Old 07-04-2017, 12:48 AM #1 (permalink)
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Hello all!
First I want to say I'm sorry for turning what should be a short intro into a long one. Also, if you have trouble understanding I've had to start typing how things sound in my head and stop proofing my messages because it takes hours when I do and sometimes things turn out worse than when I started.

There is so much to my story, but here's the basics: my name is Amy, I'm 46, with a 13 year old daughter, and have been married for 19 years. I've had one medical problem or another since I was around 23 and had many, many surgeries. To me, Fibromyalgia was just another painful problem added on to a long list of problems. I forgot the exact date of my diagnosis but know I was going to a pain specialist, she didn't know a lot about FMS yet, it was just starting to be discussed in the medical community and many doctors wouldn't acknowledge it as a disease. I also have Chronic Fatigue and today the neurologist said he suspects MS and that these episodes I've had are a type of seizure, and ordered an MRI(there's a reason for not having one before now) and an EEG with sleep deprivation.
I have also have no support system. We go to church, but our congregation is old and when I'm not at church, I'm out of mind and I can't expect people who have their own medical issues to worry about mine.
At home, my husband believes like I did FMS is pain. He has some serious back issues and has had a ruptured quadriceps and a year later a tibia fracture to the same leg, rotator cuff surgery, and can't forget tennis elbow (!) . He always has to top my bad day with his worse pain. I get so upset, there's things he refuses to do around the house, that falls to me by default. Like climbing a ladder to the attic and crawling through it half-way across the house to uncover the whole house fan, otherwise it wouldn't have been done, even worse bend over to pick stuff he's dropped on the floor. I should add; when I was diagnosed, I was being treated for chronic pain and arthritis from failed back syndrome and a healed left hip fracture they fixed with a metal plate and rod. When I have a bad day, it's very bad. But forget getting support from him.
My daughter is 13, she sympathizes but what can she do?
Mom (it's in law but she's the only mom I have now (another story)), says I overreact and "read too much" and has implied I'm a hypochondriac. But she also has her own issues with pain. Talking to her about the neurologist today I couldn't get a read her though.
I mentioned FMS as another painful problem, that's because I thought it was, I also have IBS and knew about that relationship, and it's embarrassing to admit this but I just found out all the neurological, cognitive, and sensory issues are symptoms related to FMS. So I'm looking for support but also just to be able to chat with and sympathize with people who know and understand what we go through daily.
One last confession, lately even checking email has been a challenge for me, so I might take a while, but will check in when I can and look forward sharing my story and hearing yours.
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Old 07-05-2017, 08:10 PM #2 (permalink)
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Default Re: New to Forum Long Diagnosed

Hello and welcome to the forum. We all understand how lonely it can be without a support system or at least someone who understands what your going through and can be there for you when the bottom falls out and pain sets in. Most of us here have friends and family that don't realize how much harder it is for us to get simple tasks done let alone the hardest ones. But here we do care for everyone who stops by for coping skills or maybe a hug.

Please join in on posting your own thoughts and sharing some words of wisdom with other members. We were slow in answering you with the holidays but I am sure other members will be sharing with you soon.

Have a wonderful day and I look forward to talking with you throughout the forum.
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Old 07-07-2017, 06:56 AM #3 (permalink)
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Default Re: New to Forum Long Diagnosed

Welcome Amy....its true our pain gets passed off as wingeing by even the people who are meant to care about us the most. Fibro can be very lonely isolating illness especially when its at its worst and we need extra support and understanding.

Im so sorry your hubby is not very supportive...it sounds like its a competition to him as to who hurts the most. Has he recovered from his injuries etc now?

My advice if any is please put yourself first. Dont be pressured into doing what you cant or what will make you hurt to much. If possible pay people to do things you cant. Its time to look after yourself as best you can while i understand you still want to be a good Mum.

Find ways to cut down on chores...non iron clothing..light weight sweeper instead of a hoover or get a cleaner to do a thorough monthly or more frequent clean of the house.

Use fresh but ready prepared ingredients for cooking and get hubby and daughter to help. Change the way you think....its not ALL your responsibility and pacing and resting is crucial to fibro management. You cant be superwoman anymore which is so hard when we are used to doing so much and further more we want to do it!

Stay here and share ask questions or vent when things get on top of you...we all feel like that.

I wish you good luck with the MRI ..let us know what the results are. ....in the meantime take care.
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Old 07-13-2017, 04:11 PM #4 (permalink)
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Hi Amy , Welcome to the group !! .
I'm So sorry for all those years of pain. You really have kept it together.
I really think that although your Daughters only 13, You still need to ask her for some help. At least have her do a bulk of house chores.
When my Daughter was 13 I was clear she had chores to do . I set up a rewards system for her extra allowance if she did more around the house when I wasn't feeling well . She actually enjoyed cooking small meals, etc. Her Father and I split up when she was 10 and it was beyond tough being a Single Parent at that time. I was determined to go back to College, get my degree and find a job I loved, not tolerated. I did all that and through it my Fibromyalgia was getting worse. (In other words, over did it ).
You are Overdoing it at home. It's time to hand over the jobs . I'm So So sorry your Husband isn't supportive. You deserve to be with a Supportive Husband!! Also Your Mother in law sounds Toxic to you ! I would limit time talking to her !
You need to make time for "You". You are Young and 46 is the new 36. I'm 54 now , but really 44. Try to take care of You .
Im thinking of You during your imaging appointment, sending you prayers.
My Partner although is supportive , does also have his days . He struggles from being a gunner in Afghanistan in 2010. PTSD, brain injury, and back problems too. We have our fight days believe me. I try to remove myself and give him space.
Just don't give up on Yourself. Xoxoxo
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Old 07-17-2017, 06:55 PM #5 (permalink)
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Default Re: New to Forum Long Diagnosed

Hi Amy! Nice to meet you. I am new here, too. I've been dealing with fibro since 2002. Back then I was being treated for this and that, what ever the doctors could pull out of their hats. It took years before I finally figured this out with my family DR. So glad I have a good doctor who gets it and has compassion. He listens to me every three months and adjusts my meds. My husband and friends and sister and others, keeps me going. And, there's my two little four legged critters, Jeremiah and Jericho, who are great comforters and look out for me.

I totally understand the email issue. It overwhelms me too. If there is a room that is a catch all, I can't stand to even open the door. Fibro is wicked. It's been a year now since I have worked and now have an attorney working on SS Disability for me. I paid my share in, believe me.

Any who, you have people here who understand. That always helps when I can communicate with others who are going through the same thing.
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