Welcome to HealingWell and the CFS message board! You are SO right, this is a horribly frustrating illness, a complete mystery for almost all intents and purposes.
Ah, yes. I know all too well what it's like to relate to the "seniors" among a group of people, better than those who are my age. At the last family get-together I attended, I far more enjoyed the time I spent with my 70- and 80-something aunts and uncles, than cousins who are my own age.
I don't know if I have any "remarkable" insights, but I do know of some remarkable research---professional medical research, both private and government funded studies, which have explored these connections about which you are commenting. These studies have confirmed that people who have autoimmune disorders, also have CFS, FMS, MPS, sleep disorder, headache and migraine syndromes, IBS, IC, depression and/or anxiety, and many of the other related syndromes that seem to go hand-in-hand, as well as other autoimmune disorders, more often than those who don't. It can therefore be said that people who have autoimmune disorders have a higher risk of developing any of the same related complex of syndromes. And it's also vice versa, where people with CFS and/or FMS, and/or etc., have a higher risk of developing an autoimmune disorder.
Then there is more research that has revealed the specific genetic implications associated with CFS, FMS, and many of those related syndromes, as well as the similarities to the genetic implications associated with autoimmune disorders. I can't explain genetic things very well, as it's amazingly complicated, so the best I can say is there are important similarities.
Insights aside, until recently, I had never heard of a treatment for fatigue. But a year or two ago, I met someone at a support group, whose Dr was prescribing Ritalin for her fatigue. And since then, I read an article about it (about using it to treat chronic fatigue). It is NOT precribed "as needed", but is given in very low, round-the-clock doses, in a similar way that narcotics are given for pain control.
There are many diet supplements which are said to combat fatigue, but I have very little experience with them. The only one I've tried is CoQ-10. It is very effective, but made my pain worse. However, I know a lot of people who find it very helpful and it doesn't make their pain worse. And as I said, there are others, I just don't know what they are.
I also want to make a couple of comments on what you said about your meds, if you don't mind. You said you just stopped taking them, but I would really urge you to discuss with your Dr, stopping the prednisone. This is a strong drug, granted, but it is not just controlling any inflammation you might have now, it's also preventing more or worse inflammation. (This would be inflammation from Lupus, RA, or both.) Your Dr did not prescribe it lightly, as it's not usually prescribed, except in very serious cases. You may be in a remission, and he might agree to reduce your dose. But if you're in a remission, and you stop taking or reduce the dose, until you go into another relapse, you will be defenseless against potentially life-threatening inflammation. The prednisone, taken over long periods of time, affords very strong and important preventative protection from inflammation, which is not possible to achieve if you simply start taking it again when the relapse begins. I'm not sure I explained that very well, so please at least discuss it with your Dr, if for no other reason, just to be sure that you understand the risks, AND that your Dr understands your feelings. I'm sorry to sound so preachy, but this really is an important matter.
If I might mention one other thing about your meds... I hear you saying you don't feel stronger narcotics, like OxyContin, are right for you. I do hear you saying that, and what I'm about to say is not an attempt to change your mind. I just want to make sure you are aware of the results of recent medical research, regarding the use of narcotics to treat chronic pain. I won't try to explain it all here, but just briefly want to say that this research indicates that (1) people who take narcotics for chronic pain, rarely become "addicted" to it and that (2) the longer pain goes uncontrolled, (2a)the worse it gets, and (2b)the harder it is to control, when one does try. So if your life style ever tragically becomes compromised by pain, please at least consider using as strong of narcotics as are necessary to reduce it to a tolerable level. This is just my simple comment, I'm not trying to get you to change your mind (just to understand all the facts), and repeating that I do hear you say you're not comfortable using them.
OK, now that I have completely alienated you...! I hope I haven't. I do respect that you know what's best for yourself, and after that, your Dr knows better than I do. I just feel I should present you with the facts on those 2 important medication issues.
But I think you have "hit the nail on the head" about there being no effective treatments for these illnesses as wholes. The best we can do at this point, is to treat each symptom, with as few side effects as possible. This means treatments are largely trial and error, and I have to say I hate it. One would think in this day and age, where medical science probably knows everything there is to know about, say, the heart, it could at least treat the common cold. But it can't cure the cold or the flu, and neither can it cure CFS, autoimmune, and related illnesses.
Anyway, I'm glad to meet you. I'm sorry that it's necessary, because you are dealing with so many serious health issues. But glad to have another new perspective, another new voice, to add to board. I'm not at all sure that I even answered your questions, so please feel free to let me know, ask again. Also feel free to reply to other messages here on the CFS message board. Take good care.
brynn, Moderator for Chronic Pain forums
and Chronic Fatigue Syndrome forums