• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

How im doing

heapsreal

iherb 10% discount code OPA989,
Messages
10,097
Location
australia (brisbane)
Just thought i would post this as i dont want to hijack other peoples threads as i feel im cropping up abit in antiviral threads. This is just a copy of my recent threads in an aussie cfs forum.

doing well but need to be on guard
on: Yesterday at 07:55:33 AM QuoteModifyRemoveI have been doing quite well of late, back on the famvir now for 3 months, using cycloferon to strengthen nk function and sorting out my whacky hormones and generally feeling better, although i will have a winge about a few more aches and pains which have increased when i use sleep meds like avanza and doxepin for some reason, i do know they worsen restless leg syndrome so maybe related to this.

Now the good bit which i feel abit bad about telling u guys as alot are feeling poorly, i have been managing to do some weight training again 2-3 times a week and make sure i dont get out of breath as i find if it gets aerobic this is when u get crashs etc, i have always found weights the best exercise for cfs when not feeling too ill. Pre cfs and working life i was a tournament playing tennis player and have played off and on over the years when i have felt ok, well i played a game the other day with my 12y/o boy and a mate from work and his son, so it was really a hit and giggles, i enjoyed it, we played for an hour and i didnt think it would effect me, but the day after and im feeling alittle fogged so now i need to put my feet up for a few days, i may have just gone outside that energy envelope, so will pay it off by lazing about and having that valium sandwich before bed, lol. need to stay on gurd!!!

cheers!!!

Im glad i can help others and happy to answer any questions as well. I just dont want to give the impression Im 100% but im feeling pretty good compared to where i was and feel i can improve more, plus i know to well this thing can turn around and bite ya on the bum, so im always careful of using words like recovered etc. Its also difficult to rate how functional u are, there are a few rating scales but i dont think they are accurate. I have gone from working 2 days a week struggling and the rest of the time lying in bed (not sleeping) to working full time, some struggles but now improving with some exercise and now back on the famvir. ITs definately the multiple strategy attack thats helped me, not just the one treatment, but i can say without treating sleep i wouldnt have gotten anywhere but treating sleep alone also wouldnt have got me here either if that makes sense.

cheers!!!
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Its always good to read your posts heaps, full of good useful stuff, you're a PR treasure:)
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,097
Location
australia (brisbane)
Thanks for the replies guys.
I remember once reading a thread where they said that as people get better they drift away from the cfs boards, i just think its important to hang about and let eveyone know what the go is. Im sure others who have been around awhile have seen some info go around in circles and we can help inform others(newbys) if jumping into the circle is worth it, plus it gives people some hope and like i mentioned before, it can turn around and bite us on the bum and we need somewhere to have a winge and get support. plus im still searching for that cure for insomnia, lol.

cheers!!!!!