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Living With Fibromyalgia - Online Support Group

How to explain to family and friends what you're going through?

#1

I've had trouble explaining to friends and family what exactly it is that I go through. How have yall explained?

#2

Go to the Emotional Support started by Petunia, she can give you the exact place to find it. M

#3

I also shared my daily journal with my Hubby and a few others that are close to me. That helped them to gain a better understanding of how I am feeling.

#4

Hi. I think in my case there was so much going on with my health that it was very apparent to my close family and friends. We all wanted to know what was going on. I think if people care and are concerned they will want to know as well and then providing information from doctors and credible articles can be a helpful thing.
All the best!!
HUGGGGGS

Suzie

#5

When my pain level is high or I’m feeling fatigued I let my family and friends know. It took many years for my youngest daughter to accept the fact I was sick. I try my best to live my life to the fullest. It helped when I stopped working and began exercising and making healthy choices. There maybe persons that don’t understand but it’s ok because I don’t have any control over what people think.

#6

Even though he is very supportive and helpful, my husband had a hard time really understanding how I was feeling. When we first met I was a lot more active and energetic, but over the past few years I’ve been having flare ups more frequently and with greater intensity. There are days when I seem like a completely different person than I was before fibromyalgia. We always send each other text messages with links to interesting news articles, so I started to text him links to information about fibromyalgia I would find on the Internet. After reading about it he has a better understanding of what I’m going through. Having the information come from a variety of other sources seems to have opened his mind.

#7

When many rheumatologists do not understand pain, you can see how difficult it is to convince your family unless they are very understanding. I buy small notebooks 3"X5", 3 to a pack for 99 cents and keep a daily log of the pain meds I use. Every pill etc I take I log the date, time, what I take for instance 10/325 h for Hydrocodone, and where the pain is and how strong it is. I have 10 of these notebooks full so far and when I have an appointment I put them on the table where the Doctor can see them, let him look thru them and ask questions. It makes a difference for they immediately see you are serious, and realize when they ask the question of what is your pain level today 1-10 it really does not make much sense since you are on pain meds continuously. With your family you have to show something similar so they realize what you go thru 24/7. Be consistent and do not stress yourself just to impress someone, it is not worth it. When you have fibro, you probably have other problems too. For instance I have something else that is systematically destroying my muscles and joints. Both knees have been replaced and today ai am having pain so bad in both shoulders that the 125mcg-hr fentanyl patch plus 10/325 Hydrocodone helps very little. One more thing. If you can get utube on your TV or your computer there are very good videos that doctors have made, Tje best I have see is from Dr. jean Mackey. Watch them with your family and if that does not convince them of what you are going thru then nothing will. Good luck

#8

Sometimes people just don't want to accept that mom and/or wife doesn't feel well. Just make the explanation SIMPLE and ask a family member to do the laundry or wash the clothes or it wont get done because you need to lay down. then take care of YOU. sometimes when you force them to see the consequences they get it. if you just keep trying to do everything , they expect you to keep going. keep it simple Carolyn (had fibro 35 years).

#9

Sorry but I made a mistake. The video on utube is my Sean Mackey, MD PHD from Stanford Medical one of the preeminent researchers on fibromyalgia. You can see the hour long video on utube at

http://tinyurl.com/p2nl9xp. Hope you and your family enjoy it, I did

Tom

#10

The only one who understands is my younger daughter. All others are totally gone from my life. It's sad, but nobody cares anymore.

#11

I would love some help with this as well. I’ve been diagnosed almost a year and my husband and my relationship has been getting very strained by our/my new roles and changing lifestyle.
I’m going to follow this conversation.

#12

As soon as you figure it out let me know please. I love my family so much, but sometimes i wish they could take a day in my shoes. Just one. Then they would know why what is normal for me/what they expect from me is so hard.

#13

Hi, I’ve always found “The Spoon Theory” (just google it) very helpful in trying to explain coping with an unseen illness. Often people around you have their own ways of reading your “tells” …that’s what my sons call it. Apparently my eyes look different and they read my signs of fatigue by noticing the difference.

#14

I am very lucky in that I just told them and my husband goes with me to the Dr. My Dr was very happy to explain to him and the rest of my family accept me no matter what that the best thing about Family'

#15

I live with my Mom. We have both the benefit and misfortune of having seen illness before. However at first she just couldn't grasp my ' laziness'. I was raised that you were up and going seven days a week by 7 am. So when I went through my first and worst bout with fibro she just didn't get it. I would force myself to work all week then crash all weekend. I was barely functioning. It's taken years for her to understand. Some people just never do. I found a picture on Pinterest that I showed a good friend. She has stuck by me even though she didn't understand. It says what Fibromyalgia would look like if you could see it. It shows the nervous system all inflamed in red and the body covered in bruises. Not pretty but sometimes a visual helps. With Mom it was gradual. I would explain to her patiently from day to day what it was doing to me. She's now my caretaker and greatest advocate. Not to long ago I was diagnosed with M.S. as well. It's been a long road, but I've found the people that truly care will work to understand. Even when they can't they will accept. Since you are talking about family be straight forward with them. ' This is what is happening today, this is what is does to me , this is why I can't do xyz. I love you I wish I could'. No apologies no excuses. You aren't doing anything wrong you are sick , that is not a crime. Know that you have help here if you want it. Be blessed.

#16

I'm sorry you feel so alone. There are times that people just don't rise up like we thought they would. If possible keep that line open so they can follow it back someday. If not branch out like you are doing here and find new people to fill your life. You are not alone. We care.

Marsha16 said:

The only one who understands is my younger daughter. All others are totally gone from my life. It's sad, but nobody cares anymore.

#17

I was able to have a doctor explain things during a chronic pain management support group that I attended through my local hospital. It really helped. Sometimes people just need to hear it from your doctor. A letter from your doctor might help too. I found that informational guides and Internet information was extremely helpful to me but not convincing to them. I think maybe most don’t WANT to believe, it’s inconvenient for them.

#18

With my husband it isn't hard now - I've been diagnosed for about 13 years. He sees that I am unable to do what I used to do - household chores, social activities, crafts, etc. With my friends (mostly my closest ones) I will describe a typical day. They see me and can't see "signs" of this condition so I explain that if I do "extra" then I "will pay later" a day in bed, little functioning. I don't tell them every time I see them or talk with them, but every once in a while a short "review" seems to help. They know I work part-time and I am therefore not able to do much more on those days.

#19

"The Spoon Theory" works well, especially if you actually do it with spoons. A far as the pain, I usually ask people to think of how their body hurts after starting a new workout. When they say okay, I then explain that's how I feel every single day.

#20

I have had Fibro for several years now. I have 4 kids, 3 are teenagers, 1 is 11 with Autism. My family honestly does not understand Fibromyalgia and the kids don't really care. I basically do all the housework and errands and they don't do anything. They get very tired of me being sick and tired and my husband who tries to understand Fibro thinks that I will have an off day and get through it and get over it. I did GF for almost a year and saw a little improvement than went back to my normal eating habits, mostly due to emotional eating. He thinks GF is my answer and I guess I just don't have anyone to support me and there are days where I feel like its better if I wasn't around because I feel like I am such a burden and a failure.