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.

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57 thoughts on “Recent Wisdom From My Mom

  1. I am in a very similar situation and truly believe your good Dr’s theory. I am convinced that I have a virus affecting me both neurologicaly and on a celluar level. The effects are truly painful, uncomfortable and distressing. I am on protein powder and supplements-fish oil, NT factor and Ubiquinol (alongside meds) and the fog has lifted slightly. Keep in touch, Annie.

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  2. HI I just found your insightful blog. I find your writing, witty, raw, and your spirit priceless. Your mother is a wise woman. Thank you both for sharing your journey. My Best Lisa aka #HypoGal

    Liked by 1 person

  3. 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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  4. 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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  5. I just found this blog and in my complete excitement have, what probably looks like to you and your daughter, spam commented all over you. Sorry, I am so thrilled to have found a voice that so reflects my own journey and attitude towards this nasty, rotten invader in my house. We are learning to co-exist but the bastard still steals the covers when I’m not looking. So, I will never get a handle on how to completely like him but at least I don’t have the same anger that makes me rant and rave whenever he takes over my space. Thank you so very much for sharing your journey.

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  6. Guys, I really hope this doesnt sound like crank stuff, but I have recently been introduced to a system for combatting allergies (and immune system problems are like the mother of all allergies) and it is really revolutionary. It has curred my wide – lifelong suffferer from hellish hay fever – and my daughter – 1000% more allergic to egg than ordinary people, a tiny drop would kill her – allergy now gone.

    If you would like more information, please contact me. I lnow of someone in America os does this stuff. I should say I am the most skeptical, science based guy I know. But this system has blown my tiny mind.

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  7. What 2 awesome wonderful people you both are. Your strength and knowledge make me get goose bumps of pride. God has a plan for you which I hope he reveals soon. I’m sure you are tired of waiting for the answer. But I know it will be grand and all of your pain you have suffer thus far will have not been in vain. You will be rewarded for your suffering. Hang in there ladies. I love you so much and am inspired by you both DAILY. You are my heros!!!!! Amy O.

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  8. Just wanted to thank everyone for your comments, and say to everyone: Hang in there. We’ll get there.

    I hope this can be a place for us all to feel better. Or normal. Or awesome. Thanks again to everyone for your words and for sharing.

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  9. Mary is very lucky to have you, Mary’s mom! I am very fortunate also to have two parents help me out. I am sure that having their 31 year old daughter at home, supporting her for the last 3 years was something they never imaged they’d have to do, but they do it, and they don’t complain at all. I am very gratefule and don’t know what I’d do without them, and I’m sure Mary feels the same way about you.

    Interestingly, my mother also had CFS, though hers lasted for 3 years compared with my 13 (I also have fibro, which she doesn’t, but she does have arthritis). I can’t help but wonder if there is a hereditary factor.

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  10. I will reiterate again to get vit. b12 shots at Drs. for fibro, take huge amounts of good vit. d, take zinc to repel infections, eat a Gluten-free diet please, it really takes care of the IBS cuz tummys so sensitive. vit. c also as well as a multi. Take a liquid of pills are hard for you to swallow. Eat as much organic food as possible, lots of fresh fruits, veggies, protein from beans, quinoa, etc. socially its a bitch but you can manage your life by treating one symptom at a time. Also marijuana is aces to repel the fibro pain, works better than any painkiller. Try it, it works, if it didnt I wouldnt be able to manage my fibro after 14 years, gluten probs have been proven to be associated with Fibromyalgia, check into it, really works, is a pain to follow but worth it. Im 60 & know my stuff was in health care before I became Fibro woman! Sleeps elusive, try small naps if at all possible. Lots of luck, follow my tips & they will help you. will take a few weeks to notice a difference but it is surely worth it. Peace, Roz.

