Living with Fibromyalgia

Although this is the longest I have gone without a blog entry, I did not drop off the face of the earth.  For reasons unknown to me, my fibromyalgia (FMS) has flared over the past week and so I spent most of the weekend in bed or on the couch.  I had no desire to be sitting up typing on a computer. 

Fibromyalgia Awareness Pin  I was diagnosed with FMS when I was sixteen.  After being in a minor car accident, I began having problems with relentless muscle pain and I could not get enough sleep.  I have no idea how I managed to keep my grades up because I remember crashing on the couch every day after school.  I would wake up in time for dinner and then do my homework and go to bed.  My poor boyfriend would come over and end up playing Nintendo with my dad while I slept on the couch (thanks for putting up with me, David!). 

My mom stood by me and listened to me. She did not brush off my problems. She took me to the doctor and we were very fortunate that he had a personal history with FMS. It is believed that it takes most people an average of 5 years before they finally get a diagnoses of FMS.  The doctor gave us a couple of articles to read and it was a huge relief to know I was not crazy.

I have been examined by many different doctors since then…unfortunately, they ALL wanted to see for themselves that I had FMS and would use trigger points as an indication.  To meet the diagnostic criteria for FMS, you have to have widespread pain in all four quadrants of the body and 11 of the 18 trigger points have to test positive (I have 16).  To test positive, the patient feels pain with a minor touch (just enough to change the color of the skin).  We aren’t talking minor pain.  We are talking get-the-blank-off-me P.A.I.N.  If one of my trigger points is touched (even just slightly brushed), I will feel the pain at that spot for up to five minutes.

Sustained muscle contractions or repetitive movements today can keep me in bed tomorrow.  Simple things like peeling potatoes, sweeping, or carrying a bag a long distance can cause inflammation in my neck and shoulders which will cause the pain to spread throughout my body.  Holding my head up is a huge chore.  You will notice that I frequently prop my head up with my hand.  At home, I usually sit so that my head is propped up on the couch or chair.

I have had EEGs, EKGs, MRIs, X-rays, and countless blood tests. At 18, I was told by a PA that he thought I had a brain tumor (because of recurrent migraines and dizzy spells which are both symptoms of FMS).  During my pre-employment physical for Glaxo, the Dr. told me I should be on disability, not working full time.  I was 22.  My pregnancies were so problematic and taxing on my body that our midwife told us point blank that we should take measures to ensure that I never get pregnant again. (because I know you’ll read this, thank you Kim for being such an understanding boss when I was pregnant with Hailey!)

I write all of this not to gain your sympathy, but to gain your understanding…not just for me, but for everyone who struggles with a chronic illness.  I have had to endure too many co-workers who believed I was lying when I said I was sick or unable to come to work because it hurt to move – especially since to them, I would have seemed just fine the day before.  Thankfully this has not happened as much since we purchased a Sleep Number Bed (my what a difference a bed can make!).  Encounters with some past co-workers have made me apprehensive about getting too close to people or opening up to people about FMS and how it affects me.  I don’t want to feel the deep hurt of having my pain and fatigue being discounted by someone I trust and feel close to.

I put on a good “face”.  I have gotten so good at putting on a show and smiling through the pain that I have very few people that truly understand me and what it takes for me to get through each day.  The aches and pains?  Think about how your muscles feel when  you have the flu or when you exercise your whole body after months of not working out.  The fatigue?   Imagine going to bed night after night and falling asleep, but waking up feeling like you just closed your eyes.  The mornings? Imagine having to be helped out of bed in the morning because you hurt so much it is difficult to even lift your head.

God truly blessed me with a husband whose mother also has FMS so he understands me like almost no one else can.  God also blessed me with a mother-in-law who not only has done a ton of research on FMS, but who is also a physical therapist and can provide me with therapy when I most need it.  Ed has learned some of her tricks and is able to help as well.

I have taken so, so many drugs and I worry about the long-term effects.  I think I have taken every sleep drug on the market.  My current drug cocktail was working until this last flare up and I hope I don’t have to adjust it.  However, I did just see that a new drug (Lyrica) has been approved by the FDA for treating fibromyalgia.  I can’t wait to talk to my doctor about it and see what she thinks.   Many thanks for those of you that read this entire post.  Thank you for stepping into my world for a few minutes. 

The following is from the Lyrica website. to learn even more, visit one of the FMS sites listed on the right.

What Causes Fibromyalgia?

Fibromyalgia affects 2 to 4 percent of the population, according to the American College of Rheumatology (ACR).  Scientists believe that the condition may be due to injury, emotional distress, or viruses that change the way the brain perceives pain, but the exact cause is unclear. People with rheumatoid arthritis, lupus, and spinal arthritis may be more likely to have the illness.

According to ACR, people with fibromyalgia can have abnormal levels of Substance P in their spinal fluid. This chemical helps transmit and amplify pain signals to and from the brain.

