Post viral symptoms / syndrome

Hi Elle,

Ive had a lot of the same symptoms and also dizziness, back and neck pain, bloating and chest tightness. This started for me in April this year and ive had a number of blood tests which have not shown anything of concern. My doctor also told me I was suffering from a post viral illness and that it will eventually go away. As the symptoms have persisted for 6 months+ Ive now been refered to the CFS service and Im currently awaiting an appointment. I see cfs is also sometime referred to as post viral fatigue syndrome.

It is very difficult to deal with. However, Ive found there are ways of managing the symptoms- healthy diet, rest and cutting back on alcohol. Hopefully, the CFS service will be able to provide further help.

What you describe sounds very familiar - but if you think you could have been misdiagnosed may be worth going back for another opinion ?

Yes I think you probably have been misdiagnosed. I like you started with a fluey type virus left me eventually with all your symptoms plus a few more over time . Told I had CFS just live with it which I did . A nightmare and as David said feel you are dying at times. 19 years I have tried to get tests or scans or ultrasound or new blood tests , only now have I found a doctor who said we need to look at your thyroid result, as I have always tried to tell doctors and endos, hashimoto disease !!!!!! Don't just accept this ask for autoimmune blood tests . Don't be like me and just " live with it" . I may be proved wrong in your case but I think it is worth giving a try and hopefully your doctors will be more inclined to go by your symptoms not just tsh results .i am amazed at how many people have been misdiagnosed and told " we can't find anything wrong all tests are normal " and years later actually proved they have hashimoto s  not just a guess because they have run out of ideas!!!!!! Good luck to all sufferers to find what we are looking for ,an answer and proper treatment.

I am no expert on thyroid levels I was always told , no need to see results as I would not understand them. I have always been told all tests to do with my symptoms have been done on more than one occasion . My latest appointment with a specialist was yesterday I have not seen him since  1997who at the time was very off hand and rude  and sent me home with a flea in my ear saying my illness had absolutely no connection to my thyroid , every test had proved it.yesterday he told me I definitely have hashimoto disease and  was shocked that he could nt find in my records that I had ever been tested for autoimmune disease !!!!! He was shocked? ! Having said that he said  the ultrasound was the best indication that a person has hashimoto and mine confirmed it but to satisfy me he did the blood tests for it. So you see why I am skeptical about ME/CFS diagnosis . Just thought I would put another two pence worth in the mix might just help some else 

Ha. Ha David , if only life was that simple . No cure for hashimotos only treatment with thyroid hormones and apparently getting the correct doses of T4 and T3 is the difficult part but we live in hope the same as yourself. I am just so relieved that I have been proved right  after all these years of being  shouted at called stupid told it's all in my head I'm just depressed and treat very rudely by doctors and endocrinologists , when I tried to tell them my illness was something to do with my thyroid . I don't know what  it is like in the USA but here in the UK GP s and doctors go only by the blood tests for under and over active thyroid and when results come back normal that's an end to it your shown the door . The thing with hashimotos is autoimmune antibodies tests and ultrasound which I know from experience is like getting blood out of a stone !!!!! I will still keep an eye on this site tho and let you know how I'm doing ,  hopefully better than I have been for the last 19 years , good luck in your search for an answer to your   awful debilitating illness which I know ruins your life !! The list of symptoms for both illnesses are very much the same, Sylvia 

Hi Elle : )

My name is Ellen, I read your post and had to respond as I know exactly how you feel as I was diagnosed with Post Viral Fatigue after contracting a bad infection in October 2010. 

The virus was never identified, but it started in my right ear and spread over about 65% to the left side of my head. One day I went to work and suddenly it was like I was poisoned, my mind went fuzzy my heart was racing and that was the beginning of my nightmare! My symptoms were:

Severe extreme headache. 

Boths ears completely unable to pop.

Extreme dizziness and unbearbale pressure in nose, sinuses were completely inflamed and blocked up. When I looked up my nose with a mirror it was all closed up inside. 

Swollen glands on right side of neck.

Shoulders and neck swollen, tight and very achy.

Twitching muscles all over my face and body. 

Pins and needles in the legs, and feeling of heaviness and weakness in the body. 

Feeling of a weak heartbeat, breathing felt like extreme exertion. 

Sharp shooting pains in the legs and arms and back.

Constant nausea, lack of appetite. 

Aversion to loud noises, bright lights, general feeling of approaching death, anxiety and impending doom. 

