Question: Is it usual or typical to have FND symptom exacerbations when sick? I caught the common cold about two weeks ago. The cold was just your run of the mill, moderate cold. Nothing special.
However, my FND symptoms went through the roof! I have been a total mess. Now that my cold has been over for about a week, my FND symptoms are beginning to settle down. The over the top fatigue is the biggest issue tight now
I have been dealing with FND for almost four years. This cold was the first mainstream illness I have had in the four year time period.
Wondering if there is a known connection.
Thanks,
HenriettaPoultryfoot
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HenriettaPoultryfoot
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I've never considered any cold or flu or illness I've had to become such a major issue. However just like yourself even the most minor will elevate my symptoms , I find temperature sensory and regulation is by far biggest symptom when I develop a slight illness which flare up far beyond even something that is reality.. Personally I end up with horribly long cases of the shivers / chills , sweats , compulsions etc... all out of a sudden snap. It ruins me for several days creating some of the worst FND movements and other elevated symptoms I have experienced. I've spoken with my Neurologist about this a few times and it does all make more sense considering how vulnerable our "software" becomes when your sick it's so easy to feel entirely beyond the reality of those symptoms and I'm often more in distress over my FND issues vs sickness at hand.
It's winter again and we all are going to get a little sick I hope yourself, myself and the rest of you all hang in there keep our thoughts happy of times we "did not" feel like this and use it to hopefully overpower our FND triggers in anyway we can ! Much love 💜💚🧡
I'm currently ill with a virus and I always neuro symptoms flare when I'm ill. A chesty virus triggered a big relapse last year I had to have a month off work. Hope you feel better soon x
Hi, any sort of illness will deplete nutrient and vitamin levels, particularly magnesium, zinc, vit C, vit D, and all the B vitamins. If you were previously replete for all these the effect might be less noticeable and your recovery time might be faster, but if you have a deficiency then it is likely to hit harder. My family has a multi-generation vit B12 and B9 (folate) issue and even with supplementation when we get any sort of stress on the body, levels drop and we become increasingly symptomatic. After covid I had to dose quite hard and still ended up with a recurrance of previously dealt with neuro problems, requiring a walking stick for many months. Even windy weather is a 'stress' for me, as it is for many with autoimmune conditions due to mast cell dysregulation.
Please be aware that testing for vit B12 deficiency is not simple and you should not supplement (B12 or B9) before testing, as it can obscure the markers which doctors know to look for. Serum B12 test can rule *in* a deficiency but there is no test to rule one *out*. There are multiple other tests that can help but rarely done unless you are lucky or persistent. You do not need to show anaemia, nor enlarged red blood cells, to have a B12 D. Best wishes
We are currently waiting full blood tests, specifically B12 and folate, will that mean a B12 serum test is done?With reference to cold and flu symptoms, it takes at least a week for my son to get over and he does seem to suffer more tgan most. I play it down (as man flu - sorry guys) to try and get him to school but it very rarely works.
Also, you will notice another post I wrote about "air pressure" and it seemed that having said flu/virus before flights affected his sinuses and then had an extreme virtigo reaction. I asked the Senior Nurse Practitioner, could this be heightened by the CRPS syndrome and she said it was possible.
I think if we try and think of it as a normal reaction, and try and prepare ourselves mentally (ie try not to overdo the little things and conserve energy), that may help a little.
Yes, a serum B12 and a serum folate should have been done, possibly also B6, magnesium, vit D, all useful (essential, in my view). But 'in range' serum B12 does not mean that all is necessarily well. Is your son on an anti-inflammatory type diet, gluten and dairy-free? Vertigo is one of the symptoms which resolved for me with the right form (for me) of folate, alongside the B12 which I'd taken for years. There are 4 vitamers of B12 (cobalamin) and three that I know of for B9 (folic acid, folinic acid and methylfolate, as well as natural dietary folate from food). Not all work equally for everyone and some do much better with a different form or forms. Ideally you would also want an active B12 test (holotc) and homocysteine and MMA (methylmalonic acid). Serum test includes both active and inactive B12 so may look falsely high (one of many problems with the test), and the hcy and MMA are what you might call byproducts of a system that is 'burning dirty'. They are the best we have to identify a deficiency, but still not perfect. There will also be pointers in the full blood count, like MCV and RDW.
Was deficient in vit D and low in iron last time, not sure if B6 or Magnesium will be tested but will ask (may have to book another appt). My son isn't on a specific diet and a fussy eater with textures etc (sadly something he prob inherited from me).
The vertigo (or falling feeling) was a one off, that will be monitored by me on future flights. I guess I have to be careful now flying winter time.
Thanks for the detailed reply. Whats the homocysteine and MMA (methylmalonic acid) test?
