I would like to know if anyone experienced a sudden onset of fibromyalgia.
In June 2021 I caught covid (delta variant) and the virus caused me afib (atrial fibrillation) but i was misdiagnosed for many months due to cardiologists' mistakes.
At the end of December 2021 unfortunately i got covid again. I was very ill and very weak for almost a month because the arrhythmia was very active during the illness.
At the end of January 2022 and when I was already recovered, I had an episode in the morning with a very high heart rate that almost made me faint, so I went to the hospital but unfortunately they ran all all kinds of tests except the ECG that would have detected my arrhythmia.
So searching the internet I discovered that I could run an ECG with the apple watch and I found out on the night of Feb 5th in February 2022 that I had vagal-type atrial fibrillation. At this time the arrhythmia was very symptomatic and every night I had afib in my deep sleep (which is what happens when it is of vagal origin and when my heart beats slowly). All the medicines that they gave me in the hospital did not work since the arrhythmia was very strong and was triggered by the vagus nerve (for which I had in a very high tone). I tried different medicines but nothing worked. Every night I slept only 2-3 hours and the arrhythmia lasted for hours until it went away. I developed insomnia. I had a lot of tension and high stress. I used a device for transcutaneous vagus nerve stimulation (tVNS) which was supposed to reduce the afib episodes. With very low intensity i could feel already the stimulation of my ear and vagus nerve.
At the beginning of March 2022, I looked for doctors to do a heart ablation for me and I confirmed that by mid-April I was going to have the ablation
Meanwhile I couldn't sleep, the arrhythmia was brutal and the only thing they prescribed me in the hospital to sleep was xanax (alprazolam) which gave me very strong secondary symptoms since I felt very strange sensations in my brain. All I wanted was to sleep and not a drug for anxiety to sleep. The arrhythmia continued to be triggered quiet often, every time I was lying down or after meals, as it is typical of vagal afib.
The months of Feb and March were of extremely exhaustion, I slept sometimes only 2 hours in 48 hours. I was extremely anxious and the arrhythmia was absolutely hellish.
At the end of March I started some new heart pills (disopyramide). So I started taking a new medication that seemed to be effective because it has very strong anticholinergic effects against the vagus nerve and is the medication recommended for vagal-type atrial fibrillation). I had a lot of anxiety and stress because I was afraid that the arrhythmia was going to become permanent and every time I had it I couldn't breathe well so I was very afraid.
Unfortunately a week before my ablation I suddenly began to experience widespread pain in my body, in the back, in the chest, in the belly... and very strong in the legs. I was in so much pain that it was impossible for me to travel anywhere.
I went to a rheumatologist and a neurologist. The rheumatologist had no explanation at first for these pains and the burning sensation in the back. He did all kinds of blood tests and there was no trace of immune disease. He agreed that it could be fibromyalgia but he had never seen such an acute case of fibromyalgia to develop in such a short time. The neurologist did different tests and through a qEEG could see that there is a dysfunction since the brain has overactivated the neural pathways of pain as it happens with fibromyalgia patients.
At the moment and unfortunately the pain and daily fatigue is still there. I haven't slept naturally for months, only with sleeping pills (zolpidem). I have tried many treatments but at the moment my body seems to be stuck in sympathetic mode. When i use now the same tVNS i need to apply the highest intensity to feel stimulus from my vagus nerve when before the onset of the fibro i only needed a low intensity to achieve the same. So definitely the parasympathetic system is in very low tone after the fibro.
In May 31st I had the surgery (ablation) for the atrial fibrillation.
At the moment I am trying to recover from the ablation and also trying to seek help from doctors to treat this fibromyalgia what is causing me daily pain and anxiety/stress
The whole fibro thing is somehow new for me but i have already read tons of books and applied lots of treatments. What i find most difficult is to cope with the idea that i suddenly developed fibromyalgia because i cant find anyone telling me they experienced such onset of the syndrome (just in one day and with lots of pain after the onset).
Has anyone experienced similar onset of the fibro?
thank you
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JoseT
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onset of fibro is variable among people and for some it can be tied to the birth of a child and appears quickly. For others it can be months that it builds up after presenting in one area of the body to then have all over body pain.
It sounds like you have had a very stressful time as well as pressure on your body. I am sure this will have contributed to the onset.
I had what I came to know as fibro symptoms appear, what felt quickly to me after caring for mum before she died. But not in in one go like you. I think that you were so Ill and stressed it caused it to happen in that way.
I had it in legs suddenly, so I had mobility problems,. Only sleeping two or three hours, doctors not seeming too bothered.
