Fibromyalgia and Neuropathic Pain

“Pain is real when you get other people to believe in it”, Naomi Wolf

As I have frequently written there are two kinds of pain: noiciceptive and neuropathic. Those of us with fibromyalgia suffer from the latter. It is the most difficult to live with as it is long term damage to the nervous system that has become chronic. It cannot be treated with opioids long term as it only gives temporary relief. Many find some degree of effectiveness with Gabapentin ( I do) or Pregabalin.

So many readers write of their pain challenges , often resorting to opioids which result in addictions. However, noiciceptive pain such as I had recently from a hip replacement does produce relief from such medications. Burns, operations, broken limbs, usually all of a temporary nature, are examples of this type of pain. But, I quickly found that my highly sensitive pain receptors as a result of sensitization of the Central Nervous System rebelled and did not tolerate the morphine I was prescribed after surgery. Nausea was the side effect I suffered with, resulting in switching quickly to Tylenol. The pain from the scar has ended. This was noiciceptive pain.

So, what are we to do with the other kind of pain? Neuropathic pain is complicated. Opioids are not the answer. While I keep advocating mild exercise as one form of self help, sometimes more strenuous activity is warranted. Many of us can hardly tolerate any excercise at all, mild or vigorous. Strenuous activity usually brings about fibro flare-ups ( I found this out with increasing activity/ stretching from following surgery in order to help with walking and avoiding limping). Now I am in a quandary as to how much to do without increasing my pain level. My brain keeps me travelling down that same old pain neural pathway. Training the brain is not an easy task, but there is little option. Mindfulness meditation, walking in spite of pain, exercise biking are my strategies and an understanding physiotherapist who tells me I expect too much of myself. I remind myself  that is the bane of our existence, all of us with this dis-ease called central sensitization (fibromyalgia)… we are too hard on ourselves.

I cannot overstate how complex daily living becomes for those of us with neuropathic pain. We have to be kind to ourselves and recognize that while this is a permanent condition, self compassion is key to our quality of life.image1

17 comments

  1. Pam says:

    I’ve had fibromyalgia for close to seven years. I have ways of managing it but this summer was terrible. My son was deployed to Qatar. We had a wedding for my youngest son. The heat bothered me. We had terrible financial struggles. Then I increased my exercise by using a stationary bike, which I love. But I did too much and am now feeling awful again. I was beginning to believe (unrealistically) that I could overcome this syndrome. I had the heart to overcome! I realize now that isn’t that easy. But I wanted to be rid of this pain and fatigue.

    Your article hits home with me. It is so hard to be patient with myself. I want to keep up with everyone in my family. I want a life! How do I come to terms with something that has taken away my health and energy? Even managing has become too difficult. I wish I could just get a hug or encouragement from someone who knows what I am feeling. Without a miracle from God, this disease isn’t going away, is it?

  2. Barbara Keddy
    Barbara Keddy says:

    Aw dear Pam: We can all relate to this frustration and angst you are experiencing. In fact, this very thing happened to me yesterday. I decided to do pool walking again since I cannot walk very far yet after my hip surgery. The pool was quiet now that school has started. I went to the one I frequented before the surgery, called a leisure pool. Did I do just 5 or 10 minutes for my first time in 11 weeks? No, of course not. I did 20 minutes. The week before I did 15 minutes on my exercise bike instead of gradually working up to that time. Pain and fatigue followed.
    I wish I knew what it is in our personalities that keeps us in denial about our abilities. We look so healthy which is why I call it an invisible dis- ease.
    Like you, I want to do normal things like preparing a meal without feeling drained of energy and being in pain for hours or days afterwards.
    The answer to your question is that it won’t go away and we have to learn how to manage our nervous system in a consistent way. The heat and humidity today is unbearable. My body aches from yesterday’s activity. We are expecting much company in the next two weeks. A big worry on my part. But, life goes on and knowing so many others face the same struggles does help.
    Hang in there, what choice do we have?
    Barbara

  3. Nancy says:

    “Pain is real when you get other people to believe in it”, Naomi Wolf

    That quote is what’s drawn me back to your blog, Barbara. I recently overheard my husband and friend talk about how fibromyalgia is just a garbage can diagnosis. I was so hurt! How do we get through to people that this is real??

  4. Barbara Keddy
    Barbara Keddy says:

    Yes fibro is a garbage can for those of us with it!!!! But, it is real enough. The can is filled with symptoms that take peculiar forms from day to day. let anyone who disbelieves walk in our shoes for a day! Maybe using the term ‘central sensitization’ would help dispel the idea that it is a meaningless term. I use it much more frequently now. Plus anyone who says disparaging words about the dis-ease only makes our lives even more challenging. We live with enough guilt and believing we are malingering and asking ourselves why can’t we pull ourselves together? I too am p….. o.. at your husband and friend! Take care of yourself and know you are not alone. Let him feel as though his nerve endings are on the outside of his body. It is a daily challenge!
    Barbara

  5. Megan says:

    I was diagnosed in 2013, but the symptoms have been there from the 1980s. When I was diagnosed it was such a relief as I thought I was going mad and my family thought (some still do) that I was attention seeking. I am in pain 24/7 even though I take gabapentin the edge is taken off but the pain and discomfort is still there. I have no social life, friends left years ago, I would often have to cancel outings on last minute due to fatigue etc. so the invitations stopped. I suffer from depression due to loneliness. I am married and my hubby does his best but he does get fed up with me.

