Found a Brilliant Book,, The Fibromya... - Fibromyalgia Acti...

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Found a Brilliant Book,, The Fibromyalgia Advocate ,,,

jjojay profile image
8 Replies

Found a really good book , it's Brilliant for those whom need to know much more about the condition. Been newly diagnosed , and not getting much understanding from Doctors or much information , I bought s handful of books on Amazon . The fibromyalgia Advocate , getting the support you need to cope with Fibromyalga and mayofacial pain syndrome . Devin J Sarlanyl MD ,

Pretty Good and reads well easy to understand and I recommend it.

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jjojay profile image
jjojay
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8 Replies

Hey glad you found something that helps will go and have a look

VGx

Good find, I may take a look too. I dont think you can ever have too much info, its good to be informed as much as poss. When i got diagnosed i was told, "you have Fibromyalgia! and i was given a 2 page leaflet!!!!! not very helpful at all.

My mum has Fibro and my 26 yearold daughter has all the symptoms... but doesnt feel unwell enough to go to gp!!! "yet"... xx

Thanks for the info, I will check it out.

Kaz

x

chrissy57 profile image
chrissy57

Thank you. When I was diagnosed I didnt even get a leaflet. I was just told I had it. Everything I know about it I found out online :O

phlebo123 profile image
phlebo123

Hi jojay. -- I will have a look for this book. Thanks for recommending it. I would also recommend a book titled " 50 things you can do today to manage fibromyalgia" by Wendy Green. (If you have not seen it already!) You are doing great finding out as much as you can about the condition -- it makes learning to live with it easier when you know what you are dealing with!! :) xx

jjojay profile image
jjojay in reply tophlebo123

Hi phlebo123 will look out for it, I have found out so much through books. There's a few I haven't got through yet. I'm determined to get as much useful information as I can. I have never ever felt as ill in my life as I have since November. I'm slowly picking up. One tip I have for everyone out there ,,, if you haven't already , look into reactive hypoglycemia and Multiple chemical sensitivities , it's so informative when you know what your fighting. I'm going to try my best to help my body . I've always thought that I ate well. But when you really look around you. Toxins are everywhere . Since November Ive started using organic hair colorant. Organic deodorant washing up liquid and toiletries wash powder everything . I can't get organic food but try my best. My limf glands under my arms were hurting so bad through toxins it's all gone now I rub evening primrose oil organic ,,,on affected areas the pain has entirely gone away, even my periods have got better. I don't know if it's a just a coincidence . It could be just that. But I feel a lot better and don't feel as bad in energy levels . I was in so much pain, I thought I must have something extremely wrong alsorts of things started going through my head. The information in the above book I've mentioned is very good. It's not a book advising to eat organic that's my decision based on toxins . But it so easy to understand . I would never of known what Fibromyalgia really was or understood the complex symptoms or why it happens without informative books or online ... This site I'm in now for example helps and supports and puts me in-touch with other sufferers and is so supportive. My Doctor has not given me any advise at all . I haven't received one bit of information from my Doctor . I appreciate that Fibromyalgia has put people through so much misery , these books are like hope for me. I'm sure there will be some authors making money out of it. But I'm happy to sift thro them and see for myself what works. If I see any more that I can recommend I will put it out on here. I've read three so far , have five sat on coffee table . The above book I mentioned is a big thick one and it wasn't expensive I got it for around three pounds on amazon used. HUGs x cos we need em don't we , we really do suffer , it's made me great full for all the good days I get,, stay warm folks snows not over yet x x

phlebo123 profile image
phlebo123 in reply tojjojay

Hi jjojay -- I think this is what they mean by "becoming an expert patient" -- we have to discover as much as we can about it and then work out for ourselves how we can manage the condition. Doctors know so little about it (in fact I think we ourselves probably know a thousand times more than they do!!) that all they can try and do is "mask" the symptoms by prescribing more and more painkilllers. There is no "one cure" that suits all -- we just learn for ourselves to adapt our lifestyle to keep the symptoms manageable. I have read a lot about Reactive hypoglycaemia and I do notice that my symptoms are worse when I am hungry and so I try and eat small healthy snacks regularly (and not large meals) -- foods with High Glycaemic index are very good (eg porridge for breakfast) -- a good article about it is found on fibromyalgia-symptoms.org ( look at reactive-hypoglycaemia section). I personally believe the condition is partly down to imbalances in various hormonal systems in our body (especially adrenaline/insulin) and if you can mange to keep these relatively stable then symptoms reduce/disappear. The more you read --the more knowledge you gain --and the more you learn to understand. Sounds to me that you are "winning the battle" -- stay strong and positive. :) xx

jjojay profile image
jjojay in reply tophlebo123

Hi Phlebo123 , I will take a look now. There's so many foods I've cut out and some I really loved. I actually thought I ate pretty healthy , after finding out what I thought were healthy carbs I was surprised . If you have any tips pass them on. If I can get over one hurdle at a time Theres hope X

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