Hi, I’m new here and freshly diagnosed with FND. Been suffering for 13 months following a lung infection and antibiotic treatment with biaxin/clarithromyacin. I’m 47 year old married man, father of four kids. Worked as a healthcare giver for 15 years before having to stop due to this condition. Had no prior history of physical or mental health problems
History; Whole family was ill in dec 2018 with respiratory illness. Youngest daughter developed ear infection and was hallucinating with high fever. She eventually got better but my illness developed into lung infection causing breathing difficulty and rapid heart beat / palpitations with high fever. Went to emerg and prescribed Biaxin, 10 doses oral. After two doses metallic taste in mouth starts and insomnia. Lung clears. I start back at work but feel pretty awful. Heart racing. After 8 doses can’t take antibiotic any longer and stop taking. Feel poisoned. Loss of appetite. Work up until March when hit with brain zaps and racing heart palpations while assisting a client on shift. Head back to emerg, put on beta blocker and released. Break out in rash all over torso, raging tinnitus, anxiety, insomnia, tremors. Many trips to dr and emerg. Told I have anxiety disorder. Try long list of prescribed pain meds and antidepressants. Nothing works. Start getting flush attacks of pins and needles several times a day. Feel like personality changes a lot. Major vision loss and disturbances. Become increasingly emotional. Over time flushes become more often until settling in to full time chronic burning pain over 90% of body. 60+lb weight loss. Dec 2019 diagnosed with central pain syndrome. Disagree with diagnosis keep pursuing neurological answers. Finally referred to local neuropsychiatrist and diagnosed with FND. Now waiting for sessions to start this month. Living now with all symptoms chronic, as well as weakness, gait instability, major muscle loss. The worst being the constant burning pain which feels deeper into skeletal structure, fishbowl vision, constant anxiety and insomnia. Also tried naturopathic approach which got me nowhere. Had CTs MRIs blood tests galore but nothing much ever shows other than high cortisol which the dr brushed aside as nothing. I still think could be autoimmune issue? Desperate for any advice or answers on reclaiming my once healthy and happy life. Thanks for reading
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Lotus72
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Forgot to mention the chronic intracranial pressure which works hand in hand with the fish bowl vision...leading to dissociative sensation. It’s a cruel reality compared to the old strong happy me. Want to be the best dad I can be. This is unacceptable
...and the sensitivity to sound and light. Especially light in the morning which is so hard to take in. Increases the burning pain and head pressure. It’s all so overwhelming
Lotus72 - that all sounds ghastly, I really feel for you. I'm unclear about the current criteria for an 'fnd' diagnosis but I do know that some neuropsychs hand out this diagnosis on autopilot without checking the symptoms against the criteria or considering what other body systems might be involved (including the neuro part of their job). In the UK they are 'self-made' which sounds a bit dodgy to me.
Have you had a thorough discussion with anyone regarding if any of the medications you've been given could have had side effects? Have you talked to anyone about IIH (ideopathic inter cranial hypertension) and/or migraine?
I have a condition that causes light sensitivity so even though our causes may not be the same my favourite life hack is shades or vista mesh glasses. They help in places with fake lighting too, like supermarkets etc. I also have sound sensitivity and headphones playing binaural beats can help with that and they can be beneficial for people with anxiety, insomnia etc. Please check with your primary care doc before trying either of these life hacks.
I think when you have a diagnosis of a core psychiatric disorder (IE 'fnd') it can be easy to think that it's all in your head and there's nothing you can do about it but I'd certainly try for a few more opinions from doctors (especially re the hypertension).
Ironically enough this neuropsych dr was trained in the uk. Thanks for the hack ideas. I do wear shades at times when it’s really intense, which helps slightly at times. Unfortunately with the tinnitus I’m unable to put anything in my ears as the tinnitus rings above any sound once the ear is blocked by anything (eg. Headphones, earbuds, can’t lay flat on pillow on left side).
I’ll be pushing for research into a possible autoimmune condition. It’s my life and I’m not taking any drs “expertise” as the almighty word, that’s for sure. Medical becomes increasingly difficult to navigate when one is so suppressed by health issues. The weaker you get, the more they try to tag and paste you off as something to get you out of the way. I do have to say that the FND dr. Seemed more compassionate than all the others. His wall is full of diplomas. Hopefully with all that training he’ll be able to realize if his diagnosis is incorrect and point me in the right direction. In the meantime I’ll be pushing my gp for the AA test.
Yeah, they win us over with their compassion and their qualifications. But if they have a specialism bias, I'm outta there
Tinnitus is horrible but some people who are researching motion sickness stumbled across a potential treatment recently so there is hope. I'd get in touch with the otolithlabs people and see if you can get into their trials
I’ve sat in front a ton of drs since this started and I can honestly that not one of them knew anything about what’s going on with me. In fact, I know more undoubtedly.
Took me over a year to get in front of the neuropsych fnd dr. Like I say, I’m not putting all my eggs in that basket but I am going to give his approach a try. It’s all I have, otherwise I’m on my own and that’s not working either. I am pushing to see a rheumatologist as well in the meantime.
