Post Viral Fatigue :: Forum

	2/5/2012 8:30:48 PM
topic: PVFS FACEBOOK GROUP!! Helen82 Posts 944	Ok hon, the link should work now, go for it xx
	2/5/2012 1:54:21 PM
topic: Previous Glandular Fever ATR21 Posts 5	Hi Carol, whilst I can't comment on the period of time since you may have had the Epstein Barr virus and current symptoms, I thought I should let you know I was diagnosed with GF in April 2011 following a few weeks of high temperature, night sweats and typical viral symptoms. Following the first weeks my symptoms have been identical to yours (sore glands in neck, headaches, 'fuzzyness', fatigue, and possibly depression from being off work). I'm unsure if I have failed to get over GF or if I have developed PVF as my symptoms have been constant with no change other than a reduction in fatigue after 6 months (I had to sleep 2hrs every afternoon prior to that). I know that my symptoms are directly related to having had/still having glandular fever, and that you could perhaps have had a relapse. Hope that helps a little and good luck beating it!
	2/5/2012 1:03:55 PM
topic: The dreaded S E X ATR21 Posts 5	Hi Spike, Difficult subject matter and great responses so far Personally I've had symptoms for one year and have had many a romantic plan ruined by headache, fatigue and sore glands. Sometimes I am literally in too much pain/lacking in evergy to do anything. Other times my attempts to initiate intimacy have been shot down, my partner questioning how I don't have the energy to do anything all day yet have enough energy for sex! Generally speaking I think that women are less likely to enjoy the physical aspects of a relationship if the emotional aspects are being neglected, though it is hard to explain that you can either go out for a romantic meal OR have sex, but not both! My advice would be to try to nourish the other important parts of your relationship, be honest about how you are feeling, and prepare to take advantage of any energy reserves with some spontaneity! Good luck with the symptoms and have fun!
	2/5/2012 10:08:14 AM
topic: If you have a really bad case of PVFS, read this! rm1 Posts 27	i reckon libido is the least of your worries with this baby. I can't be bothered with the opposite sex anymore as i don't have the energy.
	2/5/2012 12:08:47 AM
topic: If you have a really bad case of PVFS, read this! No2 Posts 65	I think the short answer is Yes is effects your libido as long as you have low energy and any other symptoms. But, I don't think libido is a permanent change and will return as you recover. My libido has tended to improve as I have improved. Also, if you are taking antidepressants (as many with this illness do) they can negatively impact your libido.
	2/4/2012 5:31:07 PM
topic: If you have a really bad case of PVFS, read this! Batteryshop01 Posts 1	Does PFV have dramatic effects on ones libido? Ive been completely impoteant ever since the onset of a virus called 5th disease over two years ago. My red blood cells and my white blood cells were high for a period of 4 months following the infection. My testostorone level is around 390. Will this symptom improve when/if the other PFV symptoms improve?
	2/4/2012 2:02:17 PM
topic: PVF or still Glandular Fever? ATR21 Posts 5	Thanks for the response! Glad to hear you are making progress, I have downloaded Dr Myhill's book and will start to follow the treatment suggested. How long did you cut out activities for before symptoms were completely gone? I haven't done any exercise for 6 months, had a month off work doing nothing all day but still find that doing the washing up etc will bring on symptoms!
	2/4/2012 12:53:35 PM
topic: PVFS FACEBOOK GROUP!! Helen82 Posts 944	Occassionly we change the group to secret when we have had an influx of new people, so that we have a chance to get to know them before more new people join, it helps it remain an intimate group where we feel we know each other. If you would like to join, just let us know when and we will re-open it for you xx
	2/4/2012 10:51:19 AM
topic: Magnesium!!!! rm1 Posts 27	it is a mild laxative but i have been taking it for 19 days and only experienced the laxative effect once. It hasn't made a big difference though, what inpact did it have on you metalpetal? I am giving it a month and then moving on to another supplement dribose anyone tried that?
	2/4/2012 10:15:45 AM
topic: Magnesium!!!! metalpetal Posts 176	That's a good point - but it is very easy to 'identify' when you've taken a bit too much :-) At first I did have to play wih my dosage for two or three days until I got it just right. The reason it has a laxative effect is because the body is getting rid of the magnesium it doesn't need. But good advice re anyone with kidney problems etc - although I would hope anyone with kidney or liver etc problems would know to check before taking *anything* new.
