Breathless

[Littlecook]

Does anyone else get breathless with FND ? I've noticed a couple of time I'm panting even when just walking, I put it down to being unfit and my age . But it would be interesting to learn if anyone else suffers with the same.

[tabey]

yes and I also feel like I’m being crushed around the ribs but was told by a doctor I could not be feeling these symptoms so I gave up trying to get it sorted still happens I get s.o.b and chest-rubs tightness makes me feel clamy and dizzy luckily the rib /chest bit does not happen a lot only if having a major flare up

Just try and take some slow deep breaths and try to keep up right when this happens to keep your air ways as free as possible

You not alone my friend and always here for a chat

Tabe

[Littlecook in reply to tabey]

Good morning TabeyThank you for your message, if I didn't have friends like you I wouldn't know what todo.

Look after your self chat again soon hopefully on a better note .

[Lidldidl]

hello littlecook. Yes I get bouts of breathlessness which can lasr for days or weeks 🤷🏼‍♀️. It’s almost like the air is not going down far enough. Just showering & getting dressed can feel like a marathon sometimes. Then a without rhyme or reason, can go for a nice walk & be fine 🤷🏼‍♀️. I do try exercise when I can. Hang in there we’re a tough bunch. 👌🏻 xx

[Kosh1689]

Yes, with sore lungs and burning pain in the lungs. The ER shows my lungs are not expanding properly.

[Newdx2023]

Yes, I can become short of breath while walking or doing other tasks. When this happens I start my deep diaphragmatic breathing. Seems to work

[TimeNow70]

I run out of breath also from any activity. I was diagnosed with PEM (Post Exertional Malaise) as well as FND. The PEM is what I am being treated for.

[Littlecook]

Hi TimeNow70 I'm sorry its got to be difficult for you PEM that's something I've not heard of before , I haven't been to see my GP about my breathlessness not as yet I don’t want to be made look like a freak as last time I went to see her was about my dizziness, she was horrible to me said you have had all the tests and showed me the door . I will have too see how I get on .

[Lady4 in reply to Littlecook]

Ask to see another GP, not acceptable behaviour.

[Littlecook in reply to Lady4]

Unfortunately our doctors only as two doctors, the best one you have to wait to see her is months ahead 😢

[Lady4 in reply to Littlecook]

Any other surgeries closer?

[Sacsac2024]

I suffer from Shortness of breath, which I contribute to FND.

[Littlecook]

I'm beginning to wonder if most of my conditions can be put under one umbrella, I just get fed up of going to the doctors and get told the same things . Look after your self we are all here for the same reason.

[Lady4 in reply to Littlecook]

What "rule in" tests did they do?

[Littlecook in reply to Lady4]

I've seen E&T all test come back OK, I've also seen my neurologist and told FND ,I have had blood tests , but I feel like a freak as everything comes back normal.

[bookish in reply to Littlecook]

Don't feel like a freak because there aren't tests or the right tests haven't been done - that is not your fault. To some extent it isn't the doctors fault either as they are taught that the tests are infallible and they aren't taught about vitamins and minerals. If you don't have a copy of your test results it would be a good idea to get them. If you do, have a look at the full blood count for things like RDW, Hb and MCH, as well as serum B12, serum folate, iron, vitamin D, thyroid. If you have only had a serum B12 and no other B12 related tests then there is a lot more that should be considered yet. Are you on meds and/or supplements and what is diet like, plus family history, and do you have any autoimmunes? Best wishes

[Lady4 in reply to Littlecook]

And what other referrals did the Neurologist do?

[Littlecook in reply to Lady4]

No more just said you have FND now go away and live your life you want die .

[Shimmyaway]

Did you have an MRI or CT scan.. this is normal procedure for suspected FND .. to rule out other conditions...... and what about the 'rule in' tests ? ..your GP should be asking about these...in addition to giving you advice on how you can help yourself to keep as well as possible whilst living with this demon of a condition. If the GP is clueless, he/she person should be at least passing you on to someone informed about this condition...eg a neuro psychiatric team, who would be based at your nearest regional neuro hub ..would that be the Barberry in Birmingham for you? The Brain and Spine charity, have a free nurse based tel helpline for anyone with a neuro condition.

Sorry to hear you may have to say goodbye to the job you love ...but the people will still be there for you.