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  11. Hi Mary, I can’t recommend highly enough that you and your Mom check out:

    1. Dr. R. Paul St. Amand’s book, What Your Doctor May Not Tell You About Fibromyalgia. The Dr. is an 83-yo endocrinologist in Marina Del Rey, CA – he and his children have fibro, and they have successfully reversed their symptoms with his treatment protocol.

    2. http://community.lsoft.com/SCRIPTS/WA-LSOFTDONATIONS.EXE?A0=GUAIGROUP&X=34B87E368B0A540522&Y=dlovejoy%40sbcglobal.net and check out people’s stories. Search for “progress report” – you’ll see so many lives completely changed, people living fully with NO symptoms.

    My own life was getting worse and worse – cyclic, chronic fatigue since 23 (I’m 39), IBS, flu aches and fatigue, psoriasis symptoms, headaches, depression, 8 miscarriages in a row, extremely low B.P. and progesterone…then another big CRASH in January 2011. –Until I was referred to Dr. R. Paul St. Amand by a hematologist. I’m 6 months in to Dr. St. Amand’s guaifenesin protocol, and my life is turning around, for good. Sooo many improvements. The treatment can be a hard process, but the payoff is immeasurable. I find it LESS hard than suffering needlessly with this illness!

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  12. well I stumbled across this the way most of you did, the white girls thing. To Mary and your mom, I have been sick now for a little over a year now and recently diagnosed with Rheumatoid Arthritis but trust me this disease is not like the arthritis that you might think of. This is also autoimmune and when I say sick I mean can’t get out of bed and pain in almost every joint from my jaw to my feet. Treatment consists of pills(lots) and infusions of Biologic medications similar to chemotherapy. Just 2 weeks ago I got a bonus diagnosis of Sjogren’s Syndrome, another autoimmune disease. To Mary’s mom, I understand the feeling of wanting to take the pain so Mary wouldn’t have to, I have 3 sons almost all grown. I am so thankful that my boys are free from this type of disease. I am 52 years old and it breaks my heart to read about young people getting this ill, my only hope is that a cure will be found in your lifetime. I see a Rheumatologist for treatment and there will be many other Drs. in my future. I wanted to give you both my support, hang in there, there will be ups and downs I am just coming out of a down and am finally trying to learn to accept what has happened to my health, trying to be positive, as they say in my RA sites ((((gentle hugs)))).

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  13. I have a thought. Where I’m from the state has a medical marijuana law. Have you guys ever considered it for the chronic pain and migrane? I know a few people with fibro. They subsitute the m.m for the strong pharmicutical painkillers. Plus subsituting something organic for something made up of chemicals is always a nice thought :)

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  14. Your daughter is right, you are a very intelligent woman.
    She is blessed to have you, and its good to see, that both of you share this blog.

    The insight you have in this decease is amazing, you bacame you and your daughters doctor, I can only say, that I am very impressed, its completely breath taking, that you know so much.

    I am sorry for my bad choise in words, or gramma flaws, Im from Denmark, so the word barrier might be in trouble sometimes. But I do look forward to reading new post from both of you guys, and a lot of blessings, and hope here from me in Denmark, Im crossing my fingers, for a final cure for this.

    Mia

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  15. Please check into a practitioner in your area for this system. It’s a whole body system that addresses everything from the cellular level up. May be worth a look into:

    http://www.bodytalksystem.com/

    Here’s the description from their webpage:
    “BodyTalk is an astonishingly simple and effective holistic therapy that allows the body’s energy systems to be re-synchronized so they can operate as nature intended. Each system, cell, and atom is in constant communication with each other at all times. Through exposure to the stresses of day-to-day life, however, these lines of communication can become compromised or disconnected, which then leads to a decline in physical, emotional and/or mental well-being. Reconnecting these lines of communication enables the body’s internal mechanisms to function at optimal levels, thus repairing and preventing disease while rapidly accelerating the healing process. In this way, BodyTalk stimulates the body’s innate ability to balance and heal itself on all levels.”

