Recent Wisdom From My Mom

This space is designated for whatever my mom wants to talk about. Because she is smart. And I think she deserves her own page. Take it away mom!

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Hey All. I wanted to share some helpful resources for Fibro/CFS/Autoimmune Disease Sufferers. My mom is basically the research Queen of the illness. So these are what she finds most helpful. I hope you are having a healthy day. If not, rest rest rest.

xoxo, Mary

cfids.org

http://www.pandoranet.info/

cfsknowledgecenter.org

AboutMECFS.org (my mom highly recommends this one because it has all the latest research and blogs. It’s like an online support group.)

cfsclinic.com (This is my doctor and her website)

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Since Mary has actually designated a spot for my so called wisdom, I thought it might be a good idea to actually write about a few things that could be helpful.
First it is always good to know what you are dealing with when it comes to an illness. That has been perhaps the most frustrating part of this illness that has totally changed my life for the last 24 years and Mary’s for the last 18. I was 34 years old with no medical history with the exception of migraine headaches (2 or three a year) and neck pain from a skiing injury at age 22, when I got what seemed like the flu ie fever, sore throat, swollen lymph glands, bad headache, muscle aches and profound fatigue. When I wasn’t any better in 2 weeks I visited my doctor who ran all of the tests and could find nothing. I started experiencing daily severe headaches along with memory and concentration problems. After a year of these symptoms waxing and waning but never really improving I was given the diagnosis of CFS —a chronic debilitating syndrome for which there was no known cause or cure. I kept up with the little research that was going on and working with my doctor treated each symptom as best we could. One very puzzling and challenging symptom was that every time I tried to exercise I got worse. My usual M O of just mind over matter and pushing through pain no longer worked with this mysterious illness. My attempts to do that just landed me in bed for sometimes 2 weeks. My life had a new normal which was extremely hard to adjust to as a wife and mother of 4 young children. I did the best I could always hoping and praying that science would find out what this was and learn how to treat it.
Mary, on the other hand was 9 years old when she also contracted a flu like illness that never went away. As I watched this flu linger and pediatricians not come up with any explanation i knew the all too familiar symptoms and was devastated that my child would now have to deal with the disabilities of this illness.

That was 1994 and this is 2011 and we have learned a lot more about what this is or isn’t. We found a specialist, Dr. Nancy Klimas who is a professor of immunology and who has been researching this illness for the past 20 years. Her research and knowledge of this illness has at least given us some understanding of what we have been dealing with. After extensive interviews, tilt table tests, exercise physiology tests and over 50 blood tests this is what we know about what this illness is doing to our bodies.

Dr. Klimas believes it is either a virus that we contracted that much like HIV is damaging our immune systems or an autoimmune disease set off by our bodies fighting off the flu like virus we contracted and now attacking our own tissues (mostly neurological tissues). Our test results demonstrated very similar immune system profiles as follows.

Mary has:
Only 10% of the natural killer cells she should have
Of that 10% less that 10% are functional. This can allow other infections to develop and persist

Her immune system, measured by something called cytokines is ratcheted up 10 times the normal which means it either is fighting an organism or thinks it is. Cytokines are proteins that are expressed by the immune system when we have the flu and they are responsible for the painful muscles, fever. sore throat and profound fatigue we experience when we are sick. That’s why she feels so bad all the time

She also has Lyme disease which is not believed to be the cause of this illness but rather an opportunistic infection due to a weakened immune system…lack of natural killer cells… which causes more pain and fatigue

She has autonomic nervous system dysregulation which causes a heart condition called postural orthostatic tachycardia syndrome (POTS for short) basically whenever she stands up her body is unable to maintain her blood pressure and it drops dramatically causing her heart to race among other things.

She also has low blood volume due to the autonomic nervous system dysregulation and her adrenal glands have stopped producing the Adreno Cortico Steroids and has brain inflammation which is why she gets the terrible headaches

The exercise physiologist found that she can only exercise for 3 minutes before her body switches from an aerobic (oxygen using) metabolism to an anaerobic metabolism which starts to use Co2 and causes muscle breakdown and many more negative effects to the muscles which is why she feels so bad the day after any exercise of longer than 3 minutes.

These are the things we found in the last 6 months and although there have been some treatments and medicines 25/day that have helped she still experiences horrible muscle pain almost constantly, g migraine headaches, and an exhaustion just like you’ve run a marathon and then gotten the flu. I can identify with all of these symptoms because I experience them all as well. What happens is you become more and more isolated from friends and family because the effort it takes to be in a relationship is most of the time just too great and when you do try to be normal and experience normal fun day with friends you may end up in bed for a week. You end up always being on the taking side of the relationship because you have nothing left to give. It’s a very sad statement but true and there are thousands like us.

There is good news on the research front and I will go into that next time. Until then here is my wisdom for the day.

The universe will provide whatever experience is necessary for your spiritual growth. When you can embrace the lesson the experience changes.

53 thoughts on “Recent Wisdom From My Mom

  1. Great information. I am sorry both you and your daughter have this disease. My son and myself have fibromyalgia. I’ve had it many years along with other malaise but my son (who is a grown man now) was just recently diagnosed. He’s in denial and refuses the gabapentin prescribed to him. I know he will have to succumb to it later but I admire him for his optimism and stubborn nature. I was the same way. Ha ha

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  2. Hi Mary & Mary’s Mom,
    I relate to both your situations very closely. I have a very rare autoimmune disease called dermatomyositis, where my muscles and skin attack each other. I am fortunate becasue I have responded eventually to treatment but understand too well the feelings of social isolation and the struggle trying to have proper friendships. Community is built on reciprocity in so many subtle and unspoken ways and when you can’t contribute, you do become a fringe dweller. It’s more than just a state of mind. I smiled when I read you had POTS because I’ve been following a lovely blog called Lethargic Smiles written by a girl about your age and she’s such a crusader. Really lovely girl. Perhaps you already read her blog. If you check my blog out, I recently went skiing with the disabled winter sports association. I was able to ski normally but for shorter times but they also do sit skiing.While being able to ski was a miracle for me, I am also conscious that the chemo treatment I had has left me with severe short term memory issues so before I go ringing the brass, bell, I’m still struggling with that. I don’t want to put that story out there as though I am fixed when I still have major shortcomings. I am also conscious that I could do this because I have treatment. A close friend has ALS and there is no long term really effective treatment so I am very conscious of the importance of medical research not just to find ultimate cures but also the better treatments they will hopefully find along the way. I look forward to reading more of your blog xx Rowena

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