Pain in fibromyalgia

Grouse Feathers bring good medicine

A personal experience of living with persistent long-term pain

I’m aware of pain every moment.  A kind of pain that without medication is absolutely unbearable.  A kind of pain that is hard to describe.  It’s persistent, invasive and all-encompassing.  It isn’t only muscle or joint pain, but feels like every cell in my body hurts and is crying out pain.  Sometimes I feel like I’m on fire from the inside out.

Sometimes breathing feels like I have broken ribs and knives are sticking in my heart and lungs.   This kind of pain scares me.  Doctors believe it’s the tissue around my chest cavity that causes this particular pain, which they say is due to fibromyalgia.

I live with pain that the doctors say may very well continue the rest of my life.  I’m only forty-six.  I have severe fibromyalgia and Chronic Fatigue Syndrome.  I also have other conditions that cause pain, but in comparison are easily managed.

I’ve lived with severe pain every day for about seven years.  I’ve lived with intermittent pain from various conditions throughout my life, but fibromyalgia pain is the worst, both because of the intensity and chronicity.

I wake up every morning to pain, usually a moderate level, other times severe.  I always have some level of pain.  Sometimes the pain has been so severe that after taking enough pain medication to manage it, I’ve been left in a state of mental shock from the experience of intense widespread pain.

Sometimes I wake up crying.  Other times it’s the first thing I do.  I’ve cried myself to sleep plenty of nights.  It’s not only the pain that I cry over, but also the ongoing battle to manage and accept it.  I cry because pain intrudes upon every area of who I am and how I live my life.  Most of the time crying helps.  A good cry can be a positive experience.

Sometimes I have severe muscle spasms that take over my days, my nights and my life until they go away.  Hurting that bad wears me out physically, mentally and emotionally.  I can’t take muscle relaxers and narcotics don’t help spasms.  Spasms are completely debilitating.  They started a couple of years ago and each time they’ve been worse.  With a neck spasm I can’t move my head and the pain is off the scales – emergency room pain.

Sometimes I think about what doesn’t hurt.  My nose doesn’t usually hurt.

I don’t think I could live with the kind of pain I’ve experienced without medication.   I once seriously thought that I would have to tell my family it was not humane to expect me to live anymore.  I had decided during an excruciatingly painful camping trip that I could not take the kind of pain I was in and had been living with.  I had sat up all night in my tent thinking about it.

I was with my two dogs on top of a beautiful mountain.  I thought of my son and my mother.  My family.  I cried and sat there until sunrise, experiencing and feeling the enormous pain.

Fortunately, when I returned home I went to a doctor who began treating my pain.  That was five years ago.

It may be that pain will drive you crazy after a while if you don’t have a way to treat it.

Pain and managing it is as much a part of me and my life as is anything and feels like it may be the most important part.   I feel sure I’d go into shock and possibly have a heart-attack without pain medication.  That scares me.

For the most part I’m able to manage pain with medication.  I’m deeply grateful to have medication.  I’m normally able to keep the level of pain around a three on a scale of one to ten when my medication is working well, which includes not being groggy.  A level three or four is well-managed pain.

As a result of pain medication, I don’t have as many episodes as I used to of the kind of pain that feels like I can’t breathe or that I’ll have to go to the ER.  Sometimes I miss a dose and fall asleep.  That’s usually when I wake up with my entire body on fire and my chest cavity feeling like a mule kicked it.

I get scared of losing my doctor.  I’m afraid I would get a new doctor who wouldn’t understand how severe my pain is, like five years ago when many doctors didn’t believe in fibromyalgia.  They didn’t know what fibromyalgia was and would often blame it on psychological factors, such as stress or depression or they called it a, “trash-can diagnosis.”

I’ve tried nearly every non-narcotic pain reliever; including most of the antidepressants used to treat pain, along with the anti-seizure drugs Neurontin and Lyrica, but absolutely could not tolerate the side-effects.  I eventually began treatment with a tried and true pain reliever, which treats the pain with relatively few side-effects.

Several months ago stress increased in my life and so did the pain.  Any type of stress directly, and these days immediately, causes fibromyalgia pain to get worse.

I also went on another camping trip that physically set me back.  I lifted logs to have a fire.  Big heavy wonderful logs of Locust wood that I kept burning for four nights and five days right up ‘til the last few hours of packing to leave.  I did plenty I shouldn’t have done.  I hadn’t been camping since that one trip almost five years ago.

