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I feel like I'm totally alone and can't take it
5 Replies
kvc33 - April 1

I really hoped this would be a better year for me and I'm heartbroken that it has been even worse than last year. My exhaustion is severe and I'm still very mentally ill from the high dopamine caused by taking ropinerole. I have been in detox for almost 11 months now. Although the symptoms have lessened I still have a long way to go. I literally feel like I am dying of stress. My bf is the only one who helps me with my various needs. He is always saying that he'll do whatever he can for me but the reality is he spends so much time socializing with other people and doing his own thing that he doesn't have much energy left over to do things for me. He thinks he does a lot for me but it isn't much compared to what a normal person could do. He has fibro as well but my illness is far worse than his. I spend most of my time in bed where as he spends one or two days a month in bed. I get so frustrated with him when I see him neglect his house and chores. I end up doing a lot of them because he just lets it go. I have my own little place to look after as well. I can't do it all but since I spend so much time at his place I can't just turn a blind eye to the clutter and dirt because it bugs me. Most of the time these days I want to get in my car, drive away and never come back. Except I have no where to go and can't survive on my own financially either. I'm tired of feeling so trapped in my sickness.

 

navydad - April 1

First off, stop cleaning his house,, its not yours to begin with, and if wont do it then let it pile up, I know the pain of lonliness you talk of, my sons are moved out,, my wife is so sick of seeing me suffer with no end in sight, its like a nightmare you cant wake from, most days its all I can do to stand upright for more then 20 minutes,, we all have along way to go,, and I dont know if we will ever be well again,, I hope you can find some kind of peace,, it is a horible disease,,

 

January - April 1

Hi kvc. Sorry to read you are feeling so down and frustrated right now. There are no "words of wisdom" to cure this in a flash. I know you had a bad time with a neurotransmitter drug, and it really does take a while for your brain to readjust. And yes, I believe the body can heal itself, at least somewhat, if not completely. Give yourself a chance. I had a bad time with antidepressants; withdrawals were awful and lengthy. It's a long recovery process, but things improve with time. Please hang in there. Maybe you don't see it today, but I've see improvement in you, judging from your posts. You are not as irritable as you used to be, and you've posted about coping mechanisms you've discovered. You're always on here to offer some help and a kind word to others.

As for the BF, be grateful you have someone nearby who cares for and about you. (That's really more important than dirty dishes, or whatever it is! Don't drive him off over something dumb and be left with nobody!) People have different tolerance levels for clutter. Some people are internally focused, and don't even notice externals! Maybe clutter is not even on his radar screen. His chores aren't your responsibility, especially if you have your own place. Go there when it gets to you and calm yourself. Maybe your BF is doing all he can handle, and maybe he needs to spend his time socializing instead of cleaning in order to cope with his situation! It depends on your personality what renews you and what priorities you have. Don't clean his place, unless you want to - do what renews you!

Your brain's sensitivity might put your nerves on edge and sometimes make you irritable. Yes, you CAN turn a blind eye to the clutter and mess. Are you OK with vitamins levels, and do you have any supplements that help you to calm yourself? I can't remember if you take fish oil, but I think that helps to calm the brain a bit. I wonder if theroadback (dot) org would have any type of support for you or advice regarding the drug you took. Worth a check?

Take care of yourself. Do something you enjoy. Feel better.

 

kvc33 - April 1

Hi navydad, you sound worse than me (on my good days anyway). Thank you for responding and I'm so sorry for your situation. I too, describe this as a nightmare and I was going to write a book called, "Out of the Nightmare" when I got well. That hasn't happened so I'm tempted to write something else! I appreciate you guys, you are my support system because I'm too ill to go to meetings or counselor etc. I just read recently, January, that dopamine increases adrenaline so it's no wonder my anxiety and panic attacks are worse than they used to be. Yes, I know I'm overly sensitive to dirt and clutter. It's part of my OCD and I'm trying to turn off the constant alarm in my head. I've started listening to a new relaxation tape that increases the calm brain waves. Yes, I do take fish oil. I do appreciate my bf, I know that he owes me nothing. Part of the reason I clean his house is to 'pay him back' for what he does for me. I just can't do much right now and have to let it go.

 

Jocelyn - April 2

kvc33

Gosh...I don't know what to say except that my thoughts and well wishes are with you. Fibro/Chronic Fatigue is a very difficult disease and the drugs can totally pull you down, even if they are there to help you.

I suffer from being over sensitive to things too. My husband helps a lot around the house, and is working only part time during the winter, so he helps out, of course he doesn't do things the way I would like them to be done, but I have learned to except and lettle help I can get and let it go the best I can. I was put on Flaxseed OIL because I also have Sjogren's, and after a couple of months, I noticed I felt calmer. I googled it and found that people have found that it does have that effect. I have to take 1000mg 2x daily for the Sjogren's. I was on 1000mg fish oil before that and I didn't feel the calming sensation. Just by having another disease I found something that calms me. Of couse when the stress hits a high level, nothing helps..I just do my best.

