Post viral symptoms / syndrome
Posted , 87 users are following.
Hello eveyone,
I have been diagnosed with "post viral symptons". I have not got a clue what it is.Has anyone heard of this. For over two months I have been suffering from the following:
Heavy head feeling,
unbalanced.
constant pressure in the head
flu like symptons but no fever.
Pins and needles in left and right leg. Sometimes hot and cold flushes in the leg.
Prickly feeling in the arms
Muscle fatigue or cramping in the hands. I feel like my hands are so stiff sometimes.
Fatigue all the time ( despite having a good sleep).
Apparently I had a viral infection and then one by one these symptons appeared. it is dragging me down. I have MRI, blood test which came back okay except for slight raised "infection".
Does anyone else have these symptons? It is dragging me down. Is there a solution. The Dr says there is no treatment but it will disspear or subside on its own... when? when? when? Some days I can handle it other days I want to just curl up.
No offence but this syndrome just sounds so wishy washy. Could I be misdiagnosed?
Sad Elle.
4 likes, 464 replies
seed Elle1234
Posted
Hi Elle,
-Heavy head feeling
-unbalanced
-constant pressure in the head
-flu like symptons but no fever
-Pins and needles in left and right leg. Sometimes hot and cold flushes in the leg.
-Prickly feeling in the arms
-Muscle fatigue or cramping in the hands. I feel like my hands are so stiff sometimes.
-Fatigue all the time ( despite having a good sleep)"
After a really bad respiratory flu and high fever close to 104, and some odd eye/sinus infections end of last year and early Jan, I can say I suffer from exactly the same list of symptoms you described. My head feels like it's too small for my brain. There is a constant pressure around my entire cranium. I pick up a plate or a laptop and it feels like it weighs 20lbs. I'm a 42yo male, 6'2" 240lbs so this is very odd for me. I just haven't been the same since that flu bug. It was the most sick I've ever been in my life. I have other issues as well, heart palpatations, breathing problems or sensations where I can't get a good breath, hard muscle twitching usually at night when I'm about to go into subconscious state. I've had a myriad of tests done including heart monitor and they all came back normal which is very strange to me.
I walk into things, like a shoulder bump into a wall, I lit the charcoal in a grill but closed all the air vents so it suffocated, I put milk into a mug and put it in the fridge instead of the microwave. Little strange things like this.
I have good days and bad days. Seems I'll be on and off 3 days here and 3 days there. It's exhausting.
I do find getting outside to take the dog for a walk helps if not to just get my mind cleared up some. I liken it to starting an old lawn mower the way I feel. Once I get moving it's a little easier.
I hope you find some relief. I would take this time to make sure you're eating right, taking vitamins where needed, and pushing yourself through the fatigue to try and move if you can. Not sure if it helps or not but you're not alone. Keep reading and trying to find information, but also be careful with the internet and symptom checking yourself. It's an easy way to lose your sanity.
Guest seed
Posted
I have all the symptoms you have especially the difficulty breathing and hard muscle twitching which is very odd indeed.
Newwales1 Elle1234
Posted
I have had the same problem for 4 years & come to the conclusion the Dr's are useless if blood tests come back normal they just give up & send you home. Post viral syndrome is just another way of saying we have no idea what's wrong with you.
If you have been ill for more than 6 months Don't believe any Dr that's says don't worry you will get better it's not true it will normally takes years or decades unfortunately.
People who say you should not self diagnose don't get it, we have been to the Dr's so many times & done so many tests but still they shrug there shoulders & say nothing we can do. So we are sort of forced to Google, reading up on research & any help. But the fact is nothing helps, it's all about time or longer for researchers to find a treatment & antivirals but there seems to be little motivation for them to do so
monika32440 Elle1234
Posted
Hi Elle / everyone,
I hope many of you have managed to make a recovery by now. It would be great to hear how your are going.
My name is Monika and i am suffering from pvs after a bad flu last September 2016. I never really recovered and felt tired but went back to work. About a month later, I had a bout of symptoms return (tingling, headaches, dizziness, extreme fatigue etc.) and then after a week they dissipated only to return full pelt in January with severe joint and muscle pain, fatigue etc.
My
I am 31 and from Australia and have had to leave work and move back home to recover.
