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Post viral symptoms / syndrome

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Elle1234
Elle1234

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

464 Replies

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  • ItAintMono
    ItAintMono Elle1234

    Posted

    I seem to be suffering with the exact same as you.

    According to my doc, having inflamed tonsils and neck nodes for 3 weeks is quite common this flu/virus season.

    It's the dry mouth that's driving me the maddest though.

    • kenny26128
      kenny26128 ItAintMono

      Posted

      I hate the dry mouth and throat. Only relief I got was biotene mouthwash and sucking on cough drops all day. 
    • ItAintMono
      ItAintMono kenny26128

      Posted

      I'm not the only one then? That's somewhat of a relief, thank you Kenny!

      My dry mouth seems to be improving a little actually, but still night sweats and also a muscle cramp last night. :-( 

      Been told to give it 2 weeks and see what happens. Then more tests I assume. :-D 

  • ItAintMono
    ItAintMono Elle1234

    Posted

    Did anyone else have swollen tonsils and/or night sweats?
    • Guest
      Guest ItAintMono

      Posted

      Yes, I had both. My tonsils still get inflamed every now and then but for now my nightsweats have calmed down. 
  • lilum
    lilum Elle1234

    Posted

    One year update. I can’t believe it’s been a year since i started this ordeal. I figured, i’d give all an update. I am now probably the healthiest that i have ever been. I eat clean, exercise regularly, no coffee or alcohol, and i take care of myself. I feel generally well, except for occasional episodes. Whatever it was, because clearly it was something more than the umbrella diagnosis of anxiety, seems to be subsiding.  In this year, for this specific issue, i saw a family care doc, an infectious disease, a gastro, a neurologist, a cardiologist, an eye doctor, and a urologist. I had all possible infectious disease tests, a list so long that it rolled to the ground (lyme, hsv, leptospirosis, some diseases you’ve never heard of...) a chest and spine x-ray, an abdominal ct scan with contrast, head and neck mri, endoscopy and colonoscopy, holter monitor, an echocardiogram, some eye tests, stool and urine samples, an extensive neurological exam at Mass General... and probably some stuff i forgot. My symptoms morphed through the year but they were in general:

    brain fog

    abrupt weight loss (19 lbs in a bit over a month)

    insomnia

    extreme bouts of panic

    muscle twitches (benign fasciculations my (_|_), i had thousands of them in a day, and now they are all gone)

    disruptive jumps right before falling asleep (they have a name, i forgot)

    dizziness

    chest pain

    shortness of breath

    loss of ankle reflexes

    affected fine motor skills

    occasionally bulging veins

    random aches and pains

    buzzing arms and legs, like a tingling or tremor inside my limbs

    nausea

    forehead numbness

    left side weakness (eyesight included)

    hair loss

    slightly elevated glucose, fasting

    Alcohol and coffee made it worse. So did any fermented foods. I can still trigger an attack if i have a salad with vinegar or anything pickled, yogurt, etc.  Probiotics were terrible. 

    I was diagnosed with post infectious syndrome, blastocystis, enlarged aorta, premature atrial contractions, neuropathy, possible SIBO, and i found that many of my symptoms matched those of IBS/crohn’s sufferers, fibromyalgia, histamine intolerance,  panic disorder, sprue, botox side effects and  a myriad other diagnoses. What helped:

    klonopin.  For six month klonopin was my best friend, 0.5 mg before bed.  I had a very hard time weaning myself of it though, and only because i am truly wilful. If you take it, go slow and taper it off over a long period of time. It definitely helped me sleep and eat  again. But look up withdrawl symptoms and increased risk of dementia for long term users. I want to caution anyone who goes that way. 

    Acupuncture: the biggest difference. Apparently my spleen meridian was very weak  when i went first, I was kind of suspicious but i am sold, will probably do it for the rest of my life. 

    An app which shows you the hystamine content of foods. Worth every penny.

    exercise: even very intense exercise, hiit, intervals. Initiallly i’d feel worse, but long term it helped, no doubt about it.

    zyrtec, toward the end of the year. 

    Vitamin C, and orange juice, freshly squeezed

    what did not help:

    Stomach acidity meds: made it worse

    supplements - zero effect or made it worse

    quercetin - no difference

    ativan - nope

    bisoprolol - not really

    so how am i these days. Pretty good, with occasional light bouts of twitching or insomnia, if i do not watch what i eat. Still no alcohol or coffee, so boring, but oh well. 

