To all you so called specialists, no...FND is not psychological. It is not “conversion disorder”. It is caused by inflammation. Over the past few years I have experienced swelling in different parts of my body. I have been to many doctors and while they see low grade inflammation, it is not high enough to be any specific disease. It also comes and goes much like our flare ups. So it is considered functional. And now I notice when my symptoms are severe I have a little facial swelling and tongue swelling and arms and hands. Even my ears have that popping and sticking sound that is similar to fluid retention. It’s not too much but I can feel the impact in my head and therefore my brain and I swear that is causing my symptoms. But since the swelling is not noticeable it’s not severe enough it goes unnoticed. My psychiatrist tried to figure out what trauma I went through to have FND he finds no emotional distress and will not give me antidepressants or even wants to see me again because there is no need. Fine I don’t want antidepressants because my emotions are not causing this it’s inflammation that the doctors haven’t figured out yet. My cognitive behavioral therapist have gone over my symptoms and what I was feeling and doing and my emotions were different each time. But what was the common denominator was my slight swelling. Inflammation caused by some immune response. Why oh why can’t these doctors figure this out.
Inflammation with FND this is not psy... - Functional Neurol...
Inflammation with FND this is not psychological
Absolutely agree with this! I had systemic inflammation from my gallbladder and also having celiac disease. I am healing my gut (immune system) which is linked to our brains. As I am healing my gut with food, supplements and bone broth my symptoms are subsiding. It will take time for this to happen however I am 90% better than what I was. I was very unwell. Also had my gallbladder removed!
Please tell me what you have done or changed to make yourself better. Any tips help thanks!
Sure! I have cut out gluten and less sugar which cause inflammation. I eat protein with every meal (so basically paleo diet). I eat lots of bitter greens so I add rocket and spinach to my meals. I add turmeric to my morning smoothie every morning for inflammation. I have balance my hormones by taking vitex and adding flaxseeds to my smoothies. I eat either tuna/salmon and hemp oil most days for omega 3’s. I take a strong magnesium supplement every day. I take activated b12 and Vit D3. I use copibia oil which works on same brain receptors as CBD oil. I see an amazing Natropath who understands the gut/brain connection. I take supplements to help support neurotransmitters in the brain. I used sound therapy every night. I see a neuro psych who is teaching me how to respond to my symptoms and retain the brain pathways using neuro plasticity.
It’s a full time job recovering from FND!
I absolutely second the Paleo diet. It has put me in the best health of my life. My naturalpath believes I had leaky gut syndrome or SIBO before. I'm soo much better with probiotics and a Paleo diet.
I agree with you both AjaStar and Yellowfinch as I too get swollen hips and have a very low immune system.
I completely second that FND is not psychological because there are physical symptoms. Recently my blood count was diagnosed to be very low, meaning I have severe anemia.
If FND was psychological or a nervous system problem or whatever else those specialists say, then why are there such symptoms? The psychiatrist we see are for people who are not right in their head!
We are perfectly sane in our heads but we are being categorised because they (the Dr’s) are too lazy to put the time and effort into diagnosing us properly. I strongly believe something in our brains should show what we have.
It just needs a Dr who is willing to take on the project. To test what they practiced for 7 years in Medical school.It’s so frustrating. These people do not love their job. If most were passionate about it then I believe we would be in a better position.
I cannot say I agree with your diet as the Dr’s of Gastro thought I had celiac disease and I went on a gluten free diet, before the FND symptoms started and it just made me very sick and debilitated with severe and extreme stomach cramps. but this diet wouldn’t work for me.
Therefore, I would say it is for each individual to find their own cure through their own trial and error diet. I believe eating what your unique body wants is partially the way forward. Takes time and effort though.
Regards
P
Hi, I read that if have IBS or similar symptoms you should try drinking fennel tea after each meal. Fennel helps your body to digest food, so I tried for a week and improved in 3 weeks my symptoms were so much better I felt human again!
