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Adrienne Dellwo

Quality of Life with Fibromyalgia & Chronic Fatigue Syndrome

By July 3, 2013

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When people talk about their lives with fibromyalgia and chronic fatigue syndrome, it's not usually the symptoms themselves that are the biggest problem - it's their effect on our quality of life. It's the things we can no longer do, or the dreams that may go unfulfilled, that are the hardest to deal with.

What can make a big difference is how you deal with your illness and the changes it imposes on your life. You have a lot of options, even though they can be hard to see through the haze of pain, fatigue, and a misfiring brain.

These articles contain information about how you can make positive changes in your life, without spending money or expending what little energy you have. Some of the suggestions may take mental and emotional effort, but it's effort that can really pay off.

What good habits have improved your quality of life? What bad habits do you need to break? Leave your comments below!

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From the Glossary

Comments
July 3, 2013 at 3:59 am
(1) Katie - Conquering Fear Spiritually (CFS) says:

Thank you so much for posting this, Adrienne- it’s such an important topic. I know lots of people with CFS feel like they’re grieving the loss of a certain part of themselves or their lives and going through this process can be really difficult.

Sometimes choosing good thoughts instead of negative thoughts can really make the difference in your life and in the enjoyment you get out of it. I always make sure I indulge myself and do something completely selfish (every day if I can!)

Thank you again for publishing this- I really love your page.

Warmest wishes,
Katie
(www.conqueringfearspiritually.com)

July 3, 2013 at 11:15 am
(2) desiree says:

thank you so much. as i was reading the article i was amazed because i have been doing many of your suggestions. it really pays to listen to your body`s signal. i do gardening as my hobby. i really started gardening for a living but then things went upside down so it became my hobby. i love gardening and i am still doing it though i have to reduce working time, get a lot of rest, and read a lot of books. i have always talked about my illness to my friends and family to make them aware that i am sick, though they don`t fully understand about it. i am aware that some of them don`t believe what i`m saying, but i don`t give that much importance.
thank you again for this beautiful article. THINK POSITIVE!

desiree

July 5, 2013 at 4:20 pm
(3) Marylyn says:

I have lived with fibro for 10 years & have tried just about all tried treatments to help me when l have flare ups.
Currently I,m doing water exercise 3 times weekly and seeing a physio to help manage my muscle pain, we are trying dry needling at the moment OMG does this hurt! But if it helps with the constant aching i”ll try anything
Unfortunately l cannot take anti inflamm or any codeine based meds so l have to find relief with a glass of good wine and an Epsom salts bath which is heaven.

Toddles marylyn

July 5, 2013 at 4:31 pm
(4) Kathy says:

You know what I don’t understand? I know these things. I know they will help. I just won’t do them.

I tell myself it’ll help me feel so much better. I set (small) goals for myself. I set up rewards for doing it. I create schedules. And I just blow it all off.

I don’t know why I do this. I CAN improve my quality of life. I just won’t. And I can’t figure out why I won’t. And all the guilt and self-loathing that comes with this….I’m making myself worse and I know it. I have so many things to look forward to if I help myself. Is there something else I can do?

July 6, 2013 at 1:45 am
(5) Karol says:

Kathy, I’m exactly the same. There are so many things, both big and small, that I know would help me at least somewhat. And I so want to do them, I plan to do them, but then I don’t. And I get upset with myself. But I don’t know why I just won’t do these things. The main one being work on my terrible sleep schedule. So you’re not alone. I just wish I knew why I can’t/don’t do things the way I want to and know that I should.

July 6, 2013 at 10:01 am
(6) Hope says:

In response to Karol and Kathy… Not one of the suggestions for how to improve our lives with CFS/FM includes improving your sleep schedule. I’d guess the reason for this is because disrupted sleeping is a *symptom* of our disease. It’s not lack of willpower or effort on our parts but physical disruptions of the body’s natural cycles that causes the problem and the exact mechanics of this are still being studied. I’ve heard of people finding some relief thru using melatonin, blackout curtains etc but no cure.

I think it’s all too easy for us to blame ourselves for our symptoms but the true suggestions in this great article were all about being less harsh on ourselves. No need to set up schedules, small goals and reward systems… Simply practice listening to your body, live in the day and trust that you are doing what you can. It may not be as much as you’d like, but forgive yourself for being ill and accept your limitations.

If you’re having trouble doing things to improve your situation then start with the list of things to *stop-* doing first! :-)

July 7, 2013 at 8:56 pm
(7) kathleen says:

Hi all and especially Karol and Kathy. Wow, I know it is said a lot around here, but I thought it was just me. I have a huge problem with not being able to make myself do the things I used to love to do. I have always been a creative person, making jewelry, using polymer clay and just about every kind of crafty thing. It was always my ‘thing’. But now I continue to buy the supplies, but they don’t get used. I spend my small amount of ‘mad money’ that I have left from my disability check after paying for food and rent and meds, etc. And I’ll plan out in my mind what I am going to make, and once in a blue moon I’ll actually get stuff out and then, nothing! Then I am left waiting for another day when I have a little bit of energy to put it all away again. I drive myself self crazy with self loathing. Two or three times so far, I have had to give all my craft supplies away, because I’ve used up all the room I have to spare in the room I am renting to live in other peoples’ homes.
I’ve wondered if it is a part of the depression or is it because I’m so sick all the time and have no energy? I’m sorry you guys have to deal with this too. We are a weird sisterhood, for sure. I’ve been sick 18 yrs so far and now I am 61. What scares me in the night is what is gonna happen when I can’t take care of myself any more and am at the mercy of a stranger for my pain pill, etc. in some nursing home? it doesn’t bear too much thinking about.

July 8, 2013 at 7:28 am
(8) kellye says:

Oh my, I hear you all. I’m not sure which is worse fatigue or pain. I’m on lyrica and cymbalta and I have gained a lot of weight that I’m really upset about. Feeling fatigued to the point of exhaustion and still having to do things. I work full time and shift work, I really struggle with it and the driving to and from is just awful. I have joined a gym as per dr say so and I really struggle with the cardio. I wake up tired and it just gets worse as the day goes on. Any help suggestions would be greatly appreciated.

July 19, 2013 at 11:19 am
(9) Kathy says:

I’m Kathy and just like Kathy and Koral! A room full of craft items and they are just collecting dust. Gaining weight and disgusted by myself. I want to do, but just can’t get started. Even making necessary phone calls takes weeks to accomplish. I was just diagnosed with fibro last week and it sure explains a lot. I could be the poster child! My adult kids try to lure me with “let’s go here, mom” or “let’s do that.” Lol

August 6, 2013 at 1:22 pm
(10) A P says:

With all my past 10 years of suffering from cfs and dealing with doctors, I realised that there are a few tests that must be carried out and if diagnosed they should be treated as soon as possible are: hemoglobin, vitamin d, calcium, vitamin b12, thorough hormones, cortisol, thyroid, blood sugar and insulin resistence. Antidepressants better be avoided as they numb your nerves and senses.

Along with that, regular stretching, gradual exercises and keeping yourself busy with some possible activity will contribute to the healing process. Healthy diet will help in general well being and fight against possible infectious and life long diseases. In my case herbal treatment, homeopathy, acupuncture, chiropractice, osteopathy nothing worked.

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