Post viral symptoms / syndrome

With the risk of repeating myself, did you try acupuncture?

I did not, it may be the way to go. 

Thanks. 

Very interesting Ed and so good to hear a positive outcome. I think for those of us who experience this sort of illness at first it’s hard to deal with Doctors not being able to pinpoint a direct cause or diagnosis or successful treatment. Makes you realise the vast amount that the medical profession has yet to discover and the limitations of health services. You really do have to take your recovery into your own hands and let go of the anger, disappointment and frustration. Hard to deal with the fluctuating progression of recovery; good weeks followed by relapses. It can be thoroughly disheartening. But people DO get better! You have to be great full for all the things that you CAN still do and achieve - others aren’t as lucky. Keep up the positivity people!!!! Xxxx

I completely agree. I was passed between doctors and hospitals for 3 months which made the illness worse. 

I will update everyone when I do play sport again and work full time.

I struggled when I first looked online about M.E and this will be the case for many others I assume. Everyone needs to realise that people who recover from the illness fully will have no personal reason to post on this page as they are too busy enjoying life. 

I have spoke to 3 people in person about their recovery and although the time scales vary, al have got better. Some have to watch themselves still and others are playing football all week!  

I’m just trying to stop these muscle spasms and hopefully I can progress even further. 

Best,

Ed x

So since turning a major corner around end of February (went back to work part time, started getting my life back a bit, actually began to have some days and then weeks of feeling back to normal) I seem to be in a new phase of feeling ok for a while and then feeling off for a while. Today has been a rubbish day, first for ages. Seem to be fighting some kind of throat thing, sore ears and the old familiar aching and that flu like feeling. Just when you thought that bit was over! I’m trying to pace myself so I don’t get the boom and bust cycle. Anyone else get thoroughly cheesed off when this happens?! Of course you do. I’ve been taking loads of vit c and zinc too. Anyone else suffer much with their throat? Anyway, just needed to let off some steam! X

I feel the same. I’m researching mast cell stabilizers and anti-histamine teas. Sigh. 

Yes definitely. I ve had a step back also, but slowly improving again. It s really hard but if you keep doing all the right things ie eat well, sleep well, relax and pace yourself, gentle exercise, the body should heal itself but it s a long process!  I also suffer from recurrent sore throat and seem to get a bit worse when that happens. Try and stay positive. We will get there x

I think i got carried away feeling well, and failed at exactly what you say. Eat well, sleep well, etc. Back to square one. We will get there. 

These set backs seem to be quite common and although depressing, we can’t let them bring us down too much. A lot of people who ve gone through the same thing say that the periods of feeling well get gradually longer and even though there are a few lows, overall it does get better. I hope I can reassure you in some way, as you always seem to help others on this forum. Keep smiling x

Hi Ed,

Hope this helps. Muscle cells require enough water, glucose, sodium, potassium, calcium, and magnesium to allow the proteins within them to develop an organized contraction. Abnormal supply of these elements can cause the muscle to become irritable and develop spasm.

Maybe try upping your intake to see if it helps.

Beverley

Thanks everyone, these are all really reassuring things to hear! One day at a time.... x

Thank you  Beverly!

Will give it a go

Indeed. Sometimes though i get tired of trying to stay positive. I am deifinitely better. Right now i have rib and diaphragm pain, like after a workout (if you could work out your diaphragm). It is exasperating and i do not want to go to the doctor again. I am happy i weaned myself all the anti-anxiety meds, and don’t want any more drugs or tests. I am thinking, if it were serious, it would hurt all the time, not just in the evening.  Right?  Right. 

So when you have a bad day with CF what does it feel like? I had a really bad day yesterday and it has me concerned. I have been getting this internal buzzing/shaky feeling. I have to admit I have always thought things like CF and fibro were just anxiety or depression.. but I don’t know anymore..

Hi Carrie,

For me today is a bad day as I had very little sleep because of work yesterday. I feel a dizzy (like a drunken feeling) my right arm feels a bit heavy and buzzing like you and I get a small patch of pins and needles on my left thigh which comes and goes and my muscles twitch randomly also. I find that I am worse when I don't have a good night sleep. Hopefully better tomorrow if I sleep well!

Right! If it were something wrong like a mass or something it would hurt all the time because of pressure effect.

Ha! Me too, always so dismissive about these untractable illnesses. I learn d my lesson... A bad day is like, buzzying, twitching, brain fog (which sometimes you can only assess in retrospect), fatigue, sometimes stomach issues... general feeling of being off, and unwell.  Numb forehead, for me that my barometer.  I think i feel better when i drink electrolytes, there is one that you put in water, just sodium, potassium, and trace minerals, no vitamins or anything. But maybe it makes no difference. At least does not hurt. Also your mind is a powerful thing, i am open to the possibility that it is all somehow triggered by my mind (anxiety) although it feels pretty real, not just nerves. Who knows. Feel better. 

So its sounding more and more to me like CF that I have. Why haven’t any doctors even mentioned this to me? These are my exact symptoms. Also, do you guys have symptoms every day but they are just worse some days? Sorry about all the questions, I just need to know whats going on. It’s really grating on me not knowing..

Hi Carrie,

Bad days vary and depend on if you have mild, moderate or severe cfs/me.

The nhs website gives more information.

Today i have the buzzing/shaking in my body. I know ive done too much so am now resting.

Beverley

Yes, everyday the same symptoms but some days they bother me less.

Sometimes the worst part are sinuses, sometimes dizziness, fatigue, difficulty breathing...but none of them ever dissappears.

Hi, 

I had a bad day yesterday and today with a fuzzy head, extremely tired and poor temperature control. 

I am not too sure what triggers it and that’s the issue for all of us. 

Did anyone know about the awareness day on Saturday. I’d like to take part in other protests as this one passed me by! 

Hi Ed,

ME action and the ME association run events if you're interested. The #millionsmissing one this last Saturday is something they ran last year too. It's a global event and I sent my shoes to demonstrate in London. I think it's a great event as it highlights what the millions of us are missing: like our career, hobbies etc.

Beverley