    “BodyTalk can be used as a stand alone system to treat many chronic and acute health problems, or can be seamlessly integrated with any healthcare regimen to increase its overall effectiveness. BodyTalk’s major assets are its simplicity, safety and the speed of results.”

    Many blessings to you both!

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  16. You remind me so much of my mother and me. She is the research queen and has suffered with fibromyalgia for more than 10 years. Over my short 33 years, I’ve been dianosed with epilepsy, lyme disease, chronic fatigue syndrome and now fibromyalgia. Of all those things, the fibromyalgia has been the worse, causing ridiculous pain. I know understand the pain my mother has suffered with.
    I’ve had an extremely difficult time with work, due to concentration issues(epilepsy) and exhaustion(chronic fatigue) I look perfectly normal, so I’m billed as lazy. I could usually do one physical activity like clean the house(can’t anymore) and I’d be too exhausted to take care of anything else. Now I have two kids, 3 and 6 and I love dearly but get so worn out taking care of.
    I understand what you mean about not going out with friends. I’ve always had difficulty maintaining relationships because I get so drained. But in the past two years, I’ve had the most amazing and supportive friends who may not totally understand what I’m going through, but they love me anyway, quirkiness and all :)

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  17. Hello there. I just happened to stumble upon your daughters blog while reading some things online tonight totally unrelated to what you and your daughter are going through. I just felt the need, after reading this heartfelt but devastating entry that I think it amazing how strong you both are. I can’t believe what you have been through and what you go through on a day to day basis. And on top of everything, to share your story and help try to educate others….. It’s simply incredible. I am wishing that you both can continue to stay strong and positive. My thoughts and prayers are with you.
    Sincerest regards,
    Casey

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  18. Ladies thank you for your honesty- I send you both my love. A reminder for everyone-autoimmune diseases each have super specific symptoms, causes, and mechanisms. To suggest that it’s as simple as avoiding a certain food group or exercising to alleviate the problem is not only misguided and uneducated, it’s flat-out dangerous. It’s up to each person to figure it out with A DOCTOR. I have a severe case of anklyosing spondylitis , and am constantly told to exercise by well-meaning people who have no idea what it’s like to look fine on the outside but be crawling through life. Certain forms of exercise paralyze me, others help. But no amount will reverse what my own body is doing: attacking me.

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  19. Wow! How wonderful that you support each other so much. I have suffered with cfs and fms for 12 years. Every day is an adjustment with chronic illness. Blessings to you both. Please keep supporting each other, and sharing your knowledge and experiences with us!

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  20. Thanks for sharing. I also have auto-immune disorders and am still waiting for a diagnosis for pain issues I have. It’s always encouraging to know there are people who understand these problems.

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  21. Wow, you two have been through so much. I admire your strength, and I’m happy that Mary has been writing. She’s obviously talented! I will be hoping for a cure or at least better treatments.

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  22. This is from Mary’s mom.

    I just had to write a comment to all of you who have been responding to Mary’s blog. Your kindness and generosity and encouragement have caused nothing less than a miracle. Yesterday, for the first time since January, I saw the light come on in my daughters eyes. That light went out Jan.1, 2011. Here is the story from my perspective.

