Fibromyalgia and My Search for Hope

HopeI was diagnosed with fibromyalgia in February of this year, but I’ve suffered from chronic pain every day for over 4 years.  I’ve had long bouts of chronic pain before that too.  The last four years have been rough.  Last winter was the worst.  I was lost on a sea of pain, just trying to survive.  I would go to work and use every bit of energy I had to get through the day.  Eventually I didn’t have the energy, so I relied on adrenaline to get me through.  I would throw up a wall in my mind to get through the work day.  It would block out everything from my neck down.  I often forgot to eat lunch or take my medicines because I had blocked out all signals from my body.  As soon as I left work, that wall tumbled down and a wave of pain swept me away.  I’d crash as soon as I got home. My evenings were spent with an ice pack on my head and a heating pad on my back, resting until I would try to sleep.  But I wasn’t getting any quality sleep.  My body was not getting a chance to recharge.  I knew I needed to exercise to help with the pain, but I was just too tired.  I couldn’t make myself do it.  Finally, I had to take an 11-week medical leave of absence from work.  That started on April 1.  I used that time to try to heal, regain my energy, sleep better, and learn how to manage my pain and stress.

That winter was terrible.  I can’t adequately put into words just how dark things got for me.  I was blinded by the pain. I couldn’t see or feel anything else going on around me.  I couldn’t connect with others.  The pain overwhelmed me.  I emerged from that winter of darkness into a brighter period during my leave from work.  Somewhere in there, I lost my hope.  I don’t know when I lost my hope or if it will return.  I feel like a different person now.  Like I emerged from a fire reborn, in a way.  Fibromyalgia is part of me now.  Accepting it as a component of my existence gives me the power to control it as best I can.  I can make the pain better, I just have to work hard at it.

My therapist keeps telling me that I am hopeful and optimistic about my future, that hopefully I’ll be pain-free one day.  He tells me I’m nitpicking the definition of “hope.”  Hope has become this intangible thing to me that I can’t rely on anymore.  I have to take a more active role in my fate now and learn to manage my pain.  I can’t just rely on “hope” to get me through.  I do hope for a pain-free future with no fibromyalgia.  I don’t feel a sense of hope anymore.  I can’t place my trust in hope.  I can only trust myself and my doctors and therapists to help me manage my pain and get healthier.  I work hard every day to increase my energy level, learn to manage my pain with the goal of decreasing it, be healthier, and to keep a positive outlook.  But if you ask me if I’m hopeful that I’ll be pain-free one day, I say no.  I believe that it’s possible that one day I’ll wake up and the pain will be gone.  It happens.  I believe I can still achieve everything I want in life, I’m just going to have to go about things differently because of the pain.  I have to make allowances for my health and it may take me longer to achieve things, but I know I can do it.  That may sound like I’m hopeful to you, but I just don’t like that word anymore.  I don’t know when hope became something negative and not to be relied on to me.  Hope, for me, has become like winning the lottery.  You really want to win the lottery, but the odds are stacked against you.

Finding Hope

My Search for Hope

So I will continue battling my pain every day.  I will continue working to make myself healthier.  I will keep fighting my fibromyalgia.  I will exercise every day to help control the pain.  I’ll keep doing all the things that I know help.  These things are tangible for me.  I have seen the proof that they work.  Maybe one day I’ll find my hope again.  I don’t know.  For now, being optimistic and motivated to keep working to improve my health and manage my pain is enough.

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12 thoughts on “Fibromyalgia and My Search for Hope

  1. staciegh says:

    You are such an inspiration to me. The strength you have within yourself is amazing and I envy you. I am very curious to know what kind of exercises you do. I hope you don’t mind me asking if you have chronic fatigue too? That is my biggest problem, I get so exhausted and then my pain and discomfort begins. I don’t know what to do for myself… I’ve been diagnosed since 2000 and been fighting this battle a long time.
    I’m sorry for asking so many questions. I just need to try to be optimistic too…. Thank You Stacie 🙂

    • painfighter says:

      Thank you for your kind words. I’ve been meaning to do a post on the exercise I do daily and my mental hurdle to make myself exercise every day. I’ll do that tomorrow. Mostly, I do a ton of walking and I ride a stationary bike in my basement that I got for Christmas 2 years ago. I do a lot of yoga too. I’ll post more details tomorrow.

