Severe Leg Pain? This May be Why

Discussion in 'ME/CFS and FM News' started by Kathy Bungard, May 1, 2019.

  1. Kathy Bungard

    Kathy Bungard Member

    In the past year of my 38 years with FM/ME/CFS I have had increasingly frequent and increasingly severe pain that grows worse when I'm sleeping and wakes me up in what I'd call 'savage' pain during the night. Being used to living with an illness - or constellation of illnesses - that constantly goes through cycles of strange symptoms this was relatively new to the mix.

    The pain begins behind my knee, and while it is mostly my right leg the left can join in at times. The pain grows till it goes from my hip to my foot and nothing much had helped it, till now.

    I have some searches set up so that mentions of any research on FM or ME/CFS come to my inbox and many of them are yawners but this one was a heaven sent blessing and the information in it not only explained what is causing the leg pain, but even a possible treatment for it.

    In the most recent edition of the Journal of Neuroinflammation, there is THIS ARTICLE about a study done by a group of researchers in Japan about what may be going on with chronic pain in CFS

    They used rat models that had a condition induced that was as close as possible to having CFS - poor rats! - and testing using measurements of microglia activation and other markers after stress they were able to produce some very interesting photos and data that shows how the large leg muscle called the Soleus is very affected by the hyperactivation of inflammatory markers from areas of the spine through the Soleus and causing the resulting pain. Which by the way WORSENED DURING THE NIGHT.

    I've attached an upload of the article pdf, and I'll quote their conclusion - 'In conclusion, the present study revealed that CS activates the neuronal pathway along the proprioceptor-mediated spinal reflex arc and that overactivation of this arc activates microglia along the arc. Such proprioceptor-induced microglial activation may play a key role in the initiation and maintenance of abnormal pain in patients with CFS and FMS, .....'

    This study was different in that they tried a means to alter the microglia production and transmittal to the Soleus. They used arthrodesis on the rat's ankle so the ankle was completely rigid and after recovery and retesting they found that the pain was either greatly reduced or entirely gone.

    Being frantic with the ever increasing pain I figured it was worth a try and I got some different ankle braces to try and find the most supportive ones and have found to my utter joy that it works! Now I am trying to find one that doesn't rub my skin as much as this one does, and to give my skin a break last night I did not wear the brace to bed. Big mistake, pain back and just as severe. At least I know how to escape this one particular pain - one of many - that FM/ME/CFS can bring.

    If you are suffering similarly I hope it helps you as well.

    Attached Files:

    Merida, Not dead yet! and Merry like this.
  2. Not dead yet!

    Not dead yet! Well-Known Member

    I'm going to try this. Thank you so much!
  3. Merida

    Merida Well-Known Member

    @Kathy Bungard
    Just an educated opinion here - from my own experience. I am not a doctor and am not giving medical advice. A sacrum ( the middle bone in the back of the pelvis) can cause pain like this. My right leg pain was so bad ( especially at night after lying down) that it felt like my whole leg was vibrating with pain. It was a firm of sciatica. This nerve can be pinched in the lower back or in the hip/ sacral area. The entire freakin spinal cord is attached to the sacrum via the filum terminale, which is non nerve tissue that connects the end of the cord ( at about L1) to the sacrum at S2. The filum fuses with the dura( which lines the entire CNS) at S2. Then , this non nerve tissue attaches to the lining of the bones of the tailbone.

    Plus, the end of the spinal cord branches into many nerves ( cauda equina) that go thru little holes in the sAcrum to the bladder, uterus, bowel, and legs. Bottom line : the sacrum has big nerves running through it and around it. And NO ONE talks about how important this is, and how much misery a torqued , misaligned sacrum can cause.

    Here are risks for sacral problems : Scoliosis, pregnancy, fall on tailbone, kicking soccer balls, hitting the brakes hard, ballet, Ehlers Danlos hypermobility.
    And once the sacrum goes out, the upper neck will shift too. The expert on all of this mess is Jerry Hesch, doctorate of physical therapy. Look at his videos. Big hugs. This is important stuff.