Tuesday, November 19, 2019
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Annie’s Story (Fibromyalgia and CFS)

Being as I am a new phenomenon to many of you (!), I figure I should at least introduce myself and what I plan to be writing about for The Fight Like A Girl Club.

My name is Annie Martin. I am 23 years old.  I have been mysteriously ill since roughly 13 years of age. Over the past 10 years, I have been diagnosed with fibromyalgia, chronic fatigue syndrome, and myofascial pain syndrome – as well as celiac disease, asthma, general autoimmune attacks, and multiple mental health issues.

But enough about me, I’m here to give you the all the goodies (and not-so-goodies) about the first two controversial, misunderstood illnesses. Also, I personally like to call the latter ME/CFS – as chronic fatigue syndrome sounds as though the person afflicted is just lazy and wants to take a nap…which is not the case at all.

Fibromyalgia and Chronic Fatigue Syndrome (Myalgic Encephalomyelitis): An Introduction

A)     It sucks.

B)     At least it isn’t fatal.

C)     It affects mostly women, but some men as well.

If there is one thing I have learned after being sick with these illnesses for the majority of my life, is that you’ve got to learn to ride the wave (no matter how rough).  These are illnesses that tend to come in flares – but I haven’t heard of anyone getting rid of them for good.

FMS and ME/CFS fall into a spectrum of syndromes that are believed to be the result of an over-sensitivity problem in the nervous system, resulting in a constant low-energy state. As a result, brain chemistry is altered with lower levels of serotonin, an increase in substance P, low levels of growth hormone, and low levels of ATP.

If you get a doctor who believes in these illnesses (as there is still prejudice and mixed opinions in the field) – they would tell you that any combination of infections, genetic mutations, and physical/emotional trauma may be the initial cause.

The symptoms for these illnesses vary DRASTICALLY and can affect any system in the body.

Generally, FMS and ME/CFS involve:

  • Severe fatigue (to the point where you can feel paralyzed in your own body!)
  • Pain.  Everywhere.  Like you got hit by a truck.
  • Poor (non-restorative) sleep
  • Brain fog
  • Irritable bowel syndrome
  • Recurrent infections
  • Sensitivity to medications and chemicals
  • Migraines
  • TMJ dysfunction
  • Restless Leg Syndrome
  • Interstitial Cystitis
  • Dizziness
  • Anxiety disorders
  • Depression
  • Hypothyroidism
  • (This list could go on forever…)

On top of everything else, there is a tendency for this immune dysfunction to lead to the acquisition of autoimmune diseases such as systemic lupus or rheumatoid arthritis.

Chances are, if you’ve been hit with these symptoms for a long time, seen endless doctors who have claimed you to be crazy, and still have no answers – you may have an illness along this spectrum.

Luckily, you are in the company of some great women, and that is what The Fight Like A Girl Club is here to promote! Most days may be spent with some degree of pain, but with the support of a group – we are capable of making circumstances much more bearable.

Gentle hugs to all.

xoxo,

Annie

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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23 comments

  1. Yay Annie! Way to get the word out!

  2. It is awful hard to get a doctor to help you,knowing you know what is wrong with you.I am still having trouble finding a doctor who cares enough to help me.The last Dr. I saw for this told me I was a completely idiot for thinking that it is FM/CFS/ME.I really don’t have anywhere else to turn.I stay in constant pain daily.I love your post because it has given me a little more hope for the others that are going through what I am going through right now.

    • This so-called-doctor is the IDIOT! Finding the right doctor is very important for you…….at a 99% rate of importance! You have to have a doctor who you can talk to about the way you feel (and I don’t mean just the pain you are living through)….I also mean the way FM & CFS affects your thinking process and your very existence on a daily basis!
      Please find that doctor! You don’t need to add someone else to the list that keeps putting you down simply for the way you feel……and for the fact that you DO NOT FEEL LIKE DOING ANYTHING AT ALL MOST OF THE TIME!

      So sorry Rhonda….my heart hurts for you girl!