Being able to camp is something fibromyalgia has taken from me but evidently, I rebelled.   It didn’t work out too well.

As a result of high levels of stress and the killer camping trip, I recently had to increase my dosage of pain medication.  I thought the aftermath of pain from camping, which was almost four months ago would go away, but it never did.

Pain is depressing.  Knowing that I might have to take pain medication for the rest of my life is scary.  I get scared of getting old because I wonder how an older body will tolerate this pain or the side-effects of medications.   I wonder how many times in my life I will have to increase the dose of pain medication.  There are only so many times a person can do this in one lifetime.  It’s all scary.

Personally one of the most difficult aspects of living with fibromyalgia pain is that it’s invisible.  The same is true with medical fatigue.   People will question and some will outright attack your character.  Some people question your intelligence and your honesty, along with your motivation to seek out disability benefits when the pain and fatigue is severe.

Personally, it has been my blood relatives who have hurt me the most.  I’m not sure what their intentions have been or what they gain from not believing that I have pain that requires treatment.  They certainly don’t understand what Chronic Fatigue Syndrome entails.

I don’t know where the silver lining in the cloud is.  I’d rather not have pain than to learn the lessons pain teaches, if that’s where the silver lining is.

Pain is humbling.  It teaches that the human body is what it is –human.

Pain begs me to take better care of myself and to care more about myself.

I grew up hearing the saying, “What doesn’t kill you makes you stronger.”  I wonder.  I’m darn tired and worn out.  I think I would be stronger if I hadn’t had ongoing experiences that felt like they might kill me.

I’m not too good at finding the silver lining in a cloud of pain.

I’m better at finding ways to cope.  Little things that make me feel better like hanging out with my dogs.  I love to rub the silky coat my young dog has.  She’s the softest animal I’ve ever touched.  She’s my tender heart.

My other dog is really my son’s dog but lives with me.  He and I have always had a strong connection so we’re pretty close pals nowadays.  I feel like his grandma.  He’s a stoic fellow, but once in a while he’ll decide to give me one little kiss, just one and it’s always a surprise, like when I come home after having been out for a while.

My dogs give me joy and really do comfort my heart when all else seems lost or out of control.  Dogs rule.  They never argue and certainly never are they mean, at least mine aren’t.  Dogs love you unconditionally, as long as you feed them, so that’s pretty cool with me.

Intentionally experiencing gratitude helps me ease anxiety or depression.

I think about the basic necessities in life –shelter, clothing, food, and sometimes little luxuries too.  I think about things I’m grateful for because it actually does make a little difference in the way I feel.  Some days it makes a huge difference.

As I write, the worst part of chronic pain is that it hurts today and I know it will tomorrow.  The best part of having to live with chronic pain is that I have access to good medical care and medication to treat it.

Maybe one day I won’t have such severe pain.  Maybe one day I won’t have fibromyalgia.  Maybe I’ll discover new or different ways of treatment that works.  One can hope because anything is possible.  Well, most anything.

Image via “The Graphics Fairy” — “Feathers -Autumn Display”

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20 responses to this post.

  1. Posted by Michelle on June 5, 2011 at 4:39 PM

    Dogkisses,

    I read your entry and this sounds exactly like me. I am so sorry that you deal with so much pain, but I understand in ways what you are going through. I was diagnosed with fibromyalgia following 2 surgeries from ovarian cysts in March of 2010. I immediatly woke up from surgery with intense pain that could not be controled with any narcotic. I could no longer sleep on my own, and have been on pain and sleep aides since. It took about 3 months to get the diagnosis, and life has been hell for a year. I cry and cry due to the pain that never stops. I have had to quit my job ( I just graduated from a Master’s degree program but am unable to work due to the pain and extreme exhaustion). My parents try so hard to help me get better. We have been to so many doctors- in and out of network, all with their own opinions as to what caused this to happen and how they will get me better- some have recommended detox, some say this is my life, but I don’t want to live this way. I want children, I want a life without constant pain. I am currently doing Nutrition Response Testing with my chiropractor. She really feels that we will be able to get the pain under control by healing my organs through nutrition response whole food supplements. She understands fibromyalgia, and she understands that it is a central nervous system disorder- we have been working together for a while now, but I have yet to have any relief. I just pray to God that he will heal me or direct me to someone who can. I am currently on tramadol 50 mg 3 times a day and lunesta to sleep. I have been prescribed neurontin which also helps with pain but causes me to be depressed. I too wake up in severe pain every day. I am unable to move from my bed without the medication. It takes about 45 minutes to kick in, and even then, the pain is still there. I used to run 5 miles, I can barely walk for 15 minutes without pain for days after. My boyfriend is a massage therapist- he massages me for 10 minutes and my skin burns so bad the next day. Is there any hope that this can get better?

