People don't believe me

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KarenH

Active member
Joined
Mar 26, 2016
Messages
30
Reason
DX FIBRO
Diagnosis
01/2000
Country
US
State
TX
I'm so sick of people not believing me when I say how bad I feel and just can't get up and go somewhere. I'm a recovering alcoholic/addict:cry: and going to meetings are very important but there's days I just can't get off the couch especially after I've worked all day. I'm getting lip from my sponsor and friends at meetings. I'm hearing it from ppl at church too. Well, actually I DON'T hear from my friends from church bc they don't understand how bad I feel and that's why I haven't been in so long. I thought my friends were going to be there in the bad times too!

I'm so tired of trying to find real friends. I have no one I can depend on. If I ever need to go to the hospital I'd have to call 911. I'd have to call a taxi to drive me home. This is such a lonely way to live.

How do ya'll deal with ppl that don't believe your symptoms!?
 

LornE1982

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Joined
Mar 25, 2016
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13
Reason
DX FIBRO
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00/0000
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US
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ID
Hi,

I'm sorry to hear you are going through such a rough time. I can't imagine dealing with two totally separate types of recovery and then feeling like you can't count on people.

I am blessed with church friends that do care and who have suggested many ideas to try and find answers. Is there another congregation nearby that you could visit that might be more supportive?

Sorry for what you're going through.
 

KarenH

Active member
Joined
Mar 26, 2016
Messages
30
Reason
DX FIBRO
Diagnosis
01/2000
Country
US
State
TX
Hi,

I'm sorry to hear you are going through such a rough time. I can't imagine dealing with two totally separate types of recovery and then feeling like you can't count on people.

I am blessed with church friends that do care and who have suggested many ideas to try and find answers. Is there another congregation nearby that you could visit that might be more supportive?

Sorry for what you're going through.



Hi!

Thanks for responding! I have considered trying a new church but it takes so much effort to go and meet new people and time to make friends and quite honestly I'm tired of trying and then being let down.

I've been trying to find a fibromyalgia specialist in my area that takes my insurance but I'm finding out they all (the ones I've called) do not accept insurance. The one I asked about fees said the initial appointment was nearly $1000 then follow up appointments are $250. Who can afford that?? I surely can't! I really need some hope that I can start to feel better. I never want to get off my couch. Not to even shower! This is not living. I'm just existing.
 

LornE1982

Member
Joined
Mar 25, 2016
Messages
13
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
State
ID
Wow, that is expensive! I just joined this group and it seems like people are very supportive. I know it's not the same as real life but thank you for reaching out to others in the same situation. I will keep you in my thoughts and prayers to hopefully find just one person nearby that accepts and encourages you.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
I'm so sick of people not believing me when I say how bad I feel and just can't get up and go somewhere. I'm a recovering alcoholic/addict:cry: and going to meetings are very important but there's days I just can't get off the couch especially after I've worked all day. I'm getting lip from my sponsor and friends at meetings. I'm hearing it from ppl at church too. Well, actually I DON'T hear from my friends from church bc they don't understand how bad I feel and that's why I haven't been in so long. I thought my friends were going to be there in the bad times too!

I'm so tired of trying to find real friends. I have no one I can depend on. If I ever need to go to the hospital I'd have to call 911. I'd have to call a taxi to drive me home. This is such a lonely way to live.

How do ya'll deal with ppl that don't believe your symptoms!?

Hi Karen! You are not lone, I am in a similar situation as well. Sadly most people nowadays have no idea what a true friendship is, for us is specially difficult because well... the elephant in the room: fibro. I was just thinking the other day I should really stop complaining or mention I don't feel so well sometimes... they will never understand it, might make me feel worse and telling them won't solve it.

Try what I do, keep a diary. Write in it as much as you want, don't censor yourself and be completely honest. I am doing that and you'd be amazed to see how good I feel, and how much I've discovered about myself and my problems. It's like free therapy if done right, like talking to a really good friend.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Hi Karen

I'm so sorry you are feeling so isolated when friendship and being believed and validated is so important to us.

