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Living With Fibromyalgia - Online Support Group

Hey all! Missing you so much

#1

I'm so ready for Life to slow down, but, it's one thing after another.

These questions don't have a thing to do with me, but, my 12 year old daughter. Here's what is going on:

About a year ago, we lost my dad. He lived with my daughter and I for two years, he my best friend, and took on the role of 'daddy' in my daughter's life.

For the last three years, she's struggled with some respiratory issues, that had gone undiagnosed, and the treatments given were ineffective.

In June, we were both blessed enough to begin seeing doctors with heads on their shoulders. A few months ago, she was diagnosed with Asthma, Small Airway Disease, and Fibromyalgia.

I had brain surgery a few months ago, and have to have another in a few months.

I myself have severe Fibromyalgia, Trigeminal Neuralgia, 4 herniated discs, and Degenerative Disc Disease.

This kid has been dealt some real crappy cards in this game of life lately.

Yet, she's strongand happy.

I'm determined to keep her in school, we have some special considerations in place for her at school, via the ADA section 504. As I have chronic pain myself, I'm sure I'm tougher than a 'normal' mom would be, when she's having a hard time with pain at school. After many different organizational methods, she's still terrible when it comes to doing assignments, and doing makeup work when she is absent. The problem is, she just doesn't want to do it.

The amazing thing is that, that's really the only issue we have.

Many of us have been there, once the pain starts getting bad, interfering significantly in our lives, the anger of 'why me', seeing 'normal'people, and feeling jealous. She's back and forth in accepting that this, for now, is life.

My questions,

1. Are there any people in middle/high school, that could connect with her here? We all know how beneficial it is to connect with others in our situation. I'm aware that there is a young adults group here, but after checking it out, it seems that the majority of people in that group are in their 20s & 30s.

2. Any suggestions, nuggets of wisdom for us at all?

#2

I have a son who is 19 & he deeply regrets not doing his homework or getting good grades, it totally fouled up his chances in getting Grants for college & which colleges would accept him.

#3

What about online school? Look into it.

#4

Hi, blueeyed girl.

I am very sorry to hear your young daughter has Fibro. It always saddens me to hear of young ones with this illness. And, that you yourself have Fibro as well and are here in search of answers and support for your daughter is a testament to the love of a mother. It's really beautiful. I am glad you have one another. Our community has many members who are Moms who I am sure will be able to offer advice regarding your daughter. I also believe we have some members who are under 20. I myself just wanted to offer my moral support and let you know you are not alone.

Stay strong together!

Hugs,

Laurie

#5

Hi Blueeyed Girl, I echo what BaltimoreBaby said, it saddens me to hear of young ones diagnosed with this condition. However, although her life will be different than what she thought it was, that doesn't mean it is going to be worse. Yes, she is facing some difficult challenges especially at a pivotal age. On the positive side though, I know many people who become much more self-aware, compassionate, and empathetic when living with a chronic condition. I am a single parent with a 10 year old daughter. I have had Fibro since 1998 but only told her about it a few months ago. Since then, she has been much more empathetic with others in the community. Every time she seems someone walking slower or looking like they are tired, she says (quietly) "oh mom, maybe they have what you have." Your daughter will learn how to be kind to herself, that is something a lot of people don't learn how to do. Regarding schooling, your daughter is lucky to have a strong advocate. Only you and her can determine what is best, I truly believe that for me personally the more I try to keep a "normal" life (i.e. work) the better I do overall. I have taken breaks when needed, once for 6 months but in the end I think I do better trying to keep busy to the degree I am able. It becomes a juggling act as I am sure you well know. Regarding other younger people on here, you can search "high school" or something like that in the discussions tab, I recall several people saying they were in high school - you might be able to connect that way. And PLEASE be sure to take care of YOURSELF as well! Hugs!

#6

Thanks so much, such awesome people here!
As far as the online schooling goes, it’s available, but, I’m going to be keeping her in school, the social aspect, and the general idea of that life experience is too important.
She’s so much like me, that, if I take her out of that atmosphere, severe depression will follow. She needs that social contact. If things get super bad for her, then, It’s a possibility. I appreciate the suggestion!

#7

I have had this disease for as long as I can remember. I never participated in sports because I didn't have the energy, and at that time, FM wasn't recognized, so I was just lazy :P

You might check with her school counselor, as there may be some avenues you haven't explored yet for groups? Is she interested in other things that aren't as active? I took a lot of art classes in high school. But it is difficult when you are different from your peers, but you don't look different. I don't have a lot of advice, because like I said, it wasn't recognized when I was in school, but I wish her the best and if she wants to talk to any of us, I am sure that we would all try to help her as much as possible.

#8

Hi, blueeyedgirl. How’re you and your daughter coping? I know this post is a little older, but you had mentioned you were having brain surgery and I wanted to check-in. I hope this finds you both in a good place.
Hugs,
Laurie