Researchers are looking at the role of Substance P and other neurotransmitters, and studying why people with fibromyalgia have increased sensitivity to pain and whether there is a gene or genes that make a person more likely to have it.

A Million Thanks to my family and friends who provide me with much needed support and encouragement every day! Thank you Trina for caring enough to ask about FMS last week and (without realizing it) helping me to decide to write this very personal post.

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About emilypage

I have been married to my husband, Ed since 1998. We have two daughters, Hailey (9) and Leah (6). I have been the Director of Easter Seals UCP Stepping Stones Children's Center in Sanford since 2004. I am an Independent Senior Director for Thirty-One and I absolutely LOVE it! I was raised as a Wolfpacker but saw the light and now I bleed Carolina blue (sorry, dad).
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18 Responses to Living with Fibromyalgia

  1. jamiestamm says:

    Part of what I’m finding wonderful about writing a blog is the opportunity to teach others about what I know and in turn learn from them. That said, thank you so much for sharing your story.

  2. elyakatz says:

    Consider reading up on the Guaifenesin Protocol. Wiki has something on it, but it’s not very good.

    Here’s the site: http://www.fibromyalgiatreatment.com/

    I have written a post which outlines the protocol at my blog as well. ElyaKatz@Wordpress.com. I’m currently on the protocol, with impressive results.

    Be well.

    EK

  3. Kim Pritt says:

    Emily — First, you are quite welcome – you were a pleasure to work with! Second, my Mom also suffers from Fibromyalgia – I know how dipilitating it can be! During her recent hip replacement surgery, they had her go off all pain meds for 2 weeks prior to the surgery (because of their blood thinning tendancies). Then, with no pain meds to help her get up and walk, they had her set up for several appts for pre-exams and paperwork and stuff — this meant getting dressed, driving 30+ miles to the doctor, sitting for hours in their office, and then getting poked and prodded before being sent back out for the 30+ mile drive home!!! I know you can imagine what that was like — not only were her pain meds helping the Fibro, they were also helping her arthritis and the severe pain her hip was giving her (reason for the surgery)!!! It’s been difficult for her to find a doctor that knows what she is going through with this horrible disease! I wish you well – let me know if I can ever help you in any way!

  4. Susie says:

    Gosh Emily! First, let me say Thanks! It is so tough living with fibromyalgia, and just trying to understand why. I have been diagnosed sometime ago but didn’t think the doctor was right (I guess denial)

    Now I am doing as much research as I can to try to understand what is/has been happening to me. It has given me a lot of affirmation, knowing that the things I am feeling are fibromyalgia related and not just “in my head”.

    I have had swelling in my fingers and skin pain and the doctor and physical therapist just looked at me like they didn’t understand what I was saying — then I found the answer on a couple of blogs. I have all kinds of weird pain besides muscle and joint.

    My doctor and I both believe that mine began with the constant physical abuse, and the stress I had to endure as a child. Then I had toxemia with my first child. Then the migraines started and were relentless. As long as I can remember I have had to struggle with pain.

    It is hard to live with but I am doing the best I can – I just hate taking so many medications.
    I just want to thank you for your site and links. It really helps to read other people’s stories.

    Honestly, it the Lord Jesus who keeps me hopeful – and my loving husband!

    Thanks again,
    Susie

  5. justlovehim says:

    Wow! I have heard of FMS, but I’ve never really learned much about it. I am glad you shared…it opened up my eyes to FMS. That sucks that you have to deal with it on a daily basis. How amazing that God put you and your husband together! That is obviously a God thing. :0)

  6. elyakatz says:

    According to the Deposition Theory, Fibromyalgia is an inherited disease, present at birth. Some people develop symptoms as young children, others later. Most people begin to notice symptoms that begin to affect their ability to cope after some trauma, such as surgery, illness, or extreme stress, perhaps abuse related, but not necessarily. These stressors are said to trigger FMS, but they are not the cause of FMS.

    This is because the main problem that folks with FMS have is that their bodies do not produce enough energy. The excess phosphates deposited at the cellular level stop adequate production of ATP, th body’s fuel. So, our bodies go into survival mode, only using the bare minimum amoutn of energy for survival. So, we are running on empty, then along comes some trauma that causes more stress that we can handle, and we crash. At that point, we realize there is something very, very wrong.

  7. Hello,

    My name is Catherine. I am a Select Comfort customer service representative. I am so glad that your Sleep Number bed can provide you some relief from your discomfort. I encourage you to share your story on http://www.beds.com for other Fibromyalgia sufferers who can benefit from your knowledge and experience.

    I am very interested in learning more about this condition and the effects that your Sleep Number bed has on it. Would you be interested in sharing this with me? If so, please send me an e-mail.

    If you ever have any questions or concerns about your bed, please do not hesitate to contact customer service at 1-800-472-7185.

