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Living With Fibromyalgia - Online Support Group

Sometimes I don't know myself anymore

#1

Fibromyalgia, mention that you have it..... How many of you get "eye rolls" that indicate the person your talking to thinks it's "all in your head". "You don't look sick", "oh c'mon, it can't be THAT bad", and the worst, "Deal with it". I can honestly say, it's like an alien has hijacked my body, I don't even know who I am anymore. I used to be active, walk, run, ride bike, up late, have boundless energy. Now, I clean for 1/2 an hour and I've got to lay down for 2. And late nights? Well, now 8:30 is "up late" for me". I hate what this illness has done to me, the fact that I have no energy, and can't remember crap. I hate that people say "you don't look sick", or think it's all in my head. I feel most days like I have to just "suck it up" and deal. I hate that I can't sleep at night and have to lay down during the day, hate that my brain is constantly in a fog, and that I don't have energy. I hate the depression that comes with this illness, and it is just that, an illness. It isn't "in my head", the pain is real and some days all consuming. It's nice to have a place to get these feelings out with people who "get it"


#2

Yes, we all "get it" here. This week on one of our other communities a member posted a link to this article by Toni Bernhard the author of "How To Be Sick". What particularly resonated with me was how you have to create a new life with your chronic illness. I feel that not only have I had to make a new life, I've also had to make a new "me". Reading this article this week has made me realise how far I've come and also how far I have yet to go. JulesG (also with FMS)

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#3

I can totally relate to what you’re saying. This is my first reply to anything, as I’ve just become a new member to this website. But, my dad actually had the conversation_emphasized text_ with me a couple days ago and used those exact words, “Oh, come on, it can’t be that bad.” He also went on to say, “You never had any of these problems as a child. Even just a few years ago you seemed fine!”

I try to turn to my dad for advice when I feel like I don’t have anyone else to turn to. But, lately, he’s been so judgmental over this. He said, “It’s a disease that typically affects women, Dave. How did you get it?” I don’t know the answers to these questions. Maybe somebody out there does.

I’m 34 now and was diagnosed 2 years ago. I hadon’t been diagnosed with ADD as a kid, so now I don’t know if I’ve just gotten a relapse of my ADD and can’t concentrate, or if it’s “fibro-fog” or tiredness, or that I didn’t hear, or just forgot.

I know what it feels like to not be taken seriously, or to be seen as healthy and normal…until I try to get out of bed, or up from a movie theater seat after sitting for almost 2 hours. Or going through a grocery store loading up a cart and having it get progressively heavier and, struggling to push it despite the pain in my arms and legs because, well, I’m a guy and I can’t look weak.

As for the depression, right now, I’m the worst I’ve ever been. I have no outlets to turn to. I’m alone in this. I don’t have support from puerile who understand what this is like. I’ve shut myself out of social events. I’ve distanced myself from others because I’m sad. Sad that I’m dealing with something that I don’t really understand and nobody has given me answers. I’m sad because I’m 34 and going through this. What is this going to do to me at 44? 54?! I feel like I’m holding my fiance back from her life. I had gotten to a point where I’ve become complacent in our relationship and she has become fed up with my depression. She said she, “has no idea what I’m going through, but I’ve been so sad for months and in so much pain.” I’ve missed a lot of work and she’s worried about my bills and my finances. I’ve come out with the truth and told her I’ve been drinking more lately, gambling compulsively, and staying out for hours after my work shift at night because we work different shifts and when I get home everyone is asleep. So I have to be quiet, sleep in another room, and I don’t see her during the week until we’re both off on the weekends. It’s hard when the one person I want to depend on, I wait all week to talk to. So, I stopped relying on people being there for me at all. I shut down. I put up this wall to keep others from knowing what this is like because nobody understands. I figure, if I stop talking about it then I can’t be judged for it anymore. And then, I feel just like that picture.

#4

Hi @Doxiemom4ever and @Dave702,

Doxie it’s so unfortunate this happens. I don’t get the looks of craziness but I do when I go to pick up my pain medication at the pharmacy. When there is an issue with the prescription and I get frustrated I get the attitude. I also have had Heart and Kidney transplant so I LOVE when I mention to someone that my back is bothering me or I groan and they say “you’re too young to know what that’s like”. My response is, you have no idea what people are going through to make that assumption. Then I tell them all the things I’ve been through and their tune changes faster than the blink of an eye. I make sure I tell them when people make that statement its a negative statement even though it may not be meant that way.

