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A MyFibroTeam Member asked a question 💭
Parry Sound, ON

I feel like I have lost control over my body and it is just falling apart. Aside from all of the major symptoms I find my skin is so dry, my hair is falling out, my eyes have become sensitive to light. If I look directly at a light I see spots. I really feel like crap most of the time! I try to keep a positive attitude but some days I just feel like this is getting the best of me.

February 13, 2016
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Answer Summary

Members responded to feelings of losing control over their body with fierce solidarity, acknowledging that aging and chronic illness bring... Read more

Members responded to feelings of losing control over their body with fierce solidarity, acknowledging that aging and chronic illness bring unwelcome physical changes like dry skin, hair loss, and light sensitivity, yet emphasizing the importance of refusing to give up or let the disease define them. Several members shared their personal strategies for managing fibromyalgia, including finding the right medication balance (such as hydrocodone, Tylenol 3, clonazepam, and antidepressants), pacing activities, building rest into daily routines, and advocating persistently with doctors for proper testing of thyroid, hormones, and glucose levels. A recurring theme was making peace with physical limitations while maintaining determination, leaning on supportive partners and community, celebrating small wins and good days, and recognizing that everyone's journey with chronic illness is different and requires self-compassion alongside persistence.

A MyFibroTeam Member

I guess my answer would be. ..my body is not what it used to be. Nothing works as well as it did 10 years ago. My question is would I want to live those years over again. My answer would be no. My pain is less now, anxiety and depression is less now. I am blessed with a pain management specialist,who has been able to manage my medications to a point where they work without continuously having to increase dosages to dangerous levels. I don't take oxycodon which is what some of my early MDs had me taking I had little pain then but I was zonked. It's no way to live I refused to continue to take it when I forgot to get it refilled..I went through a weekend of withdrawal and it wasn't fun. I weaned myself off and never went back. I take hydrocodone only as I need it. I count that as a win in this disease. Sure I hurt, through years of therapy's, for me it's a combination of pain Rx and antidepressants /anti-anxiety meds which have allowed me to be in this state of mind. The disease is not curable, we are not our disease. I don't intend to give up or give in. This state of mind where I can be this way is a combination of Rx, my experiences over the last 20.yrs living inside this disease. I'm blessed I'm still here in the beginning I did not want to be. Those of you who are just beginning this journey are in for many ups and downs in both physical and mental health. This disease plays with your mind. It wasn't until I gave up why me and decided I would not be getting better but refused to get worse. I made my peace with my physical condition. I still have days where getting out of bed is a struggle, I have my share of foggy days, days where I am somewhat wobbly on my feet..I do.what I can and don't worry about what I can't. It's a new concept for me just within maybe the last year or two. Hopefully, this may help a little, everyones journey is different. I was lucky to find excellent medical care and in spite of myself early on, a determination. Very gentle hugs to our all.

February 13, 2016
A MyFibroTeam Member

Have you ever had your glucose level checked? I was feeling like you are describing and I found out I have type 2 diabetes. After I got it under control with meds my hair is growing back and not falling out like it had been and my skin isn't as dry. I hear that diabetes is one thing that a lot of Fibro sufferers also have

February 16, 2016
A MyFibroTeam Member

I've cut back on what I do and at least rest more whether I sleep or not. We like to travel and I usually take a rest when we get to our destination and then get out and explore. My husband is a saint and supports my needs as much as I do his.

February 13, 2016
A MyFibroTeam Member

When I was working the big saying was "Growing old Gracefully" ...what a crock. (I worked for a non profit that provided services to seniors)..... It had to have been written by a 20 year old !!. With every year of aging I find a new attack on my body......But - I'm still here.....and I have no choice but to do my best to overcome and try to stay positive. (TRY being the hardest part) Hope you are having good days as well. ((HUGS))

February 13, 2016
A MyFibroTeam Member

Great answer @A MyFibroTeam Member. I was very fit before this illness took over my life and I'm still adjusting to the changes mentally, emotionally and physically. Someone else on this site said it's OK to have sad, bad days. We aren't
our illness. We don't have to hide it all the time. Sometimes that just makes it worse. Get help if you need it, however you can. And remember that you aren't alone. You have a huge reserve of support on this site alone, and there are
many sites like this. All the best on your journey, @A MyFibroTeam Member.

February 13, 2016

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