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    • Posted by Michelle on June 5, 2011 at 4:41 PM

      When I read your entry, I cried. I understand what you are going through. I am so sorry that we have to live this way.

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      • Hi Michelle,

        Crying is a good release. It helps the body get rid of toxins. I’m sorry we have to live this way too. I really hope things improve for you. Let me know if you find anything that helps you in your journey of healing.

        PS I wanted to say congrats on getting your degree. Sometimes, illness gives us insight into parts of ourselves that we would have otherwise, never known. Maybe you will take a different career path as a result of what you are living through. God works in mysterious ways. Still, pain is a very unfair part of being human, so again, I wish you all the best!

        Gentle hugs and healing wishes,
        Michelle (also known as dogkisses).

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    • Hi Michelle, –nice name ;),

      Thank you for writing. I’ve had a particularly bad time lately. Fatigue is the beast of my days. I am losing much sleep due to night sweats and that’s making fatigue worse.

      I’m sorry for what happened to you. I have another friend who has fibro from an accident, which reminds me a little of your story. She has a nice health blog btw, “Seeking Equilibrium”.

      It is always good to hear when people have support from their families. I think my mother finally understands better, but sometimes, I’m not so sure. I know she feels sad for me, but I would rather she read about fibro/CFS or chronic illness in general, instead of being sad b/c I feel guilty for her sadness. Knowledge really is power.

      I pray too. I keep asking God to help me accept my life and guide me in the right direction.

      I took Tramadol too. I can’t recall if I mentioned that in this post. It helped me for two years. It dried my mouth so bad that I began to get cavities and was waking up with my tongue stuck to the roof of my mouth. It was constant. It stopped working for the pain and I had to go on an analgesic pain reliever. It is much better, with less side-effects, but not without some and I would surely love to be able to stop taking it.

      If you can, I would highly recommend acupuncture. I don’t have one right now, but it helps so many health problems.

      I’m starting physical therapy again soon. Doing the exercises they teach help. My doc told me the other day that PT is like the golden gate for fibromyalgia. He said it is the most important thing a patient can do. I must say that it is the only thing that has really helped me to see a difference in the levels of pain and fatigue.

      Have you tried aqua-therapy? That helps too. If nothing else, you can walk back and forth from one side of a pool to the other. Start out doing it just a few minutes, five or ten, stick with that for about two weeks and keep increasing the time in two week intervals.

      Perhaps your youth, your history of good health and your family support will make a huge difference in your prognosis. I believe with the right support and love, we can move mountains. I hope that you don’t give up looking for new answers.

      Relaxing is something I’m still learning how to do. I never was too good at it, but it is important that you find a way to relax your mind and body, esp., if you are losing sleep.

      Do I think it can get better? I do. My doctor said that people who have nothing but time to dedicate to healing are the ones who get well. He said there are only a few people he knows who have the time, but that those are the only people he has known who actually got (completely) better. If I could, I would all my time to healing. Put everything else on hold and view healing as a full-time job.

      Thank you again for visiting and especially for sharing your story with me. I wish you much luck, healing and blessings. I would love to hear from you anytime. Write if you need to let out your frustrations or whatever. Sharing with others who are going through similar circumstances helps.

      Perhaps you could start a blog. Everyone I know who has done this says it has helped them tremendously.