Give it ago- I have found fennel teabags in all supermarkets.
Good luck!
Brilliant- thank you!
Is the gall bladder connected to fnd as they are mentioning mine as I have sensitivity in that area.
Hi There, I think if your gallbladder is not functioning well it will cause inflammation in your body. This Inflammation can then affect your brain. I think the cause of FND is different for everyone however I do believe inflammation plays a huge role in FND.
I agree, I also have swelling in different parts off my body.. your comments makes so much sense..
I have been diagnosed with FND and have had a very bad headache for over a week with popping ears,whistling ears and utter fatigue.
And facial numbness. In the past this has only lasted days, anyone else had similar.....
Yes- I was also diagnosed with PPPD which often goes with FND. This caused all my ear/head fullness and tinnitus.
Yes I’m feeling that now and I notice that my eyelids and face is a little puffier.
They say the root cause for all disease is inflammation and I agree! Like you I also did cognitive therapy and saw a neuropsychologist, trying to dig deep looking for some sort of buried trauma and found nothing. They both agreed I did not have any signs of conversion disorder or PNES. The last two years Ive done the keto diet and high CBD low THC exactly because my thinking is inflammation. I also train 6-8 hours a week ( run, bike, sswim) It’s really helped me manage seizures from multiple daily to once every two months or so. I also take omegas, turmeric, MCT oil , B vitamins, etc. I still have hemiparesis, which is causing scoliosis and pain, some headaches, and mild memory issues, but compared to before I started the diet and supplements I was completely miserable.
It sounds like you have done a brilliant job managing this! Can I ask did you have fatigue? I would love to exercise but I feel it would wipe me out for the day. If I go to work for the day I spend the rest of the day/evening in bed.
I did have fatigue and nausea when I was having daily seizures. I couldn’t actually sleep a lot but I felt like I had no energy to get out of bed, my poor kids did all the cleaning and cleaning, it was an ugly time for me. My friend with MS who has managed his disease with diet ( wahls protocol) and also suffered from fatigue told me that he re trained himself to develop more energy, overcome over heating and other symptoms. Basically you push yourself, make yourself even if you feel crappy and over time you have more energy. It’s like working out a muscle you start small and work your way up. My friend by the way takes kids on hikes for weeks at a time and I am a state champion triathlete. It worked for me, I still sometimes have low energy or I don’t feel great, but I make myself go out there anyways. I’m not a doctor, so I don’t know if this is a good idea for everyone. For me the more i do the better i feel. A holistic doctor told me recently that exercise is the only way to make mitochondria which is essential in autoimmune disease and health in general. I know it sounds like torture and maybe a little simple to work but somehow its worked for me, keep in mind that i do believe management of seizures reduced a lot of my symptoms as well , so it’s probably been a combination of things that helped.
My disclaimer Is that I haven’t been diagnosed with FND... my neurologist that I’ve been seeing for years says he thinks I have it but hasn’t felt comfortable yet diagnosing me with, (more and more tests!)
MS is still on the table for me. I have been diagnosed with white matter disease and epilepsy...
This is so helpfull! I am going to try a little exercise each day. Thank you!
I absolutely agree with this. My FND ended up being diagnosed as fibro, partially because of the low-level inflammation that wasn't associated with anything else. I also suffer from Celiac and migraines as well. But no one treats fibro, just like they don't treat FND. I was desperate for relief and ended up going to a naturalpath. I have been put on LDN (low dose naltrexone) and a Whole30 diet. Whole30 avoids gluten, dairy, sugar, alcohol, legumes, grains, and sulfites. With both of these on board I have reduced my symptoms by 85%. But it took about 9 months of being on LDN to get there. My neurologist doesn't agree with LDN. He says I'm wasting my money. But my symptoms have improved so much he dismissed me from care. But he still says it's not the LDN (It is!)