Thanks I looked up the otolith labs research. I’ll do some digging into that. If that was solved I’m almost certain the pain would be solved as well. My symptoms are all interconnected, of that I’m almost certain.
I agree with 210272. I would also like to add that I had symptoms very similar to all of yours when I first became sick. It all happened so fast with so many different symptoms that it was overwhelming. Last month I was diagnosed with FND by a neurologist. Just this past Monday saw a new doctor who actually took the time to read ALL my blood work over the past 2 years, onset of symptoms, current symptoms and past medical history, She said all of my test and symptoms confirm an autoimmune disease, not FND. I think what helped was that I told her of having had mono when I was a kid. Epstein-Barr Virus, which causes mono has a bad reputation for mutating into Lupus later on in life. I highly recommend that you have an ANA plus panel run as well as talk to a rheumatologist. Medications and/or illnesses can often trigger an autoimmune response that does not turn off like it is suppose to. Instead of attacking foreign microbes, your immune system can turn on you and start attacking your own body. It's important to get the right diagnosis right from the start so you can receive the right treatment and get back to living your life the way you want too. Best of luck to you Lotus72.
I agree that it is potentially autoimmune and cns lupus looks like a possibility. I am talking to my gp today and will be pushing for the antinuclear antibody panel. The neuropsych dr who diagnosed me with FND says he doubts that it’s autoimmune but I disagree, as food/digestion plays a huge role in exacerbating symptoms. I believe the blood brain barrier has been compromised.
You say you HAD symptoms like mine? You don’t anymore? What was your treatment after discovering it was autoimmune? Medications or other? Has any thing gotten better? Any info is greatly appreciated as I’m feeling adrift with the FND diagnosis and continuing to rapidly decline.
Hi again Lotus72. My treatment began before I found out it was autoimmune. I started treating the inflammation in my body with exercise, anti-inflammatory foods and anti-inflammatory herbs and all my symptoms started to change and improve. In one month I went from having serious cognition problems, muscle spasms, speech issues and falling down daily, to feeling fantastic. Currently I have no cognition issues, no muscle spasms, balance or speech problems. I still have weakness from 2 years of on again/off again disability, but I feel great. Even my fatigue is gone.
About a week after I started this new protocol I found a new Dr. and gave her ALL my medical records: past blood work including my full ANA 12 Plus Panel, onset of symptoms and currant symptoms list, Dr. reports and my new findings of inflammation. All this, plus a through medical exam, helped her greatly in diagnosing autoimmunity. Currently she has narrowed it down to a few specific conditions, but to get as clear a picture as possible, I am also undergoing more tests specific for autoimmune disease, so she can pinpoint the exact one.
I hope this helps. If you find out that yours is autoimmune, please let us know. In my view, Dr's know a bit more about autoimmunity then they do about FND right now. Hopefully a diagnosis of autoimmunity will expand your treatment options. Good luck.
Thanks yes that’s helpful and happy to hear of you regaining your health. A few more questions if you don’t mind
So I asked my dr to run an ANA test which he did and is now pending. Is there a difference with an ANA12 panel, is it more extensive? I have to spell everything out for him as he won’t ever offer a thing if I don’t think of it. Also, I’ve dropped gluten, sugar and nightshades from my diet, what changes have you made that have helped reduce inflammation? What foods are helping? What herbs are you finding helpful? I’d also be very grateful to know what other autoimmune tests you’ll be having run. Thanks again so much
Hi again, so my lab Nuclear Ab titre just came back red flagged as 1:80 on a 1:80 titre scale. Do you know what this means? There’s a note from lab referring to drug induced lupus rheumatic and a bunch of medical mumbo jumbo that I don’t understand. Called my gps office and was told dr would get back to me in next couple weeks. Infuriating! I had a hunch FND was just labeled on me. Any tips on what I should do next? Thank you
Lotus 72....I have similar symptoms to you. It started in July last year. I had abdominal pain and change in bowel habit. I went to my GP who referred me for ultrasound and to gastroenterologist. Within 2 weeks of seeing the GP I lost my appetite, dropped a few pounds and my arms and legs became thinner. I was anxious about cancer. I had a colonoscopy and full blood work which was all normal. I had an endescopy which diagnosed a hiatal hernia. In October I began thinking I had a neurological disease. I feel I have had muscle loss particularly in arms hands legs and feet. Where is your muscle loss? I am extremely sensitive to light in the morning. I have pressure in my head and cannot focus. I have pushed on through work until 2 weeks ago. I am now off on the sick. Additionally I am having odd pains and sensations in arms and legs and feel resistance at times. My mouth feels tingly/ numb. This fluctuates in severity. I feel like something is in the back of my throat. I saw the consultant neurologist at the end of November past and had a review on Friday past and he has signed me off neurology. I am being told this is psychological. I was told I have to believe my neurological review and I really tried but it's so difficult as I have all the physical symptoms and I feel this is the beginning of the end. I have a young family and am emotional daily. I'm seeing a consultant pychologist on Tuesday.
I’m so sorry to hear you’re struggling too and with a young family as well.
My muscle loss has been everywhere. I was a big solid guy and have been reduced to a skeleton. I have most definitely lost bone density in my arms, legs, hands and feet and my skull has strange indentations. Although my lazy gp doesn’t feel the need for bone density testing.
