Hi there-
I'm wondering how you all try to get your family to understand this condition? My husband is the only one that is truly supportive. He listens and helps, although I know sometimes he gets frustrated with me (understandably). My children are too young to discuss any of this with. I'm actually referring to parents, siblings, ect...

It seems that when I first told everyone I was dx'ed with Fibro, they were a little concerned and wanted to know what it was. But after explaining (and they may have done their own searches on the internet) they have never really offered any kind of support to me. They never ask me anything about it and never ask me if I'm ok. Since I "look" fine, they assume I AM FINE. But I am NOT!!!

I push myself so much to do the things I want to do, and to prove to myself I am still able/capable. But my biggest heartache has been the lack of support I have rec'd from my loved ones on the outside. I guess I shouldn't care - my main focus should be on getting better. But I think if I had something like MS or Lupus, they may be a little more responsive. I am a very sensitive person, so that may be why this bothers me so.

Any suggestions for me? Please?

My parents and siblings don't really comment much on my fms. They know I have flares. My husband went through onset with me so he understands and my kids do too. They are all supportive. I also had them read "Fibromyalgia and Chronic Myofascial Pain, A Survival Manual" by Devin Starlanyl.

I am learning to set limits on my activities and ask for help. My kids and husband will help me with anything. I don't carry laundry anymore. Someone warms the car up for me. I don't vacuum anymore or scrub out the shower. And I don't grocery shop or carry groceries. I used to do all these things but I kept flaring since end of October and realized I had to cut back. I am feeling so much better. I just kept throwing myself into flares and they kept getting worse. I also don't make committments, if i am invited or asked to do something sometime in the future, i say i will try if i'm not flaring.

Hi Lovestar ;)
I wish I had an answer for you but I don't so I thot I would just commiserate with you!
I too have a family that is less then understanding. I've been struggling with them over the last year or two, trying to get validation & realize its a lost cause. When I was first diagnosed with fibro, they convinced me that the doctors were wrong & that fibromyalgia was a mental illness that only "hypochondrics" get. So for the first year after I was diagnosed, I was in denial myself about having fibromyalgia which is a bad place to be. Therefore, I wasn't taking care of myself or pacing myself the way that I should be. As time went by and the symptoms worsened I realized that I had to have fibromyalgia as all other related diseases/conditions had been exluded through medical tests. I have to say that being in denial was easier in some ways. Once I accepted that I had fibro I had to live like I had fibro. Which meant pacing my activities & saying "no" sometimes. That was where the real problems started with my family. My family goes back & forth between saying "fibro isn't real" to "i know someone who has it & they live a perfectly normal life so you should be able to" as well as "you could cure yourself if you ate better and/or exercised more". So when they would call to ask if I wanted to go somewhere or come to dinner & I was flared up I was in a tuff spot. You see, if I go even tho I don't feel well, then I hear "whats wrong with you? why you so quiet?" And if I don't go then they are upset & quit inviting me to go.
The advice I have been given from friends who are supportive & understand what i'm going thru is to downplay your symptoms & quite trying to get them to validate your feelings. I know this can be easier said then done & it hurts terribly to not have support ---- and most of all from family. But there are just some people who aren't going to understand. There has been so much miseducation about fibro & unfortunately, some still believe it is some form of mental illness or hysteria.
I have gotten to a point where I just don't talk to my mom about my illness. If i'm on the phone with her & she asks how i'm doing, I tell her i'm fine even if i'm aching from head to toe!!! Thats what she wants to hear so thats what I tell her. If I have to vent, I do it at my support group or my boyfriend who luckily for me is very compassionate & understanding about what i'm going through. I think that just like the doctors we choose, you need a support system available to you so you know that you aren't the only one who is suffering. And if your family isn't supportive, avoid the subject with them & get it where you can. It's important that you share your feelings with people who aren't going to judge or criticize you when your at your lowest.
:angel:
That being said, I wish you the best ;)

My 6 yr old is the *only* member of my household that actually mentions/asks if I'm feeling ok - because he's the one who is affected the most by it. If I've done all I can for the day (cleaning, or cooking) - he pays the price (when I can't get down on the floor to play a game, or when I say "ouch" when he hugs me 'too hard' ).

One thing I believe in, though: You cant change other people, or their actions, but you can change yours.

In other words, if someone isn't supportive even after you mention you'd like support - and how you'd like support (because they aren't mind readers), then you can change your actions by choosing not to be around that person. Or, you can choose to live with their lack of support.

Always remember the power of your life is still your hands - even if your body is often out of control! ;)

-Cindy

I wish I could help. But honestly, I have had the fibrHOPE website saved in our favorites for months, and asked my hubby to read it. He will not. He can spend hours on the computer, but he can't read anything about my disorder? It is hurtful, but it is out of character for him, I wish I knew why, or what he is afraid of, but I don't. I have enough to worry about. I wish I had a magic bag of tricks to make all of our lives better, or at best more understandable to those we depend on.

I am truly very fortunate that my immediate family is very supportive. They know how energetic I was prior to the Fibro and they have been helpful in any way possible.

My brother and sister are supportive verbally. However, they live in different states and have made no effort to come to see me in the past 5 years. In the past I have been able to drive or fly to see them, but now I can no longer do so. Their actions have not been supportive. I find that pretty painful to deal with at times.

I no longer do grocery shopping or clean the house in the fashion that I did before. I am able to do the laundry and cook the meals. I have gone from holding an upper management position to doing transcription work at home.

However.....I am truly greatful for what I do have AND for what I don't have!!

Hang in there. We can find family in many different places. And with that we also find support and love and caring.

Fibromyalgia is hard to diagnose, hard to 'see', has no visible evidence, no lab work, xrays, or inward testing that tags it as a 'physical problem'.

It does not discriminate, it is unmeasurable in the amount of physical pain it causes, and it sneeks up and causes depression, insomnia and a mental fog that can be crippling at times.

It is very real.

Just hang in there and reach out to the people who have it, who don't have it and are empathetic, and to those who do not stand in judgement.

Thanks for sharing. You have helped me far more than I have helped you!!

Barb in Houston:angel:

to doing transcription work at home.

Me too! Can I ask what company you're working for?

I'm just getting started in the from-home and I'm really excited. I have one more week of training left before I go on the payroll.

Hi,

I work for Voss Transciptionists, but have worked for others as well. Right now I can only handle doing work for one company, but I usually work for two.

Let me know if I can help you find some work!!

Barb

I would love to do something from home. I feel like I don't contribute enough. I know I can do some work, maybe 5 hours a day, so a friend told me about a site that does surveys, and all I have got was a $5 KFC gift card, after 25 hours of surveys, and millions of phone calls from people all hours of the day and night. How does someone go about getting into this?

Barb,

You said you work for Voss Transcriptionists. Are they pretty descent to work for? Would you recommend looking into them for home employment?