I have FND and Fibromalga and have followed these posts with interest. I know that I need to eat more healthily but what caught my eye was LDN. Drs will not prescribe it in the uk, so I've had to source it elsewhere. I've heard good things about ldn, can you tell me what optimum dose proved most beneficial for you.
All the best Cornisman
Hi Cornisman,
I worked up to from .5-4.5 mg. My doctor did this slowly with me, because I also have stomach and migraine issues. LDN can initially cause stomach distress and headaches. But after going Whole30, the LDN didn't bother me at all! I started to feel better at 1.5, noticed energy at 3, and a reduction in pain at 4.5 mg.
The difference is night and day. We've had rain for 3 days here. Last year this cold, wet weather would have put me to bed in awful pain. Currently, I'm in some pain, but I'm still typing this message out. And I could still cook myself lunch and switch the clothes! So it's manageable, for sure
Thanks for the reply Justdrea81, I now have some idea of the dosage I need to start with. I had read somewhere that you start low and increase accordingly.
For me in the uk, it's not straight forward to obtain. First I fill in an online form, then 3 weeks later a phone consultation, (which I have on Monday) If that goes ok then a prescription is sent to Dixons the chemist in Scotland to dispense it, and send it to me. Something like £35. I might get some to try by Xmas. Facebook page is a good idea, will join that. Thanks for all your help Cornishman
That price sounds about right. I pay $45 US dollars for 30 pills. When you first titrate up, it's a little more expensive because you have to pay per pill. So I think my first 2 months were about $90 US dollars.
Thank you for sharing! I am going to check out LDN. I also have celiac and migraines.
Best of luck! There's some great facebook support groups for LDN
Do you plan to continue LDN or are you going to see how you do without it?
I'm going to continue it indefinitely. I just feel so much better. A lot of doctors haven't heard of it, or see it as experimental. I found a naturalpath to treat me. There's facebook support groups for ldn. Those have been extremely helpful for me. They have great suggestions for finding a doctor to prescribe it.
Hi
I was intrigued by all this new info. I often wake up throughout the night because my tongue is swollen, temperature goes really hot and I also get the weird thing in the ears -this is on top of my regular FND stuff! Someone on another group mentioned pituatory gland and hormones. Has anyone had it checked out?
I apparently "over do it" according to family but I feel I need to keep incrementally pushing to make progress.
Have a good day
My tongue swelling has been constant for the past few days. It’s not noticeable to other people but it is bothering me. I hope it goes away soon. I’ve been more uncoordinated in my movements lately as well. Oh the joys of this disorder. I’ve checked my female hormones and insulin levels and all normal. My CRP and WBC is slightly elevated which indicates an inflammation but it’s not high enough to be anything concerning according to doctor. Well my symptoms are concerning I don’t care if the blood tests don’t show the severity of this disorder but my symptoms do, so the doctors just blame stress as they always do. Maybe my low inflammation don’t affect other people but it affects me but the doctors won’t treat it. And shame on doctors who don’t respond to our posts. Surely some do read this but don’t respond. Don’t they see we need help. And no...not psychological help, but some good old medical investigative research dammit.
I agree. At the same time as my 'functional' symptoms began, I had problems with my shoulders.
I was under the MSK for this as they were obviously structural issues. I had various misdiagnoses along the way, including polymyalgia Rheumatica which I took a course of steroids for 6 months!
More recently I had MRI with contrast of my shoulder and they have finally discovered that I have inflammation inside the joints. I have been diagnosed with seronegative inflammatory arthritis and put on Methotrexate.
My rheumy says it is very unusual to have RA start in the shoulders only and is keeping an eye on me.
I'm convinced my neuro issues and this must be linked but the link is yet to be made!
It’s funny you mention shoulders because whenever I try and lay on my side and put pressure on my shoulders I start feeling symptoms which range from dizziness, a heaviness a draining energy feeling and when I get up that side of my body feels off and shoulders ache. So I try to lie down on my back and it sucks because before this I was a side sleeper. Has your new medication reduced your neuro symptoms?