  3. Brittany Patterson

    I was diagnosed with CFS roughly 9 yrs ago and though I was told it would become easier to deal with and have less “flare ups” of uncontrollable pain and exhaustion, as they called it, it has gotten severly worse. Prescription diet pills, phentermine, would help live day to day with the exhaustion but has currently subsided in helping and I feel helpless and not to mention useless. I have a hardworking husband and 2 boys to take care of and some days I can’t even muster the energy to put a load of laundry in. It has become very intimidating in the fact that I feel like a complete useless, lazy mother and wife and I am so far from having a lazy mentality. Thank you so much for your input on this issue and helping us all who suffer know that we are not alone.

    • Brittany~

      From one wife/mom to another: YOU ARE NOT ALONE!!! I could have written your post. I went from a Type A personality/perfectionist to living with Fibro. My mind goes nuts most days with the “Shoulds”: you should clean that toy room, you should catch up on the laundry AND put it in drawers (not baskets), you should plan (and cook!) a wonderful family dinner. WHAT ARE YOU WAITING FOR??? My body, though…. my body says, “Are you KIDDING me??? Ain’t happening!”

      The only advice that I can give you is this: appreciate your hardworking husband. Love him to death. Say “thank you” as often as possible. He will appreciate that you appreciate him. He is your greatest supporter. 🙂

      Gentle hugs
      Shannon

  4. I was diagnosed with FMS almost 3 years ago by a nurse practioner in my primary care physicians office. My own doctor doesn’t believe I have FMS, and thinks everything I am going through is due to stress. I have never been able to keep a job due to my constant pain and other symptoms. Eventually, depression took over, than a suicide attempt, and now I have both a doctor AND a psychiatrist telling me that it is all in my head. I, too, don’t know where to turn, with limited insurance and unbelieving doctors. I feel like such a burden to my husband, who is trying very hard to keep our heads above water in this scary recession. Needless to say, Social Security isn’t much more sympathetic than the doctors!

  5. I have been diagnosed now for 6 years. I have been to several neurologists (one told me to “lose some damned weight and exercise and get over it!”). I was recently referred to a rheumatologist because my SED rate was 48 and my ANA was positive at 640, but she says she doesn’t know what’s wrong with me and diagnosed me with Severe Fibromyalgia. Better yet, she DOESN’T treat Fibromyalgia and told me neurologists don’t either that I needed to go to pain management. My own child can’t hug me because it hurts so bad. It has now started in my neck/throat and has consumed my chest, back, arms, legs, and basically my whole body. Savella was helping, but hasn’t been doing much the past couple of weeks. I have lost 8 pounds in 2 weeks because every time I start to eat, I get nauseated and have to stop. I am a paramedic so it is becoming more and more difficult to do my job because of the confusion, forgetfulness, fatigue, and pain. I really hope they come up with something soon.

  6. Great post, Annie! Way to go in terms of explaining the issues/concerns of living with chronic illness.

  7. Super post…thanks so much for sharing…way to BE A HERO! *smile* Finding the right doctor is…PRICELESS. I had the wrong doctors tell me I was “just stressed” (who wouldn’t be?) “just depressed” (you would be too!) and simply needed to “go home & spend some time with my Mother.” (Yes…he really said that.) All of these things may contribute to my pain, but NONE of these things would cure me. Finding a doctor who LISTENS & BELIEVES MY PAIN IS REAL has done more for me than any medication.

    To all doctors who do this for each of us…way to “BE A HERO!”

    Strength Through Unity,

    Lynn Julian
    http://PopSuperhero.com

  8. Thank you everyone!!
    Is there a particular topic that anyone is interested in for a future article?
    Love to have your input!
    xoxo,
    Annie

  9. Very well written article and I hope to read many more. It is great to see a website support women suffering/dealing with chronic illness. Great job!!

  10. Annie! Fab post my Dear!
    mo

  11. Great post, I’m so glad you’re raising awareness for us spoonies! =D

  12. Great post! I’m so glad you’re raising awareness for us ME/CFS & Fibro spoonies. Well done. =D

  13. I have not had chance to investigate all posts – but how are you fighting back?
    Pain medication is not the answer. I will be blogging about how I have managed my fibro since 1986 and keep ahead of it. Best way to describe is body becomes toxic. Don’t expect others to understand find what works for you. Do not give in to pain. Exercise does help. Yes even when in worst pain. Discovering how you are poisoning your body is the answer and pushing yourself.

