Exercise induced flare up!

[Jen85scientist]

Hello fellow FNDers,

I was diagnosed with FND over 4 months ago. I initially had sensory symptoms in both feet and my upper leg but 4 months in and it has spread almost everywhere! I also have twitches and jerks when relaxing (this isn't too bad though). My symptoms are random and fluctuate in severity and location every few days to weeks.

I exercise regularly and have noticed a temporary flare up in my symptoms following a work out. This is likely an adrenaline associated issue, particularly since I perform high intensity exercise.

Does anyone else experience a flare up following exercise?

Thanks!

Jen

[peachesb192]

I just joined today. I am not super convinced that all I have is FND and after like 8 years I am getting some repeat tests. But yes I can sometimes experience spasticity or spasms during or after exercise. I have also experienced sudden sever shortness of breath that I think may be associated with a sudden jump in blood pressure. I agree that it could be a problem with regulation of stress hormones. I ironically also have symptoms trigger sometimes when I am very relaxed or after a massage.

[Daesin]

Hi, I was warned that exercise could make me feel some symptoms more but that is wasnt damaging anything. *******Please ask your physio or Dr about your specific responses.*****

I haven't gotten balanced enough for serious cardio yet but I know the more I do of anything the more I feel off balanced dizzy sick etc. This induces spasms for me.

I also spasm/jerk at rest which makes no sense to me, but it happens. To be fair I twitch most of the time.

Best of luck.

[Jen85scientist]

Thank you for your responses. I never twitch/ jerk during exercise and in fact, the vast majority of my symptoms - including sensory significantly decrease when I am distracted. Jerking only happens when I settle down in bed (not too much - just once or twice and in very random places - ankle, leg (either side), neck, torso, arm(s)) - it is REALLY random! Twitching also only occurs when I am relaxing. My sensory symptoms are weird...I had it in both feet literally within a day and then my *cough* backside within 10 days...My feet symptoms always change and now I have sensory buzzes in my fingers, back, head and calf which are always fluctuating and/or disappear out of the blue. Some symptoms have stuck around but argh, this is a really bizarre disorder!

I am going to start Mickel Therapy in hope it will be of some benefit!

[ElsieAych]

I do, but at this point "exercise" for me means doing too much around the house at one time, or just being out & about running errands. I used to be an athlete and work out regularly when this all started. Hope you are able to continue working out; just be mindful that the flare-ups will occur after workouts and maybe plan around it.

[Jen85scientist in reply to ElsieAych]

If you don't mind me asking - what were your initial symptoms and what made you stop/ cut down working out?

I don't have any reduction in function but the tingling/buzzing/ bedtime jerks really flare up after running/strength training.

[ElsieAych in reply to Jen85scientist]

My initial symptoms were weakness and imbalance in my legs and lower body. We noticed the flare-ups always occurred after I was more active. I used to have occasional flare-ups but now it's a matter of a new baseline. I am always "off" now w/ balance, etc., but then have flare-ups that make things *really* bad. It has also begun to affect my arms in that they are very weak & tire very easily

[Jen85scientist in reply to ElsieAych]

Sorry to hear. Have you tried any lifestyle changes such as diet that may also influence your symptoms? Since my symptoms started I have tried to reduce - almost eliminate all dairy products. Milk proteins are notorious for causing health problems.

It's good to know you're still keeping as active as you can - I hope you will improve.

[ElsieAych in reply to Jen85scientist]

I haven't made any dietary changes yet. I was just diagnosed on Feb. 14 so we're still working on a plan of care. I'll probably work on cutting back on carbs just because I consume carbs like they're going out of style, and I know that's bad in general. i have a few other diet changes I may make, but for now I'll be doing neuro-PT and neuro-OT.

[Jen85scientist in reply to ElsieAych]

I agree, I tend to eat carbs like there's no tomorrow! I've made a few dietary changes which include no dairy products and no meat (except fish). I'm trying to reduce the inflammation in my body in hope it will also have a positive effect on my symptoms. The omega 3 to omega 6 ratio is particularly important so I am working on improving mine such that it is in favour of omega 3. I don't know whether it will make an improvement but either way, it's good for you.

[Amyyoga]

Hi Jen,

Yes, same here. My symptoms are worse after intense exercise, particularly random body jerking right as I'm falling asleep (annoying!) Exercise also seems to affect my standing balance and I have trouble word finding and articulating, but it is mild enough, so I won't give up exercise for it. Like you, most of my symptoms are not noticeable when I am distracted, they tend to flare up when I am tired or stressed. I also have sensory symptoms that come and go without any obvious triggers

Amy

[Jen85scientist in reply to Amyyoga]

Hi Amy,

Yes, the very random body jerks are quite annoying!

I also deal with 24/7 vertigo and balance problems but thankfully vestibular exercises have normalised this. Have you considered vestibular physiotherapy for your balance issues?

Jen

[Amyyoga in reply to Jen85scientist]

Hi Jen,

Yes, I have vestibular exercises as well and they do indeed help. For some reason, intense exercise still throws it off a bit.