Since January I have had stinging and shooting nerve pain that started as tingling with joint and muscle pain but has become very severe at painful at times in my legs,feet, hands and sometimes all over.
Ongoing Symptoms since September
Constant tingling in feet and hands, often travelling up limbs and up to hips, on torso. Becoming quite painful.
Slightly swollen lymph glands in armpits (quite painful sometimes), neck, collarbone, back of neck & head.
Stiff neck, particularly at back and left side.
Slight swelling of muscle at left side of neck
Blocked ears since start of Jan. possibly earlier.
Ongoing clearing of phlegm in morning and during day from throat and nose since last year.
Mild fever and sudden hot flushes and feeling of faintness.
Feverish feelings often coupled with mild nausea.
Sometimes a compression / band feeling in head and mild dizziness. – Almost like a wave of sinus compression.
Aches in muscles in forearms and lower legs below knees. Legs ache more in evenings. This occurred quite severely in September for at least a week and was worst at an evening.
Freezing feet.
Ibs - dull stomach aches constantly and had ins for two months straight, this probably contributed to my weight and hair loss.
I feel like anxiety has definitely increased with adrenaline all the time in the body and andrenaline rushes for no reason. I feel like the body is in a state of fight or flight.
I have had other fluctuating symptoms such as burning skin, numbness in lower legs, toes and groin, swollen neck and constant sinus headaches. The nerve pain is so bad and is constant in my feet most of the time like sore prickling.
I am doing daily yoga at home, a half an hour walk each day, taking some metagenics supplements for the adrenals and am eating healthy and high protein including organic protein shakes. I haven't had alcohol since the start of the year!! It took me 6 months to get diagnosed and a lot of doctor and specialist visits which caused a lot of added anxiety.
I have only been home for 10 weeks. I have put on weight and my hair is growing back. I find my nerve sensations are not as bad when I do less but I can't do nothing for ever!!
I feel like the body is in a state of stress and cannot balance itself. So even the smallest thing can be a stressor. Even watching Tv after dinner leaves me too wired to sleep.
My symptoms seem to get worse during hormonal times and menstruation. I get much more upset and hopeless during these times also.
Hoping that time, rest and exercise will heal.
Monika
lilum monika32440
Posted
Hi Monika, I hope you feel better. I've been doing a lot of research and there are a number of sites and boards with very similar complaints. Tingling, twitching, weight loss, hair loss, abdominal pain, massive anxiety attacks, insomnia.... and more. Some ascribe it to botox injections, some to SIBO, some to vagus nerve issues, POTS, dysautonomia... It seems like most people recover but very VERY slowly and with lots of relapses. I've had some of the same since March 2017. Yes I had Botox and yes I had a virus (separate from botox). Started with tingling, moved to twitching, insomnia, dropped 16 lbs in less than two months. Had MRI, CT scan, endoscopy, colonoscopy, full neurological work up. Went to Mass General Hospital for a neurological second opinion. I am perfectly healthy. Of course I do not feel that way. The diagnosis is post-infectious dysmotility, anxiety, peri-menopause... a parasite (blastocystis)... nothing makes sense. I am slowly getting better and now I can stand loud music, I eat well, and I generally sleep ok. What works for me:
A clean diet. Sugar, alcohol, nuts and probiotics definitely make symptoms come back, and worse. So noNe of that.
Fresh orange juice for energy. I don't know why, but I definitely feel better after a squeezed orange.
Minimal supplements. I take fish oil and occasional magnesium. Magnesium salt baths are better than pills.
Dry brushing before shower in the morning, to alleviate the tingling.
Yoga nidra. I don't twitch when I meditate. Most often I fall asleep.
Ativan for occasional bouts of panic and Klonopin to sleep. I take small doses, helps with the twitching. Beta-blockers for PVCs.
Exercise of any kind. Pilates, walking, erging. Now mind you, I used to be a fit, fully functioning adult before all this started. Now I am dragging.
Acupuncture. I had two sessions and I felt content afterwards. I don't believe in homeopathy, and until now I had faith in the medical profession. But nobody seems to listen, let apart have any solutions. So we have to figure it on our own. I am getting better but it is so slow. Wishing everyone good health.
monika32440 lilum
Posted
Hi Lilum,
Thanks for the reply and I'm sorry to hear you are also unwell.