  14. Thank you for all who have read the article! It was an absolute pleasure to write it for you all!

    Rhonda, it is HUGELY important that you find a good doctor!! Keep asking for referrals and make sure you find the right doctor that works for you!

    Darleen, I plan to present information on both natural solutions and medications to deal with pain. I am a firm believer that neither approach necessarily provides 100% of the answer. In addition, Fibromyalgia is a spectrum syndrome, and therefore has vastly different levels of pain/disability from person to person.

    I’m working on my second post this week!!

    xoxo,
    Annie

    • Hi Annie!! I just posted a article,should be shared in a few weeks. This sounds like a lot of what I’m going through. Since 2012 unexpected. My medical records says CFS, low back pain, there’s 2 lesions on low back, one on brain, initially they thought MS, then attack in CNS from a virus that caused neuropathy, my dr had to put me on adderall to be able to get up. It works sometimes but when my body’s had enough I don’t believe anything will work. Now the pain clinic which I want away from so bad says I have fibromyositis . I don’t know the difference than fibromyalgia. My protein in spinal fluid was176 suppose to be 15-45. Your story was inspiring, makes me want to bring more awareness. I’ve forced myself back to work for health ins. However after I’m off my day is pretty much done. I hit the bed, I feel worthless as a mom, and wife, I have to fight this. We need to spread more awareness on invisible disease, people see it as lazy and they couldn’t be anymore wrong, my pain with pain meds is very severe. Can’t sleep well at night, RLS . I haven’t been given a full diagnosis, they just put stuff on my medical record in order to see me. Any advise you could share I would greatly appreciate I also failed a TB test but lungs are clear. I have tremors, severe muscle attacks, and flare ups where all my everyday pain is about 30-40 times worse and I sleep for like 5 days. I haven’t had a appetite since getting sick. The strangest part is I can not belch at all. I don’t understand that.
      Thanks,
      All of these stories are so helpful and a wonderful way to spread awareness. Please feel free to email me. Crystal@flossysdesign.com

  15. This is a great post! I also suffer from CFS, although not officially diagnosed with it. I have suffered from it since I was 17 and I just turned 40…I also have depression, anxiety, migraines, a Chiari Malformation, small hole in my heart, IBS, restless leg, arthritis in back, PTSD…I think that is all- and they are all diagnosed!! I am on meds for most of these, but I am so glad that I found this site. I want to be checked for Fibro as well. I have a lot of pain in my back, and legs. It is nice to know that I am NOT alone in all of this nor am I crazy! Thanks!! 🙂