    I remember well that morning January 1, 2011. Mary called, her voice so weak I could barely understand her “mom something is really wrong, I am too weak to stand up” Just stay in bed I said we are on our way. During the 45 minute drive to get her my thoughts raced. I am a nurse and sometimes know too much for my own good. What could be going on now I thought. I have watched her struggle for the last 18 years with a devastating mysterious illness but this was different…something in her voice. When we arrived I saw the fear and suffering and anguish in her eyes. There is something about being a mother that causes a direct connection between your child’s pain and your own mind and body. I watched her suffer through the long hours in the ER. It was agony not to be able to help her. Please God I prayed, just give the pain to me. Believe me any amount of pain would be more tolerable than seeing her this way. We later found out she was most probably in an adrenal crisis and close to dying if she hadn’t gotten some steroids. The steroids kept her from dying but did not give her any improvement in all of the physical symptoms she was experiencing. We took her home and I kept a vigil hovering over her like a mother hen. She slept for 16 hours. Finally I physically sat her up and said you have to eat and drink. Pale and almost incoherent she sat there and I began to spoon feed her homemade soup, both food and drink. That’s how the day went, then the week, then the month. I watched as she lost her job that she dearly loved, her boyfriend that she dearly loved, and her apartment that she also loved. The worst though was the loss of independence. Those losses had to be grieved. It was difficult to move on because there was no perceptible plan for what the future would hold. She was understandably depressed and in incredible physical pain as well. She hated living here, not because of us but because of what it represented, the loss of her dreams. Just do today I said. Don’t think about the future. All you have to do is this present moment. She had always had a perspective on life that was part cynical, part funny and part spiritual. She always had loved writing as well and so because she was pretty much couch or bed bound writing was something she could actually do. I hoped it could help her get out some of the pain of all those losses. After finding an awesome doctor who specializes in immune disorders and beginning her 25 pills a day she slowly began to improve. Her illness is chronic but we never lose hope that a cure will be found. In the mean time she is writing. Yesterday one of her blogs went viral and the love and support for her writing began pouring in. She said she especially is so happy that something she did could help other people. After all laughter is the best medicine. Today there is joy in those eyes once again and I just wanted all of you to know how grateful I am to all of you who tell her that expressing who she is makes life better for others. That joy is in my eyes as well. I don’t know where this will lead but today something has changed for her and she is creating dreams once again.

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    1. I suffer from a lot of the same illnesses and symptoms that your daughter does, am about the same age and take exactly 25 pills per day (unless I’m on a random antibiotic, experimental drug, etc.). I’ve also had to feel the similar pains of losing friends, putting a hold on graduate school, move 1,000 miles back in with my parents, and not being able to continue my ‘normal’ romantic relationships (the other person suddenly has to turn into the chronic caretaker, and that’s not a role either person should have to fill in that scenario). But you know, the worst part for me has been this guilt that I’ve attached to being sick. I feel so responsible for all of the destruction that it’s caused in the aforementioned situations that I’m so burdened. I know your daughter has been dealing with a lot of this since she was nine if I can recall correctly, however all of my problems stem from a serious infection I acquired about three years ago, and I think that’s why I feel like it’s somehow my fault. I feel guilty for not being able to keep up with friends, or even get out of bed some days. And there are the friends that honestly don’t understand, that do think that oh, you’re just being lazy or sleeping in too much or try this or that.

      Anyway, reading your ‘wisdom’ really does make me appreciate my todays, even if sometimes they feel bloody awful, because at least I have a today. And it’s very exciting that you’re a nurse, and she’s wanting to go into nursing, because if all of us who have been in the hospital at least 20+ times could become nurses, I think we would have a lot more compassionate care. My first two week stay in the hospital three years ago was enough to make me want to become a nurse…alas, I’m in the arts. Oh well. :)

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      1. Oh, Mary I hope it wasn’t my post that upset you. Why the crying? Was it your mom’s response? She is one tough and wonderful lady! Reminds me of my mom, which means she’s amazing.

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  23. Have you heard of the moringa tree? It is helping thousands of people with all different ailments because it is so nutrient rich. I am not trying to push, just help. Please research moringa and zija. Hope this helps you. :)
    Melany

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  24. I just found this because of the facebook thing, and my son was diagnosed with rheumatoid arthritis about a month ago— he is going in to have fluid drawn off joints and joint injections next week. he is 13. I am sitting here at my desk at work trying not to cry, because it just makes me feel SO GOOD to read these notes from your mom. Makes me feel like MY mom is here giving me a hug, telling me that it is not the end of the world and we can figure this out. Thank you SO MUCH.

