Hi, Lee. I just registered with this site and was intrigued by your post. I was diagnosed with fibromyalgia, MPS, and CFS in 1983. My rheumatologist told me that I had probably had these conditions most of my life and that they suspected it was linked to immune-system, sleep, and other neurological disorders, but they didn't yet understand the mechanics. I have numerous hypersensitivities and allergies to environmental and chemical substances, especially medications, particularly anesthetics and pain meds, as well as antibiotics and most everything else. During the first few years following my diagnosis, we went through every medication available at that time that I had not already had allergic reactions to, including anti-inflammatories, muscle relaxants, anti-depressants, etc., but nothing helped the pain plus I just had more allergic reactions to the new meds. Since I had to work full-time to support myself, I had to develop methods for "managing" this condition so I could function without the aid of medications. Despite numerous medical leaves for severe attacks over the years, I did manage to work for more than 30 years in fast-pace, high-stress corporate staff positions despite this and other chronic medical conditions before finally becoming disabled by them. However, this is NOT to say that this was easy to do, and I know that what works for one person doesn't necessarily work for everyone.
I was fortunate in that I had a birth defect in my lower spine that was damaging my spinal cord and sciatic nerves until it was discovered when I was 20 y/o. I had 3 surgeries in 3 years to fuse the vertebrae, repair damage, and remove scar tissue. Prior to the surgeries, I was very athletic and fit which, of course, helped to reduce the stress on my skeletal frame and joints. Furthermore, I grew up in an extremely physically and psychologically abusive home and was beaten if I even mentioned the constant pain in my back, legs, and feet. I was also extremely defiant - at a very young age I recognized that my parents really enjoyed inflicting physical and emotional pain on me; since I was too small to defend myself against them, I deprived them of their enjoyment by refusing to flinch or cry or let them see any indication of my pain. In order to do this, I had to separate myself from my body in a sense by consciously creating a separate persona that knew no fear and felt no pain - a persona that I could "step into" at will. So, by the time I had the back surgeries in my 20s, I had already developed techniques for dealing with pain - techniques I continued to develop and modify over the years which have also served me well in managing the fibromyalgia, such as redefining "pain" - moving the "pain" marker up the spectrum bit by bit - substituting "intense sensation" for the word "pain" since I know that the fibro "intense sensations" are essentially false alarms - I already know what the problem is, so I don't need to be "alerted" to it - it is not life-threatening and does not require my immediate or full attention. But, please understand that learning to "trick" and use your mind this way takes a lot of practice and mental energy to maintain focus and concentration - and this is especially difficult when you are emotionally stressed and physically fatigued - then I use warm or cold compresses directly on the affected area, and take a couple of extra-strength Tylenol (allergic to ibuprofen, of course). The only other thing that has ever helped my pain is injections of cortisone directly into the areas under attack. Although temporary, it does give a degree of relief for a few days, and the pain is not quite so intense when it returns.
When I was diagnosed with fibro in 1983, there really wasn't much information available and meds either did nothing to relieve the pain or were not an option for me. I learned all I could about fibro from my doctors and figured out bit by bit what did and did not work for me. Although the techniques I had developed previously were helpful in tolerating the pain, I had to develop other techniques for managing the associated intense fatigue and neurological problems (neuritis, insomnia, brain-fog, vision problems, migraines, etc., etc.). Over the years I found that consistency was the key - consistent and appropriate diet, exercise, rest, and stress reduction. It's like walking a tightrope - poor diet, strenuous exercise, lack of rest, and too much stress throws the balance off. Exercise must be gentle - stretching, walking, swimming; going to bed at the same time each night whether you are able to sleep or not - if you can't sleep, do mild stretching using the bed to support your weight both at night and upon waking - take warm showers or baths before bedtime - do light reading to distract your mind from the physical discomfort and stresses of the day - don't get upset about being unable to sleep, and don't get out of bed and pace about because this will only pump adrenaline and other stress hormones into your system and make the fibro worse; avoid/reduce known dietary offenders (caffeine, refined sugar, etc.); and keep your mental attitude realistically positive - don't get upset and stress about the fibro because it will make it worse - it is what it is - don't allow others or yourself to impose unrealistic expectations on you - avoid/ignore lay-people who delude themselves that they are medically qualified to evaluate, diagnose, and prescribe treatment for you, and who berate and belittle you because of their ignorance and personal biases and dysfunctions. Learn to be very patient with and compassionate towards yourself, and understand that fibro and other such conditions have nothing to do with your identity, the quality of your character, or your mental competency and stability.
I am 61 y/o now; although I have developed many coping techniques over the decades, I am still in constant "pain" and I still have severe "attacks" from time to time that can put me down when I allow things to get out of balance. The important things I have discovered about managing fibro, etc., are to keep gently active, keep the muscles strong, and keep the muscles, tendons, and ligaments stretched and flexible; don't remain in one position for prolonged periods of time; don't sleep too deeply because I need to naturally change positions during the night, otherwise I can't move the next morning; rest when my body tells me to rest regardless of the criticism or expectations of others. Surround yourself with the most caring and compassionate people you can find - basically, take charge of your condition and just do whatever you need to do whenever you need to do it in order to find and maintain your "balance" by trial and error - find the techniques that work for you that help you establish that zone where you can function best and have better quality of life.
Although my intolerance of pain meds due to my hypersensitive immune-system disorder is not as severe as your unique condition, Lee, don't give up - medical knowledge is advancing more rapidly than ever. In 1973, my neurosurgeon did try a new device at the time - it consisted of a couple of leads that I stuck on my skin that were connected to a little box that sent an electrical current through the nerves between the two leads to disrupt the pain signals along the nerve pathways, and I could adjust the intensity of the electric current. It didn't work very well for me and eventually my doctor had to resort to injecting cortisone directly into the areas surrounding the "inflamed" nerves. But, I know they have since further refined similar devices - perhaps this is something you can explore since it disrupts the signals directly at the site so they never even reach the brain.
I hope you find something helpful in my words, Lee, and that you can find ways to improve the quality of your life.