Turns out my neurologist thinks I have FND. I was upset at the very suggestion of this at first as there are health professionals who think it’s psychological but then my neurologist assured me that she does not think my many symptoms are psychological.
Snapshot of some of my symptoms: (I am age 48)
-Memory confusion ( hence referral to neurology)
-Sleep issues / insomnia/ restless legs
-Pins & needles on left side of face (cob web feeling)
-Extreme Fatigue
-Bone pain in arms & legs at times
-Weakness in left arm
-Blurry vision left eye
-Bowel issues / IBS
-Gastro issues / pains in stomach / coughing & phlegm when eating
-Bladder issues / urgency & frequency
-Lower back pain (feels like spine is gonna break at times)
-Speech at times sounds a little slurred
-Hair thinning
-Vitamin deficiencies / mild bile acid malabsorption
-Hormonal imbalances
I am under 4 hospitals & multiple consultants from Gastro / Gynae/ Adult Metabolic clinic /Neurology / Rheumatology / Endocrinology / Lymphedema Clinic … won’t mention my chronic ENT issues as not sure if connected to FND.
I have always suspected that all my symptoms are linked in some way! Was worried about Cancer.. or MS.. or a tumor.. even Dementia.. as I know something is very wrong in my body but all scans kept coming back unremarkable, and whilst this is a relief on the one hand I was thinking my consultants are gonna think I am making it up and discharge me!!
My body likes to grow things! I have had 4 fibroid ops and I have nodules everywhere! Pituitary/ thyroid / stomach / bowel. One scan picked up enlarged aortic lymph nodes but as sub centimeter they were not too concerned.
So that leaves FND! Not sure how I feel about it. It’s like having bowel issues and when they can’t find the cause you get the diagnosis IBS. I mean being told you can heal yourself with mindfulness and CBT interesting but not convinced yet! I will defo update with a post if I notice improvements!!
I found this useful link on FND I think all our GPs should read and familiarise themselves as for some: Functional = psychological, and I can’t and won’t be fobbed off when I am in daily pain and so fatigued on some days that I feel like I’m about to take my last breath!!!
Thanks Jo. I asked the neurologist if it could be Fibromyalgia and she didn’t rule it out but stated that FND is a much more helpful diagnoses as there are clinics set up for FND and much more resources?? I am not sure what she meant. This was at Kings and I am back in May for the full break down of the next steps.
Thanks so much Jo! It really helps getting this support as my mind is in conflict as to whether I accept this as a diagnosis or keep fighting! It’s been almost a 3-4 year journey of investigations to get to this point. It’s good to know about the Clinic at Guys and that you are under an FND professor at St George’s. That’s where my Lymphedema clinic is.
So just curious can you have both Fibromyalgia and FND?? If so, how would they reach that conclusion of the symptoms are almost the same. What sets them apart??
Welcome, wish it was under different circumstances, I don't think any of us feel like being part of this group with a diagnosis that even professionals find difficult to understand. That link was helpful, yes, I wish gp would have the time to read it. Brain fog makes it difficult to explain and of course if they are not in your shoes living with it 24/7 they don't understand. Cob webs! That explains why I'm always trying to move something off my face. I started my symptoms in 2017, finally after all tests diagnosed in 2019. They have ruled out therapy for me because of where we live and my circumstances. Regional Australia. I'm not as bad as some, but definitely finding it difficult to live a normal life. I did find a Parkinsons medication that has relieved some symptoms. I do hope that you are able to get help and understanding from at least your family and friends. Take care. Moni
Hi Moni, thanks for your reply it means a lot that you have taken the time to reply. I am glad to hear you finally got a diagnosis. Just curious about what other symptoms you have or are experiencing.
It’s great that you have found a medication that helps but I honestly wish there was more given the range and severity in some cases of the symptoms!