    What was it? I have no idea. I hope it is gone. 

    Wishing all good health and blessings. 

     

    • lilum
      lilum

      Posted

      Oh, i forgott POTS and ehlers danlos syndrome, and salt pills. Took some for a while, maybe some helped.  Mint tea good for the stomach. My ipad is acting up, can’t type properly. 
    • ruth13083
      ruth13083 lilum

      Posted

      That’s so great to hear a positive story and outcome! Thank you for taking the time to give an update, so many people never come back and you always wonder what on earth happened to them!? Just goes to show that sometimes there often isn’t a definitive answer but that things get better slowly  in time. I wish you continued good health!
    • zlatka1990
      zlatka1990 lilum

      Posted

      Hello, one year for me too! Can't believe I managed to survive and actually feel a little better. My symptoms are subsidising slowly too. Still have: dizziness, sinus pressure and one clogged ear, feeling of having dust in my lungs, shortness of breath and rapid heartbeat when walking for more than 5 minutes, difficulty waking up in morning. What improved and I barely have it now: eye floaters, brain fog, dehydration, panic attacks, nausea, stiffness of muscles and joints. I am still light sensitive, in general sensitive to stress, smells, junk food, etc. I am using supplements, magnesium, vitamins B and C, herbal teas; going to massages. I am able to have a more normal everyday life, as long as I take care of at least 8 hour sleep, eating healthy and reduce stress levels. My last diagnosis is EBV caused postviral syndrome.

    • Guest
      Guest lilum

      Posted

      Hello,

      My situation mirrors yours I feel. I am one year down the line and still struggling. Hopefully in the next few months I can improve even more. 

      Let’s hope everyone here finds a balance where life can be enjoyable again 

    • deirdre01438
      deirdre01438 lilum

      Posted

      Hi lilum, I have EDS also and I wondered if all my symptoms were linked to it. Such an awful lot of symptoms. Glad you are doing better
  • kat2016
    kat2016 Elle1234

    Posted

    Hello all,

    Thank you for the updates and positive stories, it s so good to hear there s a light at the end of the tunnel smile nearly one year for me too. (11 months) and also slowly getting better.

    I should mention I am a doctor myself and that hasn’t helped and seeing a myriad of specialists like many of you has not helped either! I feel very let down by my profession especially the lack of understanding. All tests have been normal including 2 MRIs brain, spine, countless blood tests, EMGs and nerve conduction studies.

    My symptoms started 6 weeks after the birth of my daughter and very similar to a lot of other people on this forum with pins and needles in limbs, arms and right leg weakness and fatigue, muscle twitching, tremors and jolts in bed at night, later the dizziness developed along with cold sensations intermittently in the limbs, loss of fine motor skills in fingers, feeling of stiffness in digits. The symptoms seem to cycle i.e a couple of days the pins and needles were the dominant symptoms then it was mostly weakness, then mostly dizziness etc...

    These days I have days when I feel pretty normal, and when symptoms occur, they don’t last for too long and feel less severe.

    My own theory about this whole thing is that physical, emotional stressors or a combination of the 2 has a knock down effect on the immune system which allows reactivation of dormant viruses in the spinal cord such as EBV or HSV and creates inflammation of the peripheral nervous system. It s only a theory though. 

    What seems to be common to all people who recover is that a holistic approach needs to be taken with a good clean diet with no processed food, good sleep hygiene, gentle exercise, along with other activities such as meditation, yoga, or other alternative therapies, and be kind to yourself with a positive attitude as much as possible.

    That certainly seems to help me although the progress is slow, there is definitely progress.

    Good luck and good health to all.

    • deirdre01438
      deirdre01438 kat2016

      Posted

      Hi Kat2016,

      I just had to message you. My symptoms started when I stopped birth control. I had everything you mentioned and I still have some symptoms ongoing. I note yours started after giving birth. I know another lady who sadly had all the symptoms after suffering a miscarriage. I strongly felt mine was hormonal and I still do. I am currently awaiting my period and my fingers and feet are sore and stiff. I spent so long trying to explain to doctors how they felt. In the beginning they werent too stiff but had lost power that felt odd. Anyway, I'm convinced I am in perimenopause.... although I am only turning 36. I had every symptom you mentioned, I still get dizziness, nausea, chest pains, stiffness and terrible lower back pain. Its awful. I went to every doctor I could think of and all wanted to perscribe meds that suited their field. I believe in my heart its all hormones for me.its hell though . I hope this helps you in some way.