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    1. I was diagnosed with JRA when I was five. I’ve been in remission since I was 13, and I’m 24. It can be a tough fight. I used to take advil or tylenol once or twice a day to help with my pain before going to school. I never had to have surgery but it was discussed. I now have fibro, which is a much tougher battle but I think
      because I’m older

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  25. Hey Everyone. Thank you so much for the support. I added some links at the top for those interested in ongoing research or if they are in need of helpful resources. All I can say is, HANG IN THERE. We’ll get there…

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  26. Hi, Ive lived with Fibromyalgia & CFS for 14 yrs. now, its not pleasant. I take care of my elderly mum who lives an hour from me, run my household & manage my life as well as I can with the weather & other stress factors. I do follow a strict gluten-free diet which has stopped my IBS symptoms. Exercise is not condusive to Fibro but I walk & do ball exercises. When pain is unbearable I smoke some pot as my Dr. has suggested, sure takes the pain away for about four hours at a time.I dont complain about my health problems & take it all in my stride. What else can I do? My sleep is very compromised so I take 5 HTP to assist me as well as my nightly sleeping pill of 50 mg. ApoTrazodone, cant sleep without it. I try to maintain a very strict diet as I find that helps to keep me in optimim shape & less weight on the body helps with less pain on joints. Need to maintain a healthy attitude & be thankful, count your blessings. Also very important to avoid aloe vera, perfumes, fragrances in shampoos, body products.
    .Hang in there, once you deal with the Fibro fog there is hope! No sodas, glucose, avoid sugar, no caffeine at all, caffeine-free teas are available. This plan is what works for me after many years of hit & miss, I also see an alternative DR. for extra assistance, re vitamins & have thyroid problems which have proven extremely difficult to keep on an even keel.I deal with one problem at a time. Peace, Roz. have faith in yourself.

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  27. I too had read the ‘white girls’ post on facebook copied from someone else and found this, I too have CFS after contracting lyme disease in ’04; I was treated with IV antibiotics in the hospital for three days…I went from being nearly bedridden to finally where I am at today in 2011. But I still struggle if I do too much too many days in a row. Today I’m on the couch ill and in pain. I have to recover today because I have classes tomorrow. But am still grateful I can do so much more and even drive again! :) It’s doing a dance with a chronic illness trying to manage living life vs. symptoms. I go see a holistic doctor soon to see if anything can be done outside of the crappy western medicine methods I’ve experienced thus far.

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  28. I stumbled upon this hillarious site on facebook and first read the white girls post…then started to read other posts. When I began to read this article and you started to describe your own symptoms and then your daughters…Before you even mentioned Lyme Disease, I had the chills thinking this girl has lyme and can be treated and has no idea and then you mentioned lyme. There is overwhelming evidence that Lyme Disease persists long after 2 weeks of antibiotics. Most doctors will tell you that you have been cured. I went through that. After 2 weeks of antibiotics I could not have a full conversation or focus or multitask along with a number of other problems. Since then I found myself a Lyme Literate doctor (LLMD) who treated me for 7+ months. I got better, it was hard but I did. Before I was diagnosed with Lyme Disease, I was diagnosed with Fibromyalgia and CFS. The tests that are currently available are not accurate and doctors are not supposed to use them for diagnostic purposes. There are bills being signed for states to better educate, prevent and treat lyme disease. The bacteria of Lyme Disease is a spirochete, after 10 days it can cross the blood brain barrier. Im sure you have heard of syphilis, well also a spirochete and can get into your brain as well. I can assure you that if you look to google, you will find thousands of people just like yourself.