Then two months later suddenly in arms and hands. The intensity of the pain seemed to be from 0 to 60 in two or three days- especially with my arms and hands.
I then suddenly had coccyx pain one day, two months later.
I have improved. So please hold onto some hope, that the crisis state in your body can start to subside. I hope that this happens for you.
I agree that side effects can be very difficult. I'm on 10mg of Nortriptyline. As it's the only thing I can take, and it took two months to work up to that dose.
As mentioned, the onset of fibro can be after experiencing a stressful event. I was just reading the other day about fibromyalgia appearing in a few patients following them getting Covid-19: see: ncbi.nlm.nih.gov/pmc/articl...
Think we also will have much to learn between the similarities of 'long Covid' & fibro.
I think it can be as Fibromyalgia can be triggered by a virus i.e. covid / significantly stressful traumatic event and it sounds like as you have had it twice and you are living in constant fight or flight mode, your body is constantly under stress ie. not being able to sleep and that will trigger the vagus nervous system to disregulate so it is likely that is a build up and one day it triggered more. Can you recall what happened around that particular day, how you were feeling what you did etc? Weather/ foods you ate.etc
Have they checked to make sure your thyroid hasn't been affected because of covid and what did they check for when you said they checked for an autoimmune as I get these types of issues with my auto immune thyroid disease and fibromyalgia combined
What's an qEEG? How did you get that as I also had bad heart issues and sounds like it could be something like vagal-type atrial fibrillation, how did you get them to finally diagnose you? and I found it can affect my blood pressure too. Where did you get thet VNS device I am wondering if it might help with my symptoms
have you looked into adrenal issues as I found it can be associated with high cortisol levels/ adrenal fatigue triggered after being under significant amounts of stress / illness so maybe supplementing your adrenals might help if you haven't tried already
yes, the last days before the onset i was under extremely stress as i started to get ectopics during the day that triggered my afib. But i had no pain before the onset.
qeeg:
Quantitative EEG (qEEG) is the analysis of the digitized EEG, and in lay terms this sometimes is also called “Brain Mapping”. The qEEG is an extension of the analysis of the visual EEG interpretation which may assist and even augment our understanding of the EEG and brain function.
So this video is about tVNS devices ("Parasym") which are low level low range TENS units attached to the ear with a clip. If t = T, both 'transcutaneous'. At 3'17'' it says the specific tVNS units cost £600 (the video was uploaded July 2022), whilst an expensive TENS unit which might be able to be adjusted to this low range costs £80 and the clip for it £40. On the site of the UK TENS company she recommends I can find neither a tVNS unit nor a TENS unit with a suitable program, altho the video was uploaded 3 weeks ago. To me it sounds like hard to get. Or maybe you need to phone them for advice. Or forking out the £600 for the "Parasym" trademarked version...
On Optimizehealth365 they start talking about tVNS, then recommend a certain TENS unit, and then say as it's hard to get a tVNS unit you have to do a bit of DIY work on it, which doesn't sound at all easy...
If it is hard to get and there is hardly any medical evidence then it is last in line for anyone who wants success with their symptoms.
Also I'm specifically wondering what the difference is between a microcurrent unit and a tVNS unit, since both are low level and low range. Looking for a microcurrent unit seems more promising than a tVNS unit.
In the video and in 1-2 studies it says tVNS may be helpful for epilepsy. However above TENS site warns people with epilepsy. From own experience I'm very wary.
Bottom line for me from all this is, incl. that video: tVNS may be of interest to someone who has tried >100 treatment types (like myself), but completely off the grid for someone just starting. If it initiates great hope, then very likely even greater disappointment.
Lacking a better comparison: It seems to me a bit like a person just starting stamp collecting who wants to save all their money to get just an original Green Mauritius. Just there likely is no such thing... Instead it'd be much more productive and rewarding to go for the usual things first. A TENS and vagal exercises instead of a tVNS; supps like magnesium glycinate, CoQ10 & passiflora before GABA etc....
try to google images for "vagus nerve stimulation tens" , but google under images. i found lots of references so you just need a normal TENS and the ear clip. If you cant find anything please let me know
If you look at your own video that definitely says any old TENS unit is not enough as the ranges and levels are usually too high. I believe her a bit more than sites that are selling them, don't you?
So have you bought the TENS & clip and are trying it soon? Keep us posted if and how it works for you.
What about all the vagus exercises I posted - have you started them, like I have? Are they working for you better than for me?
Cos of course just searching and talking won't do anything for our condition...
Also I have now done a search like you suggested and only 3 sites come up (several times). One of them is the one I posted above. One on instructables is exactly the DIY I also referred to. The 3rd is nourishingtherapies, an Australian site which gives absolutely no information about the quality of the TENS, if it does what they claim, no reviews, plus high shipping costs from Australia.... And that's it.