My ex thought I was lazy and given the years of feeling unwell I honestly think my friends have become board as there hasn’t been that lightbulb moment or a diagnosis bad enough for them to take it or me seriously. It’s not all of them but I do feel that they think I am a hyper - a person who makes stuff up. Sorry I can’t spell that word. One of my friends said she thinks I have a ‘health anxiety’ and I smiled through gritted teeth. 🙄
The cob web sensation initially started as me feeling like a spider had landed on me and I would panic and try and furiously wipe it off. My vision also made me feel like I was seeing things like something running across the floor that wasn’t there. In the end the GP and neurologist called it paresthesia as it literally was like things were crawling on me.
It’s now more like a pins & needles / numbness on the left side of my face, which increasingly feel is like tingling / a cob web that needs to be brushed off. It’s very strange. Of course I was worried about a potential stroke, and years ago they thought it could be Bells Palsy. So it’s fascinating to hear that FND is like an umbrella for all of these issues..
I am still treading with caution though. As don’t know what this means and how will my employers react.. I do feel it is progressively getting worse. Especially my memory.. I am having a repeat neuropsychology assessment in a couple of months. The last one I had was a couple of years ago. It’s like a 4 hour memory test!
I would love to hear more about how your symptoms present if you don’t mind sharing. Sorry I went on a little bit. It’s so good to have people to finally talk to about all this! x
I started with what I call crab walking, always going left, home bumping into walls, outside having to aim to the right to walk straight. I'm losing fine movement in my hands, like using a knife or tongs. My left side of body is numb pain, especially the leg., neurosurgeon said it's not related to spine. Then slow speech, now forgetting words and pointing or using next best thing, I'm fortunate to be an age when I can call friends darling. Spasmodic jerking is why I went on Parkinsons medication, both FND and Parkinsons low on dopamine, at least that's what I was told. What is not recognised is I feel my angina is linked, if I'm having a hard time with FND, my angina is worse. Very rarely sleep well, which does affect the heart. I spent 16 yrs in deep depression, off antidepressants for 3 years, since one neurologist said my FND was depression. I find it frustrating that I control my pain levels, but can't control my symptoms. I went to 2 pain management clinics 20 yrs apart to be able to do that, I've had chronic back pain from young age. Most ignore my symptoms, some say to be positive. I take about 24-27 meds a day depending on what I'm coping with. I'm one of those who try to cheer others up, keeps my focus off myself. It's just a matter of coping with today, one step at a time. I do hope you are able to cope until you receive some answers, if not acceptance. Take care. Moni
Wow Moni you are amazing to be helping others with all you are going through. You are an inspiration!! That is a lot of medication! Do you find having the diagnosis of FND helpful if you develop another symptom or one of your symptoms gets worse like your angina. Will they throughly investigate or put everything down to FND? It’s interesting that you also talk about symptoms on the left side. I did have a period of bumping into things a lot and I fell down once whilst sitting stationary on my bike with my feet on the ground. Do you feel like your symptoms are getting better or worse with time??
No more investigations, but I have requested a new perspective from another neurologist, I've seen 2. Gp doesn't think more tests will help, but is supportive, willing to help me get help around the home. Symptoms are getting worse, slowly. Most doctors I've seen are not bothered by diagnosis of FND. They approach each condition on its own, so not everything put down to FND. I do allow myself time out sometimes, but try to keep focus. I don't know if ever they will find out a solution. At the moment all focus on covid. Keep safe. Moni
I think it’s helpful to get another opinion at times as they hold another piece of the jigsaw! It’s reassuring to hear that each symptom is treated on its own merit and you don’t feel everything is put down to FND. I am sorry to hear that your symptoms are getting worse and maybe that new perspective you are seeking will have something hopeful to add! Best wishes for now! x
You have been through the revolving door of specialists - that’s for sure! My situation is quite similar to yours. It is good that you have a neurologist that understands FND.
In order to help my various specialists become familiar with the REAL FND, I put together a notebook divided into chapters. I have Diagnosis, all neurologist notes, clinical study summaries from around the world, my symptoms and onset, all diagnostic test results, scholarly articles, etc.
I leant this FND notebook to my PCP, physical therapist, and a couple others. After they had the notebook for a while, I would call or email the doctors. I would ask if they had comments or questions. It started a dialog.
