I decided to post my story with the hope even one person can be helped - that would make it worth it. In 1991, without any warning, I was sitting in a chair typing and couldn’t get up. I literally couldn’t walk from the pain and had to crawl down the hallway. Over a few days, I was able to stand up and walk and obtained a PT order from my family doctor. The doctor didn’t really know what was wrong, but she assumed a course of PT would help. The therapist decided to treat this with what I call cookie-cutter PT, where the patient is just handed exercise sheets to follow. After doing the exercises the same evening, within 10 minutes I could not walk. I had burning, electrical current-type pain running up and down my back, and I was terrified. Over the next 5 months, I would try to do the exercises, but they would only make me worse – the symptoms were terrible burning pain over my entire back and a feeling of heat. I couldn’t sit very well, couldn’t really do much of anything. Somehow I would go to work and try to stand up most of the time. At night I would just lie in bed and want to die from the pain – this went on for 8 months. I lost almost an entire year of my life and was extremely depressed, wondering if I would ever have a normal life again. I was finally referred to a physiatrist, who diagnosed me with fibromyalgia (hold that thought for a second). He sent me to a different physical therapy facility, with a treatment protocol of 3 times a week massage therapy preceded by 10 minutes of moist heat to loosen the muscles. Back in those days, before diagnosis codes, physical therapists could handle all therapy like this, e.g., massage, stretching, etc. Unfortunately, that is not the case today. At any rate, after a few weeks of this treatment, I was progressed to riding an exercycle with handlebars that moved as I pedaled, along with gym-type weight machines for strengthening. It’s important to note that during the several weeks of heat and massage therapy, I was not given any exercises to do – it was all therapist-based treatment. The total time in PT was 10 weeks, but I got my life back. As soon as I was discharged from PT, I bought the same exercycle and joined a gym and continued with everything I learned in PT. I can’t say it was an easy rehab – sometimes it was 2 steps forward 3 steps back until I could figure out how many and what kinds of movements and machines I could do. Over the next 25 years, I would have occasional minor relapses but was always able to recover with monthly massage therapy and continuing my exercise regimen. I always wondered why other people with fibromyalgia had such a terrible time but yet I never had any doctor visits at all. Fast forward to May 2016, when I bought a laptop. I would spend hours and hours after work clicking on that laptop. I also used a mouse at work since I work in IT. By August, I noticed when I turned over in bed that I had a spasm in my back. The spasm progressively got worse until the pain was unbearable. I figured out that it had to be the mouse and clicking that was causing this since it was completely on my right side. In October 2016 I obtained a PT order from my family doctor, thinking it was just a relapse that I needed help with. Thus started months of hell – I couldn’t believe I was in the same trap as 1991. The physical therapist informed me she wasn’t a massage therapist and that insurance wouldn’t pay for her to do massage, which turned out to be partially true. She didn’t really understand my condition and again I fell into the trap of cookie-cutter therapy. She handed me exercises, I stupidly did them, and of course the burning and pain spread over my entire back and into my lower back. I also developed trigger point knots literally over my entire back, upper-mid-lower, in my shoulders, down my arms, glutes, and thighs. After 6 visits with that therapist, I discharged myself from PT and told her to document that I was 75% worse than when I started. I decided to read a book about fibromyalgia to see if anything was new in the last 25 years and was shocked to discover I never had fibromyalgia at all. I am a classic case for true chronic myofascial pain disease. I never had overall pain or chronic fatigue, two hallmarks of fibromyalgia. I couldn’t remember exactly what the doctor had prescribed for me in 1991 and I couldn’t find anyone who knew what to do about this condition. I remembered there was massage therapy and heat involved, but I couldn’t remember the details. My 1991 doctor had retired and what I recently learned is that doctors and therapists alike are completely clueless about how best to treat this disease. I couldn’t sleep from the terrible fascial burning. Once again, I couldn’t do any kinds of exercise – if I tried to stretch, I got 100 times worse. Doctors just think a patient is lazy and not being cooperative if she says she can’t do exercises because they make her worse, which is infuriating. I then had an evaluation by a new physiatrist, and he confirmed chronic myofascial disease but said once a week PT would be enough (stupid doctor #1). I did luckily go to physical therapy with the order he wrote, but the new therapist had never treated anyone with this particular condition. However, she had an open mind and paid attention to what I told her. She believed me when I said I couldn’t exercise until the muscles and fascia were smoothed out enough to stop the burning. I did continue to ride my trusty 1991 exercycle during this time, but that was about the most I could do. My physical therapist was using PT tools to try to smooth the fascia and also work on the trigger point knots, but though my symptoms improved in the short term, they came back the same day. After 6 weeks of no improvement, I had a follow-up with a second doctor in the group, who offered to prescribe Lyrica or Cymbalta (stupid doctor #2). Of course, I refused the drugs and told him I didn’t need to cover up the pain and that this was a treatable condition. By this time, I was beyond angry. I knew what I had, knew that massage therapy was the key before I could advance to other treatment, and had a history of 25 good years behind me. I was not going to give up. I tracked down my 1991 retired doctor, who was kind enough to tell me what the treatment regimen was from 1991. I then had a discussion with my physical therapist and my massage therapist so we would all be on the same page. Basically, I devised my own treatment plan and we all had our part. I started 3-times a week massage therapy the first week of January 2017, which I am paying for since it is not covered. My physical therapist is continuing to use the PT tools and has also used dry needling twice for a few particularly bad areas of trigger point bundles of knots. I should mention that before I saw the newest physical therapist, I had seen a chiropractor, who used acupuncture with electrical stimulation to break up the terrible spasm in my back. He couldn’t really help with the chronic myofascial pain disease, but at least he got that spasm to break. It is now week 6 of therapy. I will continue with twice a week massage therapy through February and March, then going to just twice a month to maintain. I have started some simple stretching and have increased the time on my exercycle. I no longer have the terrible fascial burning and pain that made me want to literally jump off of a bridge. I figure I will be completely back to normal by the end of March – right now I would say I am 68% better. In the course of learning about chronic myofascial pain disease, I determined I was not doing enough through the 25 years to really keep this from taking over my life. I will continue the bike and the gym machines, but I will also incorporate more stretching and some yoga. I definitely limit all computer time when I am at home – the mouse is not our friend. I want to tell everyone out there that this is a treatable disease and you do not have to live with pain. If you are a person who just wants to take a pill and not put effort into it, this is not the disease for you to have – you will never get better. Massage therapy is the basis for recovery – other posts from people all seem to mention that massage therapy helps but only in the short-term. I would say it is because they didn’t have enough therapy over a sustained period of time. In my experience twice with this miserable disease, it had to be 3 times a week. I do have to say that the overuse syndrome with the mouse has made this second recovery a bit more challenging than the first time because of the large bundles of knots that I didn’t have in 1991. For those of you who aren’t bored to tears yet, I hope my story has given you some hope. There is no reason why people have to suffer for years with this, and shame on the doctors who do not know how to prescribe the treatment regimen that seems to work best to get a patient pain-free and mobile. I realize that not everyone is the same and maybe one person needs less or more of a particular part of the treatment, but we all have to proceed with a certain amount of trial and error. This is definitely a high maintenance disease – you will always have to have massage and exercise, but that is a small price to pay for living a completely normal pain-free life. Best of luck to everyone!