    • painfighter says:

      An exercise post will have to wait until tomorrow I think. I want to take a picture of the street I walk on as my “bare minimum” walk to include. I don’t know if I have chornic fatigue syndrome or not. I do suffer from fatigue. 8 hours of sleep is a must for me each night, although I haven’t been sleeping well for weeks now. I tire very easily. My energy was nonexistent before I took a leave from work. I was slowly able to increase my energy and stamina over that leave. I have to prioritize my day because I know I only have so much energy so I have to pick the most important things to get done. I have to leave myself time to recharge after errands or anything that tires me. Fatigue does make my pain worse, but my pain is always there even if I have energy at that moment. Hang in there!

  2. You are so strong! We don’t need to have faith in the hope that one day we will be pain free, we need to fight to live the best life we can with the illness.

  3. Tiffany says:

    I was just diagnosed with fibro a couple weeks ago. I’ve been having problems for many years now and have seen many doctors and have gone through countless blood tests. It got to the point when the doctor would order the tests I would just tell him “it’s going to come back that everything is “normal”. After a few days, I would get a call from the nurse saying “Your test came back normal”. I would be so surprised…NOT! I felt that getting the blood work done was a waste of my time and money. In 2010 I went to see a rheumatologist who ordered a crap load of blood test. As I sat there listening to him tell me all the test came back “normal” tears just started flowing. I knew something was wrong and I just wanted it fixed. I just couldn’t get the concrete evidence. What made it even worse is that the doctor said I shouldn’t be upset because my test came back “normal”. Then he just referred me back to my GP. My mother has fought this disease since she’s been very young. She also has extreme migraines. I guess I have inherited it from her. I also have knee problems. Have had surgery and countless injections. Just received a letter from my insurance company denying a claim for another surgery saying that’s it’s too new and experimental. I’m supposed to wait another 10 years for a knee replacement since I’m too young… I’ll be 40 next week. I have gained 20 lbs in the past 2 1/2 years due to not being as active because of the cartridge damage. I believe this has made my fibro worse. I have done much research the past several weeks to try to educate myself on fibro. I am experiencing extreme fatigue, all over pain, and the “fibro fog”. I just wish people had a better understanding of this disease. My husband asked me what I wanted for my birthday and I told him I just wanted to feel good. He has taken up running lately and works out regularly. He said “you can start working out with me”. That just made me realize he has no idea what I’m going through. He is a wonderful husband and never does anything to upset me but when he said that, I just wanted to cry. How do you get people to understand that your inactivity isn’t laziness? I have to force my limbs to move cause they feel like they weigh 500 lbs. I have totally lost who I truly am.

    • painfighter says:

      Hang in there Tiffany! Fibromyalgia is tough but you can battle and improve your symptoms. Exercise is the best medication, even if it’s just a walk up the block and back. Any movement helps. I stretch all the time and do lots of yoga. Swimming is highly recommended for fibro sufferers and might be a good option for you with your knee proglems since it’s no impact. I’ve got a few posts that you might find helpful on the isolating effects of fibromyalgia, fibro’s invisible face, and my mental battle with fibro. Soft hugs!

  4. […] explains, through her blog Fighting Fibromyalgia, how hope eluded […]

  5. […] explains, through her blog Fighting Fibromyalgia, how hope eluded […]

  6. ceaton85 says:

    I know your pain. I know your feeling and I too have lost hope. But as you say, I will continue to do what I can do focus on the tangibles to get through the pain, ache, fatigue and life one day at a time. I am glad you found my blog.

  7. eof737 says:

    “Maybe one day I’ll find my hope again. I don’t know. For now, being optimistic and motivated to keep working to improve my health and manage my pain is enough.” I hope you find your hope again. Your positive approach is a blessing. 🙂

  8. Eva says:

    I have lived with fibro for 22 years. No one who does not have this can truly relate, they just can’t.Why both to say anything, they can not hear you. However, I joined a Fibromyalgia Support Group in my town, and it is here where I found my Voice and my Hope. I can not express to anyone with Fibromyalgia how important it is to find a support group. Be it in your town, or in a blog. Hope is not in finding a cure. Hope is knowing you are not alone.

  9. lucybythesea says:

    Thank you for this post. I am in alot of pain with fibro most of the time (and I think we both know what ‘alot’ means!). I found myself disappointed when I realised the world did not end today as the 2012 myth would have it. That’s not good is it?
    I am reading an interesting book atm by the buddhist nun Pema Chodron – When Things Fall Apart. Alot of it is about giving up hope as a crutch, and accepting the present moment as it is. Easier said than done when youre in huge amounts of pain all the time though.
    As Eva said above, you are not alone. 🙂

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