Poll ME/CFS/FM Functionality Poll

[Terresa Lewis]

I'm usually at 40. I drop to 30 about once per week. And 20 when I overdo it even slightly. In the past six months, that's averaged 1 or 2 2-3-day stints days per month.

 

[Justarose123]

I think I am about 45-50 as long as I can rest a few hours away.
Just please don't add to much stress or I am just about useless. It effects me mentally and physically.
Honestly I feel like a shadow of my former self? And I miss me! Rita

 

[Grace2U]

Okay, seemed to have worked. Next point: I have tried every physical/ body therapy known, and my sacrum is still out of place and dysfunctional. Apparently, the ligaments that hold the sacrum in place ( muscles don't do this job!) are injured. According to osteopathic / sacro- occiptal literature and various orthopedic surgeons ( Alan Lippitt, MD) the pelvis is the foundation of the musculoskeletal and central nervous systems. Makes sense as the filum ( non nerve tissue) attaches to the end of the spinal cord at about L-1/L-2 and continues down inside the sacrum to fuse with the ENTIRE lining of the CNS ( dura/meninges) at S-2. Then this non nerve tissue continues downward to fuse with the periosteum ( lining of bone) of the tailbone. So changes in the sacrum/tailbone can influence tension and torque in the entire CNS. Whew. Yes, my tailbone is twisted. Cranial sacral literature makes it clear that the sacrum and occiput ( bone in back of head) reciprocate with each other. A twist in one produces a twist in the other bone. This is all because of how the dura-meningeal system ( the lining of the whole CNS) is attached. The dura is extremely tough - could hang a 1200 pound weight on it. If you think back to the evolution of vertebrates - when they were all tube like organisms and the head end looked like the tail end- it is not so bizarre to imagine the primitive dura- meningeal system attached at both ends and reciprocating movement. Anyway, Alan Lippitt,MD ( orthopedic surgeon/ specialist in pelvis) states, " Any alteration in the normal mechanics of the pelvic girdle will have a profound effect on the function of the entire musculoskeletal and nervous systems." I have no doubt about this, and think this is why women tend to be more symptomatic and compose the majority of FM/CFS cases - wider, inherently less stable pelvises. Plus, women have twice the rate of scoliosis. There is more, but I am worn out. Hope Severe FM /ME person reads this.

Once again.....thanks for the info Merida Your posts seem very relevant and timely. The pain I experience in the spine "travels".....sometimes I literally feel the movement....from the uttermost top C-2???....to the sacrum area. I've always thought the spine pain is due to bulging disks... never considered the possibility of "being out of wack"? I have mild scoliosis, but also a SCS was implanted and then removed at C-2. Worse medical decision I ever made

My Functional level is at the greatest 20%. Again....thank you!

 

[Dee4dogs]

I find it interesting that the majority of us rated at 30. Perhaps it's because when you get to this extreme level of health you've finally found the best source of information.

This has been a progressive illness for me (I'm sure for many people). For many years I was able to stay employed. Now I'm unemployed but forced to find work again because of no other means of income and filing for disability is too lengthy of a process. If I fail I do not have Plan B. I have to turn it over to the big guy and take it one day at a time or my anxiety will have it's way with me.

Sleep & pain are my primary issues right now. I fall asleep at my dining room table at my laptop all the time. Just this week I fell asleep eating my diner. It was late, 10 pm...a large salad. I woke up with my face resting on top of the bowl. (Yes funny visual!!) I had eaten some fish earlier and typically don't eat this late. I've had a CPAP for a few months now but it only appears to be helping by providing consistent oxygen as I stop breathing.

Pain meds (for herniated discs) concern me as my body adjusts to my dosage too quickly. Which so far has resulted in an increased dosage monthly. My leg pain most often exceeds the herniated disc pain. Tomorrow back to the pain mngmnt doc as my feet & ankles are swelling. Vascular issues run in my family and I carry a gene making me susceptible.

 

[Merida]

Once again.....thanks for the info Merida Your posts seem very relevant and timely. The pain I experience in the spine "travels".....sometimes I literally feel the movement....from the uttermost top C-2???....to the sacrum area. I've always thought the spine pain is due to bulging disks... never considered the possibility of "being out of wack"? I have mild scoliosis, but also a SCS was implanted and then removed at C-2. Worse medical decision I ever made

My Functional level is at the greatest 20%. Again....thank you!

Grace2U,
OMG. Cort posted an article several months ago, "Shortness of filum terminale represents an anatomical specific feature in fibromyalgia: a nuclear magnetic resonance and clinical study," Mantia et al. This translates to abnormal tension on the spinal cord according to the researchers. They did not mention tension on the dura, but my osteopath believes this is a major problem. In other words, they lining of the CNS is tight, as well as the spinal cord.

It is appreciated by scoliosis experts ( Dr. Valentyn Serdyuk for one) that scoliosis causes a pelvic tilt and rotation of vertebrae - including the cervical vertebrae. This rotation of vertebrae in the neck can affect blood flow to the brain. So, I can imagine a neural tube that is tight and has a torque in it. Stretching or even walking can stress the whole system - including the blood flow ??

Yes, I had a Interstim implanted for GI function. It was a mess. Had it removed. Took a long time to recover.

So, I am trying to solve this in another way. I must post in the Alternative Healing section when I have energy. Have had interesting experiences, but still not well. But not giving up.

 

[tatt]

actually I don't like this poll because it misses the point. I can do things today, I just can't do them tomorrow as well. Also some days are better than others. As long as I don't do anything strenuous I'm not confined to the house but if I do something like trim a hedge for 20 minutes I have to rest for several hours. It's also rather depressing to be reminded that I'm still pretty ill when to me there's more difference between 20 and 30 than between 30 and 40.