FND & Fibromyalgia

[Rysat]

I am a 74-year-old, reasonably fit man and live near Brighton. I was diagnosed with FND last week by Dr Khan at St Georges Hospital after many years of hospital tests revealing “no cause found”. I have had pain in many parts of my body for many years. After learning from Dr Khan about the medical use of words, organic and functional, I understand that FND symptoms are functional and very real for the patient, but there is no organic cause. I have 2 organic disorders amongst others, being sciatica and arthritis of the upper spine, both organic causes shown by MRI scan. It is very difficult to differentiate between organic pain and functional pain in my lower body. The feet pain is especially concerning for me. I was tested for metatarsalgia with no cause found. I had Doppler tests too. The pain can become very intense after walking just a couple of hundred yards, but at other times it can feel as though I am walking on pebbles with no shoes on. I get foot cramps without exercise. The feelings in my feet are as though they are not my feet. I have always put these symptoms down to sciatica, but they are too varied. My lower body is very weak, and I shuffle a lot, getting worse the further I walk. I trip upstairs and have a pronounced wobble which mimics a drunken walk. I have difficulty changing direction especially around the house and tend to topple forward. I am constantly bumping into door frames. As I am the sole carer for my wife with advanced Alzheimer’s, I find housework very difficult and frustrating. I cannot stand for too long doing the ironing before pain and a burning sensation in the ball of my feet cause me to sit down and let the stinging pass. My fatigue is likely to cause a serious fall if I am not careful.

It has never been suggested that I may have fibromyalgia but having seen the links between that and FND I am believing the two may be connected. I get relief from much of my pain and gait problems by performing short term intensive vibration and stretching exercises in the morning for ten minutes a day on my dual axis power plate. Unfortunately, the relief is also short lived with pain and weakness returning gradually during the day.

Contributing factors to my FND are double coronary artery bypass in 2013 and two periods of Atrial Fibrillation. The first AF episode was corrected with a cardioversion. The second AF episode was corrected by RF Ablation. I do not currently have AF and my resting heart rate is between the 60s and 70s.

I would to like to find other sufferers of similar symptoms so that we may share our own experiences in order to determine the best path to relief.

[Junebeatle]

You might find this article research helpful:

medscape.com/viewarticle/91...

It shows me their is a cause to our symptoms, science just isn’t there yet! I get the feet cramps too, almost like not actual cramping for me though-the sensation of it and my toes often move on their own without me doing it. I have bruises everywhere from bumping into things. Also fatigue and I’m only 41. I’ve had this disorder for 11 years and was functioning very well, until my symptoms took a terrible turn in 2018.

I’ve recovered somewhat with TMS (Transcranial magnetic stimulation), I do take Valium to sleep (because my body was shaking and muscles mis-firing waking me at 3am everynight for 7 months and I couldn’t function without sleep), and lastly I’m trying plant-based keto because it reduces glutamates. The diet is increasing energy a bit, I can work part-time, exercise more than I was, and do feel more clarity, but it’s only been 6 weeks. I want to give it more time before I report on here the relief I get.

I find fish oil/turmeric to help with pain..I use Nordic Naturals Omega CRP because it combines both. I still have pain on some days, but others not. I also take use Ultima electrolyte drinks 2 scoops/day in water and that seems to help my cramps.

You’re doing a fantastic job for the demands of caring for your wife while you suffer from this debilitating illness. Remember it’s ok to take breaks, do what you can when you can, try to be kind to yourself. This illness is a “new” normal none of us want to accept, but it is something we have to do to move forward. It’s a frustrating disorder, but just take it literally one day at a time..that’s how I manage it now. Some days I can bounce with my 3 boys at a bouncy place and have energy to do quite a bit, then the next day my muscles are a mess, need to rest, and the burning in my legs & arms is awful. Unpredictable! Keep us posted on progress & know we are always here for support!

[Junebeatle in reply to Junebeatle]

On a side note, I have had palpitations since 2012 & mild valve leaking (tricuspid & mitral) which never bothered me...when my FND kicked up in 2018 my PVC’s are 14 % of my heart rate & my mitral is now moderately leaking so they want to do an ablation. Just thought it interesting about the electrical system of the heart being off & FND for both of us.

Did you find the ablation helpful? As in more energy?