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Author Topic: Starve or Agony  (Read 648 times)
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Luckymolly
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« on: May 07, 2017, 08:02:44 PM »

Hello Everyone

This is the first time I've ever posted and asked others for help online.  I'm just lost and completely numbed.  I've lost three relationships, where my fatigue has played a significant role in its demise.  But I know that neither of these men are the right one for me, so I won't waste time other than to say that this is now the reason I'm on my own.  I have picked my life up....new job; new car; new home.  I sustain it all on my own with no joint income.  I work hard and so that's probably an indicator that my CFS is not as bad as most's.  But I know I don't need to justify to you all here that it's still so very hard.  

I've had the usual dose of outside opinions .... It's all in my head etc.  But, they're always flummoxed when they see how hard I work and how social and outgoing I am ... But I do it all in the agony that is fatigue.  I'm doing the best I can, on my own and I'm such a strong person...but still I have no idea where to start to get help.  I went to my GP who referred me to a specialist who, although nice,  seemed like he'd put me on a conveyor belt along with others just stamping us with the label CFS. I was offered graded excercise but really didn't think it would be for me after my initial appointment and I wS on the waiting list for nearly a year for CBT.  

I perform yoga and meditation regularly and it helps me the most with the fatigue and achy muscles.  But still my symptoms are gradually getting worse, despite just ploughing on with my life, and now I suffer chronic bloating and constipation every single day and over the past year, sinus pressure and sore swollen glands.  The gastrointestinal issues cause me pain and discomfort evey day.  I have tried everything, even going to a detox and nutritional retreat in France with specialists (costing 3000 per night) and to no avail.  I now have two options: don't eat and be hungry or eat and be in pain.  One food can be harmless one day and then painful the next.  I've tried digestive enzymes, digestive stimulators, lactose enzymes, colon cleanse, buscopan and a range of vitamins but with no relief.  I've tried all "free from" diets with no luck.  

I'm trying my best with no financial help only what I bring in through my own business as being self employed.   what do I do next?
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roger
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After 12 years of trying, I'm now A OK


« Reply #1 on: May 08, 2017, 05:59:46 AM »

Hi Luckymolly, and welcome to the forum.

First, I admire you for trying so hard to get to the bottom of your issues. You say you're a strong person, and you clearly are, but that could be part of the problem. With CFS, there's a major need to rest, and you don't seem to be doing that - and I do know how difficult that can be if you're self employed. But it is essential, I'm afraid.

At this stage, may I suggest this book - https://www.amazon.co.uk/Diagnosis-Treatment-Chronic-Syndrome-Encephalitis/dp/1781610797/ref=sr_1_1?s=books&ie=UTF8&qid=1494222740&sr=1-1&keywords=sarah+myhill - which may provide you with some useful insights.

Re gut issues, the two things that helped me the most gut wise were Amla powder - a teaspoon in a glass of water each morning. It tastes dreadful, but is really helpful. You can get a good quality one here - https://www.ancientpurity.com/amal-fruit-powder - and a specific form of charcoal called toxin buster - https://not-the-norm.com/collections/health-products/products/toxin-buster . No guarantee with this combination, but in my experience, well worth a try.
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Luckymolly
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« Reply #2 on: May 09, 2017, 05:42:39 PM »

Hi Luckymolly, and welcome to the forum.

First, I admire you for trying so hard to get to the bottom of your issues. You say you're a strong person, and you clearly are, but that could be part of the problem. With CFS, there's a major need to rest, and you don't seem to be doing that - and I do know how difficult that can be if you're self employed. But it is essential, I'm afraid.

At this stage, may I suggest this book - https://www.amazon.co.uk/Diagnosis-Treatment-Chronic-Syndrome-Encephalitis/dp/1781610797/ref=sr_1_1?s=books&ie=UTF8&qid=1494222740&sr=1-1&keywords=sarah+myhill - which may provide you with some useful insights.

Re gut issues, the two things that helped me the most gut wise were Amla powder - a teaspoon in a glass of water each morning. It tastes dreadful, but is really helpful. You can get a good quality one here - https://www.ancientpurity.com/amal-fruit-powder - and a specific form of charcoal called toxin buster - https://not-the-norm.com/collections/health-products/products/toxin-buster . No guarantee with this combination, but in my experience, well worth a try.

Thank you so much for the reply - i just didn't know where to start ... you're right, i'm on a work treadmil and it's even difficult to get off in order to even start to look at myself and my symptoms - so thanks for giving me a starting point with the links, i'll definately check them out.  I know that the constant work is a problem, i hope that once i'm settled into my new home and living closer to my new job, i'll begin to take more control of my work-life balance and incorporate some well needed rest.

I do feel that it is so hard to get anyone to take me seriously, i'd love to be able to be able to to let people know what i'm going through but, even though kind, the general opinion is that it's just tiredness like anyone else would normally feel ... but it's soooo not, as you will only too well know. 

Thank you for making me feel so welcome Smiley
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roger
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« Reply #3 on: May 09, 2017, 06:02:39 PM »

Well you're certainly welcome here, Molly, though I wish for your sake that you didn't need to be!

You're right, work/life balance is important - for EVERYONE. But in your situation, it's not important, it's essential. Yes, you can push on until it's convenient not to, but the longer you do that, the worse you'll finish up - I know...I did just that and suffered the consequences for around ten years. I'd suggest thinking in terms of priorities - what's most important, your job or your health? Only you can provide the answer to that because nobody else is you. But please think seriously about it.

In the meantime,  come back here whenever or if ever you feel the desire or need. We know how you feel, and we'll help whenever we can because we DO take you seriously!!

Best wishes.  smile   
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neptuno
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« Reply #4 on: May 10, 2017, 03:37:14 PM »

This is what happened to me. I kept flogging on until my hours were more and more reduced, until I was getting up, working a couple of hours, home sleeping, eating evening meal, going to bed, and doing it all again the next day to the exclusion of everything else including family and friends. I wish I'd listened to myself and taken time off work to rest at the very beginning as I now believe my symptoms wouldn't have been so severe.

It doesn't matter if others don't take you seriously. It's a steep learning curve for everyone...but YOU are the important person, and only you can decide what to do next...... Kiss
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