Just a quick question - do any/many of you suffer with FND related breathing issues?
If you'd read my first post, you'll know that I haven't been 'diagnosed' with FND. Yet. But in all likelihood, I'm expecting to be fairly soon considering we've ruled pretty much everything else out.
My main issue - amongst dozens of others - is an awful breathing issue. I feel like I can't inhale or exhale fully, it lasts 24/7 and has done for 10 months now. Gets worse on exertion too. Lately it's been getting worse and I feel like I have to lie flat on my back to sleep as any deviation to either side makes it worse. Over the past 10 months it has literally ruined my life, along with the other symptoms I've been having.
Touch wood, today isn't a bad day but I was still panting on the short walk to my mum's house from mine.
Also, if you do suffer with FND breathing issues, have you found a way to make them better (i.e. physio, medication, exercise, etc.)?
Thks
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DaveT81
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That sounds very challenging if you have had chest xrays etc and they cant find anything wrong. Have you thought of trying an inhaler if they will prescribe you one?
I have mild emphysema so I can relate to the struggle!
Yeah, I have actually had chest x-rays, spirometry CT scan and I've been trialled on a blue and brown inhaler. The steroid inhaler helped mildly, but I think that was mainly because I felt like they gave me a bit of control, i.e. I was doing something.
Generally though, nothing has really helped.
For all intents and purposes, I shouldn't have a breathing problem but it's so bad and is literally every second of every day.
My old GP spent 10 months telling me it was anxiety, but couldn't explain why it was lasting all day and night and often woke me. He had much more trouble telling me why it got worse on exertion and tired me out, etc. At this point I'm at a loss, and I'm assuming it's a problem with the nervous system. That's why I've arrived at FND!
I understand what you're going through I too have FND and for the last 6 months have started with breathing problems to go with all the rest of the fnd symptoms I'm afraid help is very limited very frustrating.
I do have brief breathing problems (USA says "knock on wood") My breathing stops at times. Neither inhaling or exhaling, it just stops. I have not gone to anyone for that particular problem because in the states they just throw it out to be a symptom so I need to breathe through it?! But I personally have learned is to stay as calm as possible. In my head I think oh well I can't stop it, its not me itll pass. And thats why its brief. I used to freak out. I used to freak out about every symptom because I didn't know why or how anything.
Then when I said hey this is apart of me now and truely understood that, symptoms of any nature either stuck or left and came back but shortly as with breathing.
Yeah, I've had those moments when breathing stops.
That, for me, usually happens as I'm relaxing in bed. It's as if my body just totally switches off.
But I have real trouble breathing in general too. I'm 37 but feel twice that age. It's so hard to do simple things and I get out of breath walking up stairs or taking a shower at times!
I didn’t know this was a thing with FND but that happens to me .. usually when I’m very tired and feel I’m going to just stop breathing I used to panic thinking I was going to stop breathing in the night and die but I haven’t yet .. thank god I also get breathless putting my shoes on or stair or anything really … hope you are all ok it’s very hard having FND I wish I had anything else at least I might get a cure
I can say i suffer the same issues of all days on mothers day i woke to find i could not breathe and i could not inhale or exhale and i was becoming dizzy so we called 999 and i was rushed into hospital after given iv steroids antibiotics and fluid my breathing got better and they first thought I had Quincy's but it turned out it was just a symptom of fnd so your not alone
For almost 2 years I struggled to breathe, I woke up one morning and felt like someone was standing on me. Couldn’t sleep or walk more than a few hundred metres. It got to the stage where I couldn’t go far without almost passing out. I was diagnosed with extreme allergies and on up to 7 Zyrtec a day. Eventually I saw a respiratory specialist and after ct scans, spiro tests, vq scans you name it, I had it, we couldn’t work out what was wrong. Last August i was hospitalised and diagnosed with FND. In simplest terms my brain had forgotten how to breathe correctly. I was hyperventilating and like FND does, this pattern became my new normal. I learnt belly breathing exercises and along with my speech therapist we worked on other techniques to help me improve my breathing and speech. I’m off all inhalers and immunotherapy drops and slowly starting to walk distances again.. I did have paralysis so slow and steady. I had a respiratory nurse who was very helpful if you are able to access one.
All the best and I really hope things improve for you.
That is definitely how it often feels for me - like my brain/body has forgotten how to do it.
I find it's worse when I'm sitting down too, or after I've eaten. Feels like there's a great weakness in my abdomen and around the sides of my chest. Muscular weakness, maybe? Or perhaps the correct signals/messages aren't being sent by my brain.
I'm due to be referred to chronic fatigue team on the NHS, and the Dr I saw also mentioned functional disorder, so I'm going to ask my GP to refer me to neuro to get a proper diagnosis and then I'll look into respiratory/physio, etc. to help with my individual problems.
Hi, I too struggled to breathe when I started having non epileptic seizures, my breathing would get slower and slower and I would just slip into a seizure, while in seizures I could hear and understand everything around me but unable to respond in any way. My partner was told by physio that he need not worry as when I stop breathing I would go unconscious and my breathing would start on it’s own, it took me 17 months to get diagnosed with FND, not knowing why my breathing was doing that along with all the many symptoms I had was extremely frustrating and frightening. After being diagnosed I looked on the website and I had at least 90% of the symptoms listed. 4 years on after 1 months rehabilitation for FND a lot of my symptoms have disappeared 🤞what I’m left with are still life changing but if I don’t overdo things I have a much better life then I’ve had previously. The sensory issues I had lasted over a year at least, (taste, smell, hearing and breathing) pressure in my head and ears which caused my eyes to stream, lights too bright, sounds causing seizures, this all went on it’s own wether this was because I was resting and not overdoing things I’m unsure as it hard to remember, I know I was resting though as such as I was unable to do anything without help, my partner was at work and I crawled, used furniture to get around, I had never heard of non epileptic seizures before looking at the website, not knowing what is going on with your own body when all tests come back fine is reall frightening. Good luck on your journey.
