Newbie :o)

[stayingstrong]

Hi Dawn.

Sorry you have been struck down again just as you had hoped that recovery was so close. I think this is familiar to many of us here. I just try to remember that it can be two steps forward then one step back, quite often we forget that that leaves us one more step forward than we were before !

As for the blood vesels popping, you are the only other person that I have come across on my 3 year journey to have had that too, to be honest it never even occured to me to put that down to the CFS as I hadn't heard of anyone else with it.

I had a couple of burst blood vessels, one in the centre of my right wrist and one a week later at the base of my left thumb, before they burst the area felt very sore and intensely itchy and was difficult to describe to people. It was almost as though the blood vessel or a nerve close by was trapped beneath something and was tugging. I have had the one on my left thumb burst again earlier this year and I did show my GP the very impressive bruising it left behind but he didn't connect it to my CFS either. Who knows huh?

Hope you find this forum a useful place.
Hugs to you
J

[d17wn]

Hi ya J,
Thanks for your reply ) I did research the blood vessel popping thing a while back and I remember the name (periarticular bleeds...in case u want to google it yourself) and I remember there is a link between that and CFS (think I googled periarticular bleeds and adrenals, coz at the time I thought i had adrenal fatigue).
It's strange isn't it, I had a few vessels 'pop', the first happened when i got up off the floor, i had the feeling of being 'pinged' with a rubber band on my wrist. The vessel then swelled up in front of my eyes, really stinging and itching. I put ice on it and watched this huge purple bruise appear (which BTW is bleeding into the surrounding tissue / ) In the space of a week one went in the other wrist and several fingers. I have not had any more since, this happened after a chest infection in march this year, and all the other symptoms followed. Think I will get on google now ) if I find anything interesting I will try to figure out how to post u a link!

Sorry to hear u have suffered for so long...3 years huh? Well the two steps forward, one back, is well worth remembering, thank u.
Hugs back at ya,
Dawn x

[d17wn]

<span style="color:#CC3399"></span>Hi fellow sufferers, /
My name is Dawn, I am 33. I am a busy mum of 3...a 14 year old and 6 year old twins. Like lots of you, I became ill after a bout of Bronchitis in March this year, after being previously the fittest and healthiest I have ever been!! I was running twice a week, circuit training and yoga..some form of exercise 3-4 times a week.
I had the same symptoms as most; chronic tiredness, brain fog, muscular pains in back and legs, heavy legs, dizziness, vacant feeling, mood swings and irritability,weakness the list goes on, so I won't bore you! I also had (have?) some others...blood vessels popping for no reason in my hands and wrists (this was the first symptom after the bronchitis) and my monthly cycles went all weird. Anyhoo, went to the GP who did all the relevent tests, all were normal except cortisol. GP sent me to an Endocrinologist, who eventually ruled out adrenal failure, although I had lots of "too low cortisol" results. Endocrinologist was adamant that I was recovering, so discharged me in August. Was starting to feel a bit better, although always very easily tired out, given up all exercise in last two months ( however I got a chest infection in September.....and now here I am with all symptoms again. Just been to GP who still suspects CFS. I have bloods on Wednesday, so hoping for a diagnosis some time soon!

[Katy]

Hello folks
I am new to this forum and feeling a bit relieved that I'm not just crazy! A nasty flu two years ago resulted in PVF although I found doctors extremely frustrating when trying to get a diagnosis for whatever the hell this thing was. I don't feel like I was taken seriously at all and instead felt the pressure that a lot of people seem to have felt on this forum "come on, pull your self together!" - If ONLY it was that simple. Finally I got my diagnosis but being that there isn't a treatment for PVF I decided to explore alternative ways of treatment. Bearing in mind that I'm completely cynical. I first went to a herbalist and after getting me to record my diet we discovered that I was lactose intolerant... I also went to a Kinesiologist and I HIGHLY recommend this. The kinesiologist discovered that I was deficient in B vitamins and sent me off with some herbal remedies (as well as vitamin recommendations) The B vitamins helped enormously. After a year and a half, most of the symptoms of PVF had gone, nausea, dizziness, loss of concentration, extreme tiredness, aching, sore throat ect ect. Unfortunately I have relapsed this year after an extremely stressful time and find myself in the same bed, DAMN IT. It's only too easy to not take care of yourself properly... I am a musician, I'm 19, I'm used to being very active and quite frankly this illness SUCKS. But I now KNOW that it can and will get better, and i determined to ease myself back to full health! And to be vigilant enough to be able to keep it at bay...IT CAN BE DONE. Sending big love to all those on the forum xxx

