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chronic fatigue & fibromyalgia - a holistic touch

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Hi? [Mar. 30th, 2012|04:22 am]
chronic fatigue & fibromyalgia - a holistic touch

cookielaura
Hi everyone!

I'm just wondering whether this group is active or not (looks mostly not?), and also if it isn't, do any of you have any recommendations for an LJ comm which is active for ME/CFS? I've had it for a long time and would like some online support/chat!

Thank you :-)
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A quick question...(x-posted) [Feb. 9th, 2012|09:07 am]
chronic fatigue & fibromyalgia - a holistic touch

femaelstrom
[mood |curiouscurious]

What time saving tips do you good folks have related to your daily routines? How do you find they help you manage your symptoms?

Basically, I have ended up somewhat collecting them and am always keen to gather more so here seemed like a good place to ask!
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Trental [Dec. 7th, 2011|05:27 pm]
chronic fatigue & fibromyalgia - a holistic touch
burningembers6
Has anyone tried Trental(pentoxifylline)?
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In search of advice.... [Oct. 30th, 2011|09:38 pm]
chronic fatigue & fibromyalgia - a holistic touch

femaelstrom
Hi everyone

I'm pretty (100%) sure that this sort of thing has been covered elsewhere but I'm here to plead for any and all info and advice you good people would be kind enough to share. I am going to ask again firstly because it might breed different advice for everyone to benefit from. Secondly, because A) being at the PC too long gives me headaches so my ability to search is limited by that B) attempts to retain/collate information have been a struggle as a result of this and fatigue/brain fog.

I apologise for any repetition and ask you all just to bare with me this evening.

I was discharged from my regular appointments recently and freely admitted to worrying about that. Those worries have been made worse this weekend by hitting a bit of a nasty slump that's left me feeling in rather a state. I am especially worried about the impact it may have on my training if I can't keep things under control and my ability to do that is really being put to the test this week.

The more I think about my symptoms and treatment, the more concerned I become. Despite the intervention I still experience -

anxiety
brain fog

difficulty controling my body temp
dizziness
fatigue

headaches
jelly legs
lack of motivation

low blood pressure
low grade fever
muddled speech
muscle pain
muscle weakness
panic attacks

runny nose
sore throat
swollen and painful glands
unrefreshing sleep

It's a pretty standard list for many sufferers, I know!

The areas I've bolded are the areas I've been particularly looking for advice surrounding. Although, if anyone wants to share any other tips/suggestions they're all welcome, believe me!

I just don't feel the information I was given on eating, graded exercise, nutrition, pacing, rest, routine, sleep and stress have helped beyond what I could have found myself online or in books (again, feel free to recommend!).

The more I think about it the more prescriptive (but not in a good way) it feels and being discharged after not even 6 sessions seems far too soon. It has all left me feeling rather put off the idea of going back for more help, too. One example might be that when I mentioned going gluten/wheat free it was treated very dismissively as my coeliac's test had come back negative, despite the information I've found to say it may well help even if the test isn't positive, as I'd "still need to do everything else, too". This was in the very early stages of treatment, too. Not the best response when you're feeling incredibly broken down and willing to try anything, no? I am now wondering if other things were not brought up because I did not know to ask and the health professional had similarly dismissed them. It feels a bit like going back to the start, really.

So, yes...suggestions welcome in all forms, please. I am willing to do whatever I can if it will help. Thank you in advance to anyone who does take the time to reply. I really do appreciate it more than I can say.

Take care all
xx
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The F.E.V.R. Fund [Aug. 5th, 2011|04:24 am]
chronic fatigue & fibromyalgia - a holistic touch
thefevrfund
[mood |busybusy]

 Hello everyone!
          My name is Karissa & I'm trying to spread the word about Fibromyalgia. I created The Fibromyalgia Education, Visibility, & Research Fund because my mom has lived with it for many years. I'm trying to raise money to not only help her, but to help others in similar situations. I'm looking for as much help as possible to get the fund out there. I created this LJ, plus Tumblr, Twitter, & Facebook pages as well. I'm in the process of setting a donations page up, too. In the meantime, if any of you would like to share these sites & my idea with others, I would greatly appreciate it! I'd really love to be able to make this fund a success & help people.

