Hi- reading the whole of this thread, (and considering this forum is headed up 'complementary health'), I'm really surprised and saddened that no-one's said that they've chosen to try any complementary medicine/therapy. Why, I wonder! It's a miserable and frightening thing to feel unwell for so long and treatments like acupuncture, homeopathy, herbalism, as well as some of the less well known ones, have a good track record in these situations.
It's such a shame that -as someone said earlier- people that get better, don't generally communicate it, and as a complementary therapist myself, it pains me to hear about such suffering.- I would say, choose something that appeals to you and give it a go! HTH Hom
Woops! Sorry, CreditionJules- I've just seen your mention of osteopathy and yoga- hope it helps- but yes, there are plenty of alternative treatments to choose from if that doesn't appeal to others, or doesn't help you. Good Luck Hom
Hi!
Hi Hom
Thanks for your concern. I am pleased to say that I'm actually beginning to feel better - the first time in months! I still tire easily but I don't have that bone achingly tiredness which I was experiencing before! I have even weened myself off the Amitryptline (which served it purpose but I would prefer not to be on any longer than I had to be).
I know I will have good days and bad days but I'm just enjoying feeling more like "me" for a change!
I am better because the combination Osteopathy, Yoga and tablets or would I have got better anyway?! - I can't answer that!! I'm just enjoying the moment!
There is light at the end of the tunnel - just keep on believing!!
CreditonJules:)
Hello all
Am so glad to see a positive chat about GF, PVF, CFS... I am new to the discussion boards but have read up quite a bit on the above since becoming ill with a GF similar virus 6 weeks ago. Like others I have had many tests all come back clear, which is great but left me wondering what do I have, likewise I find it hard to distinguish when the virus moved out and what I expect is PVF has jumped on board.
I'm really struggling with the fact I thought I was on the mend and some met up with some friends, had a walk and few other 'normal' household chores over the bank hol to find myself in bed for 2 days, glands worse than ever.
Something I can relate to with Ben is that I'm 30, work full-time pretty hectic office job and was the fittest I've ever been - doing 1.5hours cardio and 1 hour Pilates most days of the week. I am also training to be a Pilates instructor and having being cramming hard for 6 months prior to the virus. I am now getting behind on my course and trying to remain positive but also realistic as to what my body can handle right now. Realising I might need to put the course on hold. I'm fortunate that work is being very good about having 6 weeks leave to date.
Im interested in the link between the virus and PVF/CF/ME. Did anyone else push themselves bit too much prior coming down with a virus?
I know I'm on the mend, but it is very slow process - something which I feel the western world doesn't really understand. I have been having acupuncture for 4 weeks now and this has definitely helped boost my energy and immune system, it's worth a try. Also being eating lots of veg, wholefoods, soups and vit supplements - spirulina, echinacea and manuka honey all of which I think are helping. Also been told to eat cooked foods as this helps the body digest nutrients, which gives us more energy to spend on healing. Thank you Elektriksheep for info on Q10, going to get some of this and try it for myself. Im thinking of trying a homeopath anyone have experience of this? I have found that Pilates has helped me to work through stiff back and joints from sitting and sleeping so much. Even on days where I have been wiped the breathing exercises can really help.
I think the key thing for us guys is rest, listen to the body, eat well, stay away from stress and try and remain positive.
Good luck all xx
Hello all. Just re-reading what people are experiencing and hoping to find other things that are working for people trying to manage/recover from this. We were out today and it's so hard to see my boyfriend struggling and feeling like he's going to pass out. Similarities with so many of you on the build up, history of being a keen sportsperson, virus, pushing himself too hard in the early undiagnosed stage, shingles etc. I hadn't heard about Coenzyme Q10 so that's one to look into but would be very interested to know if anyone has followed up on the adrenal fatigue information or the Perrin technique where osteopathic treatment for possible thoracic restriction can form part of the treatment - or your thoughts on these? x
Hi Seren100- I haven't been treated for such a condition but I am a homeopath! So, I regularly treat people who have similar symptoms; there are a range of specific remedies that could help you. Most people respond to the treatment to some degree- some get completely better- a minority just see some improvement- and very few don't respond at all. (But there's no guarantees with any treatment is there)
It's unlikely to be a quick fix, although a lot of people notice at least some changes literally overnight. You'd probably need a minimum of a few appointments, spaced out monthly. It doesn't matter if your symptoms are muddled up and complicated or if the medical diagnosis is unclear- the homeopath will be used to treat people in these circumstances and it doesn't affect the likely outcome of the treatment.