It sounds like you have done a lot of research and it does help to put you at ease knowing that other experience some of these bizarre symptoms.
The doctors sure don't have any clue and don't really offer much guidance in terms of recovery advice.
From what I have read, rest and getting the body into a state of relaxation is the most important. Reflexology has been recommended quite a lot from my reading. I would strongly advise to try and see a naturopath as they have some great herbs for anxiety that really work and remove the need for any strong medication that may stress the body.
How can this illness occur from Botox? Wouldn't Botox be sterile? I haven't heard of this before. Only from vaccinations or viruses.
Interestingly, I have also been diagnosed with blastocystis earlier in the year but have not taken medication for this yet as my stomach was too upset to cope with more antibiotics.
I have actually started taking a powder called Diatomaceous Earth that is supposed to be very effective for parasites and ridding the body of toxins so we will see. People rave about it. I really do not want to put more antibiotics into my system as they say your immune system is in your gut.
I'm sure the parasite is opportunistic when your immune system is compromised so I wouldn't be surprised if symptoms are exacerbated by the parasite.
I have also started seeing a chiropractor as they claim to be able to calm the nervous system and bring it back into homeostasis.
lilum monika32440
Posted
I'll look into reflexology, thank you. I have no idea whether botox can cause symptoms like this, just anecdotal evidence of women suffering from very similar symptoms. Botox IS a toxin, and some new studies show it can escape the injection site along nerves. Honestly I find it resssuring ppl without botox have tingling and twitching symptoms; I would not know what to expect or how to clear up a man mad bio weapon (botulin toxin was used in warfare). I agree that rest is critical. I took flagyl for blastocystis and got even more tingling. Flagyl causes neuropathies, so maybe it's smart to not treat it right now. I wish you good health and I'm sure you will continue to improve. You have the right attitude!!
Beverley_01 monika32440
Posted
Hi Monika,
My CFS/ME is from a car crash and I know people with it from operations, giving birth, relationship breakdowns, so maybe botox injections can also set off the chain reaction. The original sources seem many but, viral is seen as the main cause it seems.
Lots still to learn about the condition , it's causes and reliefs.
Beverley
jen01747 monika32440
Posted
monika32440 jen01747
Posted
Guest Elle1234
Posted
Hi there,
I am currently suffering with this and have all the same symptoms as yourself. It's been 2 months now and I have been given a similar diagnosis.
Help!!
lilum Guest
Posted
Guest lilum
Posted
Hi,
I was unwell with what was believed to be a impertigo which put me on my back for a month. When I recovered I immediately had these pains in my chest and had no energy. The pains in my chest got worse affecting my brething and all over my body my muscles ached. I was dizzy and had intense headaches also and these symptoms didn't relieve for 2 months further.
After I recovered I was over the moon and threw myself back into life with sport/social and work but after 3 months I crashed again but this time harder. My breathing and chest pains got so bad that I had to go to hospital where I was told that everything was fine beside having a low heart rate which was deemed to eventually be normal. I went on to get ct scans and MRI scans and blood tests to find out what was happening but with no result. Week by week I feel different with some weeks being able to have friends and others not being able to leave my bed at all.
I have accepted that I have this post viral infection after being unwell with this now for 3 months.
I'm a guy and 23 previously active!
I'm getting desperate now as my girlfriend has moved away with the pretense of me joining her but I do not know when I am going to get better!
