Post viral symptoms / syndrome

Hi there,

Just write down all your symptoms and explain how you are feeling. Take a friend or family member with you if allowed, they can then remember what is said.

Best wishes

B

Hello Sean,

Sorry for the delay in getting this back to you. Do you have a diagnosis now?

I hope you are feeling much much better.

Elle.

Hi everyone Hope all of you are feeling better. I am still dealing with these problems it was so bad the last few weeks went to the e.r. 2 more separate occasions.. My post came out rushed and I missed a few things as well. I've had 3 rounds of blood test since then nothing has come up been to my primary care 3 times have an MRI today have been asking my doctor for a cat scan but she tells me she doesn't believe my insurance will warrant one.. That left me shocked... She also believed it was anxiety which it isn't... Like I told her I wait 3 weeks to see you and within that time i have all these "crazy" feelings in my body I have never felt before then I finally get to see you and for the 15-20 mins that we meet I have to explain the hell I've been going through for the last 3 months or more. Like one e.r. doctor told me he said your body is going through these issues which get bad at times and then your brain starts to release chemicals which in turn make it worse. Basically fight or flight response.. But what I still don't understand is why does a panic attack go away in 10-39 minutes and mine last for 3-4 hours then I feel like crap for days.. I do not want to jinx myself but I have been feeling OK for 3 days not normal but compared to the last few weeks a tiny bit better I stopped eating certain foods coffee soda I do not take any medicine at all as it will make me feel way worse... I feel trapped in my body I look in the mirror at times and oh you look fine which is what I'm sure everyone thinks but little do they know I feel horrible from the inside out... I am still getting tremors through my body light headedness pains in arm hand leg chest back eye at random times.. I see stars at times when moving certain ways some days I just want to give up but unfortunately I have no family to help me out if things get rough so its put a smile on and deal with it... Which is bear impossible at times .. I hope you all feel better and if I ever find out the root of this issue I will post copy everything here ... I feel like there needs to be a spokes person for us.. Wish I had the money or political power to be that guy.. Thanks to everyone on here for there support!!!

Hi Sean , I think I ve told you before to have  the antibodies tests peroxidase and antithyroglobulin ?? Inner tremors lightheaded pain all over ( foggy brain , lack of concentration, no motivation , awful fatigue etc) all symptoms of hypothyroidism!!! Me/CFS similar symptoms . Have you had thyroid scan?? The best test is a trial of thyroid replacement . Autoimmune thyroiditis masks blood tests and will come back normal until your thyroid gland is completely destroyed and all the while you will be suffering a miriad of awful symptoms!sy 

I have your exact symptoms. Are you better?

Hello Chloe,

No I personally have not experienced cracking or clicking joints but I have experienced light sensitivity.

Do you have a diagnosis? Don't be afraid of MRI. I was petrified but it is highly unlikely they will not find anything - this is the problem with PVS symptons are scary but more than likely nothing will show up on the scan.

Like the majority of us, did your symptons come about as a result of a cold/infection/flu/ glandular fever etc

Hi Chloe,

I have blurry vision, light and noise sensitivity and yes, I get the clicking joints-not all the time. I had other issues however and not pvs linked to my cfs/me. I know it can be scary when these things are new and overwhelming. I recently had an mri scan and I explained how I felt. I wore ear plugs as well as having classical music (I really didn't fancy anything with too much of a beat!) The technician although quite assertive was reassuring and I nearly cried when she said thats it Beverley! It seemed to take no time at all. I was really proud of myself for getting through it. Take someone with you and plan a treat for yourself afterwards. I know Its hard but try not to think about it too much and try to think of something nice while you're having it done. Lets us all know how you got on.

Best wishes

B

Hi Elle, thanks for responding and for reassuring me about the MRI.

I had quite a bad flu in March, 3-4 weeks later I started getting pins and needles in my hands and forearms. At this point I was petrified I had Diabetes but I had been doing a lot of exercise after work and my Mum convinced me I had done something to my neck.