	2/4/2012 2:29:19 AM
topic: Magnesium!!!! No2 Posts 65	My good friends, I seem to find myself in the role of "buzz kill" more than I like. Be aware, Magnesium Citrate (however you get there) is a powerful laxative, further has a whole list precautions that could make it dangerous for some people. As a laxative... it can have bad long-term use effects (like any laxative). The way it works as a laxative... involves saline, osmosis & water ... can be dangerous for people with kidney issues (for example), or even undiagnosed conditions. Definitely keep you doctor in the loop... please! edited by No2 on 2/4/2012
	2/3/2012 4:58:09 PM
topic: PVF or still Glandular Fever? ATR21 Posts 5	Hello! I'm a 30yo male and I've had the same symptoms constantly for 10 months now having initially been diagnosed with Glandular Fever. I recently returned to the doctor who said it might be PVF. Can any PVF sufferers identify with my symptoms, or am I simply not over Glandular Fever yet?! My symptoms are: Daily: -Swollen sore glands in my throat, get gradually worse through the day or following a bad nights sleep. -Headache - no specific location, just 'whole brain pain and fuzzyness', somewhat like a hangover. Difficult to concentrate and function normally. Gradually worsens through day particularly with any exercise, loud noise, bright sun light and stress. -Fatigue - Prior to August I had to sleep at least 1-2hrs in the afternoon but since then have not. Now experiencing general muscle tiredness that woresens if doing any prolonged activity. Was fully exhausted by a 15 minute walk last weekend, glands and headache started then fatigue set in. Had zero energy reserves for the walk back, took 40 minutes as had to stop and could only walk very slowly. -Massive appetite - I've been eating loads but not gaining any weight. If I don't eat every few hours the above symptoms worsen, but subside a little after eating (I have a healthy diet BTW). Often: -Sore glands in groin (below belly above crotch) - These only start to hurt after the other symptoms are in full swing on a 'bad day'. -Trouble sleeping - I've never been a good sleeper but find it harder now due to symptoms and worrying about the symptoms. -Depression - It's been 10 long months of feeling ill and tired every day. I love my job working at a special needs school, and used to play ice hockey, go surfing, take my partner out for dates, socialise with friends etc but have been unable to do anything and am feeling very down about it. I have also been signed off work on half pay and am very concerned about money. Sometimes: Sore glands under my ears - only happened twice when I was feeling really rough with all the other symptoms. I realise the symptoms vary wildly from person to person with both glandular fever and PVF, but so far I feel I still have GF. I also can't find anything about the increased appetite! All opinions and advice very welcome, thanks in advance
	2/3/2012 3:55:38 PM
topic: Rookie poster seeking advice/support re GF/PVF :-) ATR21 Posts 5	Hi everyone! Looks like I have finally found something that might help, or at least give me opportunity to share experiences with others who will understand! I know this is a long read but wanted to cover all my symptoms. I turned 30 in November, work as a Therapy Assistant at a special needs school, live with my girlfriend in the UK and used to enjoy a fun active lifestyle (ice/roller hockey, surfing, festivals, gigs, pub with friends etc.) prior to my experience with Epstein Barr! April - after 1 week of high temperature, chills and night sweats the doctor said 'it's just a virus, it will pass'. Following 2 weeks of exhaustion, sore glands in neck and headaches, blood tests revealed Glandular Fever. I had one week off, underestimated the virus, and returned to work. I struggled with on-going symptoms, eventually being signed off to half days. Every day I would get up feeling low on energy, go to work and after an hour or so start to get the same symptoms - sore swollen glands in my neck, a non-localised headache I can only describe as 'fuzzy pain' (like a hangover) that made it hard to concentrate or function properly, and extreme fatigue (as though I had been awake 48hrs). I had to go home and sleep for 1-2 hours, feeling better but not normal after waking, then the symptoms would gradually return till going to bed. The symptoms were aggravated by lack of sleep, any exercise, prolonged concentration, loud noise, bright sunlight, talking and not eating regularly. July - Summer hols meant I had 6 weeks off, and spent these indoors on the sofa watching mindless TV. I had cut out alcohol and all physical and