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I'm looking forward to being part of a new CFS community here

By HERWriter July 31, 2010 - 7:21am

Hi.

I've had CFS for many years, in a variety of different forms. I've been recovering for the past 3 years with the help of my naturopath. Finding support and community online has been really important for me.

Life with a chronic illness can be very lonely and frightening. Being able to feel connected to other people who understand can make all the difference.

Plus, some of the funniest stuff I've ever read was in a CFS community. :)

I'm looking forward to meeting new people and making new friends. People with CFS, and people who care about people with CFS. I am presently in the first category. I hope to see the day when I just fall into the second category.

By November 15, 2012 - 7:48pm

I'm glad you've found others' suggestions useful. I recommend also checking out advice sites. I use HealthTap and have found it to be really helpful in my journey. You can read about it at http://on.mktw.net/TOLDtZ . Good luck and take care!

November 15, 2012 - 7:48pm
By November 8, 2010 - 1:06am

mmm thanks a lot for your replies. I hear about the rest. I need it badly, but my husband's factory and the rescession is not allowing it. So weekends I am resting and from Monday I am trying to survive. Luckily I am sitting behind a computer and receiving clients, not doing to much.

I went back to the naturapath on Friday a week before. And I discussed the possibility of M.E or CFS with him. After he checked again the charts of measurement that he took of me, he said that it is not a typical CFS or M.E. graphic. He told me that he has patients that is CFS and M.E. and he put them on a rave machine whereafter they are usually a lot better. His diagnose of me is that my liver is not functioning completely, my adrenal body is not functioning as I am dead tired and together with the sinus it produces rheumatism and that I have a baterial infection that my body is fighting but he does not know the origin. Ok and then there is the hormonal imbalance since I am 51 now. I still have all my goodies and they say they do not want to take it out as it is healthy. Since then he put me on something for my liver and the rheumatism and something to boost my energy. We have decided that we will do a blood test re my hormones if I am not well after the treatment of the liver etc.

I have considered that it may be then fibromalgya, but at this stage I am going with the flow taking it one step at a time. There is also a bracelet made in Switzerland of 7 minerals and the properties of it is to help the cells to restore themselves and bring them back into balance reducing pain and relieving the simptoms of fibromalgya, rheumatism, sinuses, migrains etc. I am wearing one one week now and since I am wearing it the pain is dramatically a lot less. But I still struggle with headaches and muscles pressure on my head and my body is still fighting the bacterial infections.

They say if there is not a improvement in 4 weeks on the left arm with the nodes downwards you need to put it on the right arm with the nodes upwards for 4 weeks and if there is then no improvement you can send it back and they will refund you. Now I am trying this one too. So I will wait and see what happens.

Time will now tell.
Alita

November 8, 2010 - 1:06am
By HERWriter November 5, 2010 - 3:05pm

And sometimes self-diagnosis is the only avenue open to us. When you've been to doctors, and had tests done and nothing comes of any of it, and the doctor doesn't have anything to offer, people turn to other resources. They research on the net, they join support groups and haunt forums, looking for anything that will help.

November 5, 2010 - 3:05pm
By HERWriter October 29, 2010 - 11:47am

Alita,

We like long answers. There's more in 'em. :)

I had to learn not to wait for a diagnosis. I finally made my own diagnosis after years of nothing from my doctor. Started looking for information that fit my symptoms on the internet and while alot of it was a wild goose chase in the long run it has helped alot. Most of what I have learned about this illness has been on the net.

My naturopath doesn't really treat to a diagnosis. She just treats my symptoms and what seem to be the underlying causes. I like this better than my other doctor scratching his head and saying I don't know what you have and leaving it there for years.

By my naturopath's treating the things that are wrong with me ... they are starting to go right. :) More and more over time, those problems are lessening or disappearing.

There are some crappy sites full of misinformation and dismal gloom about CFS on the net but there are plenty of good ones, with helpful information. Some good forums as well where people share their experiences.

Alita, the biggest thing for you while you're learning how to deal with this illness, is get ALOT of rest. If you can do it, it will help you heal. I mean, like, every couple of hours, go to bed for 20 min. or half an hour or longer. Sleep if possible. Read or daydream or whatever otherwise, but lay down and rest off and on through the day.

And, tell me, have you looked into possible dietary issues yet? Most of us have some -- not all the same as each other, but most of us definitely have some that help keep us really ill.

There, see? Another long post, from me this time. No apologies either. :)

October 29, 2010 - 11:47am
By October 29, 2010 - 2:37am

I believe so. As I read more and more about the condition it seems that they should have give it a name years ago, but as I read the symptoms and the treatment of it, it is a lot the same as I were being treated and as I have found to manage the symptoms over the years. I do not think I have it as severe as you or the other lady who have written on the web. And as I searched the web there is symptoms that is overlapping between CFS and M.E. M.E. is myalgic encephalomyelitis and from this web's homeopath they see it as the same, but some articles on the web says their is definite differences.

For times I am OK, always struggling with migrain, sinus and allergies, but the last 4 months it is again worse, glands that are swollen, pain in muscles, tremendous pain burning pain, pins and needles, headaches, muscle spasm over head and face, inflammation in back, hips, wrists, blurriness before eyes.
low immunity. Being diagnosed by a dr telling me it is CFS or M.E no, but being diagnosed with a flu virus in my nervous system and brain part of my body yes, but it is no longer there, just this systems of chronic fatique and not feeling well at certain intervals of my life.

In one article on the internet I have read the difference between depression and CFS is that when you have depression you do not want to do anything, but when you have CFS you want to do things but you can't. Now I fall in the latter category. There is so much to do, but I am simply waiting for my body to recuperate so that I can start living again.

Now this is a long answer for a short question. Would like to hear your comments.

October 29, 2010 - 2:37am
By HERWriter October 28, 2010 - 10:09am

Alita,

Do you have CFS?

October 28, 2010 - 10:09am
By October 28, 2010 - 7:24am

well, I am glad that I finally found a group which I could belong too, always thought there is something very wrong with my head, now it make all more sense to me and I really enjoyed Jody's input. So thanks for all your trouble to put us in contact with each other

October 28, 2010 - 7:24am
By HERWriter September 10, 2010 - 9:17pm

LOL

The fastest way to make me go blank is to ask me to be funny. :)

Kindof like putting a microphone in front of someone who would otherwise be talkative but now, ... they're all self-conscious ... :)

September 10, 2010 - 9:17pm

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This is a group for women, men and their loved ones who live directly, or indirectly, with Chronic Fatigue Syndrome. We offer friendship, support, advice, and links to professional aids like articles, videos and blogs from doctors and other experts in this field. We hope you join us!

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