Hello
@junkcrap50....you did a fine job of pulling together all of the presently know info of events leading to ME/CFS/FM. Thank-you for doing so. I'm one of the victims of many of the diagnoses you noted.
I keep forgetting it, but a pituitary tumor led me to my first MRI, which was quickly hijacked by my neurologist who had found Syringomyelia. (He had volunteered in a Third World Country and recognized it). I had also done severe nerve damage to the l. side of my body. The neurosurgeon noted that I also had Arnold-Chiari Malformation. Of these, the easiest solution was bromocriptine for years to control the pituitary tumor.
The week following diagnosis, I had emergency surgery b/c hydrocephalus was dangerously high, and it was caused by one of the cysts caused by my Syringomyelia. I was never even close to normal after that surgery (which is no longer done, by the way).
About 6 mos. later I was informed that the surgery had failed and I was told about a neurosurgeon at one of the Medical Schools, a man from S. Africa who recognized Arnold-Chiari and knew about a new surgery being used to control both the Chiari and the SM. our years later, after he had perfected it, I had the surgery. It was via the brainstem, left me feeling some pain after the first difficult night, but it took about 2 wks. before the skull knitted together and didn't feel squishy. It did clear the hydrocephalus and most of the other symptoms, including severe neck pain, weakness in my legs, the cape like pain of SM, etc., outright disappeared or at least lessened. The insurance was difficult and I went home in 3 days. That was fine....I'd rather be there.
Now this is very important: You should never go for ordinary physical therapy (PT), ask for a myofascial specialist (look up fascia to understand why this is important). Most PT's with a Ph.D. are aware of this specialty, and I'm presently undergoing it again...probably 30 years after the first surgery. It's helping immensely after a series of 11 falls that I sustained over the past 10 mos. or so. It was the last that did me in...I fell against a piano bench and was left in severe pain/more severe pain. I'm told my balance is good, which then leaves seizures as being the cause. It's helping and I would recommend this to those who feel they need it. Talk to your neurologist or rheumatologist (although you really should see a neurologist to rule out other causes), about obtaining a prescription. PT has apprarently undergone tremendous changes since my days. Now myofascial therapy is a given and the patient is checked (supposedly) for trigger points and myofascial problems. I had just about finished with trigger points...they were disappearing on their own when this occurred.
Yes, a car accident, sports injury or any type of trauma can cause SM. However, if you have ACM (Chiari) and SM together, it's because of a congenital condition (you were born with it). An early tip-off is l. sided scoliosis (I was forever told to sit up, as I really couldn't, stand up straight, etc.). My childhood was a series of heavy braces and/or partial body casts and this went on for years. A specialist from a nearby city came in to a locale about once/wk., and we were seen there. I also suffer from the most severe lordosis anyone has ever seen and kyphosis. The myofascial therapy is helping with the latter. I do exercises that I'm give for about 1 hr./day. Ask your child's Pediatrician to do a scoliosis check...they usually do anyway, but to tell you if it's l. sided. Then see a pediatric neurologist or probably even a neurologist. If you have a Shriner's Hospital for Children, all treatment is free, so you may want to bear that in mind. (For children only.) I don't know of the common ways of handling this in children, but the earlier it's attended to, the better. At the very least get a baseline MRI and pick up a copy and a report for your own file. NOTE: The report for me did not pick up on either the SM or ACM. So it's important to have your neurologist and neurosurgeon read the copy you have.
So now I'm 73 yrs. old, and a lot has happened in those years. The pain was uncontrollable in the beginning. We had Elavil, and that was it. Then along came our savior, gabapentin, it was an anti-seizure med that also controlled the pain signals from the brain to the spinal cord. It let me get out of bed and walk again. My arms can't be used b/c of too much nerve damage. Nerve pain is difficult to treat...a burning pain that never ends, although Ace Ice Packs are good for it. Buy the fabric covered large ones and put another tea towel or something over them....20 min. will numb most pain. Lately, I've been getting some relief from a heating pad set on low for about 20 min. Don't overdo it, or you'll end up in worse pain. 20 on, then 20 off is the rule.
We now have a few drugs that can help treat the pain activity from the brain/spinal cord. I'm presently on Lyrica. The pituitary tumor disappeared at some point, I don't know when. I had a very early menopause...started at 42 and hot/cold flashes are still a problem. Anxiety is a major problem for us. Talk to your doctors, starting with your neurologist. There are meds that aren't addicting, and you may/may not need one. I was able to get myself out of the first round of anxiety...attended special meetings and even bought the AA Blue Book and lived by it. No, I've never had a problem with alcohol and now don't drink b/c of meds. After I had shingles three times in a row.....a fourth a no. of yrs. earlier, I had incredible anxiety. I then had to go on meds, and still use them....probably always will. I was taken off the med during my last hospitalization. The drug the doctor wanted to put me on was even more addictive than the one I was on. My neurologist was furious as was my Pain Specialist. Every one of us knows that drugs are reduced very slowly...I'm still annoyed at that doctor.
Recently I was hospitalized 8 times in 10 mos. All different problems; all serious. I have Autoimmune Encephalitis, a relatively new illness, had severe seizures that resulted in a fall of 6" (yes, inches) and I broke my wrist. Now I have pain in both hands. Rib problems, which I've had since this saga began probably 35 yrs. ago, 5 stents in my heart (2 added during recent hospitalizations). even though my diet could be featured in a health magazine, and a serious problem with my carotid artery, which is 98% blocked and I'm supposed to have stented in the near future. ( Genetic hyper-cholesterol). I'lI finish the tests and will talk to the Dr. doing it next week...if he'll touch me, that is. The seizures left me unconscious for 2 days during two separate visits...not good for the brain, as you can imagine. They're under good control with Keppra. I was losing the vision in my l. eye, then suddenly the r. one a few days later, headache and then my l. leg simply wouldn't hold me. I thought I answered the questions my husband asked, but not so. OF NOTE: I did not have the usual symptoms of a stroke and actually didn't have one. Fortunately I was hospitalized before the seizure and the doctors saw them. During the last hospitalization I was so close to death that I could feel it....no, I wasn't afraid. If I'm bedridden for too long, the myofascial problems take over and you feel nothing but pain and a feeling of being locked inside your own body. That's why I wanted to go for therapy...I have a great neurologist and wish that all of you could find one. He has been with me every step of the way since this began.
Sleep problems are severe. It would seem that Steroids combined with the new short-acting anesthetic, is a major culprit. I didn't have proper sleep (and I'm not talking about 8 hrs./night, but 3-4 is great for me) for about 2 mos. after the last procedure. I'm a patient with a lot of conditions, thus making me difficult for doctors, and anyone who is in contact with me. I'm extremely kind and courteous to them and always have a list of questions. Since I forget easily, they're written down. It takes time to learn to focus, sit for a movie and my love...reading, etc. Please bear that in mind. I wish you better days (and they come and go). Lenora. Note to Moderator: Please do not shorten. The information is important to others.