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  29. I stumbled upon this hillarious site on facebook and first read the white girls post…then started to read other posts. When I began to read this article and you started to describe your own symptoms and then your daughters…Before you even mentioned Lyme Disease, I had the chills thinking this girl has lyme and can be treated and has no idea and then you mentioned lyme. There is overwhelming evidence that Lyme Disease persists long after 2 weeks of antibiotics. Most doctors will tell you that you have been cured. I went through that. After 2 weeks of antibiotics I could not have a full conversation or focus or multitask along with a number of other problems. Since then I found myself a Lyme Literate doctor (LLMD) who treated me for 7+ months. I got better, it was hard but I did. Before I was diagnosed with Lyme Disease, I was diagnosed with Fibromyalgia and CFS. The tests that are currently available are not accurate and doctors are not supposed to use them for diagnostic purposes. There are bills being signed for states to better educate, prevent and treat lyme disease. The bacteria of Lyme Disease is a spirochete, after 10 days it can cross the blood brain barrier. Im sure you have heard of syphilis, well also a spirochete and can get into your brain as well. I can assure you that if you look to google, you will find thousands of people just like yourself. after my two weeks of antibiotics followed by menigitis type symptoms and a spinal tap, i googled “treated for lyme disease but still sick”. The contraversy about this disease is due to the lack of accurate blood tests and doctors who are following guideline by the IDSA(Who have major conflicts of interest when it comes to this disease). Please google that or google the truth about lyme disease. There is no cure but with long term treatment by an LLMD progress is possible. I have improved alot, but since my diagnosis have been diagnosed with scleroderma, rheumatoid arthritis and MS. Lyme disease is no joke. Please do your own research. When some contract Lyme Disease they most often get other parasites and co-infections. Your doctor most likely did not test you for these things. This happened to me and an LLMD found that I had the malaria of ticks(babesia) and 5 doctors missed that and did not test me for it. Please just read into it….Im a member on facebook(please look me up with any questions, as there is WAY more to this disease then you even know) and have many advocacy groups I could refer you to. Autonomic Nervous System Dysregulation is a huge problem amongst people who have had Lyme and still do, I take florinef for it. I cannot stress enough, that you need to do your own research, if I did not do my own, Id still be sick with a stiff neck and fever along with multiple other problems.

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  30. After working in a neurology department as an aide when I was in my 20s, I realize there are so many strange illnesses out there that people do not commonly hear about. I’m sorry you both have to suffer so much. I pray that there will be a cure and more ways to help you than there are now. It’s not fair that this happened to you but I’m glad you are trying to live your lives with as much joy and good experiences as possible. Facebook is a Godsend for people with illnesses, older people and actually anyone really who can’t be with all the people they care about. It’s a great way to have friends even though you cannot see them in person. I’m glad to meet you both.

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  31. I love your blog; just found it by way of my son’s friend’s Facebook post of 15 things white girls do. I’m 58 and have fibromyalgia, CFS and IBS, the Triple Crown, as it were. I left my job in 2004 and eventually qualified for Social Security Disability but not before being initially rejected because I could dress myself and walk without assistance. And really, who wouldn’t mind having the intricacies of their costly insurance policy explained by someone deep in a pea soup fibro fog? I am sorry that you are experiencing this when you are so young. I was in good health until I was into my forties.

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  32. Has your doc recommended you follow a gluten-free and/or organic diet? If not, you might want to look into it. There is a lot of evidence mounting to support elimination of gluten (a protein found in wheat, barley & rye) can decrease, and in some cases alleviate the symptoms of the 200+ auto-immune disorders, including fibromyalgia, CFS. It won’t cure your disease, but it could improve your quality of life.

    I hope this information is helpful, and please keep blogging. You are both awesome!

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  33. What?! This is the first time I’ve heard someone else say that exercise makes them tired! I’ve been diagnosed with FMS and CFS since I was 19. Basically been ‘pushing through’ school and work. Lately, however, things have been getting MUCH worse. How did you figure that out? I have always denied having FMS because NOTHING that has worked for other people has worked for me. I have paradoxical reactions to anti-depressants (lets say ‘going crazy’ is putting it mild), worsen with exercise, have had no effect from diet changes AT ALL, hot temperatures make me have tantrums befitting a three year old, and now the ‘fibro-fog’ is so bad I am getting irritated. I am a Psychologist, and pretty much know I’m not depressed at all, just frustrated. Can you please please please go into this a little more??? Or where information can be found?!