I have found this site/group to be helpful. Not everything is useful to me but some is. The encouragement of others in the same situation is comforting.
I wish you well in coping with your FND challenges. Remember, you are not defined by your disorder. You are a whole and unique person! You have value and purpose.
Hi Henrietta, thanks so much for your encouraging message. It’s so kind of you! It is definitely great to have the support on this site! Your notebook sounds like a really good idea. I have been keeping a concertina folder with all my appointment & outcome letters under the various clinics as sometimes they forget what they have said or one hospital can’t read the others notes so I can refer to them! I am interested to hear what your symptoms were / are if you don’t mind sharing, and if you feel things have improved in terms of your symptoms / treatment?
Hi think of FND as the medical profession define it; as too many abnormal feedback signals from the body. If you have all these other sensory and physical issues going on, of course your brain is going to be overloaded with LOUD feedback signals.
Your body is trying to alert your brain that things are not within normal range, not that long term is unhelpful, because your brain cannot respond and prioritise everything at once!
It is a myth that people's brains can multi-task, they can't, the brain can only switch between circuits at different speeds. So yes, any chemical imbalance in the brain will upset this further.
FND is where the brain is overloaded and gets confused, using meditation for example is supposed to allow the brain to slowdown the signals to help sort and prioritise what is important, that is way Pacing physically, mentally and emotionally is so important with FND.
You probably have looked into this, but maybe a closer investigation of your diet might help reduce some of your symptoms, it is a simple avenue to try and often overlooked.
- Many years ago a lady was reviewed in a charity assisted housing complex because she was disabled, but not of normal intake age i.e too young. The Board of Trustees included a few medical doctors and they took it upon themselves to investigate why this younger lady was so disabled, when medical science had not defined the cause? Later down the line, they discovered she had a Severe Wheat Allergy which caused her to be so fatigued and uncoordinated that she was a wheelchair user. Took her off wheat and she recovered to normal life.
I love your response so much! Thanks for taking the time to respond! I really like the statement “look for the calm in the storm” and you have explained FND in a very simple and understandable way!
It’s interesting that you mentioned diet as I was also referred to the Dietics Team and they sent me the following information which might be useful for others on the Gut-Brain Axis:
Gut-Brain Axis
We discussed the multifactorial triggers that can contribute to gut symptoms. In addition to making dietary changes targeting the gut-brain axis has also been proven to help improve symptoms.
Aim to spend 10-15 minutes daily targeting the gut brain axis with mindfulness.
To improve sleep, try to set a before bed routine. Useful smartphone apps include Sleepio and Breathe
Explore including mindfulness into your daily routine
Trial mindful forms of exercise such as gut-directed flow yoga or Pilates. YouTube can provide many short videos.
Introduction to mindfulness
Mindfulness is a way of achieving a non-judgmental awareness of your thoughts, feelings and sensations. It aims to make you more aware of what you are experiencing, this allows you to respond in a considered way, rather than responding automatically. You may feel more relaxed when practicing mindfulness but this is not its aim. Sometimes it can feel uncomfortable to be aware of what you are experiencing.
Mindfulness resources
There are lots of electronic resources for supporting with mindfulness. Some examples include:
P.S in some medical circles Fibromyalgia is considered just another form of FND, all under the same Umbrella diagnosis.
And no, FND in my opinion does not have better funding (I had to get my GP to ask the regional Primary Care Group for special funding) or support especially compared to other Neuro Diseases like Parkinsons or Multiple Sclerosis, despite FND being just as commonly diagnosed.
Hi yes I did get the funding and went to Inpatient Multi-disciplinary FND Rehab, did all the Therapies offered. They really only focussed on Cognitive Behavioural Therapy, Neuro Physiotherapy and Occupational Therapy for me, but some other patients had Psychotherapy which involved more mindfulness I think?
I have biomechanical insufficiency from previous surgeries along with `unexplained Neuro Symptoms' and therefore was classed as `Complex' which I think gave me the edge for funding of the Inpatient treatments.
But you should know the upshot of all the Therapies did nothing to improve my condition. Only helped me recognise and adapt around the various triggers which make my Motor FND worse and how to self-manage my condition better on a daily basis.