    • ruth13083
      ruth13083 kat2016

      Posted

      Hi all,

      Yes great to here positive stories. People are recovering but it’s a slow and bumpy process. Just over 8 months for me and a colleague who both came down with a gastro illness last August. Diarrhoea, bloating, indigestion, nausea all morphed into headaches, body aches and a flu like feeling with fatigue. Both had months off work and now back part time. Much better than I was but symptoms still seem to cycle round. Starting to have days and now weeks where I feel almost back to normal then some things creep back in but milder. So comforting to hear about others with similar and from a doctor! I agree with all that you’re doing Kat, I’ve also just started yoga and getting back to running. Keep up the good work everyone! Xxx

    • ruth13083
      ruth13083 deirdre01438

      Posted

      And yes Deidre, horrible lower back pain has also been one of my symptoms. Almost like a gnawing period pain but in lower back. That has improved over time. 
    • lilum
      lilum ruth13083

      Posted

      Yep, for me is my middle back, not upper OR lower. Where the bra closing hooks go. I started wearing bralettes to avoid the pressure, but tonight i can barely move. If i lie down i am ok, sleep ok, by morning ok. Just gnawing achy pain in middle back.
    • kat2016
      kat2016 lilum

      Posted

      Hi all,

      I ve been having a bit of a relapse for no obvious cause! Feeling a bit down as last week I had 3 days of feeling pretty good and normal and now back to dizziness, sore and weak arms and random pins and needles! Argh... when will this ever go away?? I know recovery can be bumpy but it s so depressing... Hope everyone doing well! X

    • lilum
      lilum kat2016

      Posted

      Hi kat, website did not work this morning. Yes, i had a relapse as well, just after i posted how awesome i felt. Now i am better again. Sleep, don’t stray from your good habits (i had had decaf and chocolate croissants...). I am trying the baking soda thing, a study tying it to anti-inflammatory effects just came out, and also feel better when i drink electrolytes. Or maybe it makes no difference and we just have to wait. Hang in there. 
    • kenny26128
      kenny26128 lilum

      Posted

      Check out ground earthing sleep mat. My pains have slimmed down a lot since using it.   Amazon. Read the reviews and even side effects. The side effects are interesting. I was skeptical at first. But it is working and helping. I’m nowhere near full recovery but this has helped with a lot of symptoms. 
    • lilum
      lilum kenny26128

      Posted

      Um, i would not say depression, definitely anxiety. Massive bouts, like a complete freak out, usually after i had some kefir for example. I am well aware that sounds odd, but that is what happened. Forehead numbness, heightened sense of smell (i could smell a salad or a glass of wine across the room), intolerance for loud noises, an inability to interact with people or make eye contact... i mean i was able to remain relatively functional and go to work through it all, so i guess maybe it was not that bad, but it felt very bad to me and it took a toll.  I am intrigued by this baking soda theory and the vagus nerve and the immune response... but i am a sucker for anything i think might work, so best if you do your own research. Good luck. 
    • zlatka1990
      zlatka1990 lilum

      Posted

      Same happened to me with kefir, too. It feels like it dehydrates me and sometimes I get nausea too, just a couple of hours after eating it my tongue and throat get very dry. It's so funny now because at the beginning everyone was telling me to take it because of probiotic effects to immune system. I used to drink baking soda with water two times a day but didn't notice significant changes. How do you take it, and do you find it helpful? Thanks smile

    • zlatka1990
      zlatka1990 kenny26128

      Posted

      Although it's very frustrating, I didn't feel depressed, but I had anxiety and something similar to panic attacks. I used to overreact to stressful situations and had major mood swings. These strange body reactions had so much effect on me and it all came with the illness, I haven't had anything from this before. So I hope it will go away as the symptoms improve. I try to improve it with herbal teas with calming effects, such as melissa and mint.