But this continued and moved to my feet as well, my Dr said it was just sciatica and gave me some amitriptiline which initially eased the nerve pain but then it stopped.

Around this time my joints all started to crack loudly and I started to get a full head feeling. I went back and forth to my doctors, booking with a different doctor hoping for more support. They have been awful, patronising and basically useless. They suggest it is anxiety. I pleaded for blood tests to be done, they have all come back clear apart from a slight raised infection. I have been so worried about stuff like MS I paid privately for an appointment with a neurologist. I saw him in July but my MRI is not until next week so the wait has been killing me. I have now been off work for about 8 weeks and I miss life so much 

We have just bought our first home together and are meant to be getting married next year. Everything is a mess now.

Sorry to hear you have been dealing with this for a while now. Xx

Thank you for your sweet words Beverley. I won't lie I'm not sure how I am going to cope with the week between having my MRI and meeting with the neurologist, I am sooooooo scared they will find something. I am trying to stay calm but it's hard. 

My Mum is coming with me so maybe go out for lunch afterwards or something.

i am sorry to hear you have also been suffering with all these scary symptoms too. I hope you are coping better than me xx

 

Hello Chloe,

I am happy you are going to have the MRI because it would put your mind at rest. I know it is hard but try not to worry. The thing is I had this problem for a year now and the truth is it will subside. My symptons are up and down but I promise you the symptons will not harm you. I was at a point when I thought what is I have pins and needles and one day I can't get out of bed ! But I realise I was feeding myself with endless worry. They are a pain in the - you know what but try not to feed it with worry.

Have you tried taking supplements etc to boost your immune and general well being? Try to do that. It is worth a try.

A lot of people re PVS / chronic fatigue syndrome and ME suggest taking cod liver oil, magnesium, vitimin b and vitimin D in various combinations.

Perhaps speak to your Doctor and ask him about supplements.

I know it's tough but hang in there. Just quietly accept the symptons in the background and they will dissapear eventually. I am not saying I am fully recovered but it does help a lot not to over worry about it.

Let me know how the MRI goes. I am not a Doctor but from what you said from initial investigations with your bloods it sounds like the same as me. The MRI will probably not find anything and you just have post viral symptons.

Hugs and healing

Elle x

Aahh thank you Elle 

perhaps I am crazy but I have spent about £450 on various different supplements which I am taking every day but they don't seem to be making a huge difference. I followed a list in a book I bought but I am not noticing much of an improvement. I was thinking about some sort of therapy but I am not sure. 

Thanks again for your reassurance it really does make me a little bit calmer.

xx

Hi Chloe,

It is anxiety provoking when our bodies are doing things we don't expect but, as Elle says, these symptoms are not harmful although they can be stressful at the time. If you have cfs/me like myself and a friend of mine, anxiety levels seem to raise more? I feel knowing this can be useful. Give yourself masses of reassurance and think of a time in the past where you have been scared but did really well? My last mri was on my back and In honesty-I hoped they'd spot something to explain my symptoms! But nothing was found. Is yours to explain the blurred vision? As this is a cfs symptom of mine. Tell yourself that its ok, that you're ok and in a couple of weeks you will be at the other side of this hurdle. Glad you're taking someone with you and that you can have lunch afterwards.

For me, I have children and my son leaves for university tomorrow. My cfs/me has meant I've had to rely on him for shopping etc so my life will change again when he goes with just me and my youngest left In the home. There is no doubt relationships change with this though not necessarily badly. People do find it hard to understand that's all. It sounds like your mum Is really there for you. I think for me, in the early days I struggled much more with things but am kinder to myself now and that helps me. I was obsessed with getting back to work and moving on at my usual pace.

Hope this helps

B

We are all rooting for you Chloe😀😀😀.

