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Living With Fibromyalgia - Online Support Group

Managing but it is a struggle

#1

I am still learning the trading off and the pacing. What effort am I willing to pay to do whatever it is that needs to be done and is it worth it in the pain and exhaustion later? Is it only for me or for someone else? Does it have to be me or can someone else do it?

Temperature control is impossible. I am always miserably hot (unless I am freezing). Always. It is 72 in my house right now and I am miserable in a short sleeve tee shirt and cotton ankle pants.

Nutritional testing and learning how to cook differently helped the pain. Learning about multiple chemical sensitivity, getting chemicals out of our house, and learning more natural ways and products helped the pain (a work in progress - not done yet, so gloves and masks and eye protection, and it is much more expensive than chemicals - one product/solution at a time).

I had no idea I was sensitive to my makeup and skin care routine choices (chemicals again!), but moved away from those and the almost-daily migraines stopped.

Nothing helps the fibro fog and nothing helps the exhaustion.

Rxs failed miserably - I was much worse with them than now without them. Tried many different supplements with help from my doctor, but sensitivity issues and negative reactions, so that failed.

I have stickers all over the house to encourage and help me thru the days.

My husband is incredible and supportive and helpful and fusses over me like a mother hen sometimes to take care of me.

I am so blessed and so fortunate. But there are times it is hard to remember.

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#2

The struggle never seems to end. Once you think you’ve got it figured out, something changes. You’re doing all the right stuff. You might add some essential oils if you don’t already use them. I’m pretty amazed at my response to a diffuser. (a machine that spits the oils out in a fine mist) I have my favorite oils that actually make me less anxious, more calm, brighter, etc… I actually found that Lavender lowers my blood pressure when it’s spiking.

Bless your husband for being a real human being and caring about you. We are not easy to live with so he gets extra points.

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#3

Thanks so much for your encouragement! I have not been able to use essential oils successfully because of the multiple chemical sensitivity. My “migraine trigger” can’t tell the good guys from the bad guys :slight_smile: oh well.

I have always been slow as molasses and my husband has been patient for 27 years, but now sometimes he says he has to line me up with a post to see if I am moving. He really is a saint and thankfully a good head on his shoulders because mine is not most days.

I started signing my texts and emails with a tortoise :turtle: which makes the grandchildren smile!

Trying to keep a smile on my face and remember to be grateful: it will not kill me and it is not damaging me. Thanks so much for reaching out.

#4

Welcome to our forum,

There are quite a lot of us that are going through the same issues as you including myself. I am very happy to hear that you have a husband who takes good care of you. That’s really an important thing. My boyfriend isn’t helpful on that front. I get in that fibro fog where all I want to do is be a couch potato. I am on Lyrica and that helps to some degree. If you need anything please reach out to me.

David
Moderator

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#5

Thank you so much for your efforts and support with this website! It is so helpful to so many of us!

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#6

Thanks @ranselmo49. I am a fibromyalgia patient as well. There are a few of us patients who help moderate along with @ModSupport. :slight_smile:

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#7

It does seem to be a payoff trade-off I mean . My husband is also very very supportive , but it is kind of isolating sure that he’s tired of this even though he doesn’t say it and it takes me so long to get a household chore done I only work a few hours a week at target but it exhausts me so much .

How long have you had your diagnos but I don’t really know if it works because I have to make a three and one a one-month prescription last three months because of the expense. I don’t know how to do what I can say to make you feel better than it sounds to me like you are trying very very hard and there’s got to be some I don’t w what medications have been prescribed for you I have been prescribed Lyric.a and ro

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#8

Pacing is necessary. This time of year…the Fall…is the worse time for me too and I don’t do much in general. Even my exercise is minimal. Today, I got up and got the kids to school, swiffered the floors, cleaned up the kitchen, and then straightened things up upstairs. Right now, this is my break with a heating pad on my upper shoulders/neck. Then I want to get some Christmas stuff sorted out. I take multiple breaks during the day. Yesterday, I wasn’t in very good shape. My family wanted me to go to the mall with them so I went and we took my wheelchair. I didn’t have to do anything but be there and that was enough for me. We do only what we can do each hour of the day. No sense in pushing it. I wanted to exercise this morning but doing Christmas sorting and exercise would push me over the edge so better to be safe. And, I still have to make supper!

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#9

Oh, gosh, I’m pretty new to this site, and while I am sorry to hear of so many people’s struggles, to know of them has been so very helpful to me. I’ve had FMS for about 13 years now, 14 maybe including before diagnosis. I’ve been working with a wonderful counselor for over a year, and it’s only been within the past couple months I’m starting to take this seriously.
There are so many activities I’ve become involved in, and more I would like to be involved in, but with working a full time job (which includes regular overtime), I have found myself very exhausted and am now taking a break from most extracurricular activities.
I am single and have cats, and most days just work and caring for my cats is too much. It is extremely frustrating because before the fibro, I was extremely active and had lots of energy.
An article my counselor sent me has proven to be very helpful. I also am reprioritizing what is necessary and what isn’t (what can slide). Fibro is quite the game changer, and it’s a constant struggle and balancing act, and for me at least, learning acceptance and techniques to manage the symptoms.
Here’s the link to that article; I hope it helps someone else as well.

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