Your 'research' up to now leaves most of the real work to others... Interesting for me all the same up to now, cos both of that is managing to convince me that this is nothing I'll ever recommend to anyone.
"Considering that the vagus nerve controls pain signals towards the central nervous system, and growing evidence of autonomic dysfunction in fibromyalgia in terms of sympathetic hyperactivity, it can be argued that rebalancing the sympathetic–parasympathetic activity via vagal stimulation might reduce the intensity of pain and stabilize the autonomic symptoms of this disease. In addition, an immune system alteration seems to mediate the interaction between the autonomic nervous system and the chronic inflammatory state in fibromyalgia, apparently by the influence of inflammatory cytokines and chemokines. This well-described inflammatory state in fibromyalgia patients is critically important for treatment approaches
...
Since fibromyalgia involves a dysregulation of the autonomic (high sympathetic tone) and immune (enhanced pro-inflammatory activity) systems, non-invasive tVNS is expected to improve the symptoms of fibromyalgia, including chronic, musculoskeletal, and generalized pain, through modulation of the vegetative and immune systems
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There seems to be evidence that stimulating the vagus nerve improves our symptoms:
The effects of non-invasive vagus nerve stimulation on in patients with fibromyalgia
But when i use now the tVNS i need to apply the highest intensity to feel stimulus from my vagus nerve when before the onset of the fibro i only needed a very low intensity to achieve the same. I am having a really hard time to feel now ear stimulus while any other person who is trying the tVNS can feel the stimulus right away once it reaches the middle intensity range values. Thats how bad my vagus nerve activity is right now
I am focused every day in vagus exercises like you. In fact meditation, cold shower, cryotherapy, breathing techniques, bathing, etc is all about stimulating the vagus nerve. I certainly believe and through my own experience i can see our bodies have very low vagal tone. I did also test: have a very cold shower and apply the tVNS after the shower and i could see the stimulus for few minutes in much lower intensity values. I will let you know how it goes with the tVNS but so far it is sometimes really difficult to get stimulus even when i apply the highest intensity level.
I hope this information helps.
Until recently there was a tens device from UK for vagus stimulation but i cant find it now.
Can you refer me please again to the vagus nerve exercises you posted once?
Ah, sorry I'd forgotten your original post. Didn't know/remember you were doing all the rest - sounds good that you are trying. But do I read you right that it isn't helping much? How long have you being using meditation, cold, breathing? Do you do Wim Hof's breathing exercise? If so, which variant do you prefer?
I've written 3 long posts in reply to "miamisunset" the past 3 days, incl. summary and experiences of the exercises, but here are the links:
Even before looking thru that last video again, this reminder of yours above made me wonder if you might now need a normal TENS unit with clip rather than a tVNS? She puts it to 7 Hz 250 width for 3x30 mins/d, and it usually doesn't work at the beginning - she has to turn it higher and lower again once the vagus responds. That may help you develop it further...?
I just talked with my sleep lab psychiatrist about it and whilst she couldn't tell me any exercises or explain it more, she confirmed that working on the vagus puts our body in a better capacity for good sleep (she didn't exactly want to say it helps us sleep, seemed more indirectly). (Which must be good for fibro of course.)
i sometimes go to the very cold water in a near river and i bath for 20 minutes. It is freezing but my pain improves a lot and also i notice my heart rate gets much better.
Just had a look at the comments under Cort Johnson's healthline article, lots of exercises and again the idea of using a TENS, esp. if people can't afford the tVNS unit.
there is also another product used officially by the Canadian health care system for vagal stimulation and is called Dolphin VNS neurostim. Unfortunately it is also very expensive but is officially used by the national health care in Canada for long covid haulers.
Interesting that it's that official there - long CoV makes new ideas more possible.... O.o
It just occurred to me: This shows the acupressure points K27 which work perfectly for me when I'm short of breath. Sometimes 30'', sometimes 60''. Do you think that has a connection to the vagus? I've tried to find it out, but haven't found anything saying that. In any case: Praps useful for you?