Ok, well hopefully the vit D and iron will have improved. If taking a regular amount of vit D then vit K2 is a good idea, as the D helps you absorb more calcium from food and the K2 steers that to bones and teeth rather than soft tissues where it can be problematic. You need magnesium for many things, but vit D metabolism is one. Most people are low so if they won't test you can safely use that one without, although as with everything, start low and slow. It is more widely recognised now, so you may get a test. With D being fat soluble you can go too high, so testing necessary - test, supplement as needed and retest - some people absorb really easily, some quite the opposite. You can do that test at home if needed.
Homocysteine (hcy) and MMA are two tests, usually blood although MMA can be urine. May be tricky to get done, although worth asking, perhaps after getting the serum B12 and RBC result. If B12 is deemed low, hcy etc may not be needed to get treatment. If any autoimmunity in family or any history of B12D or pernicious anaemia then worth getting whatever B12 level shows as. If supplementing already then would have to rethink as results will have been altered and diagnosis difficult. High hcy is not something you want. Again, private testing for both is possible, even a recently introduced home test for hcy if needed.
I'm afraid I don't know much about CRPS although I think it has some things in common with small fibre neuropathy (which I have), and Ehlers-Danlos, and also with fibromyalgia (which I also have). So it may be part autoimmune and part autoinflammatory, in which case an anti-inflammatory diet might be worth a shot if you can find a way to make it doable without being stressful! Made a huge difference to me, although that doesn't mean it does for everyone. As did magnesium, which I use on the skin at night (Better You sensitive oil spray). I found out that for some (me included), dysregulation of something called COMT (an enzyme linked to B12 and folate metabolism) due to an epigenetic polymorphism may trigger heightened pain due to too-high levels of neurotransmitters, and COMT is magnesium-dependent so that may be why I felt a whole lot better with it than without. It speeds things up so you clear the neurotransmitters faster.
Thanks, did a bit of research on the spray you mentioned, found this:"This is designed to support muscle recovery, to support overall wellbeing, and also to enhance the absorption of calcium.
Once sprayed onto your skin, which can be targeted for specific muscle stiffness, it gets to work straight away. The “Zechstein Magnesium commences absorption immediately” so you can rest assured that your body is getting the good stuff quickly and efficiently".
So would you think that this would be a good thing to have in your medicine cabinet if we say had an episode of thigh spasms, which can be ver painful. Luckily, not for ages but always good to be prepared.
Yes I would think it would help with the spasms, but you need magnesium every day for approximately 300+ enzyme reactions, so don't just save it for stiff or painful muscles! Deficiency increases risk of illness and chronic degenerative conditions etc
"Magnesium critically stabilizes enzymes, including many ATP-generating reactions . ATP is required universally for glucose utilization, synthesis of fat, proteins, nucleic acids and coenzymes, muscle contraction, methyl group transfer and many other processes, and interference with magnesium metabolism also influences these functions".
Helps you sleep, keeps bowels regular, very calming but don't use too much at once - as I said, start low and slow, see howyou feel and increase gradually. There are about 9 forms of magnesium and they do slightly different things. I just found that this suited me. Don't get near eyes or broken skin and if it prickles/itches you can wipe the residue off after a few minutes. Some say mag is more important that vit D.
Maybe I should request that to be added to the blood checks then (not for a few weeks). Have made a note on date of bloods but will see if I can get added beforehand to save my son having to go again. Thanks again.
I'm sure you already do, but always get a copy of the actual results. Then you know what has been tested (and what hasn't) and can track the results over time which can show far more than a snapshot which is all a GP realistically has time to look at. I got my old copies back to 2010 and it showed me some very useful information, once I learned what it all meant! You cannot assume that you will be told even if the results are flagged as not in range, never mind the fact that where you are in the range matters, a lot. Good luck.
Just an update. We got some of the results back but will request a print out for my records
Vitamin D was low (as expected) but also the Thyroid levels weren't in range, so retest suggested in 3 mths. This runs in family (due my bloods next week) and fatigue and muscle aches and weakness and muscle cramps (also spasms and numbness) are all within the symptoms. Found an interesting article that I will post separately.
Thanks for the update. Some people with thyroid disorders struggle to metabolise/activate vit D but generally it seems that taking vit D can improve thyroid function (low D may be causatory) although for some it improves TSH but may not improve T4 and T3. Hopefully they have checked all, will supplement better/different form and with magnesium and vit K, and then retest all. Look forward to the article. Cheers
My FND also gets worse when I'm sick. Sometimes, my symptoms will flare up before I even show symptoms of the illness. I've been told that any stress put on the body can cause flare ups. Stress can mean anything, physical like dehydration, exhaustion, heat; and mental stresses also contribute. Doctors seem to like to focus only on the mental stressors though.
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