social activities I used to do, and needed to sleep at least 1 hour every afternoon. I found that I was eating lots more than usual and that the symptoms got worse if I didn't maintain the higher intake of food (I have stuck to fruit, mixed nuts/seeds and oat based energy bars to supplement meals) though I have not gained any weight. Following internet research I started taking a vitamin pill, CO-q10, Echinacea, milk thistle, fish oil and St Johns Wart but can't say if these have really helped. Both my girlfriend and I became increasingly moody and unintentionally argumentative, and I continued to experience the symptoms. By the end of the school hols in August I suddenly had a few 'ok' days followed by several 'nearly normal' days when I didn't have to sleep during the day, and the symptoms were much reduced. I was really excited and positive that I was nearly recovered. September - I started the new term working full time, confident that I was winning, but after a few days the sore glands, headache and fatigue started creeping back. I refused to acknowledge them for a while but they got worse, forcing me to be signed off on half days after a few weeks. The symptoms got no better except that I have not had to sleep during the day since August. Following 5 months of not being able to do anything I enjoy (sports, social drinking, going out with my girlfriend - even holding a conversation became a struggle on bad days) my mood noticeably dropped. I began to argue with my girlfriend on a regular basis as we both became frustrated with my zombie-like state. I was alarmed at the regression of my symptoms, but the doctor's only advice was rest and graded exercise. I have not done graded exercise because any activity is enough to bring on a headache, more exercise = worse headache, glands and fatigue. October - I continued to work half days and we moved into a new flat (exhausting). Lots of stress related to the landowner refusing to allow us to park and a nightmare neighbour (housed by council, jobless, playing loud music till 1 am most nights and asking to borrow money every other day). We love the flat and fortunately both situations are nearly resolved, but lack of sleep and stress didn't help my recovery, and the sore glands, headache and fatigue continued. December - my car was written off when a lorry driver left the handbrake off (no one was in either vehicle so fortunately no injuries) resulting in more stress to go along with all the usual festive family commitments. I was exhausted throughout Christmas and felt my symptoms were reaching the same levels as in June. The arguments with my girlfriend have revolved around glandular fever and had escalated to the point of almost breaking up. She has been starved of attention and romance but doesn't understand how it feels to have a headache, sore glands and fatigue for 10 months. She has also been doing the majority of the cooking, cleaning and washing as I didn't have the energy after work. I don't blame her and couldn't have got this far without her, but Glandular Fever has been ruining our relationship and lives. Following a lengthy argument we both admitted we were feeling very depressed about the situation. After the Christmas holidays I told my school that I was getting no better and needed to be off full time to make a full recovery and start functioning properly. I saw a different doctor and was signed off for a month on half pay but with no advice as to my symptoms. Now - Having made little progress I saw a different doctor yesterday and ran through my symptoms thoroughly and was told I might have PVF. I questioned this as the symptoms keeping me off work have not changed in 10 months, though the fatigue is far less problematic than it was. The doctor had no explanation, giving me a throat swab, a week of antibiotics "just in case I have a throat infection" and blood tests on Monday (including Lyme’s disease as I was bitten by a tick in Australia 10 years ago!). When I mentioned how depressed I was feeling she gave me a mental health questionnaire to fill out and bring back next week! I walked out feeling completely let down. I was not forewarned how serious glandular fever can be and given very limited advice by the doctors - some of which (antibiotics and graded exercise) I disagree with. I know there is no miracle cure, but any offers of advice on ways to tackle GF/PVF and possible depression would be greatly appreciated. After nearly a year it would mean a lot to be taken seriously by someone who has similar experiences and understands what I'm going through. Many thanks for reading, and good luck if you are in the same boat!