It sounds to me like your condition is neurological as well. They also tried to pin the psychological tag on me initially as well and put me on citalopram which causes vicious seizures. Then I told them about the seizures and they said it was because I wasn’t taking enough. I stopped the medication and seeing that psychiatrist as well.
I’m almost certain my issues are autoimmune and will be pushing my gp to do an AA panel again as he didn’t feel necessary last time I asked. You could try going to a walk in clinic and try to get a referral though there for a neurologist or neuropsychiatric dr.. and also ask for an antinuclear antibody panel. It’s a blood test as far as I can understand so really shouldn’t be an issue.
I’ve come to understand that with these conditions, our medical system is about as evolved as they were in 1850. They just want to brand you quickly and move you along. I had zero issues with mental health before all this. It’s so hard to fight something this harsh and have to advocate and negotiate through a sea of misunderstanding and ignorance in our healthcare systems. I wish you all the best and hope for lighter days ahead for both of us and our families. Hugs
I was also told I had FND after a brief workup for paralysis attacks. Turns out I have a rare genetic disease as well as an autoimmune disorder. Any of those things can wreck havoc with your brain and body.
Definitely does not mean you are thinking up your symptoms!
It is so hard looking for a diagnosis when you are sick, and it all comes down to the skill/knowledge of your doctor/specialist. I have literally had to research my own illnesses and then research doctors who had good reviews and who knew about what I had to get it all worked out. And I am still working things out as I go.
But don’t give up. A Rheumatologist is a good start. You could also ask your doc to test c3 and c4 complement levels. They are both usually reduced in lupus.
I really appreciate that info. Sorry to hear of your own struggle and suffering. How long have you had this illness? It’s been 14 months for me and I’m rapidly declining now. I feel as though it will take me this year but I’m continuing to fight. I was told by my neuropsych dr that FND is not an umbrella term but an accurate diagnosis. I disagree. To me it’s an “all your tests were good enough so we’ll put you in this column” diagnosis. This illness absolutely has neuropsychiatric components but I know very well that it’s more complex than that. I also base drs/specialists on their ratings but am unfortunately bound by who my gp will refer me to, often nobody any good. Are c3 and c4 compliment levels blood tests? I’ll definitely ask for that! If I don’t ask, my dr offers nothing. I’m positive that my illness is autoimmune as well. My titre test came back red flagged at 1:80. Now my gp and neuro drs are saying it’s pointing toward autoimmune but not taking much action other than that rheumi referral. Have you found anything especially helpful in fending off symptoms, meds, diet, lifestyle? Thank you very much for your help.
Hi. Yes, testing complement levels is a blood test.
I am sorry to hear of your struggle 😕
I have had things going on for a few years but mostly mild and vague symptoms which I just brushed off such as swollen glands and bouts of fatigue. I kept thinking I had a virus or was run down. Then I started getting joint pains. Dismissed that too. But something was obviously very wrong when I got paralysed one day.
Although the paralysis and autoimmune stuff is two separate issues, I do think the one thing triggers the other if that makes sense.
Anyhow, I was taking plaquenil for a while but didn’t know I have a heart problem called Long QT so now I can’t take the plaquenil anymore. I take another medication for the paralysis attacks and that has worked fantastically.
I am not sure what diet is best. Quite frankly when I feel as sick as a dog, it’s hard to keep balance but I generally try eating less gluten and carbs and have regular small healthy meals/snacks.
As far as lifestyle goes, I absolutely love exercise but have had to learn the hard way that my body just doesn’t tolerate it much anymore 😕. I rest when I need to and do more when I feel good. It goes against all the principles of pacing, but I find if I’m sick and try push myself, I am just worse. I know some people will shake their heads and think I’m doing it all wrong, but I can literally get paralysis if I overdo it so I will be the judge of how much is too much. Lol.
As an endnote, I just want to add that if other people find success with CBT and other treatments, then I am really truly happy for them. Anything that helps is a step forward and a positive attitude goes a long way in facing the challenges of chronic illness.
Hope this helps and you are able to find some answers and treatment soon.
There is hope. My daughter is overcoming her FND at the Mayo Clinic. They can help you retrain your brain and pain receptors to quiet the pain. Read my post for more info. healthunlocked.com/fndhope/...
That’s amazing to hear and I’m really happy for your daughter and for you and family. It’s hard to see hope sometimes but to read this is inspiring. I’m in BC Canada and attending a FND 20 session work shop that sounds similar and am hoping that the taught skills can help me progress toward happy health.
Unfortunately I may have an autoimmune disease though, that is causing my condition. I am being lined up with a rheumatologist to try to get to the root of this. Hopefully there’s light love health and happiness beyond this constant torture. I fight everyday for my kids to stay strong. Thanks for the uplifting words and sharing your daughters encouraging journey. All the best to her and your family.
I'm so glad that you are getting the help that you need. Several of the teens in my daughter's group have autoimmune issues, and they are making progress. There is hope. Each day is a struggle, but the hard work is/will pay off. Good luck to you as you learn how to manage these issues.
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