Not as yet but they take a while to work and DMARDS are just designed to stop autoimmune disease progression, but lets see!
I was planning on asking if they would put me on some steroid medicine to see if it would help. I asked before, last year, but they said no, but I don’t know what else to try. How did you feel with the 6 months of steroids and what symptoms did you experience?
Yeah they don't like prescribing them as they do long term damage. On the high dose of steroids I was great. I had more movement and less pain and stiffness in my shoulders but as soon as I started to reduce them, all the symptoms came back. I have difficulty putting a coat on, doing bra up & reaching above me etc. Since coming off them I have had steroid shots in both shoulders, it takes the edge off but I still have trouble lying on my side etc. The Methotrexate can take up to 3 months to work and I am only 6 weeks in. I am very worried that this long period of misdiagnosis has caused long term damage in my left shoulder particularly, it really has serious loss of function.
The steroids didn't affect my functional symptoms, which are with my legs, I have stiffness when walking, toes turn in slightly and can not lift my legs when I am lying on my back. I have had 5 days physio for this at St Georges but it hasn't really helped in the long term. I kind of understand the idea that the brain is misfiring etc and that my legs aren't actually weak but that there is some mis-signalling going on. It does make sense to me BUT it is too coincidental that this all happened at the same time!
So even if I take steroids I’ll still have some symptoms, huh? Well I took a couple pills in the hospital and I wasn’t back to normal but I did feel good and stronger and I want to feel that again, I guess that’s why people can get addicted to that. I just want some pills for a month or two, would love to feel better even for a little while. The doctors say you have to retrain your brain with FND because the signals are mixed up and I had believed them, but it seems that when I think my body is finally on the right track, I’m back to square one and I know my brain didn’t forget what i just retaught it. Even my physical therapist doesnt understand it when that happens. There is something else going on. Like maybe random inflammation popping up in different parts of the head and body that blocks the signal temporarily and then goes away but the inflammation is mild and so goes unnoticed. Right now my head feels full and feeling a little tingling and something like champagne bubbling.
Please look into LDN (low dose naltrexone). My symptoms also basically went away on steroids. That's how I knew it was inflammation. Since starting ldn my symptoms are reduced 85%. I can work again. I can drive again. Most days I function just fine now. It's amazing!
Have other neurologists seen this and what does it mean? findaphd.com/phds/project/i...
One of the most informative articles on current understanding of FND but still don’t agree with some of it ajp.psychiatryonline.org/do...
Just posing another possibility that’s come my way recently from an expert in collagen vascular diseases I saw last week - this is Lymphedema. She explained that swelling in my hands and around my eyes is oedema as part of my connective tissue diseases. No one has ever told me this before and it explains everything for me at long last.
With no idea of this herself, my neurologist has just written a letter about me with an account of my symptoms affecting arms and legs, exactly the way described below.
So I just wanted to say that, for at least some of us here, we probably shouldn’t be here at all. We should instead be looking at systemic causes of our neuro symptoms and should be seeing a doctor of vascular medicine rather than a neurologist. My own experience of neurologists is that they don’t know much at all about systemic diseases - only about neuro inflammatory ones.
So they may well be taking our symptoms out of their rightful context and assuming they are FND.
I’ve had confirmed autoimmune diseases for much of my life but this idea that my so called “functional” overlay might actually be caused by fluid retention from my collagen vascular diseases is very new to me. Here’s some information in case it helps others here:
“1. Sensational Heaviness of a Limb
This is one of the earliest signs of lymphedema. During stage zero of lymphedema, the symptoms will develop slowly. The apparent symptom of swelling will not be present yet. However, the protein molecules that are not being filtered out properly will start to accumulate underneath your skin. Even though the limb looks presumably normal on the outside, the extra water will pull into the affected area and cause heaviness.”
facty.com/ailments/body/10-...
healthline.com/health/colla...