    Sleep Well,
    Catherine

    My Sleep Number is 35

  8. Ashley says:

    My name is Ashley and I have had symptoms since I was 20 and was recently diagnosed at 36. I have had a really bad time with it in the last year. I was in a car accident and then my fiance passed away. I can not seem to get the pain to stop. I go to a specialist I taked medication daily and it does not seem to work. To get up in the morning is the worst. I feel like I have nails going into my heals when I get out of bed. It is horrible. Then in turn…I just want to sleep. I am on an anti depressant but that feels like a band aide. I still have the depression. A lot of people make me feel like I just want the medication or I am being lazy. This has been a night mare and of course the fatigue is another story. How can you keep the stress out of your life? Especially being a single mom, the economy, and everything else in this world that comes a long with it? I just do not know what to do and I would love to wake up one morning able to get out of bed without pain and feel as though I actually did have 8 hours of sleep…..Any advice? I need it. Ashley

  9. emilypage says:

    Ashley –
    I absolutely understand where you are coming from. The first thing you need to know is that you are not alone. It is so easy to feel alone when others can’t SEE anything wrong with you. I will send you a private email with what has and has not worked for me. It is very important for you to be completely honest with your doctor. If you ever encounter a doctor who makes you feel like it is all in your head or that you are just there for drugs, look for a doctor who specializes in pain management. I joined several FMS groups on facebook and I have seen a lot of good advice on those groups.

  10. Anonymous says:

    marie-uk

    its nice to hear i’m not alone.i dont think anyone can understand what we go through on a daily basis,the doctors,family and friends.i know that sounds harsh but even if they see you in pain ,they can gve you words of sympathy,or look after the kids and leave you to ride out the pain,i have 4 children,16,12,6 and 2.and only god knows how i’v suffered when i’v had no help and i hav’nt been able to cook for my children or look after them how a mother should,it destroys your spirit and lust for life,you see everyone else going out when they want,going to the shops,visiting friends enjoying life.all i can do is look out of my window and look at my car in the driveway becuse im to sick to drive!i’v had this condition cronicly for 7years now,ido have hope but this is all down to being a muslim for the last 13 years it’s got me through a lot,life is a test,not all fun and games….and dont i know it!it’s a very lonely ilness,becuse even your best,best friends have thought to themselves….IS SHE REALLY THAT ILL?so if i didn’t have god to talk to i dont know what i would do?probabaly end up in a mental ward!so i shall carry on with my FMS life

    mrie uk 8.9.08

  11. icarecafe says:

    the icarecafe would really like your help with a discussion on Fibromyalgia

    As you many know the icarecafe has been set up to provide a space for patients, carers and their supporters online.

    Some of the members have set up a discussion group on the subject of Fibromyagia. The group has asked lots of questions which are still in the process of being answered. So we thought it appropriate if we invited people from other Fibromyalgia discussion group and blogs to ask if they wished to participate.

    To have a look at the discussions so far please have a look at

    http://www.icarecafe.com/?page_id=1107&group_id=36

    Please do feel free to join in the discussions and to post any information which might be of interest to our members.

    If you have any questions please feel free to get in touch. I’m one of the moderators of the icarecafe and I can be contacted by sending and internal email to my profile.

    Thanks very much in advance for your help!

    Best wishes

    Belinda Shale
    Moderator – the icarecafe

    http://www.icarecafe.com

  12. nikki says:

    Thanks for your blog.I am fifty have FMS and a host of other stuff.Was looking for some comfort. You have a beautiful family.God Bless

  13. Lynette says:

    Hi, I am Lynette from South Africa. I was diagnosed with FMS in 2003 after a prolonged period of extreme stress. Not much is known of FMS in South Africa and I was put on Trepeline. Lyrica is not available in our country. I have learned to put on a mask…and when I grin it could be a grimace of pain. Few people know just how bad I feel most days.

    It was good for me to read your blog and know that I am not alone. Just wish there was something to cure it.

    • Anonymous says:

      hi Lynette i am Wendy also from SA. Lyrica is availble in SA.

    • emilypage says:

      Hang in there! I understand the “mask”. I learned long ago how to put on a good face. The only problem is that then some people don’t believe me when I say I am in pain. I would advise you to really look at Lyrica and the side effects before trying it. I have heard more negatives than positives from people who have tried it. Wellbutrin has really helped my muscle pain and fatigue and with no side effects. Amrix is also a HUGE help – I have to pay $50 a month for it but it is worth it. I’ve tried going without it and I just can’t.

  14. Jill says:

    I have FMS – and it’s like living in a living hell, people especially the medical profession treat me as if I’m totally mad, or a malingerer.

    There are times I just feel like giving up.

    Thanks for being so up front and honest about how it makes you feel, it reassures me that I’m not only alone, but I’m not actually some malingering lazy person.

    I really miss being a whole real person.

    • emilypage says:

      You are absolutely not alone. I always fear that people think I am just lazy…but if I push myself to make me look better in their eyes, I just end up paying for it! If you don’t have a supportive physician, ask around and find someone who treats multiple patients with FMS and who will provide you with the help and support you need to live the best life you can!

  15. Pingback: Having a Thirty-One wife | Husband of a Proverbs Thirty-One Wife

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