I have had a lot of people disbelieving the severity of my health and make some unbelievably hurtful comments.

I have definitely been guilty of over sharing my pain and complaining some times. It has had a negative impact on my relationships for sure and i have now stopped almost altogether.

MY best friend always says i am here for you ring whenever you want but then mostly she doesn't answer and says she was in the bath or popped to shop or whatever. I know its not always true as she may have been engaged minutes earlier or i know she just wants to get on with her busy day.

She rings when she has the time which i understand as despite being 20 years older than me is very fit and active.

I always show a big interest in her life too as talking about this problem or that is just words to other people.

My friends tend to talk about there bad knee etc that goes off with a mild painkiller and resolves in a week or two as if its the same as what i have!!!

It has also caused problems with my partner who made it clear about two years ago with the silent treatment and then upsetting words that he was fed up with my illness and got cross at me because i couldnt go across europe on holiday like we used too.

Peoples tolerance for illness is limited however good and kind person they are. It's a rare few that stick by you through thick and thin.

I guess it impacts upon them and at the end of the day everyone just wants a happy simple life. We are stuck with this illness and never get a day off and its sooooo hard.

I truly hope you can find some support and you will definitley get it here.
Take CARE x
 
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Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
FL
Ahh, Karen, I think we have almost all been on the sofa or in the bed not wanting to move. I went threw almost 3 months of it. Heating pad, a box of tissues, the remote control and bottles of water. It does get better. My husband turned the water pressure down so when I finally would get in the shower it felt good, but getting me motivated enough was a like a snail with fibromyalgia carting an elephant!!!
Friendships always evolve and change, fibromyalgia just seems to rush that process. Someone once told me if you have one true great friend in life you are doing good, if you have two you are truely blessed. One of my favorite country songs is you find out who your friends are. This is so true and ultimately a good thing th know.
If your not taking Epsom salt baths, please try this, it will ease your muscles and help detox them. Fibromyalgia tends to be triggered and made worse by stress (I'm sure you know that already) so don't let other people's opinions of you or your ilness bother you right now. You must let go and let God. He will deal with them, you must work on getting better. Like everything else getting started is slow and hard, like lead weights in each foot as you try to put one in front of the other. But they do slowly melt away enough to sling them around as you will become stronger.
I know it's dark right now, but there is light and if you struggle to find it just come here, There is always a kind soul that is in their season to help and guid.
If you would like to share what your are taking for meds., supplements and relief there are some very common things that help most of us. I.e. I hope you have a heating pad!
Sending you a prayer and gentle hug
 

KarenH

Active member
Joined
Mar 26, 2016
Messages
30
Reason
DX FIBRO
Diagnosis
01/2000
Country
US
State
TX
Ahh, Karen, I think we have almost all been on the sofa or in the bed not wanting to move. I went threw almost 3 months of it. Heating pad, a box of tissues, the remote control and bottles of water. It does get better. My husband turned the water pressure down so when I finally would get in the shower it felt good, but getting me motivated enough was a like a snail with fibromyalgia carting an elephant!!!
Friendships always evolve and change, fibromyalgia just seems to rush that process. Someone once told me if you have one true great friend in life you are doing good, if you have two you are truely blessed. One of my favorite country songs is you find out who your friends are. This is so true and ultimately a good thing th know.
If your not taking Epsom salt baths, please try this, it will ease your muscles and help detox them. Fibromyalgia tends to be triggered and made worse by stress (I'm sure you know that already) so don't let other people's opinions of you or your ilness bother you right now. You must let go and let God. He will deal with them, you must work on getting better. Like everything else getting started is slow and hard, like lead weights in each foot as you try to put one in front of the other. But they do slowly melt away enough to sling them around as you will become stronger.
I know it's dark right now, but there is light and if you struggle to find it just come here, There is always a kind soul that is in their season to help and guid.
If you would like to share what your are taking for meds., supplements and relief there are some very common things that help most of us. I.e. I hope you have a heating pad!
Sending you a prayer and gentle hug



Thank you for your sweet reply! I noticed that you live in Rockwall. Do you realize how close we are to each other!? Only about an hour drive! Craziness! And the reply above you lives in Houston. Someone else replied to another one of my posts who lives in Bedford. I'm beginning to think fibromyalgia hit hard in Texas!! Haha

I'm on a bunch of prescription meds but don't want to share right now. I do take vit D3, magnesium, Lysine, B12 and multi vitamins. I haven't tried the ebsom salts bath so I'll certainly try it. My problem is getting off the couch and trying it.