	2/3/2012 12:02:25 PM
topic: Recovered david Posts 2	Hello people my blood tests returned 'normal'. It was at that moment that something seemed to click for me. The fear left me. It was almost as if this fear had been stopping me from living a normal life for 5 months. I wasn't aware it was controlling me, but it obviously was. It's way too coincidental that i got better within hours of getting my results back. It's crap hearing you guys are going though something similar i truly believe that if you do all the right things. Look after yourself in every way. Physically and mentally. You will get there. And the great thing about 'getting there' is that life is suddenly a whole lot sweeter on the other side. Strangely, I am glad i went through that crap for 5 months, I appreciate things a lot more now. And finally, remember, lots of people recover it's just they forget to let everyone know that they have recovered because they are too busy living their lives again. (Ha, never be too busy...learn to relax when you're well...that was my problem in the first place i think) x
	2/2/2012 11:32:57 PM
topic: Young, Student, Rugby player... Tallypop Posts 25	Hey Really nice post, I'm a third year uni student and I'm showing signs of recovering 5 months in, I worked out 5 times a month and was really happy with the shape I was in, post viral put an end to that! However I'm just happy to be getting better, I certainly have more respect for my body (which I will get back into shape lol). I have heard your uni is pretty cool, of topic I know... Anyway take it easy and great attitude Tally
	2/2/2012 2:32:14 PM
topic: Waking up No2 Posts 65	One of the old timers here! LOL I have found (since the beginning) that waking up is pure hell in my head! I have had head pain & tinnitus since the beginning; combine that with brain fog...Wow! All is a bit better, but mornings are still the worst for me. I have been taking Vicoprofen for my terrible ear pain, but that has been getting better. Vicoprofen also helps with this thing going on in my head in the mornings. I wake-up in middle of the nigh a lot, to get back to sleep I take an Ambien (else my sleep schedule can get WAY off). The ambien might be making wake-up worse; perhaps I don't need it like I did before to get back to sleep.
	2/1/2012 10:28:43 PM
topic: WORN OUT! Old Timers Club Forming Here! stayingstrong Posts 16	Sounds strange " The old timers club " the only club where you really don't want to be in a position to qualify entry to ! Not glad that I or anyone else has to join but am sure that all the members will have lots of compassion and understanding . Hugs to all xxx
	2/1/2012 10:28:42 PM
topic: WORN OUT! Old Timers Club Forming Here! stayingstrong Posts 16	Sounds strange " The old timers club " the only club where you really don't want to be in a position to qualify entry to ! Not glad that I or anyone else has to join but am sure that all the members will have lots of compassion and understanding . Hugs to all xxx
	2/1/2012 8:46:38 PM
topic: WORN OUT! Old Timers Club Forming Here! No2 Posts 65	Heck yeah... I say, if you think you should be in... you're in! It's hard to know when one thing ends and another thing starts... or if that even matters! With this illness 1 yr can seem like many yrs! As I try to explain to people, it is cruel because sometimes it teases you that you are improving, then wham, you go back months or yrs; hopefully not for a long time, but it has no rules. 3 yrs ago, I was "thinking" that recovery meant "full recovery"; now I just hope for a sort of a normal life with some reasonable compromises. it sucks to be the guy who says "I don't feel like I can go" at the last minute; things come and go (mostly come) so quickly! Hal, same thing happened to me. Everyone (in winter 2007/8) was getting this long-term chest cold. I can even remember my wife complaining "will I (she) ever get over it" after 3-4 wks; she cleared it in about 4 wks. There was another guy at my workplace who had the same thing (I think) for a number of months. I got it, it hang on good for 4-5 months but took about 10 mos to really clear, then wham, a month later it hit me! I went into this other thing. It has been 3 yrs in "the other thing"; slowly improving with many setbacks. In fact, the muscle fatigue peaked later, it is now getting better as well. Even 8-10 months ago I was still getting the occasional low grade fever and funk chest feeling (with a slight cough); weird, it would last 4-6 hrs then go away again. edited by No2 on 2/1/2012 edited by No2 on 2/1/2012
	2/1/2012 8:07:59 PM
topic: WORN OUT! Old Timers Club Forming Here! hal Posts 15	That’s dead right if you have been diagnosed with pvf, cfs, or m.e your in big trouble with little or no help, I ended up with pvf, cfs, m.e after a cold, cough then chest infection interesting thing is I caught the cold of a work college he recovered no problems I ended up with a four year nightmare makes you wonder if the initial virus sends something out of kilter (immune system or in the brain) anyway i think i qualify for the old timers club
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