  6. Barbara Keddy
    Barbara Keddy says:

    Dear Megan:
    I relate completely. It is especially difficult now that the seasons are changing. Our central nervous systems don’t do well with change. Avoiding many situations often require us to seem like we are social isolates but we pay a big price from over stimulation…too much noise, wind, cold, humidity, stress, social interactions, the list is endless. Our bodies require relaxation. It is indeed very difficult for spouses. They become exhausted and discouraged with our pain and fatigue, requiring them to be caregivers.
    Peace,
    Barbara

  7. Pam says:

    Megan, I so relate to you when it comes to the loneliness. Maybe it looks to others like we don’t want to be with them since we have to cancel events so offer due to pain and fatigue. Sometimes I wonder if I will always remain friendless because of not having the energy to put into meeting people. My husband is my best friend and that keeps me going. I think the goal should be for us to find a way to manage the syndrome. Then we try to meet and socialize on our terms. If we are suffering so much that we can’t get out much, then it is time to figure out a new course of action. Get help. The maybe you can move forward a bit in your life. But no guilt!

    I am having to revisit how I manage fibro just this summer, after having it for years. Things that once worked have stopped working. Time to find new ways. If you can get help to manage differently, you might be surprised how much better you can feel. Big hugs!

  8. Pam says:

    Barbara, thank you for your comments. I am realizing that I have to learn new ways to manage. Some of the old ways have stopped working. It was nice to post here because I was feeling really lonely. I know that people here understand.

    One new way of helping with pain and sleep is CBD. It is weed without the THC, in cream form. Living in CO, I can find it easily. It creates a small amount of relaxation, and eases the pain at night so I can sleep. Can’t get hooked on it. I voted against the legalization of pot. I still feel it should not be legal as a recreational drug. But the benefits to chronic pain by using CBD, the non THC form, is amazing.

  9. Pam says:

    Barbara, every change of season effects me but I forget! Isn’t that funny. “Hmmm…why am I feeling bad all of a sudden? Oh right, weather change!” I feel better in the cold weather and really hat the heat. It is different for others, who prefer the heat.

    I hope your hip is improving!

  10. Megan says:

    I can pinpoint every “trauma” that led me down this fibromyalgia journey. I was physically abused from the age of 7. My father ruled with an iron fist literally, and I suffered until I left to get married at the age of 21. At the age of 24 married and pregnant my then husband started to emotionally and physically abuse me, my daughter was born with a brain injury due to thusxabuse and had to undergo massive brain surgery at the age of 5 months old. The marriage ended with me being hospitalised due to my ex husband beating me so badly he nearly broke my neck. Unfortunately in those days early 80s all this was seen as a domestic so nothing was done to stop my ex. I am
    Now very happily married to a wonderful man who is amazing, but has in the last three years been on his own “journey” fighting cancer the latest being kidney cancer and is waiting fir surgery to remove the kidney. So as you can see, trauma has been with me all my life. But I am learning to live with fibromyalgia and not fight it.

  11. Barbara Keddy
    Barbara Keddy says:

    Oh, dear Megan: you ave had so many traumas in your life and they continue! It is little wonder you have fibromyalgia/ central sensitization/ PTSD…all the same thing, I believe.
    You are a strong woman and must continue to nourish yourself with that thought. Look at all you have survived!
    I wish your dear husband every best of wishes with his own struggles. The two of you are heroes/ heroines to be praised.
    Best wishes,
    Barbara

  12. Megan says:

    I find getting employers to understand the condition is the hardest. Despite fibromyalgia being a recognised disability in the UK they don’t want to recognise it and I find that I am
    Battling all the time. Just won a disputed with my employer because as a cost saving exercise printers were reduced and I was having to take an extra 1000 steps a day which, by Wednesday I was struggling and quite often was off sick Thurs and Friday, was summoned into HR and I decided to get my union involved and a printer was moved much nearer to my office and I’ve not had to take time off since. But it shouldn’t have got to that point in the first place.

  13. Ellen says:

    Dear all of you, I have been touched by your comments. So many things you have said resonate with me – the relentless nature of pain and fatigue, not being able to socialise, not being understood by those around us. I find each day an all consuming challenge, that somehow never seems to get any easier??

    Megan, your story really touched me, and the main thing it made me feel is that – you are such a strong woman. You continue to survive day by day, and well done for taking your employer to task – that must’ve been exhausting. But you did it!

    Sending gentle hugs to all of you – we must be as kind and compassionate to ourselves as we can be. Ellen

  14. Barbara Keddy
    Barbara Keddy says:

    The predisposition towards fibromyalgia and the other conditions that are invisible but similar occurs with people who are highly sensitive. For example, I had a very anxious mother so I often wonder if my anxiety was caused in utero or being raised by a parent who was also highly anxious and highly sensitive.The old debate between nature and nurture is a moot point at this stage of our awareness of fibro. The prerequisites for fibro are: highly sensitive, anxious, very intuitive, overly empathetic and then when a crisis or crises occur the central nervous system goes into flight mode and flare ups occur.
    Thanks for your question,
    Regards,
    Barbara

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