  16. Annie,
    I’m not sure if you will see this comment or if you will be able to respond to me but I have some questions about ME/CFS and I’d love if you could find the time to answer…I’m 15 years old and I’ve been suffering from endometriosis since I was in the 5th grade, age 10. We never suspected endometriosis and mainly focused on the large bump I could almost always feel on the lower left side of my abdomen. I had various emergency room visits, none of which made any difference. Once in awhile a doctor would take me almost seriously and set me up for a CT scan or an xray, which only showed that I was constipated. And since I was, I was blown off for years and told this was the cause of all my pain. I moved in with my dad in stepmother, out of state of my mom (who is the only one truley taken my health seriously) in seventh grade, when I was almost 13, and they just don’t take me seriously. They think i’m just making it up. About a year later, february of 2011, it was discovered I had an 8cm ovarian cyst, and upon removal it was discovered I have stage 2 endometriosis. My doctor gave me birth control and pain medication, but neither work. But my problem is, I have so many other little problems that just make people think I’m a hypocondriac (i’m a bad speller..)
    — I’m exausted, ALL the time, to the point where it’s not normal. But they just say i dont get enough sleep (as much as i sleep, i never feel refreshed. It’s as if theres a cloud over everything..I’m always so tired, I just feel foggy..) This started after I got mono in january 2012. it never stopped..only got worse.
    — this is causing me to have horrible trouble concentrating. I never used to have this problem, it’s developed within the last year or so..and i can’t remember anything. I used to be able to just hear something and remember, never had to study, now i’ll study for hours and can’t remember.
    — I get horrible headaches..the kind that make you feel sick.
    — Everytime I stand up, I black out. I don’t faint, but sometimes I lose my balance and fall. The doctor said it’s normal, my blood pressure just drops..and I’ve fainted in the past.
    — I’m just..clumsy. But it’s like i’m just wobbly, like the floor is moving under me and i can’t keep up. I usually just laugh along when people who say im a clutz but..it doesnt seem normal to me
    — I have social anxiety so bad that if i have to talk to someone i dont know or do something infront of someone, I’ll cry, and i breath really fast because my heart starts to race..like it’s skipping beats.
    — When I walk outside, I can’t open my eyes. It’s too bright..while others with me don’t even notice
    — I’m always freezing, when others are sweating. And sometimes I have heat flashes.
    — Everytime I eat anything at all, I get so nauseaus I feel as if i’m seconds away from throwing up..yet I never do. I can barely eat anymore. And i can barely move for sometimes a few hours afterwards. I have my first GI apointment coming up but i’m afraid they won’t take me seriously either
    — My legs are restless. I just have to move them..lock my knees..anything. They can’t be still.
    — I have joint problems, not pain, just more of a looseness..especially in my knees. As if theyre popping out of place. And my left wrist (only) has horrible pain, for as long as i remember. doctors don’t know why. they just gave me a brace for when it gets bad.
    — I’m severely constipated.
    — I’m always dizzy
    — I catch EVERYTHING, and get it worse than most others…people say i’m always sick
    — I have a gland in my throat that often is swollen
    — I have problems with acid reflux
    — I’m constantly out of breath. I’ll walk up a small flight of stairs and be panting
    — I have a history of depression…
    and I could just keep going…but my parents don’t take me seriously enough to take me to the doctors, and if i get them to, noone takes me seriously. I was just wondering if it sounds as if these symptoms could be ME/CFS or any other illness/dissability you know of…I hope you can find the time when you feel well enough to respond to me in some way and help me solve this mystery…I don’t want to keep fighting through this. I just want to know what’s wrong with me and although I don’t know you and you don’t know me, you seem like exactly he person who will beleive me…when noone else but my mom does. And being out of state..she can’t do much. Please help me.
    ~Shannon

    • Hi Shannon,
      What you are going through sounds so much like what I used to go through! I would really encourage you to google “GAPS” to see if you think that you have it – it certainly sounds to me like you do. Then, if you think you have it, go to http://www.leakygutcure.com and consider buying the Leaky Gut Cure Program for about AU$40 (it’s 10 instant PDF downloads onto your computer). I have been following that program to treat GAPS, and it has been working wonders for me! I am sleeping a lot better, I’m actually properly alert and awake for a lot of the day, my PAIN IS ALMOST GONE and I no longer take painkillers, I can concentrate on my studies, I no longer stumble over my words or the furniture, I have no more constipation or cramping from IBS, and I am no longer depressed (which, by the way, was caused by the FOODS I was eating and NOT by a pessimistic attitude). It helps me in other ways too, but you can read about it for yourself.
      Hope this helps you like it has helped me!
      Jasmine

      • PS. Forgot to mention that I was on the pill for really painful, irregular menses and on painkillers for the fibromyalgia pain – and both ruined my stomach even more! The good thing with this program is that (at least for me) it reduced my symptoms so much that I was able to go off of the pill and painkillers without the pain or irregularity coming back. In fact, the program decreased my symptoms so that they were better than when I was on the pill and painkillers.

    • Shannon I also have endometriosis, don’t know what stage yet waiting on a laparoscopy and cystectomy for a possible dermoid/teratoma whichever you want to call it, they can grow hair, teeth, even bone or brain tissue pretty disturbing, but I also have a lot of those problems too and many more:( Is there a link between Endometriosis and fibromyalgia and CFS. I am waiting on insurance so I can see a neurologist my family doctor referred me to..

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