    • lilum
      lilum zlatka1990

      Posted

      I started with the 1/2 tsp morning and evening with water, but I think I will just do 1/2 tsp evenings. At least for a week or so. I feel no difference either yet. Isn’t that sad, we’re desperate for that magic pill and there isn’t one. My acupuncturist is traveling, I do feel that acupuncture helps me the most. I fall asleep on the table with all the needles wobbling around, and I wake up rested and clear. 
    • lilum
      lilum zlatka1990

      Posted

      I drink Saint Johns wort tea, I. Germany it is prescribed for kids w anxiety and depression because it’s so mild. Nothing like prozac or supplements. Just tea. 
    • kat2016
      kat2016 lilum

      Posted

      Hi Lilum,

      I m tempted by acupuncture but slightly scared, does the treatment just relax you or is it meant to balance energy/meridians etc?? Don't know much at all about eastern medicine, but definitely intrigued!

      Will also try St Johns wort tea. I ve tried valerian root and gentian in the past (Kalm) which was also quite effective at relaxing and very mild as it s just plants.

      Has anyone experienced a strange tightness in the throat as part of their weird symptoms? I seem to have that intermittently lately and it s very unpleasant as it s almost as if I have difficulties speaking when it s there! Slightly better overall than a few days ago though... some positive. Thanks for all the comments and on going support, it 's really great to be able to speak to people going through the same issues.

       

    • kat2016
      kat2016 kenny26128

      Posted

      Not dumb question at all, it s so poorly understood. I can't say I got depression either (just feeling down because of these weird symptoms rather than depression being a symptom) but definitely got anxiety (still occasionally do) Take care everyone x

    • lilum
      lilum kat2016

      Posted

      With the risk of sounding completely hypochondriac... yes. Either tightness, or hoarse voice. No, it’s not anxiety. I think it’s related to the muscle twitching and neuropathy in some way. I knew little of acupuncture as well. It balances whatever is wrong with you, through meridians and all that. So kind of arcane. It also relaxes me, when done by a reliable acupuncturist. (The first one I went to was not so good.). But if you google the newly found organ, the interstitium, and its connection to acupuncture, maybe it all makes sense. Maybe we have some re-activated virus, or an immune response, which resonates in the interstitium, and which acupuncture can reach. Either way, it’s working for me. Good luck, I hope you feel better soon. 
    • lilum
      lilum

      Posted

      I meant, the throat is not anxiety. Yes anxiety attacks, had those (see above reference to k-pin). 
    • lilum
      lilum

      Posted

      And I might try cranio-sacral something. I forget. People say it works. I’ll try anything at this point. 
    • kenny26128
      kenny26128 lilum

      Posted

      Well I’m gonna add this to my list. Thanks!!
    • kenny26128
      kenny26128 zlatka1990

      Posted

      Thanks for the responses. I was having panic attacks too. I didn’t start the depression till after taking Zoloft. I think I was on my 5th day of being on it and I was playing a game with my wife and 2 sisters. Then out of nowhere I felt it swallow me. It was the strangest feeling. I went from being ok to wtf is going on now?!!  My doctors here really F’ed me up good with that. I feel that made me worse. Hopefully I’m in good hands now.   I’ll keep you guys posted if I figure anything out
    • lilum
      lilum kenny26128

      Posted

      Yeah, I don’t think SSRIs are the answer. But you need to be very aware of your moods. Like, when it goes down, realize it’s just a mood. Like a passing cloud. You are still you from an hour ago, when everything was ok. It’s hard, I know. Good luck. 
    • kat2016
      kat2016 lilum

      Posted

      Thanks Lilum, I do not consider myself a hypochondriac either, but throat tightness seem to be associated with anxiety/depression. i think it s those symptoms that cause the anxiety (or it s also a part of it) but certainly not anxiety as the cause of all of this, as some GP seem to think and branding us anxious, stressed, hypochondriacs!! Will try anything as well and being very open minded. Thanks also for your advice on vagus nerve/ interstitium, i watched a few YouTube videos on this, it s very interesting! 
    • zlatka1990
      zlatka1990 kat2016

      Posted

      I don't know why but I feel so strange when walking, especially when walking slowly while talking to someone. It feels like I will lose balance, my ears get completely clogged and my lungs struggle to breath and my knees and leg muscles start to shake. It feels like my blood pressure gets so low at the moment, like I start to lose concentration and my head gets so foggy and nothing helps but sitting or lying down. Although a lot of my symptoms have disappeared or improved, this one, which is the worst in fact, still remains. Did anyone have this? Thanks smile

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