Hi again Sean,
Please go easily with the Co-codamol. It's not so much the dose of the codeine, which isn't too high yet, but it's the paracetemol. Depending on how much you're taking, those 500mg of paracetemol can quickly add up and cause problems, especially on the liver. Plus if taking it for headaches all the time, people can actually get rebound headache when it stops.

It's a shame the Propranolol caused such a severe reaction. I have read that it can do that in rare instances. It can be a very helpful medication with few side effects for most people. I am prescribed Propranolol for social anxiety on a prn "when needed" basis. My daughter as well although hers was prescribed originally when she was having classes at uni where she needed to speak in front of everyone.

Are you still studying or working at all?

It's difficult when doctors can't name an illness and just take it all away. You have so many symptoms and it must be very difficult for you. I personally wouldn't give up on the ME/CFS route though, but that's just because I've seen what my daughter has gone though and still struggles with it all to this day.

There may be no specific "cure" for these syndromes (PVS or ME/CFS) IF that's what is going on, but there certainly are ways that doctors can help. If for some reason along the way a doctor suggests CBT, then that's actually a good thing. Well, it certainly helped my daughter a lot to get moving again.

Don't give up on study even if you just do one course and that's online. You're obviously smart and it would be a shame to stop everything as hard as that might seem right now.

Rest when you need rest. Get help with your sleeping problems. I see that's addressed in the CFS information and it's a big issue to start with as that restless sleep pattern is very unhelpful.

bacme.info |
British Association for CFS/ME

PDF-BACME working group on severely affected

Hi Lara again,

Yep, I do worry about taking co-codamol all the time daily, with the amount of paracetamol I'm taking. Paracetamol or any regular painkiller has no effect at all on my symptoms, so I'm taking it needlessly for the sake of the codeine. I haven't yet experienced a rebound headache so far and hopefully I never do. I take codeine mostly to relieve the horrible head symptoms I get from feeling constantly sick all the time, more so than for actual pain relief.

I will never take propranolol again after the scary side effects I experienced, however I'm glad to hear that it's been working well for your daughter and yourself.

No, I do not work or study at all now and currenly claim disability benefits. I also live with my parients. I was doing a college course in sound engineering and was less than a week away from passing my course. Then one morning, I walked into college into college, felt some sort of cold or flu coming on, and suddenly couldn't do the work I had to finish off. My mind was completely blank and my brain would just hurt and strain itself whenever I tryed to think at all. That was basically the start of this nightmare and since then it has only gotten worse as time goes on.

For a good while at the start of my illness, I was managing to power though my illness and still live my life somewhat, being determined that I was going to beat this illness and not let it stop me. I did another, easier college course, but as I futher deteriorated, I had to give that up too. I was also taking driving lessions which I soon had to give up, with me almost crashing the car on my last lesson. After this, I spend a lot of time playing in bands, since my musical abilities weren't affected at the time. But found myself having to give this up too with my worsening health. There's only so far you can go powering though like this untill your deteriorating health finally catches up and you just succumb to your ill health.

There is no point in thinking about any more study just now. This illness has made a complete mess of my brain and can barely function now. Even basic activities are becoming more of a struggle the worse this gets. I used to be smart and had many unique skills that could have been put to good use in a future career as a session musician (I play keyboards), music producer and composer. I had plans to start my own musical project too and already have about 2 albums worth of finished recorded material which I had put loads of work into. Potentially, I could perhaps regain these abilities I once had if I address the cause of my illness and manage to find some way of treating or alleviating it.

I am almost positive that my condition isn't anything along the lines of PVFS, ME or CFS. I was on a forum for people with ME/CFS for a while, but no one there could give me any helpful advice, since my symptoms arn't remotely like these conditions. And the people on the forum don't think that it's ME/CFS. These are generally fluctuating conditions, generally cause a lot of physical complains (rather than mostly brain symptoms) and a hallmark symptom is flair-ups (called Post Exertional Malaise, PEM) often trigged by over-exertion or any kind of intollerences or sensitivities the person with the condition may have. There are generally some ways of managing the symptoms with these conditions, such as avoiding certain foods that trigger the symptoms, or taking suppliments that help symptoms improve.

My current situation is almost a contradiction of ME/CFS. Nothing I've tried in terms of diet, exercise, suppliments, medications or any kind of lifestyle changes has had any effect on any of my symptoms. My symptoms are immune to everything and just gradually get worse with time, almost like some sort of degenerative condition. The speed of the progression isn't affected by anything either. At least with ME, you can tell that something is temporarily holding you in that state and appears to be reversable somehow, or can be managed somewhat. My illness on the other hand just seems to be a permenant degradation which is much more worrying. I just hope I'm able to find some answers soon.

Hi Sean,
Well, I sure hope you're able to find some help for your symptoms soon.

It may be time to get a second opinion from a different doctor if that's possible.

Hopefully some other members here might have some suggestions for you.
All the best to you.

Thanks Lara, hopefully some point this year I'll finally make some progress with diagnosis and treatment.

I am currently waiting on word to see a neuroimmunologist who will hopefully manage to find some answers.