Thanks
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My treatment at Breakspear hospital and other things you can do to help ME/CFS and IBD [Jun. 18th, 2011|12:41 am]
chronic fatigue & fibromyalgia - a holistic touch

redtoffee
Breakspear Hospital

The truth is, I do recommend Breakspear. I will tell you the truth and see if you want to go down that path. You can read my journal entries here to find out what I have been having done at Breakspear. Although I do need to update for this year. http://www.caringbridge.org/visit/lauradunks/journal

Read more...Collapse )
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Introduction and Severe ME Blog post :) [Jun. 15th, 2011|08:38 pm]
chronic fatigue & fibromyalgia - a holistic touch
chlayfairy
[mood |busybusy]

Hello! My name's Chlay, I'm 19 and I've had M.E since I was like 12? Idk but yes I just thought it'd be nice to join a few ME places on LJ, I'm not new to LJ but this is a new account
Right now I'm pretty severe and am waiting to go into hospital, but I do a lot of treatments at home like reiki, reflexology, aromatherapy massages, meditation etc :) I'm also really into making sure I put the best nourishment into my body as I possibly can, although that's been difficult as for about 6-7 week I haven't been able to swallow properly , the joys of complan ;) but I bought a juicer and it's been a life saver
I'd love to get to know you all so feel free to add me :) and come say hi!

As I feel a lot of people misunderstand severe ME I decided to use my blog to inform people and I've love to hear your opinions on it
http://chlay.blogspot.com/2011/06/i-only-ask-to-be-free-butterflies-are.html
Sorry if this isn't allowed

Oh if you have all seen Daisy's Video on Youtube I'm the girl who did the song that's playing in the background :) it's on my blog post actually if you haven't seen it

Sending you all lots of love and I hope you're all as well as can be x
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Please vote for the WPI to get up to $200000 in the final round of vivint [Jun. 14th, 2011|09:22 pm]
chronic fatigue & fibromyalgia - a holistic touch

redtoffee
The Whittemore Peterson Institute (WPI) is in the final round of the vivint competition. Please vote every day for the next 10 weeks, 4 days. If the WPI comes first in the region it will win $100K. If it wins overall it will win $200k. It is currently in 1st for the region and 4th overall.

Please like the page here: http://www.facebook.com/VivintHome
and pls vote daily for 10 weeks plus here: http://www.vivint.com/givesbackproject/charity/769

It just takes two clicks a day! Voting started today for the final round.

If you want to join a group and get a daily reminder email to vote, go here:
https://www.facebook.com/event.php?eid=121179681298558

To find out more about the WPI, go here: http://www.wpinstitute.org/

Thank you! Please spread the word.

Laura
~X~
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6 hours left to vote for ME/CFS research and other neuroimmune illnesses [May. 25th, 2011|11:18 pm]
chronic fatigue & fibromyalgia - a holistic touch

redtoffee
Just a reminder if you havent voted yet for the WPI...

We are in twelfth place and still dropping (the WPI) - currently entitled to $40000. We are risking losing the money at all. Please tell everyone you know to vote. It only takes two ticks and there is 6 hours left. Imagine what could be done with the money.

The WPI research into other illnesses like autism and fibromyalgia.

Instructions here: http://bit.ly/mCvKVM

Thank you.

Laura
~X~
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Please vote for ME research in 2 competitions [May. 21st, 2011|09:32 pm]
chronic fatigue & fibromyalgia - a holistic touch

redtoffee
Imaging what these grants could achieve for ME/CFS research!

http://www.facebook.com/event.php?eid=121179681298558&ref=notif¬if_t=event_invite


This facebook group has links to the sites and instructions.

Please vote daily for the WPI to receive $125000 through Vivint for less than 3 more days.

Please vote for the WPI to receive $500000 through chase community giving. One off vote. Also vote for CFIDS assoc of America here http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-for-neuro-immune-disease?src=twitter

Thank you!

Laura
~X~
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