That is very true, I was extremely lucky in that I had help from someone my partner knew who came to appointments with us and pushed for me to get to Professor Edwards to get my diagnosis before he helped I was treated for anxiety and depression which I didn’t have, migraines, strokes etc. When I knew I didn’t have any of these and no tests showed I had anything physically wrong with me it became frustrating, frightening and depressing. I was just glad to get to Professor Edwards to get my diagnosis, it at least explained the symptoms I had. The best thing for me I learned in rehabilitation was putting my heels down first when walking, for something so small to make so much difference was just amazing to me, this immediately stopped my limp, dragging leg and foot turning in. The other thing I learned was that when overdoing things my symptoms returned with a vengeance. I still struggle with pacing myself but I now know if I can pace myself my quality of life is much better. Hope this helps you. Best wishes.
Hi I have been diagnosed with fnd and have other medical issues to yes ive noticed since Christmas ive developed breathing problems like youve explained never in my life have I had breathing problems up untill recently been treated for chest infection poor iron levels im also now on blue and brown pumps too help me be able to breath deeply in ad out without these I struggle alot but still with pumps notice the same problem as you explain and others like someomes crushing my chest been treated in emergency department also have been unable to breath and collasped i dont believe in the diagnosis i was given and I'm fighting a losing battle with doctors I've now been referred to professor Edwards for fnd in London in AugustI hoping he will mke me understand mre about fnd and help me if this is the case I've got alot more medical problem and alot of lesions on the brain and lesions attacking corpus callisoum which is another part of my brain rather then rule anything else out I was simply given the diagnosis of fnd due to apparently the truma I suffered as a child 🙄
I hear that a lot of the best specialists for this are based in London, one in Edinburgh too.
Always seems to be the way in the UK, doesn't it? I may look into seeing one myself if I can actually have a proper diagnosis. I'm sorry to hear about your problem and hope you can find some help too.
The lesions should make things easier to diagnose for you though, is it definitely FND?
I'm certainly keen to end up seeing a respiratory specialist and anyone that may be able to assist in that department. I'm wondering whether some form of exercise/physio, etc. on abdominal muscles or that general area might help. I feel like there's a weakness down there or something to that effect.
It's really quite amazing that you should mention allergies though, because another thing I feel has caused the breathing issue to feel worse is that I often feel like my sinuses are 'narrowed' or almost 'blocked'. I take cetirizine for allergies, although I have no known allergies, but I did a 'test' via a groupon-type site and it told me that I had intolerances to many food types. Maybe I should request some form of allergy testing when I next see my NHS doc.
Yeah, I'm starting to lean toward treating one problem in isolation and going from that point. I'm all for the idea that helping my main issue - my breathing - would have a knock on effect. On the rare days when it's not so bad, I automatically feel so much better.
Days like today, when it's really bad, it exacerbates my other symptoms. I've no doubt it is a cause of many of the other problems too. But the general issue with my abdominal area/chest area is undoubtedly related too.
have been checked allergy hay fever, or asthma been a lot change weather and exercise can exert if have underlying asthma.
I do. I had a nonepileptic seizure followed by breathing problems about 30 minutes ago. It sucked but I manage it better these days. With time you will learn to deal with it better. It will become more managable.
I have same I finally on heart meds thanks to neuro symptoms.org I could not believe and still can’t believe it’s panic disorder fight flight system broken and vagus nerve needs activation rebuilding by relearning how to breathe properly w good posture and starting on gut repair
My wife was given the FND dx after about 3 months of hospital visits and neuro investigating. The very first symptoms began with the same shortness of breath you speak of. She describes the feeling as "someone hugging my chest tightly". After about 2 weeks those symptoms receded, but immediately after came the complete breakdown of gait, walking, and visual equilibrium. Every doctor we have been to has evaluated that episode, either completely separate or not all related to her FND. While in the hospital, we followed the standard treatment for respiratory issues, i.e. x-rays, CT, telemetry. All were negative.
Now here we are, almost exactly 365 days since this first began, and she has started presenting the exact same shortness of breath signs. I can't see how the two can NOT be related. She was perfectly fine last week, and doesn't have COVID, flu, or even a cold. The lack of helpful research and resources is the biggest issues. Doctors have no idea what to do because the knowledge base is so bare. I can tell they just give us a dx so that they can provide a billing code. Its very frustrating. And if anyone comes at us leading with the words "anxiety" or "depression", i'm going to provide them with some new words to put in their vocabulary.
Hi DaveI myself have the same issues and it's been a really frustrating journey, I've been investigated for heart issues, lung function test, liver issues which can cause the same issues and it looks like it is just my FND causing the issues as all my tests come back normal I have some more test to do like checking the throat it's self
I've have inhalers but have made no difference It has been suggested a oxygen machine at home for those times it hits because that the only thing that seems to help
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