lilum Guest
Posted
Oooof. Yeah, every week is a different set of symptoms, just as you think you got a handle on them, they change. So first, I have no idea what is this. I can tell you I researched it to death, and there is no quick fix. There are British boards, Australian boards, Canadian boards, even some Czech and other European ppl, and they all complain of similar things with no solution. The good news is, the vast majority do not have MS, ALS, cancer, or some other rare and catastrophic illness. They also stop posting after some time, which most likely means they are getting better. I came to believe this is some sort of a post-infectious syndrome, which can have puzzling gastro, pulmonary, urological, and neurological symptoms. So anything you can do to calm down your nervous system, which is acting up (and by that I don't mean nerves and emotions, I literally mean your nerve endings and the nerves that control your muscles, your breathing, and your gut) will help. That, and patience. I find it that most people get slowly better, have longer and longer periods when they are ok, and the episodes are less severe. Then at around six months there is a relapse, and then you start getting better faster. So, I am not a doctor and I encourage you to pursue whatever medical tests you feel are appropriate, but I'd stop entirely coffee, chocolate, and alcohol. I know, boring, but those are irritants for sure. Eat clean, exercise moderately (jog, hike, erg, just to keep your blood flowing and your nerves engaged). I take a small amount of benzos (klonopin, 0.5 at night) not because I am anxious, but because it stops the twitching and it allows me to rest. Supplements can make it worse in the beginning, but a squeezed orange (not store bought) will give you energy. I now take vitamin C gummies and vitamin D gummies. I find them easier on my gut. Figure if there are any other foods that set you off. Magnesium (epsom salts) baths will also calm your muscles. Do the dr Weil 4-7-8 breathing exercise twice a day. I also listen to binaural beats for healing and do acupuncture but that might be too new agey for you. Overall, after six moths, I can function mostly ok, with occasional relapses or sudden bouts of extreme exhaustion. Try and do things you enjoy, the mind is a powerful thing and will help you heal. Good luck, and come back and post if you find any other solutions!
monika32440 Guest
Posted
Hey ed, Sorry to hear you are unwell, particular at 23! I am 31 and I am 12 months in and after lots of reading etc. this seems to be mainly suffered by people who are "A type" personalities, always busy, high achievers etc. and the body just needs a stressor at the wrong time when it is pushed to its max to tip you over.
From my reading, my own illness experience and experience with doctors, wether post viral, me or cfs, they are very much the same root causes just different manifestations of symptoms due to the stress response. The body is in a stressed state and often the autonomic nervous system is affected (visit cfsunravelled, some very interesting listening). I know many of my symptoms are related to this (sweating etc.) Hence the fatigue, anxiety etc. so, rest, diet ( no sugar, alcohol, processed foods, gluten etc) and gentle excercise is a must and has been the only real things that have made an impact for me, although very slow with set backs but in the right direction. Oh and naturopath has been great, wish I did this sooner rather than visiting many specialists and testing for everything under the sun because the doctors where scratching their heads and have to follow procedure for differential diagnosis. Forget doctors and medication. It will only make you worse. Naturopath has great alternatives for anxiety, insomnia etc.
I hope this helps 😊
Beverley_01 monika32440
Posted
Hi Monika,
Just to say there are children born with the condition as well as, to my reading, whole communities that can be affected so am not sure it's to do with personality type. Think that there needs to be more research still.
Beverley
lilum Beverley_01
Posted
Hi Beverly, what do you mean by communities? I am waiting for my posting to be miderated( that's what it says) but I am very interested in any link we can find, a common thread for these weird ailments...
lilum monika32440
Posted
monika32440 lilum
Posted
Hi Lilum,
I'm doing ok thanks, just trying to rest everyday. I have had the flu so it has sent me backwards a bit. Progress is very slow but is going in the right direction. I have been home recovering for 6 months now. The nerves have definately settled a lot and I now have days with minimal sensations but took about 5 months to get to this point. They flare if I overdo it. But I have learnt how to prevent this or remedy this by rest. Trust me, rest, focus on diet and recover properly or the symptoms gets worse and you get new symptoms. I have been diagnosed with chronic fatigue syndrome (pretty much the same as post viral it's just doctors wait 6 months before they call it this and in the meantime you just get worse!).
Wishing you all the best!
monika32440 lilum
Posted
Google the cfs guide PDF by emerge Australia. It outlines a list of symptoms that aren't always mentioned for cfs. You will find many of your symptoms listed. Nerve issues and nerve pain are also apparently listed in the NHS cfs brochures.
Beverley_01 lilum
Posted
Hi lilum,
I didn't get a notification to say I had a reply for some reason! There have been reports where towns in America and a hospital in London had large numbers of people hit by CFS/ME , my memory isnt best right now but am sure an Internet search would bring it up or other members maybe? There was also a forum member on here where grandma, son and grand daughter all had the condition. More research needed into this condition for sure!
Hope you're doing ok at present.
Beverley