This makes sense, I have always felt that there was fluid retention in my muscles or blood vessels that somehow blocked brain signals or something to that effect. Remember since we don’t know we have to come up with theories ourselves. I remember when I had my stroke like symptoms complete with right sided facial droop, My right eyelid was swollen and so was my tongue, but it was dismissed. Can you elaborate more? Has your treatment of this lymphedema improves your neuro symptoms? And what is the treatment and regime you are doing now? Thanks
Hi there - I only had the appointment last week with the vascular medicine professor so I don’t know what treatment is or even the extent of what is causing what. I just worked out for myself that as she says my hands and eyes swell and stiffen overnight this could well also apply to the leaden in my arms when I’m resting and my legs when I stand for longer than a few minutes. I’d need to confirm this with her though.
But having read the above and having suffered from leaden sensation for 8 years now - I think for me it’s a case of getting back onto immunesuppression because that way my high inflammation levels should go back down somewhat. The vascular medicine dr agreed but wants to exclude stuff like pulmonary hypertension (quite a high risk for me), cancer (having Sjögren’s also puts me at a higher risk of lymphoma) and see what a recent skin biopsy for squamous cell carcinoma shows before deciding on further treatments.
So it’s not really about treating lymphedema for me I’m guessing - it’s about treating the underlying cause.
My neurologist has at last accepted that I have an underlying systemic disease that’s been ignored and neglected and that this is likely causing my neuro symptoms. She’s accepted that I have small fibre neuropathy around my body plus Raynaud’s and Erythromelagia. So “functional” hasn’t been mentioned in her latest letter just as I requested. Drug intolerances have also been accepted by her as cause of some of the many many generic symptoms listed on the neuro symptoms/ FND website. I don’t know if this will help her with her own practice from now on but I do sincerely hope I’ve made her question which side of the F debate she opts fit in future. The potential to misdiagnose serious drug reactions and conditions as “functional” is not a risk I feel neurologists should be taking at all.
Therefore I think the only point of me staying on here despite me having very acknowledged collagen vascular diseases, is to keep flying the flag for these. So many of us here have had “FND” and other “functional” overlay diagnosis’s getting in the way of serious clinical decision making about complex non neurological diseases requiring risky treatments. I’m 4 or 5 years into the harm being done period and my related medical PTSD relapses and remits as a consequence. This has to be stopped!
My CRP and white blood cells go from high to normal always fluctuating so they dismiss my inflammation. Even though my ANA is positive it’s at the border so again not high enough to be diagnosed, even though I have family history of autoimmune diseases. They don’t know so meanwhile I suffer as do others like us. I know I want to see another rheumatologist do you recommend other specialists that helped you to test for vascular lymphodema and systemic diseases
Aja I’m in Scotland and have no idea where you live or who you can see.
How high do you call a high CRP? It certainly doesn’t seem right that these fluctuate but are being ignored. People get diagnosed with rheumatic diseases with normal bloods - this is only one part of the jigsaw. 30% of Sjögren’s and RA can present as seronegative, Vasculitis, Psoriatic Arthritis and others are often seronegative. A low +ANA is not diagnostic but it’s still a pointer if you have symptoms.
My only advice is that you escape neurology and this community if they are calling this “FND” and try to find your nearest centre of excellence for rheumatic diseases and request your GP refers you again for a second opinion. My own journey for the right diagnosis has taken me 8 years and many invasive investigations. I won’t say I’ve arrived but I’m hoping, through sheer persistence, that I’m getting close. I don’t post here anymore and am going to bail out of following soon but my suggestion would be to follow and ask about your symptoms and signs on Vasculitis UK and Thyroid UK perhaps.
Or if you’re from the US or other place then find the equivalent charities and join their forums?
