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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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  • illkill19
    illkill19 Elle1234

    Posted

    I was thinking about going to the e.r today but I go to the Dr. Alot. And Idnt want them to think I'm just pretending or making it up of they find nothing so I'm just waiting it out until my actual Dr. Appt and It is hellsad. ...I went to the Dr alot because honestly a series of unfortunate things that happened one after the other... first I had bladder problems. They didnt know what it was. So i got a specialist.said Interstitial cytisis. That's done..then I had the sinus problems also referred to another specialist. . then I had the stomach problems.acid reflux heartburn and my hernia another specialist. and I got everything under control a little bit FINALLY and then this thing shows up.whatever this is after that "bronchitis"..I'm not trying to die but my body feels like i am going to die. I'm going to try to go to bed right now800 mg ibuprofen definitely isnot enough for this and I try not to take any if possible because it messes with my stomach.rolleyes it's been a looonng day you guys and it's not even close to being over for me. I apologize for being so pessimistic but this forum helps me alot not hold onto negative feelings. The most I've done today is put dishes away and go to the store where I felt like I was going to pass out. I hope these Dr's help me for real and don't just try to brush me off or say anxiety
  • MsGregor
    MsGregor Elle1234

    Posted

    Oh my god guys I'm about to cry....

    Been fighting for four years with all the symptoms described. I was told its stress, that Im taking on too much (full time job, socially active live, travelling, etc.) that I'm hypochondriac.... All my life I struggled with chronic cystitis and sinus infection, but also very recurring candidiasis. After that about 4 years ago the first horrible symptom was tiredness, and dizziness. Then my vision got worse, my sleep became zero repairing and super light, then stifness in my neck and back, dry eyes, recurring sinus infections and galbladder problems...until I developed chronic IBS. The last two years I've spent all my energy on healing my gut disbiosis since its the most alarming and disabling part of it all. I am slowly getting better thanks to probiotics, glutamine and a plantbased diet but Im still very unmotivated with the rest of my symptoms. As I transitioned to veganism I felt my energy skyrocket and my mood improve as well as my vision, but its getting worse again lately. I try not to "push it" as much lately on the social side but I sometimes feel like the more I rest and stay in the worse it gets. I totally have what someone here mentioned, dizziness especially in the morning, everything seems harder after resting or sleeping. I dont know what to do. Im really demotivated. I am gonna stick to probiotics, glutamine, vitamine d and b12 (due to veganism) and HighCarbLowFat diet but Im so scared to fall into depression...Im already thinking on giving up work and going back home (I live abroad). Any thoughts from veterans really welcome. Glad to have found this group. All the best to you guys!

    • Beverley_01
      Beverley_01 MsGregor

      Posted

      Hi there,

      Sorry to hear of the hard time you're having. Have you been told its definitely cfs/me or Have you asked your doctor for further testing?

      Beverley

    • MsGregor
      MsGregor Beverley_01

      Posted

      Hi Beverley, missed your answer. Thanks a lot for replying. I dont have an official diagnose no. Im testing further but nothing conclusive as of yet. sad
  • illkill19
    illkill19 Elle1234

    Posted

    Hey u guys. I went to my Dr's. Appt yesterday. .. not very helpful at all. I'm actually pretty angry...first of all everything came back normal . No hepatitis. No high liver enzymes. No more fattt liver..except he said they found inflammation in my blood tests...he was unable to provide where the exact location of inflammation is.I also told him about the extreme fatigue and Dizzy Ness.shaky Ness and extreme hunger episodes.. .he just shrugged them off. Told me at this time we won't do anymore blood tests.... my whole body aches and it's just a very frustrating thing to deal with..he had no knowledgeable answers that helped me get to a solution. . All he said was..okay well I don't think we need to do anymore blood tests at this time and I'll put you on Tylenol. Make sure to make an appt in another month with your primary Dr. ...all I did yesterday was sleep. Sleep all day. He gave me so much Tylenol that it's not even funny..I told him that the 800 mg of ibuprofen he prescribed didn't help at all for the body aches.. his solution was the Tylenol. . There's obviously a reason for inflammation but he didn't look to mu ch into it all he did was give me stuff to fix the symptoms not exactly the underlying cause.. didn't do thyroid tests. Not adrenal gland tests....I'm no longer going to be going there..i will be trying to see a holistic Dr. Since they feel further blood tests aren't necessary
    • Beverley_01
      Beverley_01 illkill19

      Posted

      Hi there again illkill,

      Sorry it feels so disappointing for you and it doesn't help when you feel so exhausted to gauge what Is happening. It seems at present, with a positive for inflammation, he didn't see the need for further tests. If it is PVS, then there Is no cure but to ride it out. I know Its awful, its boring, frustrating but, at present, your body needs to recover. Rest Is important at this stage. I think that its bout 4/5 weeks since this all started? At this point It s too early to say Its cfs/me as you need to have symptoms for either 3 or 6 months I believe.

      Saying all this, ask for a second opinion If you feel it could be something else that is causing symptoms. After all, it is your body and your health.

