle of saying it? looked at a class of kids you've taught for 18 months and suddenly not known a single name?) and emotional ways - basically I was a depressed and miserable wet rag who couldn't remember a darn thing and could hardly move during the day, but would lie awake all night and be completely unable to sleep... scary days!
Yep. All of that is so familiar. And if I take meds that make me sleep at night, I'm pretty much worthless all the next day. I used to have a fantastic memory, but not anymore. This all started for me with a severe case of autoimmune thyroiditis. I have no thyroid function at all on my own. I was diagnosed 6 years ago and other than a few brief periods, I have been unwell and symptomatic all this time. Very frustrating. At first, my endo thought that the extreme pain was caused by the thyroid deficiency, but when my levels finally became 'normal', I was still in pain constantly. The thyroid problem also gave me a heart condition. The fun never ends!
Quote
the omega 3 fish oils are one of the building blocks of serotonin, supplement that and the body can then make it properly, slowly correcting the problem - without those tests (and the company is no longer in existence), it would be difficult to know which particular oil you may need - could be fish oil, could be evening primrose oil, I even heard of a case where it turned out to be palmitic acid (found in coconut milk)
Fibromyalgia is definitely related to a serotonin deficiency. You should see the slew of meds I've been on to try to increase serotonin. It boggles my mind sometimes. I've heard about increasing Omega 3's to help boost serotonin, but I've never tried it. It would be worth some trial and error if I could hit on something that might help. Pain is now at least tolerable most days, but I still have debilitating fatigue and some other things going on. I've been tested and retested for Lupus, rheumatoid arthritis, and numerous other autoimmune diseases.
Quote
I do hope you manage to find something that works for the fibromyalgia... I know just how sucky it can be to have a condition that the medical world knows basically nothing about - no sooner did we get the CFS under control than a weird arthritic condition affecting every single joint in my body popped up - sort of responded, sort of didn't, no sign of what it actually is, so no idea of how to actually treat the thing!
I am fortunate in that I have a fantastic rheumatologist who is pretty aggressive in treatment. The problem is that I do a bit better for a time, and then I'm right back where I started. You're right though, it's not easy having an illness few people understand. And then there are those who don't believe these disorders even exist, which makes me so angry. I'd like for those people to live this for a month or so, and then tell me it isn't real. Trust me, if I could just 'get over it', I would have a long time ago.
J. M. Pescado:
Meh, why buy fish oil capsules when you can just buy raw fish oil and drink it straight from the bottle, like I do?
Ness:
reggikko! that sounds so similar to my story...
about 6 years ago I got Barmah Forest Virus, which is a weird mosquito-borne virus we have here in Australia - it trashed my liver and I landed in hospital with severe pain one night and after heaps of tests they figured I had this virus - and that's what was causing the fatigue and pain - unfortunately, once the virus had gone dormant again (I was told I would have it for the rest of my life, and hopefully it would stay dormant) the fatigue and pain never stopped... they labelled me with post-viral chronic fatigue syndrome and told me to rest (sole income earner working full time and rapidly running out of sick leave, not going to happen!)... time went on, and the post-viral got dropped from the name, that's when we elected to do the tests
from there, fish oil capsules and an amino acid supplement had me improving, the sleep was another issue altogether and after becoming completely dependent on sleeping tablets for a while (not fun!), I started using SAMe (another serotonin building block) and the sleep issues were pretty much resolved. At one point in time I was taking nearly 20 tablets a day with medications and supplements to try to manage my condition.
For a year or so, I did ok - the supplements were working and I had enough energy to function properly in my job (couldn't do much after a day at work, but I resembled a normal human being), vioxx (yes, I was on it for years!) managed the pain levels, and my GP happily kept prescribing it for me until he left the surgery - at which point so did I - all the other doctors would tell me there was nothing wrong with me, even when I had severe sinus infections...
new doctor, no longer happy to just prescribe vioxx, started running tests - I've been tested for them all, too - so many blood tests I've actually got scarring on the inside of my elbow! all negative - and the virus I was told I would never be rid of has gone. My rheumatologist is great - very blunt, and doesn't like me stuffing around with medications - took a year for him to convince me to take prednisone (which basically only happened when I could no longer walk) - now he's pushing the methotrexate line, which is pretty scary! So now I've been labelled with serum-negative rheumatoid arthritis, which even the specialist admits is the label they apply when they haven't got the foggiest clue what the problem is! He's not giving up, but seems to be thinking that we may never discover what it is, but we may be lucky enough to discover a treatment that works...
the SAMe stuff is great - pretty expensive, but it's worth it for the fact that I can now sleep, I'd certainly suggest looking into that one, and if you decide to go the fish oil, try to find a reflux-free one - otherwise, take it half way through a meal, and even though they don't say to do so, keep it in the fridge!
I hope you eventually find success in your treatment... and getting back to the original topic of the thread, it's actually quite amazing how many chronically ill people you find playing the sims...
Ness
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