Dave,

Nice name btw. I am turning 36 Monday so I know what your thinking. Welcome to the website. I just joined a few weeks ago myself. Dad’s can be so close minded unfortunately. Tell your dad to educate himself at the library. There are many men that have the disease but yes it does typically affect woman. You could always get tested for ADD as I’ve always wanted to do the same for myself. You definitely have support now. This is a very common disease and people who don’t have it, don’t understand. Do you have any questions maybe one of us can answer? I am also concerned about the years ahead if I’m already feeling this way. We have to try to focus on today only. When we look into the future ahead it (especially at night or when we are our most vulnerable) we tend to depress ourselves even more. It sounds like you need to get on a medication to at least help you out of some of the depression. I know how that sounds and I just want to try and help you out. I honestly read your reply and just felt extremely bad. I wish people didn’t have to deal with some of the stuff we deal with. I know people shutdown. I am a talker (as you can see from this paragraph) so I have never done this. I also became sick at the age of 14 with heart disease so I’ve grown up into all this. I know you don’t want to be judged and me personally I got so tired of being judged when I was younger that as I became older I laugh when I get judged. I let it roll off my back. It took practice to do that.

When nighttime comes along and the house is quiet, that is when our brain starts thinking of all the bad stuff. The depression pops up worse and while everyone is asleep dreaming good thoughts, your left alone with nobody to just understand and give you a hug. Maybe one night a week you can come on the chat on this website and we can talk. Just a suggestion. No pressure.

In any case, I am sorry your dealing with all this. It can’t be easy. Everything I just typed is really from the heart. Nothing I mentioned is typed with judgement or anything negative. I hope this finds you well Dave. Hope to talk soon.

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#5

Thank you for your reply @Davey02766 it’s really nice to know I’m not alone anymore.

My rheumatologist prescribed me Venlafaxine (Effexor) for depression. Now, I was never what I’d consider “depressed” but I was concerned and frustrated. It’s scary going through life, day by day, and not knowing why I’m in pain or what’s causing it. Fear of the unknown is extremely debilitating in itself. I told my doctor that is not like I’m sad for no reason. But, nevertheless, the prescription pad came out and ruined my life. I habe had terrible side effects from this med! I became depressed. I went from able to cope with life to 1000% depressed. I had mood swings, panic attacks, rage, anger, and uncontrollable sobbing. I had nausea, vomiting, loss of appetite, fever, shakes, muscle spasms, tremors, nightmares, insomnia, etc. If it was on the list of side effects, I had it. Today, I have 1 day left on this medication. I am being tapered off of it. The withdrawal has been horrible though. (Btw, Cymbalta was very much the same regarding side effects only not even as close to being this bad)

The last few weeks have been awful, and this last week has been especially brutal. Work hasn’t been going very well, my relationship is on the ropes, and the withdrawals have not been easy to handle. Plus, what a great time for a flare up! Seems like stress really does a number on me. I read that stress and sleep both play vital roles in preventing flare ups.

Anyway, yes, I do seem depressed. But I’m doing better today after knowing that there are people out there who want to help, and who will listen without judgment. It’s a good start for me. Thanks.

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#6

Hi @Dave702 ,

Wow hearing what your going through really hard to swallow and there are so many others like you dealing with medication issues. I use to be on Cymbalta which after I talked to my Primary Care Provider she told me she was taking all of her patients off of the drug because her patients were all having horrible side effects from it. My partner takes it for neuropathy in the feet and for depression and when I instructed him to get off that drug, his brain started to clear up and all that negative energy washed away. Still deals with the neuropathy in the feet but his doctor just makes me scream. Effexor was tried but he had symptoms too. Nausea big time and vomiting.

It’s very scary going through life with illness not knowing whats going to happen and how to deal with things. Life doesn’t come with a manual. I find we think about our issues too much which leads to anxiety, depression and everything else but if we aren’t on a good medication then we are going to keep thinking. Sleep an stress absolutely go hand in hand. When you have stress it revs up your body, you think about things more at night while trying to sleep, and it just becomes a vicious cycle everyday. Walking, Yoga, anything basically but sitting down works good for flare ups. I’m on pain medicine (which I don’t recommend trying to get because it just makes you less mobile) and I sit a lot. I know fibromyalgia is worse if your NOT moving but yet you can be too uncomfortable to move. Catch 22. Are you in contact with the doctor prescribing these meds ? Don’t ever be concerned with voicing to them what works and not works. Depression can make us not do the things to make us better but you should not feel this horrible.

It’s difficult having to deal with this all and being in a relationship where someone doesn’t understand. It takes someone with patience and empathy. Fibro can just really mess everything up. You have to be able to take care of you before you can fix the issues in the relationship but try to let them know your working on it. I know it’s not easy being a man and telling your girl all your thoughts but woman are great because they usually appreciate the honesty. When you don’t let them in, they get irritated. lol Just trust me on that lol.

I’m really glad I was able to lift your mood a little. In a way it helps me to help someone else. It makes me feel important and I appreciate that. Are you attempting to go on a new medication? What do you during your days? Just curious as to your activity. I hope this day finds you happy and well. Talk soon Dave!

#7

I know EXACTLY how you feel!!