Fibromyalgia: Leg/Foot Pain-Neuropathy?

“What you resist, persists”, C.G.Yung

I have brought on another pain attack- again! I have overdone it with social situations that have caused anxiety and resulted in overstimulation! This time the pain in my left foot is excruciating. The reason? I wore something other than the sneakers that are my daily companions. No, I did not wear high heels, but nonetheless they were not my regular footwear. There are many times I think I have to wear something on my feet that are a bit more dressy. Yet, I am now known to wear funky sneakers to most places, so why do I conform and wear ‘regular’ shoes when I know my body will rebel? Given that my muscles (like all of us with fibromyalgia) have become weakened over the years because of my inability to sustain regular exercise, I have found that supportive shoes are the best answer to stability. For that reason I have recently chosen to brighten my days with coloured sneakers that bring a smile to most people. But, without them my legs and feet are painful.

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I recently tried to describe my pain to a health professional but found I did not have the language or the energy to express how I lived day-to-day with something that is invisible to the eye yet affects my quality of life. Chronic pain has a life of its own. It is powerful, unceasing, and challenging. Doing something unusual like changing shoes, can bring on a flare-up that lasts for days. The changes in my muscles as they react to change elicits a response that is painful, I become afraid of the pain because it is associated with shoes that are unusual. And so, the cycle continues. My central nervous system signals the brain that there is danger and a threat is perceived. I have begun thinking that wearing all shoes, except the sneakers, is anxiety provoking and painful. Therefore I have foot and leg pain, particularly at night after wearing ‘dress shoes’. Perhaps it is because I have polyneuropathy?

Specialized  nerve endings, called “nociceptors” (pain receptors) respond to potentially damaging stimuli by sending signals to the spinal cord and brain. This causes the perception of pain. Chronic pain, which is the plague of those of us who suffer from fibromyalgia, is caused by the rewiring of the nervous system and is called central sensitization. It is a learning process that is generating chronic pain. This habituated thinking pattern of mine requires that I look at this sensation of pain and what is happening to my mind. It is important that I explore and face mindfully this central sensitization through exploring how the amygdala is always ready to give a signal to flee to that which is not even a potential threat. As I have learned in mindful meditation, it is important to live with the pain rather than fight against it. Change, even in shoes, is difficult for me. The amygdala is quick to try to avoid and escape from what is perceived to be a threat. The more I resist, the more the fear persists.

The pains that I experience in the legs are akin to  peripheral neuropathy, that is, damage to the body’s peripheral nervous system. It causes muscle weakness and pain. The more that I experience fear then accompanied with it is the leg pain. While neuropathy is common in such conditions as diabetes people with fibromyalgia experience the same symptoms, which are pain, tingling, pins and needles, and weakness. I have these symptoms in both legs and arms as well as sharp shooting pains often in back and shoulders. Unlike the diabetic however, the pains are not constant in fibromyalgia as they are in diabetes. I have to confess that Gabapentin does help. Unfortunately the side effects of weight gain and groggy head are very frustrating. There is evidence that people with FM have small-fiber polyneuropathy, but the evidence is inconclusive at this stage of research. There is still much to be learned.

HOWEVER, ONCE AGAIN WE ARE FOCUSSING ON SYMPTOMS OF AN ALREADY COMPROMISED CENTRAL NERVOUS SYSTEM RATHER THAN ASKING OURSELVES THE MOST IMPORTANT QUESTION: WHAT HAS PRECIPITATED THIS FEARUL/ANXIOUS PERSON IN THE FIRST PLACE? My theory is that we have experienced trauma from either an early age or in utero,or later in life, we are already a highly sensitive person (HSP) and  subsequently our CNS is generally always in a state of hyper-arousal similar to those who suffer from Post Traumatic Stress Disorder. Sexual or emotional abuse, surgery, accidents, war, loss of a parent- the list is endless regarding how a HSP experiences and lives with trauma. Furthermore, triggers or flashbacks bring on flare-ups.

There are many who believe that by reducing the fear/anxiety rather than addressing the pain is the answer. But, if one has lived with severe chronic pain for most of her adult life, changing the brain is not an easy task. To add to my anxiety my body is now chronically unconditioned. I don’t move in a way that brings about good balance and posture. Muscles have atrophied and are weakened. I need frequent massages, physiotherapy and chiropractic adjustments. Maybe then I can hold up the Leaning Tower of Pisa in Italy once more (note the sneakers I had on!) These pictures are difficult to watch when I am in so much pain. The question always arises: will I ever walk in comfort again as I did just  few short years ago?