I'm so sad thinking this is going to be the rest of my life. No one is ever going to want to ever date me or marry me. I can't take care of myself financially. What the heck do I do??? It's sad but I truly hope one of my kids does real well professionally and can help me out but that's a horrible way to think. I shouldn't be a burden to them. I'm at a complete loss.
 
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KarenH

Active member
Joined
Mar 26, 2016
Messages
30
Reason
DX FIBRO
Diagnosis
01/2000
Country
US
State
TX
Hi Karen! You are not lone, I am in a similar situation as well. Sadly most people nowadays have no idea what a true friendship is, for us is specially difficult because well... the elephant in the room: fibro. I was just thinking the other day I should really stop complaining or mention I don't feel so well sometimes... they will never understand it, might make me feel worse and telling them won't solve it.

Try what I do, keep a diary. Write in it as much as you want, don't censor yourself and be completely honest. I am doing that and you'd be amazed to see how good I feel, and how much I've discovered about myself and my problems. It's like free therapy if done right, like talking to a really good friend.


Thank you for replying!! I'll definitely start journaling. I had another friend tell me to do that too. I just never did. The only reason I tell anyone I'm not feeling well is bc they're on me for not attending my AA meetings or showing up at church like I did when I was off of work. Now that I'm back part time they all think "you're only working part time...you should be able to make a few mettings a week and church on Saturday." I also hear "you drank and drugged when you didn't feel good, you can go to meetings when you don't feel good!" I want to strangle them!! I ended up addicted BECAUSE I didn't feel good!!!! They just don't understand. Getting and staying off addictive medicines has been tough but dealing with fibromyalgia is so much harder!!
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
FL
Lol, I've always told my son he needed to go to college to become a financial geniius so he could get me a mansion with a maid!!! No, I took care of him that's what family does. I know getting of the sofa is just so hard, but you have to go to the bathroom sometime, one of these times just grab a towel and step in. It WONT be like this the rest if your life. It won't. I have started some new stuff in the last two weeks that appear to be a game changer for me. I'm not posting yet because it could just be my fibro is in its first good remission and I don't want to get ahead of anything. (I did share in some post b4 I knew if it was going to help and this morning I shared in a post to moe1959 "lupus" if you want to ouch in it. I could be into something as mold is apparently huge in Texas and I have verification of exsposure that corrusponnds with my fibro. But I also do not believe everyone's fibro is caused by the same thing hence why not everyone responds to the same treatment.
God really does have a reason for everything, including the hard times. I thought I was a kind person but I never truely understood the affects of chronic pain, I tried to never judge anyone but I know I won't now!!! i never cared how someone else kept there home but mine had to be perfect, my hair and clothes kept nice and now...I've gone to the groceries tire looking homeless and had laundry piled up to the ceiling! When I'm better I will not look homeless but I will be at peace if I go to bed and there's laundry still in the dryer. Peace I've missed out in for 50 years. I consider this a HUGE blessing.
I'm glad we are so close, there is some comfort in this. I believe the founder of a fibro forum started with a "pillow" club where they would meet for coffee with pillows in hand! Lol
If I'm ever in well enough I will find a way to come out to you and throw you cloths and all into an Epsom bath!!! We will get you better one way or another. ; )
I think it was forgetmenot that said she didn't have a tub so she bought a kiddie pool and boiled water! Cracked me up! (Forgive me if it wasn't forgetmenot)
Ok. I'm going to post on what my ruemy told me yesterday. Later, I'm out if time, please read it when I do. She said she's had plenty recover.
So my babble today is...yes one of your kids should get rich (hahaha) and smile, your going to get better.
 