This site is a god send because only the sufferers know what other sufferers are truly feeling 😀😀😀

Try and have a super day today ok 😀😀😀 having said that I have twitching on my upper lip now Hahahaha and it is driving me bonkers.

I am having an MRI because all of the scary neurological symptoms I am having like pins and needles, buzzing, tingling, itching and then my eyes as well, I have had two eye tests both suggested I have perfect vision so don't know. 

I hope your sons move to uni goes smoothly for both of you. My fiancé is being amazing and my mum is trying her best, it's horrible because she is used to being able to make me better with a couple of paracetamol and a cup of tea. Xx

Aahh thanks Elle 

i must say this site is very comforting and so much more positive than other sites I have read!!

I have joined a Facebook group but I find it a bit depressing if I am honest.

Hope you are having a lovely weekend xx

Hi Chloe,

It can be scary with lots of symptoms and I hope the mri is helpful.

Got son off to uni ok and haven't quite acknowledged him not being here at present as my eldest daughter is here. She goes back to uni at the weekend! I'm trying not to think bout the extra things needed at present.

Am glad your fiancee and mum are supportive and yes, it can be hard for our loved ones to feel their own helplessness with his condition. Hope your worries about the mri are fading a little now?

B

Hi Beverley,

i had my MRI yesterday morning. I thought I had psyched myself up for it but when I got in the room 3 members of staff helped me on to the scanner and as they lifted the machine over my head I began to panic, I thought I was going to have to ask them to stop! Anyway I've got through that, now I have to stay calm until I see the neurologist on Monday for the results.

i am petrified!!!

Glad to hear you got your son off to uni, I am sure you will be fine even when your daughter goes back. Just take one day at a time. I should take my own advice!! Xx

Hi Chloe,

Fantastic! Well done you for getting through that. Things are felt so much more with cfs/me that any small achievement is a mile stone. You have got through this bit, which is great as I know you were dreading it. Did you get to go for lunch with your mum afterwards?

I know how nerve racking it can be waiting for results. Can you arrange something good for the weekend to try to take your mind off it? And again, can you take someone with you for the appointment?

One day at a time is good advice and in this condition essential! well, for me it is for sure : ) I know that everyone will be back around Christmas and I can ask people for help If I really need to.

Let me know how Monday goes, the time will hopefully fly by till then.

B

Hi Chloe,

How did it go on Monday?

B

Hi Beverley,

Thank God I got the all clear on the MRI 

I am pretty sure my neurologist thinks my symptoms are mainly down to anxiety but he said it could be a virus because they do "crazy stuff" his words not mine. 

Without a doubt Monday was the scariest day of my life, the other people in the waiting room were all so Ill,there was a man who was having chemotherapy whilst he waited for his appointment!!

I am going to see a Chinese herbal doctor on Friday so I will let you know how that goes. My arms and hands have been very weak this week which has been scary but I am trying not to be alarmed.

How has your week been?

xx

Hi Chloe,

I bet that's quite a relief! I know you weren't looking forward to it at all. I'm pleased it came back all clear for you : )

I had been too busy for a good few days (busy cfs standards wise anyway! ) and had such a nasty payback day on Saturday. My partner was here luckily (we don't live together) I was in such a state. I had numb hands and weird sensations going through my legs. It took me 20 minutes to eat half a sandwich I was shaking so much and my arms and head felt so heavy. I had a good cry and got out how scary it seemed. Then I was able to sleep a while and woke without the hand and leg sensations. I'm still not where I want to be yet this week but, am so glad I'm not as i was on Saturday!

I hope the chinese herbal doctor can help some how. I haven't tried anything like that myself yet so, yes would love to know what they suggest.

Like you say, try not to worry about the arm and hand sensation, things like these aren't pleasant but will hopefully be short lived.

B

Hi Chloe,

How did it go at the Chinese herbalists?