I have long term Motor FND, so think of it as any muscle, tendon, ligament, joint or moveable structure in my body as not coordinating properly on a random pattern daily basis. My biggest problem is with my legs and walking or rather not coordinating enough to walk. What I learnt myself (from the internet, not from the Therapies) is that the Spine controls the automatic nervous system for basic walking like on the flat, the Brain circuits need to assist/override the Spine System when walking up steps, slopes, rough ground etc. So for me it was best to try and divert as much walking control through my Spine not my Brain by playing down and ignoring warning signals that might call for Brain assist - if that makes sense?
I also found Pacing the best all round FND advice, the Brain just needs more time for well, everything, to help sort those feedback nerve signals more efficiently. Mentally, Physically, Emotionally and spacing out tasks more at slower speeds. Most of all, not beating yourself up when goals were not achieved, simply moving the deadlines!
Sadly there is no cure, no magic pill, no actual tailored set of therapies out there - or at least made available to me?
Oh yes, and I found for me Acceptance and Committment Therapy the best, it works on Accept the thought that comes into your head good or bad, Commit to the thought momentarily/analyse it- and then move the mind on to other things!
Hiya thanks so much for responding and providing such helpful advice! It is great that you were offered the rehab and whilst it has not cured the condition that you can still take away things from it to help you in your day to day life! It’s so bizarre that my FND (yet to be formally confirmed / likely to be in April) came from what seemed to be nowhere. Just a gradual increase of symptoms! I have experienced some trauma in my life which was the initial working hypothesis but that was 12 years ago and these symptoms started cropping up around 2 / 3 years ago!! I will update once I know more. You take care of yourself xx
It is hard to receive a diagnosis that at the beginning does not make sense, for how could I be having all these symptoms and yet there is not a clear cause known. And yet, although that is what I originally thought, I have learned a lot, and look at it different.
FND, is occurring in the "software" of the brain, where the brain and the body are not communicating well, actually the connection between them is tangled up like the legs of a marionette puppet. (not literally a puppet, but that is one way it was explained to me that made sense)
My neurologist is dedicated to educating others about FND, and when I was in the hospital having my third EEG stay, she told me "this is real, this is not your fault, the managing of FND takes a journey, and I am on it with you, one step at a time." I always close my eyes and imagine her saying that to me, when I am twitching, dropping to the ground, having functional seizures, myoclonus jerks, etc. Though as she says to me, so many people in the medical field across the world still do not understand this condition.
Trauma is also a word that brings many of our minds right to abuse and neglect, which is true for some, though it also includes other things: TBI, loss of loved one, surgeries, high anxiety or depression and more...and with some like me...a number of things have built up over time...like uncontrollable epilepsy, TBI, anxiety, brain surgery. But EVERYONE is DIFFERENT, which is what makes FND hard to understand, for we have different symptoms, different reasons for cause, different needs for working on managing symptoms a little better, or for some a lot better.
I am at the end of an FND program which focuses on mindfulness, and how being in the present moment and focusing on what is happening around us sensory wise, refocuses our brain on sometime else. As many have said, it involves reprogramming the brain to process and handle things better. FND brought on things that were never an issue for me, fear of crowds, over visual and auditory stimulated, not able to work right now, etc. But I am not losing hope that I will find ways to live with FND better.
The FND Hope Facebook groups have been a life saver for me as well. I have an amazing medical team, but being able to talk to peers who are experiencing FND first hand as we are, it really helps. It really does. Take care!
Hiya Obrien I really appreciate your post and it sounds like you have an amazing neurologist who really cares! My consultant has been great too and very sensitive & understanding. She is referring me to have a deeper assessment with another neurologist & has suggested I also attend some online seminars to learn more about the condition. I am worried about whether to declare this condition in terms of my work but worried I won’t get another job as they won’t understand the condition! It’s so bizarre that it appeared to come from nowhere and yet so many physical & cognitive symptoms. I like mindfulness but feel that I need some practical strategies for other symptoms. Wishing you well! It was good to hear from you x
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