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1st Year With Fibro
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Padme posted:
So it's my first year with this partner Fibromyalgia of mine, first seven months. Im 29 and I'm really struggling with all the loss that has come with it. I feel like no one talks about the loss. 1. Loss of Job 2. Loss of BF 3. Loss of "Friends" 4. Loss of Apartment 5. Loss of sense of identity 6. Loss of independence...

Those are just a few I experienced in the first three months of figuring out, what is wrong with me??

Its freezing on the East Coast and I want to go move to Hawaii and live a simple easy life. Everyones invited xoxo

I'm just looking for some friends and support and to be a support for others as well. I really hope everyone is having a nice day today <3
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jennagale76 responded:
I understand exactly what you feel. When I allow myself to think about how much I've lost, it makes me so sad. I want 'me' back, the one who used to be able to kayak 15 miles and hike 7 miles (barefooted!) with no problem. The one who could stay up late with friends, the one who was strong and independent. I wish I could wrestle with my kids, and play baseball with them and climb trees with them. I wish I could still go to work and be a normal person. It takes everything I've got to get through each day. It's sad. I think a lot of us don't talk about the loss because it's depressing. For me, I try to stay positive because it could be so much worse. But I do feel the loss of myself and I feel guilty about it too. I feel guilty because my husband has to work to support us, and I can't contribute financially. I feel guilty when I'm too sore or tired to play with my kids, or spend private time with my husband. I'm in my mid-30's, and I wonder how I'm going to feel when I'm 60, if I feel this terrible at 36. It's scary and sad.
 
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BetteK responded:
Padme, you really got a rude awakening this past year. At least you live in a time when FM is considered a disease, when there are some treatments available, and when even primary care physicians recognize your ailment.

FM wasn't even officially a disese until 1990. The first fibro drug (Lyrica) has only been available less than 10 years. Imagine what this past year would have been like if your FM had presented in 1972. You would have gone from doc to doc trying to find answers. You would have had every test known to modern medicine and passed them all. So, of course, even the most sympathetic MD would believe it was all in your head. That's what it was like for me and for all of us back then.

I hope you are using your good days to find a suitable home, a doc you can work with, and carreer exploration with someone who can take your physical limitations into account. (Most states have programs to help you with this. The government wants you to be able to work--and pay taxes.)

Once you have a combination of meds, physical therapy, stress reduction, and whatever else you need to get your body to a managable state, you can start rebuilding your life.

The lady who runs the Fibromyalgia Network newsletters lives in Arizona. She says that people who move to that warm, dry climate seem to do a little better at first (especially if they move in the middle of a frosty winter), but that it evens out after a while. After all, her FM is why she started her newsletter.

As to your "friends," would they have deserted you if you had arthritis, or diabetes, or cancer? You have an invisible illness. It effects every part of your body and your life, but it is very hard for others to understand. (My husband was my biggest supporter when I went on disability, but he's less supportive about my not being able to work around the house. Think about it, is there anything that is more apt to trigger a flare than vacuuming with its repetitive motions?)

Some of your friends may be able to accept your new situation and your new "normal." Treasure them. If they ask what they can do to help, give them some little thing that will take some pressure off you: picking up milk at the store, driving you to a medical appointment, whatever you need. There will be days when you can repay the favor.
Trust me on that. There are good days, once you are on the right program for you.

For better days,

BetteK
 
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booch007 responded:
Good morning,

There is alot of loss that happens with a change in self. BUT I would like to say there is always change in life.....

I have changed, changed everything about me and around me to accomodate my dragon that follows me eachday.

I bought Corelle dishes, the lightest on the market and they don't break when i drop them with the numb hands i can get..
I bought a front loading washer to help with the pulling* that laundry creates....it was looking at my triggers and finding an answer to do it differently.

You must go into survivor mode.....Hmm what "I can't do" then, yeah well we'll see.....I can do it this way then!

My job changed, that was hard to give up who I was...to what I was to become....transistion is tough. BUT I wasn't giving in, I will never give in*. There is a saying....

"If you don't bend you will break!"

OK, so I bend and I bend alot. try not to be a victim in this...be a champion. It is early in this disease diagnosis and you have work to do and education to put under your belt but it will get better and you can get a life in there.

To be proud of the success you create is priceless. I hope you don't fold up and lose it all. Transition to a new you. Accepting the new you will take time and those who follow you on the ride are the ones you want with you anyway. My world has gotten smaller and it is OK. I lament the old me often, but it is OK to be the new me. How I handle it, is what I am most proud of.