      Peace, Love and Light,
      Michelle.

      note: comment was updated

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  2. Such powerful writing and images Michelle….and you know I can identify with them. I’m lying down now and don’t even want to get up even though I have to because I know the pain and the impact of simply moving. Even though today is an Awareness day, the more posts I read (and I reposted a couple of my Fibro blogs too) I feel depressed and sad for all of us who suffer with this invisible but debiitating disease.I hope you have strong and better days, please keep in touch. your friend, Laurie http:/hibernationnow.wordpress.com

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    • Hi Laurie,

      Thanks for reading my post and I am glad you could identify with what I wrote. Of course, I wish none of us had to understand. I am still tired. I get tired of saying I’m tired and lately I really don’t understand. I used to get breaks! What is up with no breaks in the fatigue? OMG. It is really getting me depressed. I beg God to help me in any way possible. I can’t be any good to the world in this condition, or at least that is how it feels you know.

      I hope you get my reply. I usually reply sooner and for all I know I did and don’t even see it.

      Take good care,
      Michelle.

      PS Is Easter the only time you can get Peeps?

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  3. You know, Michelle, with the exception of one or two things I could have written this myself!
    Even the part about camping & lifting too much!

    Very well said, dearheart…
    Hugs & blessings!

    Ash

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    • Hey Ash, Sorry I never saw this comment ’til now. Thanks. I always love your comments! I want to camp again this year, but this time, surely I’ll bring along more physical help ;).

      Hugs & blessings to you also,
      doggy kisses.

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  4. Hi My new friend dogkisses… I have now read and understand now why you and I have connected.. I was diagnosed in 2002 with Fibromyalgia and Chronic fatigue, and it took 4 yrs to get that diagnoses.. My breakthrough came when my Dr had another Tutor Doctor overseeing his work in his office.. I went at the end of my tether and cried my heart out. It was only then when she mentioned the word Fibromyalgia the first time I had heard the word, that a light at the end of my tunnel came into view.. I was sent to hospital for tests and proved positive in all the trigger points. I was enrolled upon a Chronic Pain self help scheme where we learnt how to cope and self manage our individual problems of not stressing, setting ourselves small goals of achievements like not doing All the ironing at once.. and pacing ourselves…. A truly wonderful programme…
    I Saw that I needed to change what I did for a job and so I changed career paths, I went to look after and support Adults with learning difficulties.. part time, pacing myself.. I took up Qui Gong, Breathing exercises, I cut out dairy as much as I could, and Nuts, I also cut out bananas too, .. My pain medication gave me an ulcer.. so I eventually I have cut out that, and in its place for the last two years I have had regular acupuncture at first I went weekly, then every two weeks, now I go every three or four weeks, which has helped enormously. I can’t begin to tell you the difference it’s made. I tell myself each morning I wake “ I AM WELL”.. and I nurture my muscles into action after a long hot shower I massage them and slap them into action…
    I can still over do it, and pay the price dogkisses, and even typing too much some days can leave my fingers and lower arms in pain.. But I chose to be well… and try to avoid stress, not always easy in this stressful world.. I know the cramps you speak of which I get in bed some nights in both legs at the same time if I have over done things.. But I have learnt to pull in energy, fill my aura with light, and clear the blockages in my auric space that I know have allowed me to be ill in the first instance.. I Choose to be Well… I am well…. .. 100% better… and I will not let it beat me…
    So keep going out in nature, pull in her energy, pace yourself and look towards some alternative therapies .. such as Reiki too… that too has helped me greatly….. I know what you are going through.. believe me I do… and there is light at the end of the road, we need but believe in it and ourselves to be whole again and well..
    Love and Blessings Dreamwalker

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    • Hi to My new friend, Dreamwalker,

      What a delight to have you visit and write to me.

      I think I really ought to try and bring back into my life the healing benefits of acupuncture. My son and I both used to get treatments nearby from an older gentleman. I think he’s still practicing, but I haven’t contacted him because he has given me who knows how many free treatments, along with my son. Other times we paid very little of his cost. I’ve not been able, in a couple of years, to call him and tell him I’m still suffering, need help again and still don’t have enough money. He always said it was okay. He was a minister in the ’60’s in Berkley and is now a farmer/acupuncturist. A true healer.

      Most practitioners charge way more than I can afford, but I know from experience, that it is possible to bring healers into my life. I had an acupuncturist in the mountains who could take any of my ailments away. I got severe fibro pain after I moved from there, but it was the same year I had Lyme’s disease and the same summer that my son became unwell. Then the many moves I had to make in order to find him decent medical care got the better of me causing severe fatigue.