Electromagnetic feeling when near TV's and other devices and a feeling of hollowness almost like sounds and people's voices were going right through me.

Sensitivity to junk food, fizzy drinks, coffee, alcohol, would make me feel awful within minutes.  

I will not lie to you the first six months were terrible. I remember one time I could not sleep for three days because my scalp was so tender I could not bear to rest my head on a pillow. After six weeks my glands went down. After three months, my left ear started to pop, but right one took about one year before it would pop. Dizziness started to abate after one year, but it was very slowly with a one step forward, two steps back yoyo experience. I still ocassionally get bouts of dizziness now, but it is maybe one day every three months.

Sharp shooting pains in my body started to decrease after a year, but also improved very slowly and did not stop completely until after two years. Twitching also started to get better around the same kind of period cycle. Again, I get twitching very rarely now, and even before I got ill I would get the odd twitch so I think that is back to pre-illness levels. 

However, I still generally feel unwell sometimes, especially just before menstruation. Sometimes I get a headache and feel tired and a feeling of mild mental confusion and only sleep seems to resolve it. When I first got ill I went to so many doctors and once my blood test results came back I was disposed off by my GP and told "anything that has a physical cause will resolve." Which I believe is partly true, but the depressing element is how long does that take. Also I was not prepared for the long road of anxiety and depression that I am still experiencing, the fear of death still lingers. 

This illness is very mysterious, and it is NOT in your head. There are too many cases for that to be the truth. One explanation from one nice doctor I met seemed like the most likely, which was that sometimes when you get an infection in later life, your immune system can overreact. This is because the body goes into a state of overdrive, and sometimes it struggles to distinguish between your nervous system and the virus meaning your own body attacks its own nervous system. 

It has now been four years since I got ill and I still get tired if I do not sleep eight hours or if I experience any deviation from my normal bedtime routine. I just want you to know that you WILL get better, but you have to be prepared that it may take a long time. I avoid junk food, have given up smoking and I can now drink alcohol but very lightly, but I have never gotten drunk as I am too scared. 

The only advice I can give you is to eat very well and drink plenty of water, when you feel tired sleep, but at the same time you need (when the time is right) to take some activity like walking to help for body to fight off the fatigue. I went back to work due to a manager pressurising me. I went back for 20 hours a week after three months of time off. I do wish now that I had gone back to work after six months and had extra sleep and recovery time. Avoid smoking and alcohol, take vitamin tablets, especially Vitamin B and Vitamin C. Take cod liver or hemp oil. 

Other than that there is no real remedy apart from time. It is very frustrating but you will get better over time. Trust me, every day in those first six months I was constantly in tears and wondering if my lungs would just give up, as I felt like someone was standing on my chest. But I got there, and you will too. Although I do still get a lot of migraines and tension in my shoulders and neck, it no longer affects my life to the level it did before and I do not feel weakness as such, just more irritability from the headaches and tiredness.  Remember to always look after yourself and put your body's needs first. For months before I got ill I was overworking myself and letting others bully me and stress me out. In some ways I am grateful for my illness as I no longer take this approach. I would also recommend going for massages, it does help you to relax and your body can only really heal when it is in a state of relaxation. I still am 100% convinced that one day by body will heal completely, I think the damage that a virus can do is extremely severe and underestimated. 

I hope that helps you and that you make a full recovery! Keep the hope alive, and I assure you that you WILL GET BETTER. Just take it one step at a time. 

David just an update just received vit D prescription for very high dose my tests show very low to non existent vit D . I have researched this and it all points to it is vital for health . An acquaintance who had all the symptoms informed me she is almost well again after taking  vit D3 20, 000 unit capsules 3 times a week . So I am off to chemist as fast as I am able lol to give them a try here's hoping . Hope you're doing ok .

 

David how long have you been taking coq10 ? And do you think it has helped you ? There are so many conflicting opinions on it I have nt tried it yet , as you know we are all hoping for any improvement and willing to try most suggestions that other sufferers have found improved their symptoms . My g p is puzzled as to why I feel so ill and told my husband " cant get to the bottom of it mr B , Sylvia is a bigger mystery than war time sausage " well I had to laugh. 

Beg your pardon everyone but can we get "incapacity benefit" for cfs/me if I got. Definitive diagnosis on paper. At the moment the doctors are calling my illness "post viral symptoms. It just sounds so wishy washy.

Elle