Poll ME/CFS/FM Functionality Poll

Discussion in 'Symptoms' started by Cort, May 1, 2015.

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What is Your Functional Status

  1. 80: Patient has mild symptoms at rest, symptoms worsened by exertion: minimal activity restrictions

    0 vote(s)
    0.0%
  2. 70: More activity restrictions - functions at 90% of expected, except activities requiring exertion.

    1 vote(s)
    0.7%
  3. 60: Overall functions 70-90%. Unable to work full-time in jobs requiring physical labor

    3 vote(s)
    2.1%
  4. 50: Overall activity level 70%. Cannot perform strenuous duties, but can do light work 4-5 hrs/day

    8 vote(s)
    5.7%
  5. 40: 50-70% of expected. Unable to perform strenuous duties, but can do light work 3-4 hr/day

    19 vote(s)
    13.6%
  6. 30: usually confined to house. Unable to perform any strenuous tasks; can do light work 2-3 hrs/day

    63 vote(s)
    45.0%
  7. 20: unable to leave house except rarely, is confined to bed most of the day, light work 1-2 hrs/day

    32 vote(s)
    22.9%
  8. 10: bedridden the majority of the time. No travel outside of house.

    7 vote(s)
    5.0%
  9. 0:bedridden constantly, and is unable to care for him/her self.

    7 vote(s)
    5.0%
  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I just did a blog on on the End ME/CFS's Biomarker Project featuring the most severely ill. In honor of them the Inquiry of the Day is on functionality. What is your functional status? Take the poll and let us know. (Parts of Dr. Bell's Disability Scale were used.)
     
    Patty May, Dee4dogs, JenCash and 3 others like this.
  2. San Diego

    San Diego Well-Known Member

    Feeling optimistic today. I was a 10 for a long dark time but today I'm upgrading myself to a 30. For now. ;)

    30 bid, now 40, now 40, will ya' give me 40? 40 bid, now 40, somebody gimme 40? Do I hear 40? Can I get a 50 bid?


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    Patty May, Dee4dogs, junib and 5 others like this.
  3. TigerLilea

    TigerLilea Well-Known Member

    Most of the time I'm a 40, but do have the occasional time that I'm closer to a 60.
     
  4. Who Me?

    Who Me? Well-Known Member

    25 probably
     
    San Diego and Severe ME & FM like this.
  5. Foggyfroggy

    Foggyfroggy New Member

    About a 5 I guess. Able to sit up part of the day, walk 35 steps (round trip) to the bathroom 3-4 times a day on a good day. Need help with bathing, need food brought to me. Cannot leave house nor sit up in a chair for more than a couple of minutes.
     
  6. cfsStevew

    cfsStevew Member

    interesting poll will keep an eye on this...
     
  7. Severe ME & FM

    Severe ME & FM New Member

    Hello from North of 49 & thank you for adding me.

    A lifetime of bacterial & viral illnesses, over prescription of antibiotics from birth onward, serious accidents, a broken back, surgeries, 11 mild to major concussions, mental, emotional & physical abuse & here I am today ... living with the 24/7 day to day challenges of injury effects as well as a lot of complex chronic illnesses.

    In 1986 I had trips to Hawaii, different places in California & a day trip across the border into Tijuana, plus being in Vancouver during Expo 1986 with thousands of people from around the world.
    My personal & work life were filled with extreme stress.

    Autumn 1986 brought what appeared to be cold, then some type of flu virus ... leaving me feeling unwell with declining energy ... but pushing through a busy life whilst feeling worse daily.

    First week of January 1987 in emergency gasping for breath ... they did the mask, gown & gloves routine before examining me & admitting me to hospital although they could not identify which bacteria or viruses were attacking me.
    After trying many different antibiotics & antivirals ... something finally slowed it down.

    Glad to eventually go home even with 4 months more of medications ... a trip from bedroom to bathroom required a rest stop in the living room & after a year, I managed to very slowly walk one block.

    An infectious disease specialist described my now non-existent immune system as similar to that of a person with AIDS.

    I've failed GET as I couldn't even do 15 seconds on an exercise bike daily, participated in CBT & learned some useful things ... clearly trying GET & CBT have not been the "miraculous" cure for me that some doctors believe in.

    At times I've been a 0, 5, 10, 15 & 20 ... most often 15 ... a few times there have been brief mini remissions & I was overjoyed when I had short spells of time a few numbers higher than that ... feeling better with less severe symptoms & improved functioning.
    Followed every single time by a crash & worse relapse, lasting longer than the previous ones.

    So many years of all over heavy duty neuropathic pain that can leave me in tears, non refreshing sleep in short increments, head to toe weakness & sometimes being unable to lift my arms, walk, chew or speak, costochondritis, plus body wide muscle spasms than can distort my limbs, spastic walking, seizures, neurological deficits, eyesight issues & all the other things I'm unable recall at this moment in time ... individual symptoms come & go or some appear together only to change 5 minutes later ... a never ending, never knowing daily & nightly harsh surprise.