Amy

[Jen85scientist in reply to Amyyoga]

Hi Amy,

Yep - same here. It is only temporary and back to baseline the following morning but exercise continues to irritate it a bit. Intense concentration has the same effect. I've had vestibular issues for 4 years following a long-haul flight and was given mixed diagnoses - vestibular migraine or Mal de debarquement syndrome, however I have also been told I don't fit the diagnostic criteria for either condition. I guess it's just a part of FND and now, the sensory symptoms have caught up! Fun times!

Jen

[Amyyoga in reply to Jen85scientist]

Hi Jen,

Agreed, intense concentration has the same effect (and I seem to get more tired from concentration than in the past). My symptoms began with the balance issues (~5 years ago) and I have had mixed diagnosis, too (BBPV, Cerebellar Ataxia to name a couple). The sensory and movement symptoms began about two years ago. My current diagnosis is FND, but I'm not sure if my Neuro just gave up and placed me in a 'default bucket' because my symptoms don't fit any diagnostic criteria.

It helps to know others going through similar symptoms!

Amy

[Jen85scientist in reply to Amyyoga]

Oh yes, it is really nice to know I am not alone with these bizarre symptoms! I was initially concerned about MS when my sensory symptoms started but my neurologist was adamant it wasn't but I insisted for an MRI and yep, he was right - brain and spine were clear. I know MS can take a while to show but after four months of sensory symptoms, I am beginning to think MS is impossible - symptoms are far too random, have spread far too quickly (I have it in every limb and head already) and although some symptoms have stuck around (they haven't gone worse and their severity changes routinely), others disappear whenever they please! It is so random - currently watching TV and here I am buzzing here, there, the odd twitch there......

Do you have persistent sensory symptoms as well as those that come and go?

[Amyyoga in reply to Jen85scientist]

MS was my first concern as well, but my MRI's have come out clean and it's been a few years, so I think a lesion would have shown up by now. And like you, the symptoms are too random, though my right foot has been more regular than any other body part. I wouldn't say anything is persistent, they all come and go, but my right foot flares up more than any other area. My hands fall asleep more regularly, than they used to, but not regularly enough for it to be persistent.

[Jen85scientist in reply to Amyyoga]

My feet are the strangest! Symptoms started on both within two days and although symptoms are always present, they change routinely! I might have a tingling ankle for a week which then changes to a buzzing big toe to twitching toes but nothing sticks. It's so odd! My most annoying symptom feels like I am sitting on an electric toothbrush - this is persistent but hasn't changed since day one and like my feet, started very abruptly - in 10 days I developed symptoms in three different places. Nothing has 'fallen asleep' and I don't have any weakness.

This is my second MRI - I had odd neurological symptoms in 2012 but they disappeared within two months.....

Are you taking any meds to help with the symptoms?

[Amyyoga in reply to Jen85scientist]

Weird, I had strange calf sensations in 2012 that lasted about 2 months. That is when I thought I had MS and got my first MRI. I also thought it may have had to do with running, as my calves also got sore after I ran (even though I had been running for years, so not typical new running soreness) It went away and I stopped worrying about it, until the balance issues began in 2014.

I'm not taking anything to help with my symptoms. However, I tried some antidepressants to help with the depression and anxiety I was feeling from the symptoms. But those made my symptoms worse!

[Jen85scientist in reply to Amyyoga]

Woah - we almost have an identical history! How bizarre!

My initial symptoms were shooting pains in my fingers and buzzing in my calf. I didn't have an MRI then but I did have an MRI following the onset of my vertigo in 2016.

It's interesting how you say your symptoms flared up while taking medication. I am currently on citalopram and amitriptyline and I have noticed an increase in my symptoms but it's difficult to say whether it's the drugs or just FND doing it's thing... Either way, I certainly don't find any sort of improvement in my symptoms so I will stopping them - I don't like taking these sorts of tablets anyway!

[Grumpyoldmaid99]

Hello, just wanted to say that I'm permanently in a wheelchair and real exercise isn't an option, but I have the same symptoms. Random jerky spasms mostly when lying down/resting. Various doctors have offered no specific reason for them other than 'nerve issues'. With regard to exercise I was previously fairly active despite pain, and was told use it or lose it. Not sure if this hinders or helps. Best wishes L

[Kazandoz in reply to Grumpyoldmaid99]

Hi, I'm in a wheelchair too, so ditto re the exercise....reaching for my coffee cup is exercise for me ;)! I was interested in the earlier chat about adrenaline response, as not only do my symptoms flare but if I get really happy excited I have word finding issues, stammer and slur like I've had a serious drinking session! Did it once with the boss...talk about getting strange looks!!! Wondered if any of you found the same flares when you got excited too?

[BuntyP]

one of my problems is that I don't automatically breathe and particularly if I'm focusing on thinking or exercising I can virtually stop breathing. I think the lack of oxygen makes the symptoms much worse. It might be worth thinking about your breathing while you're exercising and afterwards. Good luck!

[Daesin]

Yes! I just wrote about how exercise hasn't been effective for diminishing depressive symptoms after a substantial time. The more I move the more I feel the wobble and malfunctions. I will walk for an hour and twitch and spasm for the next 12 hours. It sucks! No Dr has been able to give me an answer except ' that's odd.' I knew I wasn't that flavor of crazy thank you