      It’s been a long decade. I believe ongoing high levels of stress is causing my pain to continue and get worse. Chronic Fatigue Syndrome is a real beast, but again, I believe it is worsened and/or triggered by ongoing stress.

      A few months ago I began having cognitive changes; memory problems, poor concentration, and confusion. Actually my body gave out on me in April, last year sending me to the hospital. My heart didn’t rise above 39 beats per minute until the doc came in the next day asking me if I was depressed. Quickly it rose.

      I’m speaking only about myself, and not the experience of others, who may be doing every thing they can think of to get well and are not.

      Since that hospitalization, when the doc said my brain wasn’t getting enough protein, based on his conclusion that I was quite depressed and not eating, which was true, I’ve been realizing that I have to change the way I’m living if I’m planning on living long. Still, I didn’t do anything to change. I stayed weak, had more stressful events and then the confusion returned about two months ago.

      Several weeks ago, it hit me that it is time. Getting confused is scary, but I really believe it is stress and poor nutrition. It is time for me to have a real break. It is time for me to say enough is enough. My job has been taking care of others and it has really worn me out. I still want to help my son, but the way I help must change. I feel like I’m making a career change, since being a caretaker, an advocate and a mother, along with managing my health issues has been a full-time career.

      I don’t regret helping my son, not at all, because I love him with all my heart. Still, the many times I pushed myself too far, way over doing it, didn’t help either of us.

      I have had several glimpses of happiness and peace lately, and sometimes surprise myself with hopeful thoughts, even if I still find myself walking in the deep dark dungeon at times.

      Thank you for sharing your story with me. I am honored. I do love nature, which may be my saving grace. I may even move into a lovely neighborhood this summer, which would put me literally in the heart of a healing environment. I only found out yesterday that this might be a possibility for me. I will keep hoping, with as much faith as I can find, that my life can be better and that I will feel well and happy again.

      Peace and love,
      dogkisses.

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  5. Posted by Pamela Spiro Wagner on December 9, 2010 at 9:55 AM

    Dear Michelle,

    I was going to speak to other things in your post than CFS and FM — I had a thought about it, but did not want to intrude where you clearly have had enough “interventionists” telling you what to do — when I came across this quote:

    “I got a tick disease in 2003 and that’s when my joints began to ache and didn’t stop. My son was struck with a serious illness that same year. It was a very bad year. In 2005 I got another tick borne illness — this time RMSF and was much worse. I’ve never returned to the health I had before ’05. My life has been pretty difficult and extremely stressful for a long time.”

    Oh lordie, Michelle, I do not know where you are living, and if it is in New England (or pretty much anywhere) then you are likely out of luck..But I am getting ahead of myself so let me explain: but my very first instinct, when I started reading your blog was to think — out of my own experience — “Has she been tested for Lyme Disease?” I say this because my doctor and I are very firmly convinced that CFS and probably FM are in fact manifestations of chronic Lyme Disease, Lyme, which has been dubbed, THe Great Imitator. FM and CFS are still wastebasket diagnoses, not in the sense that YOU should be thrown away, but that too much and too many symptoms and such have been thrown into that one great wastebasket. My biggest complaint about those Dxs is that they describe sympotoms rather than defining any disease.

    Then you wrote about having had not one but two confirmed tick-borne illnesses and I just about jumped out of my seat. Listen, Michelle, I do not have the energy to write as much as I would like to, but I will tell you that I had EVERYTHING wrogn with me, from demyelination of my leg nerves and such fatigue that I could not even brush my cat without my hand collapsing, and pain in my hip in particular that was finaly dxd as avascular necrosis and Oh, so much sounds so familiar…BUT the point is, EVERYTHING got better after I was on antibiotics for almost 8 years. I know htat many mamny people cannot tolerate ABs and esp not longterm, but I am POSITIVE at this point that without them I would still be a “basketcase” — I do believe that my schizophrenic illness was “sparked” by an initial tick-borne illness when I was a child, though I have no proof and little psychiatric support in this thinking. But as for CFS and the kind of pain you describe experiencing — my heart goes out to you while I remain disgusted and furious with that person who accused you of “singing the FM blues…”

    I realize I am going on “all over the map” here, and have probably not completed a single thought, but my main point is that of long-term antibiotics, IF you can possibly get them and take them. I was lucky enough to have a twin sister who found me a treater, a famous doc in Lyme disease and tick-borne illness circles, and I was given ABs for most of 8 years, though not always the same ones, as there would be side effects and such on some that would necessitate my switiching. However, it was AFTER treatment started that I cam back with positives not only for Lyme Disease but for babesiosis and other related illnesses.