    This week brought the ambulance to take me to emergency with what presented as a possible heart attack & after being monitored as well as having a CT scan with contrast dye to rule out blood clots ... I was sent home by a doctor who had no working knowledge of ME or FM stating it is likely musculoskeletal & to take Tylenol or Advil.
    After explaining those have had no effect since the 1980's, i was told "well then don't take anything."

    I've done relaxation breathing, prayer & meditation, progressive relaxation exercises, daily stretches, flexing & movements as my condition allows.
    Many strengths, formulations & combinations of Morphine, Oxycontin, Oxycodone, Butrans patches, specially compounded Ketamine spray, Cesamet & a host of other medications help for a bit but have not had any long term effect.

    After watching Dr. Sanjay Gupta's excellent documentaries, Weed, Weed 2 & Weed 3 ... my next step is a trial of organically grown medical marijuana with the hope it can take the edge off the constant pain, ease the spasms & help with sleep ... which I will welcome & be grateful for.

    My plan is a combination of water processed oil (instead of solvent processed) as well as edibles to do a comparison ... I may consider vaporization down the road but do not want to damage my lungs by smoking it.

    Four general practitioners in a row refuse to sign the papers so I'm hoping number 5 will be the one!
     
    Patty May, SuZeeQ and Merida like this.
  8. Merida

    Merida Well-Known Member

    I am a biologist ( former clinical diagnostic microbiologist) and have sought answers/understanding for 17 years. . History: I was bedridden one year - close to death- after a 'chiropractic ' adjustment of my neck and pelvis - severe twisting of pelvis and neck. No part of my nervous system was working - visual and hearing was distorted, lost bladder/bowel sensations, couldn't stand, terrible reflux/ apnea/ unable to sleep for 4 months, severe abdominal pain, many odd symptoms that came and went. I improved with specific expert work directed at stabilizing my atlas and sacrum - with specialized chiros - sacro- occipital expert and a NUCCA chiro. Also, gentle pool for a year/ 3 times a week. The pool was critical - could only sit in water at first. After a few years I had improved to a 50 or 60. About 10 years ago I got a virus and a decline began. I still think that my physical injury altered the blood/brain barrier enough to make my CNS susceptible to 'attack.'

    There is another part to this. Many of us have some form of scoliosis, and this issue can be associated with excessive asymmetry in the body -both the bony 'exterior' and the neural tube itself. The sacro- occiptal chiropractors and traditional osteopaths / craniosacral- sacral literature have information on this. Can just the presence of scoliosis indicate a altered blood/brain barrier? My son had CFS symptoms at age 4 , following a lab confirmed infection with EBV. He was sick for a number of years - on and off. He was dx with scoliosis as a teen. My Mom had scoliosis and also chronic fatigue.

    Gee, I am having trouble editing this. Hope this posts without fragments at bottom??
     
  9. Merida

    Merida Well-Known Member

    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.
     
    Patty May, Grace2U, SuZeeQ and 3 others like this.
  10. Who Me?

    Who Me? Well-Known Member

    @Merida @Cort without paragraphs I have zero chance of being able to read this.

    Please go back and edit your post so there is a lot of white space. It doesn't have to make sense where the breaks are. Just that there are some every 2-3 sentences. Thanks!
     
    Maureen, JenCash and San Diego like this.
  11. San Diego

    San Diego Well-Known Member

    I second this motion.

    It seems such a picky request, and certainly one that I wouldn't have comprehended before my brain became affected by ME. Seems many of us cannot read if there's not enough white space.

    Thanks!
     
    JenCash and Who Me? like this.
  12. Katie

    Katie Active Member

    I am doing a bit better this year. have gone from 20-30% to 30-40%. However, I find the time of year makes a difference. I live in the beautiful Northwest, lots of rain and darkness in the winter. Usually go to Hawaii to remedy that but the trip wears me out. However, I'd rather feel yucky in sunny Hawaii than at home.
     
    Patty May likes this.
  13. TigerLilea

    TigerLilea Well-Known Member

    I'm also in Metro Vancouver. I don't mind the rain and darkness. I find that I sleep much better in the winter months than I do once it warms up outside.
     
    San Diego and Katie like this.
  14. Katie

    Katie Active Member

    we've had a pretty good winter all in all. I like the warmth and sunshine. We have AC which makes a huge difference in the summer.
    Do you happen to go to the CCDP (chronic complex disease program) at Women's Hospital?
     
  15. TigerLilea

    TigerLilea Well-Known Member

    No, I never made it to the CCDP. When I first enquired about it there was an 18 month waiting list. Since Dr. Bested left I don't really see the point of going there now. I've haven't heard anything good about the programme, and my S-I-L who has FM, has been told by several people that it is a complete waste of time. I don't think anyone really understood what Dr. Bested did when they hired her and set up the clinic. They wanted quick 10 minute visits which we know doesn't work when it comes to CFS or FM.
     