OK, welcome to the fmily and definetly stay and learn here and share here.

Look in resources under a topic by Caprice....The members toolbox...it has many comments by the fmily of how they survive. It is long but it is valuable.

Hugs, Nancy B
 
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booch007 responded:
Hey it is me again...

The toolbox was buried deep so I pulled it up for you.

Good luck, I hope it helps to see so many dealing with this disease. Hugs Nancy B

Member Toolbox
http://forums.webmd.com/.f0324a2?@guest@
 
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dakotaspirit1957 replied to booch007's response:
Hi... There i a lot of change with a lot of things in life... Unfortunately illness is a leader in creating that change...

So many changes... In ourselves... physically... mentally... spiritually... abilities... And In others... Either it bonds us closer together or we push them away or they run...

A Dr once told me that there are two things that test a relationship the worst... 1... to go from having money to poverty... 2... to go from health to chronic illness... You will see if you are truly loved unconditionally or not... And you will test your ability to accept unconditional love... And accept yourself when you are left to stand alone... So to say...


In my belief I am never alone... There is always me... And God and family here and my children who have always been by my side... But when I am bedridden... I feel alone even with my family taking care of me at times... It is hard to keep sense of ones self when you are so ill... But it is easy to say thank you when I get better...


It is hard in the beginning... I became ill over 30 years ago and was told that in 50 yrs they would know what was wrong and another 50 cure it... It took I think about 26 maybe to figure it out why I had the constant pain... Wasn't my MS... or my RSD... or my Parkinson's Disease... or my Neuropathy or my other diabetic complications... or my several other structural problems... {like they call them lol}


When they added treatment for FM my pain level did go down some but I couldn't tolerate the meds... So it is easier exercise and Tramadol and some muscle relaxers and my psych meds help a bit... And 2 opiates help... I am not pain free but tolerable... With all my illnesses I am disabled and can't work... So I don't blame the FM for that... But I am sure it helped...

I resisted change and rebelled loudly... I threw crutches and wheelchairs across rooms and was made to pick them up to get somewhere... I cried and screamed this isn't happening to me... But then I ran across a little 8 year old brain cancer patient who taught me so much in life...

She taught me how to survive in all this pain and how to reach out and help others so I am helping myself... She taught me to stare down the odds and not to let them win... Not to let my illnesses rule my soul and my life... She taught me hope even tho there was no hope she was to get better... She died at peace... Knowing she left all she had to give this world... That she left the greatest message in my life of all... "I am not a success because I make a tons of money and or tons of friends... I am a success if I reach out and touch one life in a special way so that person will remember me in a special way when I am gone..."

Let me tell you... She was a very very successful little girl... I pray daily to follow in her footsteps...

Change takes a lot of acceptance of both it and of ones-self... It takes practice... daily and moment by moment diligent effort... And I believe a lot of passing it on... Believing in yourself and your ability to accept your life and your illnesses and life enough to reach out to others ultimately helping yourself... Being human it is not always an easy task... But sometimes like today because of you it is...

Thank you for being here... Take care... Love... Jan/Dakota







 
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Anon_10089 replied to dakotaspirit1957's response:
Hello and sorry for your recent struggle. I thought I'd weigh in since I'm in your age group--I'm 30. Although I believe I've had FM as a child, it didn't effect me too much until my early 20's. I got married at 22 and I think just that added stress, albeit a good one, really kicked off the FM.

I think I had uncontrolled pain for about 5-6 years after that. We didn't have health insurance and I knew going to the doctor would entail expensive tests that would show up negative. So I didn't do much for my pain or sleep problems. I ended up in a very bad spot--emotionally and physically.

Finally, we had health insurance and I was able, through trial and error, figure out some pain control. I also bit the bullet and began taking a sleep aid every night (OTC). Also, I really took control of my health. I have to say that it took a few years, and it seemed imperceptible, but I do feel better now. And there is no doubt that I am more functional.

There is a light at the end of the tunnel. I believe I was able to get here by having some pain control, by getting sleep, by exercising, and by having a mostly healthy diet, low in sugar and carbs (that's healthy for me).

I still have bad days and I still get frustrated by my body. But I try not to feel guilty when I need to rest and don't get much done. Having FM is such a process.

I hope things will get better for you. This is a great place to come and talk or read!


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