    Here, in CT it is just about impossible to get longterm ABs but in NY where I went for treatment, they persecuted treating doctors, yes, but they nevertheless manage to hold onto their licenses and continue to help people.

    If you feel like it, Michelle, contact me through my blog and we can communicate more about htis. If it doesn’t seem helpful, then ignore all of what I have said (though I feel certain that I am not wrong at all). In any event, I can only praise your ability to think as clearly as you do when writing, and for your true fortitude and courage in facing a demon as horrendous as yours is.

    My best,

    Pam W

    PS my apologies for all the typos and infelicities of expression: I am in a great hurry, but did not want this to wait until I had more time later, lest I forget about it altogether.

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    • Dear Pam,

      Hi! Thank you for taking the time to read and comment.

      I’m tired at the moment as I just now finished reading a rather intense article about fibromyalgia. I think I was reading while you were writing and in a way, we were thinking of the same thing. Very odd. I want to respond more to what you wrote and I will, but I must take a little break from sitting. The morning sun is making me very sleepy.

      I was tested for Lyme’s in ’06 and it came back negative. That was the summer of trying to figure out why I had become so ill.

      Also, when I was treated for Lyme disease in ’03, and then for Rocky Mountain Spotted Fever in ’05, the doxyclycline nearly did me in. I would have had to go into a hospital had I “needed” them for more than two weeks, which I now believe I did need them longer. They made me very sick but was saving my life so I tolerated them. Most antibiotics put me down. I have to take strong anti-nausea meds, I lose my appetite, get all sorts of other problems like yeast and feel weak. So, in short, I guess that’s why I haven’t tried the route of antibiotics.

      I’m really glad you shared your thoughts and experiences about this with me. I look forward to being able to ‘talk’ with you more.

      Thank you too for your empathy and kind words.

      Til soon,

      Michelle a.k.a. dogkisses

      PS I absolutely love your art!

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  6. I read every word and have tons of empathy for you….my pain is so minor compared to yours. I do hope that someday there is a real cure. And yep, I get the part about the families being the least supportive and not getting it. Its the hardest part of dealing with this. If your arm was cut off you’d get tons of support and sympathy AND the pain would subside and you could have a much more active life than one with Fibro. Sending you a gentle hug and a kiss from my dog 🙂

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    • Hi Barbara,

      I don’t know about you but I sure am glad the holiday is officially over.

      Thank you so much for reading my essay. This one was important to me. I needed to write my experience. Mostly, I’m able to control the pain. Sometimes I fall asleep and miss my meds and that’s when I wake up unable to move or breathe. I’ve been trying to change my dose after three years, and so far haven’t figured out the right dose. The company that makes the med I take says it last 12 hours. I don’t know why ’cause the doctors know it doesn’t. Still, they will tell you to take it every 12 hours until you say uhh, it only works for eight. Sigh…

      You are so kind to visit me, read and comment.

      I hope your holiday went well. I hope too your son is doing well. Thanks for the gentle hug and kiss from your sweet doggie.

      Affectionately,
      Michelle

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  7. I also suffer from pain and fatigue. I am not as severe as you are. I have seen many people worse off than me and I thank God I am not worse. None the less, the pain is real. I understand your comment…

    “Personally one of the most difficult aspects of living with fibromyalgia pain is that it’s invisible. The same is true with medical fatigue. People will question and some will outright attack your character. Some people question your intelligence and your honesty, along with your motivation to seek out disability benefits when the pain and fatigue is severe.”

    I was attacked so many times that I have said many times “well I’m just lazy”. I know I am not, in fact I work hard and go to school full time. However, that was what it took for people to finally leave me alone. There is also a humiliation factor that goes along with the pain and fatigue. I have to sit through absolutely everyone telling me what my problem is and how to treat it. I was even told “you need to go for a walk” one day when I was in the middle of cooking and nodding off in the kitchen.