 

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18 comments

  1. Lois Roelofs says:

    Barbara, I get it. The overdoing, wearing other than tennis shoes, and then paying for it. I served at a church dinner on Christmas, wearing well-fitted stylish high boots, yet my whole body thrummed with pain for hours afterward. I’m so happy I don’t have to go to work anymore. Think of those miles of hospital hallways we probably each raced down in our younger days! No more–that’s for sure! Lois

  2. Barbara Keddy
    Barbara Keddy says:

    Hi Lois:
    If only we had known then how our bodies were going to suffer we could have taught ourselves how to protect our legs and feet!
    Without being able to walk steadily and comfortably so much of our independence is compromised!
    Good to hear from you again!
    Take care,
    Barbara

  3. Deidre says:

    I have started occupational therapy with a therapist that specializes in Sensory Integration Disorder. I am listening to CDs that are made to help regulate and normalize how the brain processes sensory information. Its helping a lot. Ive been going for 3 months every week. I have more than pain with the fibro, I am sensitive to noises,smells,touch as well. This as well as the pain has lessened greatly. Fibro is a central sensitivity so occupational therapy is needed to stabilize the imbalance.,

  4. Barbara Keddy
    Barbara Keddy says:

    Dear Deidre:
    Thank you for this valuable information. Like you, we with fibromyalgia have sensitivity to noise, smells and touch as well as pain. It is as though our whole world is highly tuned with a radio at full blast. That is because we are highly sensitive persons. There are many others as well as occupational therapists who are also trained to work with central sensitivity, such as physiotherapists and massage therapists. It isn’t always easy to find the right professional for us but there is much we can do ourselves, such as listening to cds and practicing other mind training techniques, such as meditation.
    Very best wishes to you,
    Barbara

  5. Marg says:

    Hello,
    I am 38yrs old and have been visiting osteopaths/chiropractors/massage therapists for many years trying to resolve the pain in my upper legs (feels like they are on fire and to touch they are numb & tingle like pins & needles). I also acknowledge we are our own best healers, & so I take time out to meditate and stretch each morning. (Stretching relieves the symptoms but unfortunately it is not the cure). I also admit I do not exercise as often as I probably should.
    I really can’t pin point the when, how, or why I have numb tingly upper legs. I just know that its been ongoing for the last 10+ years. My preference for shoes are my sneakers or shoes with a cushioned sole. I fret at the thought of wearing a high heel or flat shoe/sandal with a hard type surface/sole. (Such a shame because there are so many pretty heels out there!)
    Thank you for this post, I may have finally found an answer? Will approach my GP about Fibromyalgia as soon as I return home from my holiday. Regards Marg 😉

  6. Barbara Keddy
    Barbara Keddy says:

    Hello Marg:
    I can relate to everything you say. Thank you so much for your comments. I too have been visiting chiropractors, massage therapists, physiotherapists, osteopaths for many years. Any kind of body work has helped to keep me mobile. I believe that it is because we have such weakened muscles that we have had such difficulties with our legs. Currently I am having hip pain and it has impeded my walking and sleeping. I had tried coming off Gabapentin but now back on it for the nerve pains. It is always a juggling act and very frustrating. I doubt there is a symptom I have not experienced! This one involving the legs is among the worse! Keep in touch. I appreciate your comments.
    Barbara

  7. Melinda says:

    Thank You first of all for posting about the shoe issue.I was curious to know if you have a particular brand of tennis shoe you are able to wear? I have paid $150-$155 twice now in the last few months trying to find a tennis shoe I can wear ALL day without ending up in pain.

  8. Barbara Keddy
    Barbara Keddy says:

    Hi Melinda:
    Shoes! The curse of all women. We wear shoes that are bad for our feet, backs and bladders with crazy heels that fashion designers make us believe are beautiful while harming our bodies! Makes me furious to see young women wear them and know they will suffer later in life. As for what brand of shoe to wear I have found that trying on a pair and then sticking with it while the feet get used to that shoe style is the best. Going from brand to brand without giving the foot a chance to adapt is so much worse for people with fibromyalgia who need consistency with balance because of weak muscles. A shoe that allows you to place your complete fist into the heel is the type we need. Try doing that before buying! Some love Nike, others Saucony, whatever fits you best and is not too heavy but does have good support. Some are too heavy for my weak muscles, but definitely a walking shoe. I used to be a runner then a fast walker. This past year, since March, when I hurt my hip on the treadmill I have had nothing but bad hips, herniated L4/5 disk and have to wear sneakers even in the house. I am hoping for better luck with healing and a good walking regime in 2015. Good luck with your new shoes!
    Barbara

  9. Helen Lu Dunbar says:

    It felt reassuring to read that someone else felt as though their feet and legs were on fire….I keep wondering if I’m nuts as it is so difficult to explain the pain I feel even to my doctor. I live in Alberta
    Canada and we have many Chinooks or blasts of warm winds coming down the eastern slopes of the Rockies and a subsequent drop in barometric pressure. This bring on another bout of the pain cycle. I have suffered with this since my mid thirties and am now eighty.