[S!mon20]

And i thought 12 months was long...
Ive got all the same symptoms, dizziness, concentration loss, palpitations , aches and pains and a sore throat! And relapsedd recently for the past couple of months!
I get symptoms that Ive never even had before too like back pains and dyspnea .
Sick.of.it
X


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Si

[Katy]

Such an unbelievable pain. in. the. arse. (complete understatement) Sorry to hear that Simon, I hope it eases of and you feel better soon!! Do you find it difficult to explain this illness? Really struggling with the lack of understanding at the moment... PVF is really hard to describe x

[S!mon20]

Wouldnt say its difficult to explain Id say I was more fed up of explaining it after seeing about 2 A&E doctors, 2 GPs, a cardiologist, an ENT specialist and an endless amount of nurses, and i'm still at my GP now every week ! Lol. But he really understands it and the Homeopath i'm seeings really good too!!
X


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Si

[Paul]

Hello Dawn,

Sorry that you're in the same boat as the rest of us. Your symptoms and onset are remarkably similar to my own - in my case a bad cold thing turned into bronchitis and then into pleurisy from all the coughing. I've today posted a long item on here (needed to get stuff off my chest if you'll pardon the pun).

This condition really does my head in. I'm used to being on top of my game and getting on with the things I need to, and now I can barely concentrate on anything for more than a few minutes. Some of the headaches are incredibly painful as well - like the worst migraine I've ever had multiplied by 10. I am also getting hot and cold flushes (maybe I am menopausal! ;0), and my arms get really itchy which is really weird.

I'm in my mid-40s and have always tried to be reasonably active. I can't say that I'm as fit as should be, but I do exercise a couple of times a week (I study an old form of Okinawan karate, which is fairly gentle and actually includes some elements of softer Chinese and Indian disciplines - e.g. Pranayama breathing, Qigong and Tai Chi, also teaching this to kids). I gig with a band as lead singer which is gets me a pretty good work-out over the course of a 2 hour plus show. Since getting ill, I haven't been able to gig or attend the karate dojo which is really frustrating.

I am considering working a short karate session into each day (maybe no more than 15 minutes), with a concentration on 'moving meditation' via gentle practice of Pranayama breathing combined with kata (set-forms). We'll see how I get on with that. I am also fortunate to live a couple of miles from the sea, so I'm trying to take the dog for a short walk along the sea front whenever I feel up to it - though it's not been too often unfortunately.

Anyway, I hope that things work out for you. The situation we find ourselves in is very unfortunate, but it guess it does bring some comfort to know that we are not alone in dealing with this condition.

All the best,
Paul

[d17wn]

Hi Paul, I would say pleased to meet you, if only we weren't here for the same rubbish reasons!! Sorry you have CFS too, its rotten:-( A lot of people on here talk about the horrific headaches, I must be one of the lucky ones (!) who does not get these! And as for your pleurisy goes, my mum and a friend if mine both had that last year, and both their doctors said it's "an old fashioned" disease...seems to be increasing if u ask me!
So have you had a diagnosis for CFS/ME? I haven't yet, got appt with a specialist in January. All my bloods are normal. It's such a Long road isn't it? How long you been unwell for?
I know we would all rather be 'out there' working, playing and living life to the full, but there is comfort to be found by talking to others in the same boat on here. For now.
Take care,
Dawn x

[d17wn]

Hi Paul,
sorry I missed your update...New phone and didn't transfer my bookmarks!
I am so happy to hear that you are feeling "better" :-) I haven't been on here for sometime for that same reason. I too have been feeling much better, until the last few days anyway. I can feel it coming on, as I have been feeling better, I have over done it a bit, I don't think the cold weather is helping much either. So let it be a warning to you...DON'T OVER DO THINGS WHEN YOU FEEL OK!!! coz you only end up burning yourself out :-/
It must have been hard for you to literally move out of your home, for the sake of this illness, but it sounds like you did the right thing.
I really hope you continue to get better..
Dawn x