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LornE1982

Member
Joined
Mar 25, 2016
Messages
13
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
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ID
I was just thinking about you. I noticed I hadn't seen your name on here in awhile and I'm hoping you're doing better!
 

KarenH

Active member
Joined
Mar 26, 2016
Messages
30
Reason
DX FIBRO
Diagnosis
01/2000
Country
US
State
TX
I was just thinking about you. I noticed I hadn't seen your name on here in awhile and I'm hoping you're doing better!


Thanks for checking on me!! I've been pretty depressed. I went to a new internist about my face turning beet red and burning when I feel at my worst. She says it could be rosacea but not convinced. She says she thinks there could be some auto immune disorder involved. Just what I need!

Then I decided to look at my 401k and that was a bad idea. I was so stupid and withdrew most of it to live off of when I quit working but thought I'd go back to work to rebuild it. I feel like my illness has completely ruined me. I have nothing to my name. I'm thinking about taking out what I have left in my 401k and building a tiny house but it wouldn't be much bc id lose a bunch of it cashing it out.

It's terrible to think the only way out of this nightmare is to kill myself. Don't worry, I'd never do that but my mind does go there bc I have no solution.
 

LornE1982

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Joined
Mar 25, 2016
Messages
13
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DX FIBRO
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ID
Oh, I'm so sorry. I'm glad to hear that you aren't going to do anything desperate but I'm sorry that you feel that way. So there was nothing positive from the meeting with the new doctor? Maybe at least you have found a medical professional who will listen. Did you tell her how you are feeling emotionally?
 

KarenH

Active member
Joined
Mar 26, 2016
Messages
30
Reason
DX FIBRO
Diagnosis
01/2000
Country
US
State
TX
Oh, I'm so sorry. I'm glad to hear that you aren't going to do anything desperate but I'm sorry that you feel that way. So there was nothing positive from the meeting with the new doctor? Maybe at least you have found a medical professional who will listen. Did you tell her how you are feeling emotionally?


Hi!

First, I want to say thanks so much for your support!! I really don't get this much support from ppl I know OR my family!! It really means a lot! Second, yes, it's great to have a dr that will listen and she does seem concerned. I didn't tell her outright how I'm feeling emotionally but the nurses did a screening that asked me a bunch of questions about being depressed and I answered honestly. I go see my psychiatrist tomorrow. I'm going to speak to him about it. I've been waiting almost two months from my disability hearing date (Feb 22) for a decision. I will feel so much better if I'm approved. I read last night that the longer it takes to get an answer the more likely it is to be approved bc if you're denied, you hear quickly bc the deadline to appeal is 65 days from the hearing date. April 27 will be 65 days. I might be reading into it but it's something to hang onto.

I tried working at a daycare but it only lasted two weeks. My parents are paying ALL of my bills and if they find out I quit they will flip their lid. But I try to tell them how bad I feel. I've sent pictures of what my face looks like. My dads sister has fibromyalgia and they've seen her suffer and talk about it all the time but just don't acknowledge my pain. It doesn't make sense although they've never been there emotionally for me AT ALL. it's a huge reason why I started abusing pain meds. The other part is bc I married a person just like my dad... Another emotionally absent person. So since I had no emotional support or outlet I medicated my feelings. No, not an excuse, I should have left him or found a better coping skill but I didn't. My fibromyalgia plus my addiction has ruined my career as an RN. I still have my license but it's probated and no one wants to hire me now.

I don't know. I just feel like there's nothing left for me. Nothing to look forward to. No hope. I sit and cry every day. :cry::cry::cry:
 

harpert

Active member
Joined
Feb 26, 2016
Messages
56
Reason
DX FIBRO
Diagnosis
07/2014
Country
US
State
IN
Hi Karen, I just recently went back to church. I too have trouble getting up and ready, but I have found a church that is very laid back and not formal. It is a church of God, non denominational. I go for myself. Don't go for your friends. I feel good when I leave and if I go home and sleep the rest of the day away so be it. I feel like I need a connection to God and it is worth the trouble for me. Don't let others dictate when or how you worship. Gentle hugs.
 
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