B

Hi Beverley,

Sorry for the delay in responding, I'm having a bad week 

The Chinese Doctor was ok, but I'm not sure, she seemed a bit puzzled by my symptoms, she said I have a very weak pulse and said my eyes looked soooo sore, maybe because I've been crying everyday for the last 6 months!! Anyway she said my liver is not working properly which is causing a constant infection, she may well be right but I can't afford to keep going back to see her, it's about £200 for a 12 day course of tea and tablets.

i caught a bad cold from my Mum this week and my fingertips have gone numb and my lips keep going numb. I'm so scared and fed up. My fiancé took me to A&E on Friday because he was worried about my lips and fingers. We waited over 3 hours to see a GP, who was lovely and disgusted that my own GP had pretty much left me to get on with this for all this time. She thinks I have Rheumatoid Arthritis or Lupas!! I thought I had been tested for these though?!! She has written to my GP to suggest I be referred to a Rheumatologist. I really can't keep going through this long wait to find out if I have something really scary again. The MS fear nearly killed me.

i am going to see my GP tomorrow and am asking for a new set of blood tests to find out what is going on. I can't go on like this.

Sorry for this extra long rant, how are you doing?  Xx

Hi Chloe,

I've had a few bad days too and problems getting onto the internet. I too ended up in A and E but, because I put my leg accidently through a fish tank ! (no fish in there luckily) I was so scared and had to lay down getting there and in the waiting room as my body just couldn't deal with it. I got plastic stitches and just felt very foolish. In regard your fingers and lips, I can only imagine how scary that was. I get numb hands and pins and needles sometimes and it can be a worry with all this that its not something else, I know that. Its best to try and stay calm and cry when you need to. I've had so many weird symptoms that appear and then just disappear again that I kind of have stopped taking notice of alot of them now. one is that my leg will just seize up as I'm walking and I end up limping the rest of my journey, who knows how it looks to others !!! 

 How did it go with the GP? Did you get those other blood test results yet? You're right, £200 is alot of money to find when there may not be a result? I hope you get the right diagnosis soon. If all this is basically CFS/ME then at least you know what you are dealing with thwn, if it is something else, equally, you know what you are dealing with.

I have a brain scan coming up as I have symptoms that can't be explained at present, one of which is why my right foot goes much colder than my left. the nerve test and spinal MRI came back fine. I feel its just to rule out other things more than anything will turn up still, these things are worrying until you get the results. 

No worries about the rant, we all need to get things off our chest sometimes 

B

Hi Beverly, sorry for the delay in responding, I'm having an extra rough time coping at the moment. I think I'm a bit depressed. How's your leg?? The fish tank incident sounds pretty scary!!

I was tested for Rheumatoid arthritis which came back negative and my neurologist confirmed I have already been tested for Lupus which was also negative. Thank God!! I still have no definitive diagnosis and every day my symptoms are different so I can never tell if I am making any progress. I am going to see a chiropractor tomorrow, not sure if she will be able to help me but I will try anything.

How are you doing? Xx

Hi Chloe,

Sorry to hear you're having a rough time with this at present. It can be frustrating and low mood can be real problem. I find when I feel low with it I tend to need to rest and cry a bit. Exhaustion really affects our self Image and self worth so, be good to yourself and allow yourself to be shattered, scared, whatever you feel. It will pass again but, can be awful at the time. Remember You 're still you just you with these frustrating symptoms.

I'm

It sent accidentally! : )

I'm ok. resting at present. The fish tank thing was scary and I was in shock with it. Mainly because I couldn't believe the glass broke. Seem so accident prone. I have a symptom that keeps popping Up in my knee when I'm walking so currently checking that out, xray etc but, my thought is It will be linked to the cfs stuff. I have brain mri on the 14th as other tests were normal and am expecting that to be too.

The chiropractor maybe able to help and i believe we can only try things to see as somethings work for some and not others. Let me know how you get on? Hope its helpful to you. Also hope you are out of this low period soon. See it as just a temporary position.