I was wondering, since your Fibr and Chronic Fatigue is so server, is it possible for your doctor to get you some assistance for cleaning through medicare? I know a couple of people, who were able to get that service, but I don't know their circumstances, age, disabilit, etc. I just wanted to throw that out there in case you have a chance. You are having such a rough time of it, some outside help would be good.

Please keep in touch, you thoughts are in my prayers. As all of us try to hang in there and hope it is going to get better, I too am hoping for the same.

Stay well

 

bluesbrrd - April 11

This is a doublepost, but I answered the question on the wrong thread!

Please fogive my tired, confused little brain!
-----------
Cymbalta was an absolute nightmare for me. For some reason I let my doctor talk me into trying it a second time, but I hated it, and the withdrawals were the worst of anything, including Oxycontin!!! Both times I took it, it took away my emotions - I felt "dead" in the head. It also gave me back spasms both times, which I thought was a bizarre thing for a drug for fibro!! Lyrica made me way too hungry, and people gain as much as 30 lbs in a MONTH taking it. It made me REALLY depressed, so I stopped that, too.
I recently tried Wellbutrin, hoping it would help me sleep - BIG MISTAKE! After 2 weeks it was like having a fistful of caffeine pills. I got very agitated and my anxiety was off the charts. No more experiments for a while!

I first took Pamelor (nortriptiline) when I first tried to get better 25 years ago, and it worked for me then. I tried to take it again a few years ago, because I was desperate for better sleep. I could feel it relax my muscles, but it made me very sluggish, which was why I stopped taking it the first time (after 3 years). I was very sick all last year, with some kind of bowel/obstruction/constant severe abdominal cramps, which were terrible! I stopped taking the Pamelor about 3 months ago, and started getting better! I have no idea how it could do that to me, but it disrupted my normal bowel function. I will NEVER take it again. I am doing so much better, because that was just destroying me.

I've been going to a good massage therapist for about 6 months now, and she helped work out the abdominal thing. I'm sure I have adhesions and scar tissue from 4 abdominal surgeries for endometriosis. What's terrible is you can go through all of these severe complications, and no doctor can tell you anything. Six months ago I started with the massage, and with a chronic pain therapist, which was discounted through Medicare to about $40 a visit. My chronic pain nurse therapist in VA cost me $135 a visit!!!

Those things helped me more than any meds. I can't afford Oxycontin, and had a bad situation where I moved in with another person who started STEALING it from me! She even PICKED THE LOCK on my lockbox, and could open it AND LOCK IT BACK AGAIN!! I thought I was going crazy there for a while - why were my meds disappearing!?

So my doctor put me on methodone, which has a lot less "street" value! I like it, because it doesn't mess my thinking up but relaxes me a bit and takes the edge off the pain. I have found I can go without it in the daytime now. I have always had problems with pain meds worsening my depression, messing up my bowel function, and clouding my thinking, so I put up with more pain. It's a trade-off. I am hypersensitive to almost every medication I take. I've never even been able to drink coffee!!

I also hate the stigman of being on pain meds, but with fibro you have no choice. I have alcoholism in my family, but I have never had problems with addiction. I have never, ever increased my meds or taken more than I should. It doesn't make much difference, anyway. The average chronic pain patient only gets about a 30% reduction in their pain, regardless of what they take. The only time I'm pain-free is when I'm asleep! This is something most people don't get, because they associate taking pain meds with feeling no pain.

I hate the stigma, and I hate that it made me a target for theft! I live alone now, not going to go through that again. Most people with chronic pain don't become addicted, so doctors should not worry about it so much when severe pain is a problem. There are a certain percentage of people with addiction problems, it's a brain disorder they are born with, and those people will abuse their drug of choice. They give the rest of us a bad name. I have a very good rheumatologist, thankfully, who's not willing to let his patients suffer!

As far as HOUSEKEEPING goes, I had to stop worrrying about that a LONG time ago! Do what makes you happy, and what makes you feel good. My boyfriend left me because the house got so messy, but to a certain degree, that was his fault. He made the mistake one day of giving me an ultimatum, which was a crappy thing for him to do. He wanted me to let him THROW AWAY ANYTHING HE DECIDED TO, without my having a say in it!! Can you imagine? I thought he was being mean, and he was! He could have worked with me, but he left. It wasn't the only issue, but I really loved him and still don't understand how he could do that. But I'm over it now - that was six years ago!

It's hard enough getting to your own chores when you have fibro, I sure wouldn't volunteer to do anyone else's!!! I live with a certain amount of squalor many wouldn't tolerate, but if I don't do it, no one else is going to! If anyone judges me for it, that's their problem!! I'm not going to make myself miserable over something so superficial.

There is really some good help and ideas on this board, I'm finding out!

 

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