Status
Not open for further replies.

PattiD

Active member
Joined
Jun 23, 2015
Messages
59
Reason
DX FIBRO
Diagnosis
06/2015
Country
US
State
Florida
Hey everyone. I haven't been on for awhile.
I dislike my meds making feel like a zombie. I think I would rather handle the pain without meds. Its just so frustrating. :roll: I feel like a test dummy for some of these meds at times. It's like here try this, maybe this will work.
The other thing that bothers me is when people tell me I should move about more. I do get up and move around, swimming, and other things but I do so with a cost.
I've also been having a hard time with my emotions lately. The way they go up and down all the time you would think I'm a rollercoaster. I put on a good face when I'm in public but at home its a different story. I can be myself with my husband because he does understand what and how I feel. I'm just so tired. Don't get me wrong, some days are easier than others.

I miss the me I used to be. I'm still "me" but just slightly different. I have pain all the time, I can't remember things like I used to, I start shaking all over with the least little bit of effort, I have no strength in my limbs, and I feel like I'm useless. I do not like this feeling. I've always been an independent type of person and now having to depend on someone for anything feels degrading. The tears these days are closer to the surface than they have ever been in the past.
I am trying to be strong but sometimes I just want to put out a "do not disturb" sign and curl up in a quiet, dark place for a while. :cry:
I'm done venting for now and thank you for listening.

Gentle hugs to you.
 

SierraTrout

Active member
Joined
Jun 28, 2016
Messages
39
Reason
DX FIBRO
Diagnosis
06/2016
Country
US
State
CA
Oh, PattiD, I feel your pain. I really understand the med dilemma and feeling like a guinea pig. More brain fog seems to be a side effect of some meds but I can't always tell if it's the med or if I'm just having a really bad brain fog day. Very frustrating. I try to keep a log of my reactions to meds and physical activity, but even doing this simple task is often overwhelming. It's hard for me to figure out what to do next to help myself as the fog keeps my head spinning off course.

I was diagnosed just last month, a year after you, and am still having a hard time accepting the diagnosis. I'm still fighting it, trying to pretend it's a temporary condition and I'll be myself again any day now. I also put on the happy face when I'm in public -- can't bear to let others know that I"m not the competent, super athlete I used to be. When acquaintances ask how I am, I always say "fine"; I'm still not ready to disclose the reality of my life when behind closed doors. My close friends know of my diagnosis but I rarely talk about it as I sense they don't get it. One even said, after I explained fibro to her, "wow, the mind is a powerful thing". Arrghh. Also, people just don't like listening to others' complaints all the time and I get that. That's why this board is so helpful as we can exchange our tales of woe and not be judged.

I hope today you are feeling better. If not, hang in there as there will be better days ahead, there always are.
 

Ruralchick

Senior member
Joined
May 2, 2014
Messages
325
Reason
DX FIBRO
Diagnosis
09/2013
Country
US
State
AZ
We Americans have independence ingrained on us. The truth is, we are not so. We do need people throughout our changeable lives. We like to think we are in charge of our lives but it's quite evident with FM that we are not. Why should it be shameful to ask for help? Why should we feel guilty? Do we feel guilty when we take our cars into a mechanic, or hire an electrician, etc.? We can't know it all or do it all. I think we also hate dependency and the humility that comes with it. Do you mind when someone asks you for help? No, in most cases we are happy to lend a hand. So this is where we are, if we can accept that we won't struggle to quite the extent that we do. As a Christian, when I am asked to help out I feel blessed, as I have to tell my elderly mom all the time, don't rob me of the blessing of helping you. Now it is us who need the help, that is the reality of it.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
I think we all have independence ingrained in us...it's human nature to want to feel strong and in control of our lives and bodies .

Society has a habit of looking down on being ill especially when the condition is invisible.... and maybe it helps in someways to keep up our public persona.

I sometimes wish I hadn't confided about my health to even some of my family and friends as they do not really want to know and have made comments that simply make me feel worse.

I also hate needing help.... but appreciate it.

I bet your husband loves you so much he is happy to help.....try to think you would want to help him if he needed it.

Haven't heard from you in a while PattiD. I hope your feeling a bit better now.
 

PattiD

Active member
Joined
Jun 23, 2015
Messages
59
Reason
DX FIBRO
Diagnosis
06/2015
Country
US
State
Florida
First of all I want to say thank you. This is why I'm glad I joined the forum.
I'm doing a bit better now, all things considered. I'm weaning off of one of my meds and increasing my gabby, so it makes for some interesting times. I'm a little more balanced now.
I do have a loving and understanding husband which helps. We usually take turns taking care of each other, as he has Chronic Calcific Pancreatitis. So we truly understand each others pain and frustration.
I am learning to ask for help when I need it. I consider myself a "work in progress".
 

gryfalcon

Active member
Joined
Mar 24, 2016
Messages
55
Reason
Caregiver
Diagnosis
06/2011
Country
US
State
TX
My teenage daughter was exactly where you are. You are saying so many of the same things. She got to where you are at, and she did decide to quit the medicine, and eventually, quit the doctor entirely. It was also impossible for her to move around and exercise. People who say that have no clue. It's ridiculous. Walking (or -- on bad days, crawling...) to the bathroom is like climbing Mount Everest. She did actually crawl on some days. That's how bad it got! Finally, though, she did find things (not the doctor and meds) to help her start feeling better, and when she felt better -- lo and behold -- she was able to move around more and that made her feel even better. I wrote another post with all the supplements that we use. We have to use a very long list of supplements, every single day, but it works and gave her her life back, whereas the doctors and the medicine didn't do a thing and made her feel worse. Of course, she still has days where she feels awful, has pain and needs to vent, too. A few days ago, she was out with her friends playing pokemon go, standing in the park near the lake, when a pain suddenly hit her in the leg, and at the same time, she greyed out, and ended up falling into the lake. She didn't even remember falling. She just sort of woke up in the lake, and got water damage to her iphone! It's sort of hard to have things like that happen to you in front of your friends, when you are only seventeen. It can be a bit embarassing! That's just a day in the life with Fibro. I admire how she takes it in stride, runs home and changes, and gets back out there!

I admire you, too, the way you keep going!

I think this culture is sick, in the way it makes people so alone. Families should operate as a unit, compensating for each other's weaknesses, and supporting each other with their strengths. You have a great deal of wisdom and experience and understanding from having Fibro. You understand compassion, and can give it to others. It is like gaining a third eye, a new way of looking at the world. You have that to offer your family. They can offer some muscle, once in a while. It's a fair trade. It's not helplessness, it's just a different way of contributing.

If you want to try something new and aren't trying it yet -- Natural Calm at night. a hot drink with 4 whole grams of magnesium. It's absolutely amazing for pain and stiffness the next day. Methyl-folate or metafolin (you probably have mthfr), methyl B12 (if you take methyl folate, you'll use b12 faster so you need this, too) and Twinlabs Stress B or something similar -- B vitamins are a must to help your nervous system heal and stay strong. And -- lots and lots of D3, of course. And - don't knock curling up in the dark. It's a great remedy, sometimes.

I hope you move through this to a better place.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
gryfalcon you are a credit to your daughter...if the world took on your philosophy of caring for each other within family groups and friends showed a little more compassion sometimes I believe many of us fibro sufferers would be more likely to improve.
 
Status
Not open for further replies.
Top