  16. Katie

    Katie Active Member

    Yes, unfortunately Dr Bested left when the Minister of Health wsa pushing her (the clinic) to take in more off the waiting list. I was fortunately amongst the first set to be seen. My app'ts were 2-4 hours long. I had fantastic help at the beginning. My doctor is very in-tune to all current studies. However, now I can't get an app't with him, I have to go through the nurse clinician first. What we need are many more clinics like this enabling the doctors to do their jobs properly but right now the way things are with the huge waiting list then the clinic is stuck between a rock and hard place. Very unfortunate. Dr. Bested and the others (many have left) were pushed against the wall with what they wanted to accomplish and what our government (health care) will allow.
     
    Justarose123 likes this.
  17. Kate

    Kate Member

    Was it on Health Rising I learned that we have malfunctioning microglia? I also read that we have cannabis receptors on these same microglia. I draw no conclusions except to add that the receptors are there for the endocannabinoids our bodies naturally produce. Perhaps you can find these studies and present them to your doctors. The docs feel vulnerable because they have little legal protection and a lot to lose, or so one told me who gave me a three month permit to try it. The younger ones are less afraid it seems. Maybe ask the dispensaries what doctors are comfortable recommending it.

    It is legal as a recreational substance in this state so access here is a non issue. I am really interested in herbal remedies, low dose Quicksilver artemesinin to help the Epstein Barr, don't know yet if it did, need another test, but cannot use medical cannabis because it really knocks me for a loop even while reducing my symptoms. But we are all different. I am old now and hence hear of many peers with health problems trying cannabis after conventional medicine has failed for them. I did a lot of research on cannabis at one point when I was considering it for myself. The medical dispensaries are a good source of information on how to use it. Some swear by it for CFS. Some with Fibro find that it is the best thing they can find for pain. It is possible to use it medicinally without getting very high especially if you choose low THC, high CBD strains. I know someone with glaucoma and severe headaches who is using it without getting very high to reduce her eye pressure and nothing before has ever worked for her headaches.

    She advised to dose as a tincture dilute some of the oil in some high proof alcohol, Everclear or Bacardi 151 Rum to make a tincture in a dropper bottle. Shake, and you can self titrate with a dropper for accurate dosage. Then wait an hour or so to learn of the effects. Try one or two drops at first, who knows how strong it is. An overdose won't hurt but is unpleasant! If you add it to a beverage it must have fat in it and it is best warm, I think she uses coffee with half and half, not good for us though, or the oil will stick to the side of the cup. Or drip it on anything edible. This will give you the body high, pain application. She said the strains are different and you have to match you ailment with a strain by dispensary advice and trials. I tried tincture for sleep issues and I slept well.

    The dispensaries told me if you keep the oil in your mouth, say drop it under the tongue or on a cheek, it gets absorbed by mucous membranes and goes straight to the brain rather quickly, if you eat it it goes through the liver, metabolizing slowly and not all the chemicals reach the brain, thus the wait when eating it and it is more of a body high. It is hard to use it through mucous membranes as a tincture for the tincture will burn your mouth. Maybe you could dilute it in glycerin, I don't know but someone will. You might want to try both brain and body applications. I guess smoking also bypasses the liver.

    At my local health food coop medicinals department they told me of a man who had cancer in his nose who applied CO2 extracted oil to the nose surface every day and took pictures. He brought them in. The clerk said you could see the cancer coming out on the surface of his skin and then going away. Fascinating. She said people use the the oil on moles too to make them go away. I never heard of water processed oil you mentioned but I have heard of CO2 which is supposed to be nontoxic.

    Another friend, a Vietnam vet with PTSD, had a vape brothers vaporizer which he let me try. If carefully used there should be very little or no smoke. And it was surprising that the high was less than expected. It was a lovely experience, kind of like a hookah, very mellow. So lovely in fact that I gave it right back to him for I could imagine sucking it all day long in bliss land. If I wanted to smoke this is the means I would choose.

    Most of this is hearsay but the stories are pretty interesting. Actually low dose pregnanelone and adrenal support through The Clymer Healing Institute is really helping me right now, but maybe cannabis could help you. I have never suffered with much pain.
     
    Merida likes this.
  18. JenCash

    JenCash New Member

    I am the same
     
    San Diego likes this.
  19. JenCash

    JenCash New Member

    I seem to fluctuate between 15 - 25.
     
  20. Kate

    Kate Member

    Me too.
    Once upon a time I was a typeface designer always interested in legibility. One of the difficulty with internet texts besides the paragraph lengths is that the line length is WAY too long for easy reading no matter who you are. Line lengths should be around seven average sized words for best legibility. Plus the typefaces tend to be sans serif which are tougher to read than serif faces. I cuss a lot about dense paragraphs which I cannot read either. These line lengths are double or triple what they should be unless I make the font HUGE.
     
    Maureen and JenCash like this.
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