      Hope you get some relief soon

      Beverley

  • chris1303
    chris1303 Elle1234

    Posted

    Quite uncany similarities to my story here. Briefly I had flu. Usual week in bed. Another week to recover. Went dizzy. ENT said labrynthitis. I got worse. Pins and needles, thick foggy head, vertigo. Head MRI clear. Neck MRI showed spinal cord white matter and some cervical wear and tear. Thyroid TSH at 6.5, Neuro said not MS. Radiologist no stroke etc but mentioned b12 levels possibly affecting cord. B12 was ok though a little low, tested for lupus, lyme etc etc. GP said anxiety! Neuro said possible transverse mylitis as a result of a post virus auto immune attack. I also have l'hermittes sign a classic indicator of spinal lesions. A year later I;m no further forward, the pins and needles have become muscle twitches etc, I have a tight face like sunburn but with no pain, I have weird neuro symptoms but nobody can resolve this. I have been scanned from top to bottom, they took 15 phials of blood last time and aside a slightly underactive thyroid and these weird lesions in my cord that no one can agree on I am in apparently perfect health! I could go on but my story seems so similar to others here and the symptoms following a familiar pattern I wonder if it could be "just" a post viral auto immune issue?   
  • ranjeet58696
    ranjeet58696 Elle1234

    Posted

    Hi Elle, I am 50yrs old. I recently experience all yr symptoms..How are you feeling now?? I pray much better.

    I need to ask...do you get jaw pain?. Some of my friends say its a lead to a heart attack..I don't know. Most probably could .

    Do you exercise ? Does it have anything to do with weight. I am oversized. I go walking. Then I get tired. And its affected my work a lot. Some say I am stress?

    • MsGregor
      MsGregor ranjeet58696

      Posted

      Hi Elle,

      Im 28. CFS and IBS sufferer. I have jaw pain all the time...it leads to a heart attack?? why?

    • ranjeet58696
      ranjeet58696 MsGregor

      Posted

      Hi there? Are you asking me if jaw pain leads to heart attack. I have read that its one of the symptoms. I am more worried on the rest . The worse part is waking up feeling numbness in legs and hands. Specially my arms.
    • sylvia17461
      sylvia17461 ranjeet58696

      Posted

      All these symptoms are hypothyroidism , thyroid blood tests are unreliable, the TSH blood test range is set too high!! As to the jaw pain this excerpt might help ," normally hyperthyroid and hypothyroid disease does not cause localized pain in the throat neck or referred pain to the face or dental structures . One exception that occasionally occurs is pain that arises from Hashimoto's thyroiditis which is an autoimmune inflamatory disease of the thyroid gland . It can cause painful or tender enlargement of the thyroid and in a small percentage of cases pain can be referred into the mandible or other submandibular sites . NOTE: the mandible is the lower jaw , submandibular is the area beneath the lower jaw !" The best test for thyroid disease is a trial of thyroid replacement hormone if you can find a doctor who will diagnose by signs and symptoms and not the normal blood tests ! This could prove difficult as doctors will not , in most cases , ignore what is said to be the gold standard for diagnosing hypothyroidism. If you have hypo hashimotos is the biggest cause And blood tests will almost always come back from the lab normal until your gland is so damaged or completely destroyed !! Hope this helps 
    • MsGregor
      MsGregor sylvia17461

      Posted

      I dont really understand. Which test do you recommend to detect that hypothiroid?
    • sylvia17461
      sylvia17461 MsGregor

      Posted

      The TSH and T4 blood tests were developed by dr Robert utiger and these became the gold standard for all GP s and endocrinologists for diagnosing hypothyroidism . Before this it had always been diagnosed by basal temperature signs symptoms and touch, and the treatment was a trial of thyroxine ( T4) if your symptom improved or disappeared all together you were prescribed it for life . Nowadays if your thyroid bloods are normal thyroid disease is dismissed and you are left to struggle on with the most dibillitating symptoms . Every one is different but the main symptoms are chronic fatigue , dizziness , foggy brain , lack of concentration, headaches, spaced out feeling, pins and needles and numbness in arms legs , inner tremors, insomnia , no energy after sleep , carpal tunnel syndrome, you may have bladder or bowel problems , sinus or stomach problems , dry skin dry hair , hair loss , poor nail condition , you may have trouble with swallowing you will have pain in muscles and joints . These symptoms are much the same as for CFS/ fibromyalgia and when your blood tests for thyroid are normal you will be told ( in my experience and research) you are suffering from anxiety there's  nothing wrong it's all in your head you are imagining things and you're just depressed!!!  Dr utiger stated him self ' I hope doctors are not going by these bloods alone and are looking at signs and symptoms and prescribing Triiodothonine ( T3) . Natural dessicated thyroid hormone was the usual treatment for years before the new blood tests were developed and still are , but the usual one now is thyroxine( T4) . As I said everyone is different so what cures one patient will not cure another patient it is a case of trial and error . The blood tests for hashimoto disease are peroxidase and antithyroglobulin which are very  very rarely done . Also a thyroid ultrasound would show any inflamation or nodules or shrinkage . If you have had tests and they show inflamation and your doctor does not know where this inflamation is , it could well be from your gland . Hope this helps MsGregor or rangeet or any others suffering from this awful illness .
    • MsGregor
      MsGregor sylvia17461

      Posted

      Thank you so much for the detailed explanation. I am getting an ecography of the thyroid soon. Would that help identify it?
    • Beverley_01
      Beverley_01 ranjeet58696

      Posted

      Hi Rajeet,

      I have cfs/me and get jaw pain and the pain/numbness in arms arms/legs. Usually at different times. I have recently cut back on exercise, rest is really important with this condition.

      Best wishes

      Beverley

    • sylvia17461
      sylvia17461 MsGregor

      Posted

      I have obviously given information that the moderator does not like !!! I am only trying to help fellow suffers become well again l will cut it short. The ecograghy is the same as an ultrasound , it will show any swelling ( goiter) cysts , nodules,shrinkage, and or inflamation . This inflamation could be what has shown in blood tests . This ultrasound could confirm thyroid problem possibly hashimotos . 
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