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    1. Ali, hon you could try vit. D a multi, vit. c, avoid antidepressants, bad for your system Ali, makes it out of control. try goat cheese products, are easier to absorb, a good source of protein. Please try a gluten-free diet Ali, its a pain in butt but very worth it in the long run. try 5 HTP for sleeping assistance hon, my heart goes out to you. You seem to have a very strong will, keep pushing thru every day, its what gets you thru it all & makes you continue the fight. Never give up Ali, progress is slow as you well know. .Very simple stretching tubes, pilates style & leg stretches are beneficial.I tried yoga which set me back about six months, gentle stretching at home or gym is helpful, walk a mile a day if possible or every other day when weather permits. Good luck Ali, Peace, Roz.

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    2. Hi Ali, there is current research demonstrating that exercise makes people with this crash for days and sometimes weeks. It is the hallmark symptom of CFS now renamed “myalgic encephalomyelitis,or “ME”
      http://healthmattershow.com/myalgic-encephalomyelitis-or-me-whats-in-a-name/ There is stricter criteria to receive this diagnosis which is helpful because too often lots of different illnesses got dumped in to the diagnosis of CFS which made it impossible to research. If you meet the criteria of ME you need to find a doctor who specializes in that disorder and there are only 6 or 7 in the country. These MD’s understand the complexity of the illness and all of it’s nuances. Beyond that we have posted some very informative web sites above that will give you solid information of what you are dealing with. My best, Candi (Mom)

      http://www.research1st.com/2011/06/02/exercise-challenge-reveals-potential-cfs-biomarkers/

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  34. I found this because I saw the post about being a white girl on facebook, I’m going to frame it. I do all of those things.

    Random timing, though. I’m currently in a 2-day session on curing/managing chronic pain. Dr. Howard Shubiner is the speaker, he specializes in working with people who have IBS, migraines, fibromyalgia, pain from lyme disease, pain from past accidents, etc. He’s director of the Mind Body Medicine Center at Providence Hospital in Southfield, MI. His book is Unlearn Your Pain. His work may be something to look into if past and current treatments haven’t been that successful.

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  35. It’s random timing that I came across this blog today; I saw it because I am a white girl on facebook and am guilty of most of the things posted in the recent blog post. I think I may frame that list.

    But, I am also at a conference this week and in a two-day session on chronic pain caused by migraines, fibromyalgia, lyme disease, accidents, etc. The speaker is Dr. Howard Shubiner, he specializes in working with people who have chronic pain and ways to manage/cure it. His book is Unlearn Your Pain, It may be worth looking into if previous treatments haven’t been that succesful.

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  36. Hey guys! Reading about your health problems has made me be thankful for my health, and I just want to say you guys are total troopers!

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  37. What an amazing blog. Someone “shared” your 15 things on facebook post and I ended up clicking through and reading a lot more. Keep writing — you have talent and a story that needs to be heard — and the wit to deliver it to the masses.

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  38. Yes she is! Your awesome sister introduced me to your site and I have been enjoying it. I met you at her 30th birthday. Good to read your latest blogs with more hope about trying to put your illness in the background. So many things in life are about perspective, right?

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    1. Totally awesome! Reminds me of my mother :) She never complains about her health, just deals with it slow and steady and usually hides it when not feeling well. When I’m not feeling well I alert the whole apartment building and send out text messages! But not mom, she just stays positive, and remains the most supportive mother and friend! Nobody understands us like mom, and I love her default solution to every problem I have…to tell me that my problems are a result of me being a genius and others just not getting me! Whether I am or not, I feel like one when I talk to her. How can someone who feels so crappy all the time, make veryone else feel o good? :)

      Like

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