What you have is long hauler’s COVID that brought on the afib and the fibromyalgia. There is a lot of different long hauler’s COVID. I know of people who got CFS from COVID. Lack of sleep brings on fibromyalgia symptoms so you have a lot going on that would cause a sudden onset of fibromyalgia. They don’t know that much about long hauler’s COVID. So the research is still going on of long hauler’s COVID. Here in the US we would report it to the CDC (center of disease control) so what ever the equivalent is in the UK you need to report it. So they can keep up with all the long hauler’s COVID symptoms. I hope you will get the answers you need and find the right treatment that helps you with the fibromyalgia and sleep. I had a doctor who recommended taking melatonin around 7:30pm that it helps make me sleepy between 10:00-11:00pm. I was on Latuda for 8 days and it messed with my sleep and caused other problems so had to stop that. Am sleeping better now. ❤️
I tried it in the 90’s but it didn’t help that was taking it before bed. Taking it early really makes a difference that on those rare occasions I forget to take my night meds (amitriptyline included 100mg) I still will fall asleep. The only thing that happens is I have very vivid dreams and will wake up 2-3 times for maybe 5 minutes during the night. Try taking it around 7:30pm 5mg and see if it works better. Yes I sleep through the night. Have pretty good sleep. 😊❤️
Your story, and that of many others, strongly supports my theory that FM often has a chicken-egg relationship with sleep.
My FM is ALWAYS worse when I don't sleep well or enough, and much better when I have slept well and refreshingly (often with the aid of zolpidem, which I find leaves the least 'hangover' the next day).
When my pain and fatigue builds up and up and I finally allow myself to have a few nights sleep with zolpidem I usually feel much less fibro-y for a few days to a week.
When I think back to the start of my FM, I realise I was in a lot of back pain from a fall from a horse, and definitely not sleeping well. The back pain rapidly morphed into all-over pain (over a few weeks), when I also contracted whooping cough, and had even worse sleep.
So, like you, I know I had severe sleep deprivation just prior to developing full blown FM.
I know the experts consider sleep problems to be a prime symptom of FM, but is it also a cause, in a vicious circle kind of way? I believe so, and aim my management strategy at ensuring my sleep is as good as possible, and 20 years down the track, FM does not control my life. It's still always in the wings, but I know I can usually deal with the flares by getting some good quality and quantity of sleep.
Maybe now you've had your heart op, and can relax a bit psychologically, you'll get some better sleep.
BTW, one of my techniques for getting really good sleep is to sleep partially sitting up, in a recliner chair. The previous owners of our house left 2 electric recliners, and our living room is cool, dark, and very quiet so if I'm having trouble sleeping I go there with my pillows and duvet. You mentioned your vagus nerve signs were worse when lying down and after eating. Well, you have to eat, but you don't have to lie down flat to sleep.
unfortunately i didnt experience pain for so many years and now i have always some pain :-(... it is really shocking after such stressful time with the arrhythmia to have FM. Many times it is very difficult for me to come to terms of what i am now experiencing.
yes sleeping must be totally related to FM and also the parasympathetic activity as our bodies seem to stuck in flight and fight mode. I dont believe there is no way to "re-balance" the ANS, there must be for sure a way but it seems there is so little scientific research on this syndrome. I hope now with so many covid people experiencing FM (maybe i am one of them) there will be a turnaround.
I dont believe there is no way to "re-balance" the ANS, there must be for sure a way but it seems there is so little scientific research on this syndrome. I hope now with so many covid people experiencing FM (maybe i am one of them) there will be a turnaround.
Hi again - it's of course hard to know or even believe before we're there if that is possible and that is the way. There are many people with their own little hunches / hypotheses, medical researchers, other scientists, and just us. But even if one of us were right with one or several or all of these, ours are not going to be the first ones the researchers are going to turn to, as the evidence so far is so slight... We should all not just be our own guinea pigs, we should get our own labs, ey? 😜
There is "a lot" of scientific research done on fibro, 800 studies a year on pubmed, but it's just so complex that it's hard for them to get a toe-hold. The ANS isn't too much what they're thinking of pain-wise though, rather the CNS and the peripheral nervous system, as I've said, see pain researchers like Irene Tracey (see youtu.be/DOixCniuHTg). Of course it's never enough research / money, like for all conditions, but the state of the world as it is this is only one of many worries. We've often said here that similar symptoms in Long Covid puts a different slant on it, like MCAS too, but unfortunately that doesn't mean it'll help, may be just a new subgroup (subgroups being something we've agree upon elsewhere).
unfortunately i didnt experience pain for so many years and now i have always some pain :-(... it is really shocking after such stressful time with the arrhythmia to have FM. Many times it is very difficult for me to come to terms of what i am now experiencing.
Like said I very much empathize how tough this is for you. I sometimes wonder if I'm so pain tolerant and have come to terms with it quickly is made easier by always having had pain. All of us have these problems with our conditions, so it's good you reaching out everywhere to people who understand. Yours may be different, mine may be different, but that's then again similar, and we're not that alone.