  10. Barbara Keddy
    Barbara Keddy says:

    Thanks for your comments Helen. We have had the most harsh winter in Nova Scotia that I can hardly remember one as bad! The leg pains have been horrific. You didn’t mention if you have fibromyalgia? The barometric pressure drops cause such a flare up for most of us with fibro! Please continue to keep in touch,
    Regards,
    Barbara

  11. Helen Lu Dunbar says:

    Yes, I do have fibromyalgia since I was in my mid thirties and I am eighty now….Our winter was fairly mild with a lot of Chinooks so the pain seemed to be constantly there. followed the news and your weather seemed to be horrific.

  12. Barbara Keddy
    Barbara Keddy says:

    I would love for you to write your story on the blog of personal stories. I am interested in when you were diagnosed and your view on when it began, if you are highly sensitive, a life long care giver, highly empathetic? When do YOU think it all began for you?
    B.

  13. Carrie Walker says:

    I have been diagnosed with Fibromayalgia and need advice on how to deal with the joint pain and muscle stiffness while still trying to maintain somewhat of a normal life. I am working full time and taking college classes as well. Wondering if stress seems to cause worsened symptoms for others, or is it just my imagination? I’m studying to become a nurse and don’t want to give up on my dream because of Fibromyalgia.. However, I’m constantly tired and it’s now interfering with my job too. Please help with advice!!

  14. Barbara Keddy
    Barbara Keddy says:

    Dear Carrie:
    Oh the life of a nurse is so difficult particularly if you are dealing with chronic pain and especially in your legs. Yes, flare ups are caused by stress, over tired, not taking care of yourself. You must slow down. Find a gentle relaxation therapy which will help you live life more gently. Chronic pain and fatigue are a bad combination for someone like you. Try thinking of other dreams that will keep you fulfilled while not overdoing it. There is a great saying for people with fibro: “Do-Rest- Do “, that is do something you need to do or like doing , then rest, then do again.
    Take care of yourself!
    Barbara

  15. Patty Brown says:

    Wow, your understanding of Fibromyalgia and the comments have made me feel part of a family. I was diagnosed 36 yrs ago and boy are the Dr. comments coming true. I was an Emergency Med tech on first response calls for yrs prior, with terrible traumas to manage in the field. The on top of that my only brother died in his house fire as I waited to administer aid which was not to be. Managed hotel and restaurant front and back with much job stress and many tough yrs raising my boys through teen yrs etc etc. Double open heart surgeries for my Mom and Dad slowly dying from bone cancer. Sounds like a piece of cake , Yes !!? Its no wonder. Now I have all the neuropathy and pain you describe daily and also had 2 knees replaced. Oh yes, I rode and trained western show horses(very demanding) but it was my love and de-stressor.. Gardening and walks are in short spurts, swimming is mostly great as non-weight bearing exercise. I know when to quit any activity, how to deal with stress and what helps in meds/clothing/shoes. Drafts cold or warm are not tollerated and when I am tired I nap easily. Some days are brutal and I know what I did to trigger it. Also I find I cannot drink alcoholic beverages or consume salty items only in limited amts ias they exacerbate the conditions. Now I am 66 and I live with it not against it. I must watch my foods and try not to gain with over eating as I am not near as active. OOHH well, the Cymbalta helps for years and of ibuprofen not to over used. I am doing well and love my life even through the tough parts and aging. Love to get your book. Keep on keepin on !

  16. Barbara Keddy
    Barbara Keddy says:

    Dear Patty:
    I loved reading your story. It mimics mine particularly the implications about aging. It doesn’t get better, just more challenging. I am facing a hip replacement June 23rd and while not happy about it nonetheless I know it will help my mobility. Currently I am pool walking and have found many interesting women to speak with and it doesn’t hurt to walk in (not on) water!
    Like you I know what triggers flare ups and no doubt the surgery will bring one on but that is the challenges I will have to face. Do keep in touch,
    Regards,
    Barbara

  17. Patty Brown says:

    Good luck with the hip because we must do this along the way. Even with pain, nd lots of ice, do longer segments of therapy and it will be even better.

    Grit your teeth and do get in and out of a jaccuzzi often later on. mmmmmmm

  18. Barbara Keddy
    Barbara Keddy says:

    Yes, Patty it will be a long haul trying to contend with the fibro and pain from the surgery but I intend to work hard through it all! Thanks for the tips!
    Barbara

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