    I was a cheerleader, a runner and I was very physically active until after the birth of my first son. I tried to continue to do the same things I have always done, but it has become impossible. I remember the day when I would have agreed with their “diagnosis”. Yes, exercise is important! Yes, it does release chemicals and make people feel better. However, my body just isn’t working like that anymore. I am lucky to be able to go for walks some days and I refuse to lighten my lifting loads. I figure I am going to hurt, I might as well do what I can while I can!

    No one, even my doctor at this point, is listening to me. I started tracking my symptoms on a symptoms chart. I have been working on it for three weeks and hopefully by the time I get back to the doctor I will have a little proof of the roller coaster I am on.

    Stay strong!

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    • Hi ciarawyn!

      I love what you say — “well I’m just lazy” –can’t believe I haven’t thought of that.

      People giving advice on something they don’t know about is hard to deal with. It’s also like they are stuck in the ’80’s, when we thought ‘no pain no gain’ –thank goodness we learned better, or I did.

      I’ve learned that physical therapy exercise is different than regular exercising. I went to a PT who genuinely impressed me with his vast knowledge of fibromyalgia. He taught me a lot about what to do and what not to do. Easy stretching –without pain is good. He said if it hurts then don’t do it.

      I was amazed when he would stretch one of my larger muscles for me. I thought hey that felt great, but then I was left in bed for days afterward. He wanted to see where my baseline was. No more of that he said. He was so cool! My routine was fairly easy and after doing it daily for a couple of months I did improve. That was almost two years ago. I had some hard emotional blows, basically got depressed and stopped my PT. I sure hope I can make myself start again.

      Before I met the PT I had tried water aerobics. Doctor’s thought that would help. I got very sick. It was 45 minutes long. Every time I went I was in bed four to five days afterward. It felt like CFS. It was awful. The PT later told me it was absurd that the doctors had suggested that much exercise, even in water. He said I might have benefited if I had gone for the first few minutes of warm up exercises.

      I sure hope you meet a medical professional who understands fibromyalgia. The journal is a good idea and I hope it helps your doctor. I had to go through a couple of doctors before I found one who understands and stays updated on fibromyalgia research.

      Thanks for visiting my blog and sharing this part of your journey with me.

      With many well wishes,
      dogkisses

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  8. My holistic experience prompts me to ask “when did the pain start?” Is it possible that at least part of that pain began with something happened in your life that caused you sorrow? My sound therapist says that pain is “remembered.”

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    • Hello Rossa,

      Well, you’ve asked a loaded question. I got a tick disease in 2003 and that’s when my joints began to ache and didn’t stop. My son was struck with a serious illness that same year. It was a very bad year. In 2005 I got another tick borne illness — this time RMSF and was much worse. I’ve never returned to the health I had before ’05. My life has been pretty difficult and extremely stressful for a long time.

      I do not doubt one bit that stress and very upsetting personal events have added to me getting fibro and CFS, and I know for sure stress and grief make it all worse.

      I guess if stress can cause it then there is hope that trying to live more peacefully and attempting to decrease stress can help it.

      Thanks for the comment!

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      • I am reading and rereading a fabulous book called “Holy Spirit For Healing: Merging Ancient Wisdom with Modern Medicine,” by Ron Roth. It’s available used on Amazon. Why do I think it’s so fabulous? The author is a former Catholic priest and healer who says that we all have our own ability to heal if we can tap into universal power. He gives some practical ways of doing this. I’m feeling especially good because today I got my blood results back. I had a condition that I just ignored for a couple of years and it came to a head two weeks ago. One of my blood readings made me wonder how I was walking around. To make a long story short, I found the book, practiced everything he said, did some extra holistic work, and followed the doctor’s advice (which did not include medications). Within two days I felt completely well and asked the doctor for a new blood test, which he refused to give me because he said it was too early to tell. But, I knew I was completely well and I insisted. The results came back normal, which I was fully expecting. The Ron Roth book explains faith in practical terms. The book is spiritual, not particularly religious or one-denominational. It’s well worth a read.
        All the best,
        Rossa

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        • Hi Rossa,

          Thank you for thinking of me! I love the title of the book. I will check it out. It’s always a good thing to hear a real case of healing. I hope this coming year, like starting today, brings me not only more peace and less pain, but a will inside to… well, I don’t know, I guess a will to live and live stronger. I appreciate you sharing this experience with me. I also intend to visit your blog again soon.

          All the best to you too,
          dogkisses

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