You poor soul! This all sounds awful and thoroughly traumatic. Seems to be the case on this forum that normal medical practitioners often do not help that much (and they are radically overstretched and probably sick themselves right now). Just the occasional ones when people strike lucky. Quite a few on this forum, like me, have a great respect for traditional Chinese, five element Acupuncture. An experienced acupuncturist is reading the five pulses in the wrist and can focus in on where in the body the energy is weakest and then treat the meridian with very thin needles. It is a whole system which is actually joining the dots where setting healing in motion is needed. I cannot recommend it enough even if the idea of needles repels you. It has kept me going for years and picked me up when I needed it. - Sometimes you do get a reaction. - If you are getting a result with some of your meds, then good, but otherwise there is still this to give you hope. Early days recovering from covid yet anyway. - Anticholinergics can set up future probs with memory. Suggest Sage oil and mct oil to offset the effects of it. Maybe NMD too which you can also check out on line or with pharmacist as being ok. - You seem to have a good mind for understanding medical stuff. Problem solving is important with fibromyalgia as there is always something new. It's very creative. Good luck.
Yes! My Fibromyalgia occurred overnight. I went to bed feeling quite normal. When I woke up in the morning, I was in excruciating pain. I could feel pain in every joint of my body - so much so, that I could have drawn you a detailed diagram of my skeleton. I couldn't get out of bed or move and just lay there until it gradually subsided slightly several hours later.
It turns out that this is a classic manifestation of the condition. Now that I also understand what can cause it too, it makes some sense.
It is now known that in Fibromyalgia, the peripheral nerve endings become damaged. The nerve endings can become damaged in any part of the body, which is why the areas of pain will differ with each person. This is often associated with a prolonged period of stress, which may be through illness or other stressful situations. During periods of stress, we produce cortisol, which is fine in short bursts but very detrimental if prolonged. Eventually, our body can no longer continue and starts to run on empty; the nerve endings being damaged in the process by the high cortisol levels.
Hi KBM0g3r - thanks for your interesting input and cliff-hanger! And your explanation of fibro has similarities to what I think, but altho it sounds so logical, there also seems to me to be quite a bit of confusion in it when compared to what researchers have found out....
So firstly I'd be interested how the story continued (how your fibro then developed further). And also if it really is the case that there were no fore-warnings etc.? Wouldn't "classic manifestation" mean that most people wake up suddenly to find they have fibromyalgia pain? However most of us have a certain amount of build up. It's from that knowledge that Jose is surprised and looking for others with such a sudden onset.
And secondly, I'm wondering how you came to your explanation of fibro? There is often such a thing as nerve damage without it being fibro. And it's a diagnostic criterion for fibro that there is nonormal nerve damage/image (our pain is not defined as neuropathic). That's why neurologists do nerve tests on us to make sure it's nothing else. Or are your referring to small fibre (poly-)neuropathy (= SF(P)N), which a certain proportion of us seem to have (up to 40%)? This is one of the ideas which researchers have had as a possible cause of fibro. But it may also just be a biomarker: something we may often have, but not the cause. But I'm not sure whether you're referring to SFN at all?
However cortisol doesn't cause SFN. I just had a look on pubmed to make sure I'm not missing anything: 0 results. Whilst amongst other things cortisol can cause some brain damage, but that would be central and not peripheral. This would fit to one of the usual possible (not certain) explanations, fibro as a central sensitization syndrome (CSS). SFN can be caused by a great many things, but not by cortisol, as far as I can see.
You're right in that researchers have found that a proportion of people with fibro have had trauma or stress in their lives, but this has not been identified as an actual direct cause. And how high this proportion is is controversial. And whether that might be due to the cortisol also then can't be proven. Cortisol is being used as biomarker, for instance a salivary one, like in this study pubmed.ncbi.nlm.nih.gov/334.... Studies like this one (2020) on pain & cortisol in fibro pubmed.ncbi.nlm.nih.gov/331... concentrate on momentary cortisol not in any way its causation of fibro. That one concludes: "much further work is needed to elucidate the true relationship between chronic widespread pain and cortisol levels in patients with fibromyalgia."
Thirdly: I can't see what your explanation has to do with a sudden onset. It does explain how Jose's stress might have been part of the cause of fibro, altho there's no proof for that generally or for Jose's case. But not that fibromyalgia happens overnight. And if it did why don't we all have sudden onsets?
So I'm interested how sudden your onset actually was and what happened then as well as how you came to this fibro-explanation of yours!
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Fibromyalgia, recurring uti and something else going on having falls and wanting to sleep all the time is it onset of ME......
Is Fibromyalgia something else?
Is it Fibromyalgia?