[Littlecook in reply to Shimmyaway]

Good afternoon shimmyaway Yes I've had MRI / CT scans but all my tests come back normal, my consultant told me part of my brain isn't working correctly and diagnosed me with FND , my doctor said once I was given this diagnosis I would be refunded to someone in Birmingham but I haven't seen this particular doctor again as she is very hard tobe seen . 😢 My neurologist didn't want to give me medication for dizziness because of having a brain problem and said it could make things a lot worse for me .

I don't know if any of this makes sense to you it doesn't to me .

My head feels like its constantly swimming and I'm walking on air 😫 and don’t know if I'm going to collapse or not .

I appreciate all your help sorry if I've confused you but I definitely am .

[Shimmyaway in reply to Littlecook]

Hi Littlecook, what you have said does make sense .. FND is a brain network problem .. i. e. dodgy connections inside..and medication won't fix them but maybe other 'softer' therapies will. I managed to get rid of a brain that sometimes felt like jelly, and mild balance issues ..can't be sure what it was that helped me exactly, but I do think going out everyday walking in the park had a good effect ..and helped me be aware of the changes.

I would follow up the possible referral to a neuro-psychiatrist in Birmingham. The therapy there from a (lazy) occupational therapist did not help me, but may help you ..or you could get a different therapy. Find out more by looking up the Barberry Hosp .neuropsychiatry section. They deal with FND and below I am sending you a link to their patient info leaflet. When you next see your unhelpful GP show it to him/her. This a national centre ..so no excuses for not referring you.!

My best wishes

Birmingham and Solihull Mental Health NHS Foundation Trust

bsmhft.nhs.uk › FND-LEAFLET

[Lady4 in reply to Littlecook]

Did you have a letter following your appointment with Neurology detailing who they were referring you to?.

When I was waiting "Talking Therapy" referral for my son, I found out it wasn't done (stuck in the system), to say I was extremely mad is an understatement.

[Shimmyaway in reply to Lady4]

I never saw any letter from the QE neurologist who did the referral to the Barberry. This second neurology appt 'at the QE' was arranged out of the blue, via a private agency, not on the QE site, and I felt its sole aim was to get rid of me .. hence the referral to somewhere else,, but at least somewhere that offers treatment, even if it doesn't always work.

[Lady4 in reply to Shimmyaway]

Our Neurologist made notes during the appointment and I was just dealing with my sons symptoms and didn't even clock I hadn't received one, until chasing up referral.

I would have thought you would have had one but guessing it was a while back but you can also see what they wrote to your GP (request a copy).

[Littlecook in reply to Lady4]

Hi Lady4 I've organised the talking therapy my self with Compton Care Hospice my doctor has done nothing to help me all my care is being done through Compton hospice Care that I arranged.

[Lady4 in reply to Littlecook]

Good for you, we really have to advocate for yourselves.Did you get a letter though following your Neurology appt? because I think PT will also help.

[Littlecook in reply to Lady4]

Since I've been diagnosed I've not heard from anyone only from the Compton hospice and that was my own doing .

[Lady4 in reply to Littlecook]

Call you GP and request copies, I emailed the surgery and got them within days.

[MONIREN]

It's interesting reading your comments and others. I've had FND 7yrs, heart condition 13yrs. Lately FND symptoms have increased, but mildly compared to others here. I've had 3 heart attacks and 5 stents, now they are saying nothing shows up when I have tests for angina, maybe it's just FND. Under a great physio who has started me on Parkinsons exercises to train the brain, coordination ones. My speech has slowed down, losing use of my hands, walking difficult and jerking when stressed or tired. I'm 69 yr old female feeling so much older. Take care. Moni

[Lady4 in reply to MONIREN]

Good to hear you now have a great physio, I hope they will be able to make life more manageable for you. Sometimes they get the FND diagnosis wrong, as many conditions have similar symptoms.

[Brokendeer]

Hi I am a long term sufferer of Motor FND, this can affect any muscle group signals anywhere, anytime and for any length of time - Randomly!

I have done the supportive medications, the NHS Inpatient Rehab for FND and been told Self-Management Daily is the only solution.

That said... if you have not investigated all avenues of root cause symptoms like High Blood Pressure, Thyroid Disease or Diabetes first, do not be hasty to settle with an FND diagnosis, go for a second opinion from another doctor of which you are entitled on NHS!