If you go for homeopathy, try to find a registered homeopath with relevant qualifications or you can PM me for info. HTH Hom
Relapse cfs/pvs
I would just like to comment, from my bed, that relapses have occurred frequently since my initial illness 12years ago. I was bedridden for about one year after an attack of shingles. I suffered drenching night sweats, a transient (36hr) rash over my torso, became anaemic and generally became a shadow of my former athletic self. I believe there is a direct correlation between the quality of one's doctor and recovery. I was basically told to get a life. It was only with hindsight and my own research that I realised how my illness had progressed. My Mono test was negative even though no bloods were taken, just a throat swab! Thereafter I was refused tests as the Dr told me that having the antibodies only meant I had been exposed to it (GF, Mono, EBV). Since that illness I have suffered about a dozen or so relapses and have lost a lot of my life as there is only one thing you can do; lie down or you fall down. I believe that the endocrine system becomes compromised, not just the adrenals. A flat battery and empty fuel tank don't adequately describe the febrile malaise that takes one over. It feels like one's very DNA has been taken over in every cell. Relapsing has been part of my life and things are very different. I get liquorice tincture from the herbalist and keep Lysine and stick to an optimum diet, eating very well. I had amitriptylline for a year as well while sleep was laboured and difficult. I say whatever it takes. janina
Hi hom,
thanks for the advice:). may give this a go will see how the next few weeks go but i'm starting to feel stronger now.:)
I have had post viral fatigue for just over two years! Just been for a scan because i have had a pain in my side all through my illness, which they cannot explain. I started off with a virus, unknown, and then it went to post viral fatigue! Its disrupted everything, my whole life and im still not any better off for it. I thought the scan would help give some answers but it hasn't and im back to square one now! Are you still suffering the same symptoms?
Polly
Hi all,
Ive had PVF for about 16 months now and understand how unbelievably frustrating it can be. I think I have only really accepted that there wasnt anything else more terminally ill with me in the last 3-4 months. The main thing for me has been acceptance as like many of you I am youg (29) previously very fit and active and never sat down. On doing some research this is most common with people that do not find it easy to relax or like me think that they are relaxed but body and mind is permanently busy doing or thinking about tomorrow or next week. I am now feeling 75% better than I did at teh beginning after going through every blood test and scan known to man and everything coming back negative. This is a relief but at the same time bloody annoying as you think people are not taking you seriously as they cannot SEE anything wrong with you. I have symptoms of extreme lethargy, trembling/buzzing throughout my whole body for at least 9 months which got worse or sometimes now still flares up when I pick up anything like a virus or cold. I had wretching, pains under my ribs and in my side, back pain for no apparent reason, unbelievable weakness in my legs to the extent that I really struggled to walk downstairs and got very breathless at the slightest thing. Noone can tell me whether it was triggered by a severe kidney infection or a virus. It has left me with major hang ups about my health and mortality and am petrified of having relapses as it make me so fed up and depressed. I had no social life or life at all, although I am now an expert of old comedy re-runs on tv!
Basically, my message to everyone is that you have to accept whats happening and run with it. Thats when you start to feel a bit better, and although its a very very slow recovery, as long as everything else medical has been ruled out, you will get there. thought I never would for a long long time but try to keep positive, have a cry and try to listen to your family/friends when they are trying to support you. And get plenty rest, sleep, eat well and limit alcohol. Im a dietitian by profession and the amount of info out there about diet is very confusing.
Hope you are all getting better.
x
Hi guys
I found this site last night whilst searching on the internet to see if I could find anymore info on post-viral fatigue. As of yesterday the doctor has told me that I most probably have post-viral fatigue after getting the mumps in july this year. Of course all my blood tests came back normal and I was really worried that I would have to do all sorts of tests to find out what i have. Fortunately my doctor told me immediately that he thought i had PVFS so now I know. The thing is I'm not to sure where to go from here, its sometimes very difficult to explain to my friends because when I'm with them I look and act fine so its difficult to explain everything sometimes. I was wondering if you guys could maybe help me with tips on how to explain things to others and make them realize that I am really sick.
xoxo
Hello guys,
I just wanted to share with you a blog written by a wife of a man with CFS who recovered with the help of his wife. I know when you are really down it is difficult to see the light at the end of the tunnel - nonetheless the light is there.. 🙂
http://thewifeofbrian.blogspot.com/
Love,
energy
Dear Ben,
Please see my post - Cured of CF after 25 years. YOur symptoms are just like mine were after I took a couple of courses of antibiotics many years ago. If you have several dental amalgams I would suspect these. But for the real answer you need to get the book - Amalgam Illness: Diagnosis and Treatment' by A Cutler. It may not be what some folk are looking for, but for many of us it is the only real answer as opposed to a lot of quackery and guesswork that will come your way.
Regards Robert
"This is where I have a big problem with it because i'm not feeling tired at all, i'm working just fine, sleep patterns are normal and i'm not struggling to get up, I can exercise fine as well and it makes no difference to my symptoms.
My symptoms now are just a constant malaise ora feeling of something not right. And I have this strange buzzing or trembling thoughout my body. I feel it most when i'm at rest, usually at night when i'm trying to nod off it feels like my phone body is throbbing and my face is vibrating.
Is it possible that I have some other form of "post viral" illness, i.e. different to the standard PVFS/CFS/ME cases.
If so how long is it likely to go on for? Will it ever go away, i'm starting to wonder?"
My symptoms are pretty much identical to yours, and this is the first time I've heard of someone experiencing the same thing. I had to defer my work for a year because my brain feels too foggy and i get the same 'buzzing' 'electrical' sensation in my limbs, usually more at night.
I've been experiencing it for 6 months and am going to get a definitive diagnosis very soon (given the 6 month cut-off period for ME/PCFS diagnosis).
I am doing the Lighning Process course in two weeks, and will post on here how it went afterwards.
I had the pain in my side, too! I had scan after scan, MRI/CAT and ultrasound. Nothing there. I think it's just yet another delightful symptom of this infuriating disease.