Ps re your post. I think the problem is that you are assuming your inflammation is part of “FND”. It can’t be because a conversion disorder can’t cause systemic inflammation or make your CRP or WBCs fluctuate. This doesn’t mean FND isn’t a conversion disorder - it just means your inflammation isn’t FND!
I just think FND is a bull crap diagnosis, an umbrella term for I don’t know.
Exactly this!
It is the wastebasket of doctors who should not be titled doctors. Any good "thinking" or interested doc serious about his patients and his and medicine's lack of knowledge, would never resort to the wastebasket.
Psychiatry is another wastebasket. Neuropsychiatry is also. Embarrassing really that such lack of honesty or desire exists in medicine.
Simply they should say "we do not know", but we can try different things to see if we can make you more comfortable.
Why not simply say "these people are afflicted with real disease that we have not uncovered"
Has anyone tried daily turmeric for inflammation? It is one of the most powerful anti inflammatory substance in the world....
I use it once in a while but not daily. Do you?
Same. I think I might start using it daily to see if there is improvement in inflammation....
Hi. This is really really interesting to read. I'm currently under Neurophyscology. My Neurophyscolgist says FND often stems from injury or underlying illness, I have just recently been diagnosed with stage 2/3 Endometriosis even though I've had symptoms for years. He said that it was taking it's toll on my body and it eventually gave in and hence the FND manifested itself. I 100% agree with that. Thanks for your insight. Xx
I have endo too. One of the listed causes of FND is pelvic inflammatory disorder. Endo causes lots of inflammation. It is due mostly to high levels of estrogen. Vitex is a chinese herb that helps balance hormones- it worked for me for years!
I have fibroids in my uterus and was on my period (heavy bleeding) when I first got FND. Ive been thinking about a hysterectomy but I’m scared of my FND getting worse after surgery
I've had symptoms of Endometriosis for 10+ years. Had a Laparoscopy in March (FND flared up badly after this), Laparoscopy showed nothing. I then had a Pelvic MRI in September this year which showed major endometriosis. Bowels, bladder, ovaries and uterus are all fused to my Pelvic sidewalls. I'll need surgery at some point no doubt and I'm only 25. It's really affecting my mobility and movement in general. Hope you're doing okay. ❤️
I’m just curious, what makes you think Your inflammation is the cause of Your FND rather than FND being the cause of your inflammation?
Also, is there a reason you believe the two are connected? I have ehlers danlos as well as FND and assumed my pain was because of the FND when in reality I have a second disorder. Also, there are often disorders that are highly comorbid with psychological illness. Finally, FND is not necassarily caused by childhood trauma or conscious stress and can have very physical responses such as rise in temperature due to how interconnected our nervous system is with the rest of our body.
Recently an acquaintance of mine who has FND went to a functional neuroscience center and confirmed what I believed all along. Inflammation blocks the fuel our body needs and causes havok and misfiring in the body. He suggests an anti inflammatory diet plan and a therapy that involves movement of different parts of the body at the same time so all those parts are activated together and will form a more permanent pathway of communication to help against relapses.
That is super interesting. I’m going into behavioral neuroscience as a career and have considered doing research on FND in grad school or when I graduate, and I think this would be super interesting to look into. Thanks for your response!
Hi there.
I was hospitalised this time last year with 'FND'. Was in for 2 weeks. They then diagnosed FND. My Neurophyscologist thinks it's not FND per say, but actually thinks my Endometriosis (going through diagnosis atm) caused a massive flare up of FND symptoms.
He's put it down to that and said really there's not much he can do, as it's more about keeping my endo in check.
I'm convinced my FND is down to my Gynae issues, as he is too.
Really interesting post
X.
Hi I totally get it we’re swelling is concerned , I swell , legs stomach , arms etc n my face was one of the first signs before I had muscle n walking pain , sometimes u can really tell face swelling n when I have pic took it can look like stroke 🙄
FND diagnosis and not coping well with it
Is it FND? Do I have rights to request other elimination tests?
Diagnosed with MS and FND!!