So FND coping methods are stated as simple, work out what are the triggers of the worst symptoms, and then try and figure out a way of reducing them. This might be a combination of actions (these work for me):

Mental: Pep talk yourself into reducing your anxiety or panic -

"Delayed from reaching some place through no fault of your own, like pop-up roadworks diversion, well might be better as could be a traffic accident happening on a joining road which you have just avoided"

"Having to visit another shop for ingredients, might mean fresher new fruit and veg delivery has come in and restocked the shelves or snap sale prices by the time you reach the other shop?"

"If you do not complete the task today, will the world end? Probably not, it's not life or death to clear out the Shed. You can do 15 mins sessions when you can and keep plugging away until it's done OR ask others to help and have a meal or a cake afterwards to celebrate the hard work?"

Those sort of things...

PHYSICAL: Pacing yourself in everything is exhausting, the planning, the lack of motivation, feeling unwell, the depression at not finishing any tasks, when you want to do them - we have all been there!

FND symptoms are very random and diverse among sufferers. The best thing to do is try and be tolerant of this lack of normal routine. Adapt and be mindful of your own personal needs, do not be upset about not hitting the 'Normal' goals or timeframes. Space bigger events out during the week if you can to allow more downtime.

So it takes you an hour to do a job someone else does in 10 mins, so what? Does the job get done- Yes! Does it affect anyone else if you use your own adaptive methods -No!

I sing to myself when doing particularly physical tasks like putting the wheelie bins out, it helps with breathing (by stimulating the Vigus Nerve - key to tremor reduction) helps with coordination pace and relaxes the tension of the mind having to focus intently on balance to complete the task.

At really stressful times like at the Dentist, I run through the lyrics of songs in my mind during check ups or procedures to distract away from the obvious horror of the situation.

You don't have to sing, be good or tuneful, just find something else to distract the mind maybe select 5 things in a room activity, like 5 sounds, 5 colours, 5 textures and ideally try the 3 deep breathes and move on strategy, or the Yoga Breath technique of breathing in through the nose and out through the mouth a few times?

EMOTION: This is the third biochemical signal consuming activity and causes probably the most disruption when the brain is trying to prioritize essential body functions.

Mindfulness; it's talked about for everyone, take time to think but do not dwell on things, distract yourself from unpleasant thoughts, move on with stressful situations etc etc etc

Basically, remember we are all human and can relate to common human problems!

We all feel emotion even if we do not all show it and we all at some point in our lives struggle with interfering thoughts, however what happens in FND is these seemingly innocent but consuming thoughts clog up the decision making pathways of the FND Brain. This combination of Mental logical thought, Physical body function thought and Emotion priority thought overwhelms the brain and causes confusion = FND, at least according to the medical professionals, and know that it's unavoidable in some genetically suspectable people.

Personally I put more stock in FND being triggered by Adrenaline over reliance for years through Physical, Mental or Emotional crisis experienced over the persons lifetime. The 'Flight, Freeze, Fight' survival mode- which is a genetic defence mechanism is ancient human and it's formidable to combat!

Practically anything can trigger the FFF response (releasing high levels of Adrenaline and diverting internal resources within the body to aid escape from whatever invisible threat is out there) and once in motion the Brain cannot stop the biochemical surge, only work through the symptoms created by this reaction. It is this how to convince yourself through thought and action that everything is not a threat and FFF is not required BEFORE A REACTION occurs that makes the frequency/strength of FND symptoms different, finding the trigger points, understanding the build up phase is so massively important.

Once you are in FFF or full FND meltdown, the only option is to 'talk yourself down' from either the real or perceived crisis and simply wait for the worst to pass, crazy but true! And know it will always reduce back to your normal, whether you rest and take a drink of water or do nothing, it will always pass!

So think positive, pace yourself, accept that the new normal means adaption in methods and force yourself to accept limits and help from others, with laughter rather than tears attitude in facing the inconsistency of the whole mad FND condition.

Look for the calm in the Storm!

[Lady4 in reply to Brokendeer]

And if at all possible look for the little signs, increased sensitivies, heart rate varibility, temperature etc and try and stop the symptoms in their tracks by reducing certain inputs, cooling yourself down (techniques/strategies depend on symptoms) but as Brokendeer says, worse case scenario, let it ride over you.

It was more likely bought on by a combination of little things building on top of each other (some probably insignificant to you), so be kind to yourself and breathe.