Best wishes

B

It sent accidentally! : )

I'm ok. resting at present. The fish tank thing was scary and I was in shock with it. Mainly because I couldn't believe the glass broke. Seem so accident prone. I have a symptom that keeps popping Up in my knee when I'm walking so currently checking that out, xray etc but, my thought is It will be linked to the cfs stuff. I have brain mri on the 14th as other tests were normal and am expecting that to be too.

The chiropractor maybe able to help and i believe we can only try things to see as somethings work for some and not others. Let me know how you get on? Hope its helpful to you. Also hope you are out of this low period soon. See it as just a temporary position.

Best wishes

B

Hi Chloe I had the same symptoms as you. In February I had a numbness in my left leg, my right eye had blur vision. I unfortunately fell against a door frame and was rushed to hospital, but they found nothing and let me home after attending A&E. Within 2 weeks my vision got worse as did the tingling and numbness in my legs. It was like standing  in a bucket of ice water but my legs were warm to touch. My balance and walking became difficult. I had been at the Doctors several times, low iron levels, virus, etc However, I went for an eye test and they could not explain what was happening with my sight so I was sent to the hospital, seen 2 Consultants who were baffled. Within 2 weeks I had to go to A&E as I was now walking like a baby, flat footed, however my vision was coming back (slightly) . I was taken immediately even though it was busy, I had a CT scan which was clear, my heart was fine, but they refused to let me go home and admitted me. The next day I had a chest and back X-ray, a back MRI scan which showed shadowing in my fluid spine. I was given a high dosage of steroids, which did help, this was on the Friday by the Monday I was given a Lower and upper MRI scan, a brain scan then I was given dye through my system and a further full body MRI scan. The same day I had a lumber puncture and numerous blood teats. The results were all clear? As was my bloods, my brain scan was fine but the shadows in my fluid spine was still there. I was sent home advising that they believed it was a virus infection and  my immune system was attacking itself. No treatment only paracetamol. I went for another MRI scan in August seen my Consultant in September to be told it is MS. My vision is back to normal, I still have the numbness in my legs and left hand, my whole right side is fine now but the feelings are with me all the time. The Consultants do not tell you much, but I started looking into things myself and you know what ? there are so many different causes and symptoms that are similar to MS. Please do not get stressed, you have to be poitive and just deal with things as they come. Life is just too short. I hope your MRI scan comes back clear Amanda x 

 

Hi Amanda, not sure if your message was meant for me or Beverly. I had my MRI last month and all was clear, my neurologist does not think my symptoms are caused by anything neurological. Sorry to hear about the issues you have experienced.

Personally my symptoms move around everyday so it does seem more viral than anything. Also my vision issues only occur if I watch TV or use my IPad.

i hope you are feeling better now x

Thanks Beverley, glad to hear your resting.

I spend my days home alone and I think the isolation and weird symptoms make my mind go into further overdrive and then the depression and anxiety creeps in. 

I will let you know how the Chiropractic appointment goes tomorrow. Xx

I'm delighted for you. You will just have to rest and heal your body. You will be relieved that all is well. 

Take care x x 

Hi Chloe,

Yes, being home alone can do that when symptoms fluctuate! I went out with my daughter earlier, My knee pain no where to be found but It was there yesterday? ! Do you keep a diary of different symptoms? Its probably one of those good ideas I could do with remembering myself : ) also, can you watch films when your on your own at home? I sometimes don't have the concentration. Its finding the balance of occupying yourself and not using all your energy at the same time.

Good luck tomorrow

B

Hi Chloe,

Just wondering how things are after the chiropractor? Did It help helps all?

B

Hi Chloe,

Just wondering how things are going for you

Best wishes

Beverley

Hi Chloe,

How are things with you?

Beverley

Hi Chloe, just wondering if you are better? I've had all these issues going on nearly 2 years. Have had every test prectically. I'm just waiting on thyroid scan tests. Wondering if you got better. Any info would be greatly appreciated.