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Author Topic: being investigted for me/cfs  (Read 253 times)
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MarsupialBlueberry
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« on: November 21, 2018, 01:17:37 PM »

Hello everyone Smiley,

I am 100% brand new. I am currently not sure whether I do have CFS/ME, but my GP has told me it seems like that, and has referred me to a specialist fatigue clinic for further diagnosis and treatment.

Two years ago, I had just started my PhD in clinical neurosciences, I was working long days, loving my work and exercising every day, was able to lift over my own bodyweight and go for 100+ km cycle rides on my road bike. Today, I have been signed off my PhD over month and a half, after nearly 9 months of extreme struggles to get to work or think straight following a very bad sinus infection (I have chronic non-allergic rhinitis and recurring episodes of sinusitis). I ended up with more and more hours and days missed, until I ended up mostly in bed for couple of weeks. I am now a bit better, I can be sitting for the largest part of the day, and do a few things like washing up and getting some groceries from the corner store if I rest in between.

I'm signing up to try and find a community I can chat to about losing so many of the things that gave my life meaning, at least for the moment, such as being outdoors a lot, my exercise, and my academic career. I would also like to see whether people who have been diagnosed feel I have the same disorders they do, as I am still under investigation at this point, and might not have CFE/ME at all, but something else. But, as this is what my GP suspects, here I am!

I would love to hear from you all.

Waves,
MarsupialBlueberry
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roger
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« Reply #1 on: November 21, 2018, 04:31:21 PM »

Hi MB, and welcome to the forum - our little community.  smile

Re 'disorders' - what you've mentioned could well be mild/moderate CFS/ME, but it's as well to get your diagnosis before assuming it is because several things have similar symptoms. At this stage perhaps just get to know a few forum members.

Re your sinus issues, you might find this site helpful - https://draxe.com/sinus-infection-natural-remedies/ . Personally I found seasalt water in a neti-pot very helpful.

When you've had a good look around the forum, do please free free to ask any questions this might raise. We're here to help if we possibly can.

Roger.

PS - re exercise - please don't try to force yourself to exercise because if it's found that you do have CFS/ME, that's the worst thing you can do.
« Last Edit: November 21, 2018, 05:03:30 PM by roger » Logged

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neptuno
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« Reply #2 on: November 22, 2018, 06:51:06 PM »

Grieving for what we have “lost” is something we can all relate to here...BUT there is much we can do to get back control.  For me, it has been a very steep learning curve (riding it like a roller coaster) looking at supplements, food for the body and soul, mindfulness, and learning to say “no”. Much of what we need to do is simple, but not easy.
I wish I had found this community when I was first ill, I wouldn’t have driven myself so hard and been infinitely kinder to myself.
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MarsupialBlueberry
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« Reply #3 on: November 23, 2018, 10:11:04 AM »

Thank you both so much for your kind and helpful replies.

@roger. Indeed. I completely agree not to assume, that's why I empathise in the post that I am not sure yet, and am awaiting proper investigation. However, I've been in the medical mill since the start of this year, and we've already excluded a fair number of things, hence being sent specifically to the CFS clinic now. My thinking was that even if it is not CFS, I am experiencing enough of the same sort of symptoms that joining this community might be mutually beneficial. As you say, I will see what diagnosis I get, and in the mean time try to get to know some people Smiley.

Thank you also for the sinus links. I rinse twice daily as well as do some other things to manage that particular issue, but I appreciate you taking the time and effort to post me a link. Similarly with your advice on exercise. My GP has advised I not push myself at all until we are sure if it is or is not CFS, so I am taking it extremely easy.

@neptuno I'm glad to hear you have found such good support here. How long did it take you to find the community? I can relate to driving yourself hard, and suddenly having to learn to break. I've always been a high-achiever and it's been extremely tough to slowly get worse this year. I also have a life-long sleep disorder, so I have been pushing through that more normal tiredness for years. Being very tired is my normal (in the normal tired sense, not the CSF fatigue sense). I am very used to sucking it up and just doing it. This year it became something else, and pushing through simply won't work anymmore; my body and mind stop functioning if I try. It's been absolutely baffling. I've been extremely lucky that my fiance, GP and DPhil supervisor are all extremely understanding. They all know me as an extremely hard working person, so I have thankfully not had the experience of people thinking I am making things up. Perhaps it helps both my fiance and  I work in neuroscience research and some of my close colleagues work on CFS, which makes people a lot more aware I would imagine. Similarly, my GP is associated with the same academic hospital I work at.

Right, that was my ramble for the day. Thank you again both for your warm welcome.
« Last Edit: November 23, 2018, 10:20:14 AM by MarsupialBlueberry » Logged
roger
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« Reply #4 on: November 23, 2018, 10:25:00 AM »

Hi again MB,

I just wanted to say that if it does turn out to be CFS/ME, it's not the end of the world. You CAN regain your health. I'm assuming you're fairly young, and the younger you are, the easier it is. BUT, having regained your health it's as well to dwell on why you got ill in the first place. Things like 'high achiever', 'daily heavy exercise' and 'poor sleep' are big clues! To my mind health is the biggest issue there is, and to maintain good health, sometimes we have to adjust our lifestyle and priorities.
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MarsupialBlueberry
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« Reply #5 on: November 23, 2018, 11:06:33 AM »

Hi, thanks for the encouragement.

I certainly agree that these factors might have made me a lot more vulnerable. It's a choice I made to pursue the balancing act of going after an academic career with a sleep disorder. I have always had good support and the daily exercise helped, rather than hindered. It helped my sleep quality and gave me more energy, rather than take it away, as it does now. I have had the sleep issue from infancy (I did not sleep more than 4 hours every 24 as a newborn. My poor parents!). I'm 30 now, and I have functioned well (although tired) up to this year. So although I agree a holistic view is helpful, and that my drive + medical issues make me more vulnerable to disease in general, I cannot believe that after so many years successfully walking that line and functioning this would suddenly cause my current symptoms. I think there is more going on. Perhaps current research is not advanced enough *yet* to tell us much about the aetiology of these kinds of symptoms, but that does not mean there is no underlying cause beyond lifestyle and the holistic view. but that's just my two cents. For now I have to deal with the situation within my current boundaries, and although that is tough, most days I am able to stay positive and hopeful that I will always find ways to adapt and cope.
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roger
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« Reply #6 on: November 23, 2018, 11:44:59 AM »

I was very much like you, MB, high achieving workaholic working twelve to fourteen hours a day and averaging around five hours sleep. I say 'very much like you' because I've never believed (and still don't) in intense exercise so I've never done it. I thrived with that lifestyle for close on forty years. Then one day I woke up sick and remained sick for around twelve years. There was no physical underlying reason for this. It was ME - my approach to life, my beliefs, my attitudes.

But hey, I'm not you so who knows?  smile
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MarsupialBlueberry
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« Reply #7 on: December 04, 2018, 11:26:13 PM »

Thanks for your post, and I am sorry I did not reply sooner: I've been having a bad time of it. I will try to take on board what you are saying and not dismiss it out of hand. You are not me, but it's good to not exclude any options to be sure Smiley
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roger
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« Reply #8 on: December 05, 2018, 06:08:19 AM »

Sorry you've been having a bad spell, MB, and I hope you're getting through it now.
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neptuno
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« Reply #9 on: December 11, 2018, 07:20:09 PM »

Also sorry MB I haven’t been around so much to chat sooner. The variable nature of our symptoms is a real pain up the bum !  If you need to rest the listen to your body...it’s when the best healing happens.
Hope you are coming through your current blip...I will see you there later !
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