Posted by Lead_Cenobite on March 16, 2016 at 2:36pm
ok ok i know the title sounds desperate, but I kinda am.
first of all, thanks for letting me be a member.
ok where to start.
I’m from The Netherlands and eventhough I’ve been searching i found no online Dutch support groups.
My girlfriend has been diagnosed with FM about a year ago, and ever since the stress and depressions she has have been killing our relationship.
I’ve tried and tried and actually still am trying to be there for her.
I’ve read almost everything I found online about FM, but i feel hopeless. I just don’t understand it. and technically because there is so little known about it neither does she (I think).
it frustrates her that i don’t understand. And it frustrates me just as much.
I’m afraid that tomorrow will be the end of our relationship. all because of me not understanding, so what should / can i do for her???
I don’t want to lose her.
Thanks for reading this i just needed to get it of my chest. and any help would be deeply appreciated.
It’s clear to me you love her and want your relationship to work as you’ve joined a community to learn about how to support her through this illlness. To me, that suggests a solid foundation to start. Often it’s not so much understanding the disease itself, but understanding how to just be there for your loved one when they need support. Try browsing the Information for Loved Ones category here for articles-
This community is for all parts of the world. I am from UK and have found it so supportive. Firstly it is a great place to just get anything off your chest, saves your loved one! BaltimoreBaby has given great advice with her information to share. You may not understand completely (no-one does), but listen to your girlfriend, trust her and accept what is here right now for her, without questions and trying to solve it. This condition can't be solved. Hope this helps, and please come back to us when you feel the need to let off steam.
I totally agree with what Baltimore Baby said about the foundation of your relationship. Just be there for her. I was diagnosed in 2008 and I have spent so much time trying to make sense of this crazy disease. Analysing the weather, diet, what did I do one day that I didn't do another day. I was making my self crazy! Recently, I decided it is what it is. Some ideas work for some and not for other. There isn't any sense to this disease. So just continue to love her, and when she is going thru a bad time, bad day whatever it is, just ask, what can I do to help you?
I will keep both of you in my prayers. Please keep us updated.
Hi I just want to say hello at the moment and welcome you here. I have been staying with my husband at the rehab hospital each day and I am quite exhsusted and grateful for angels holding me up . He had knee replacement surgery .
As a person going through FMS, when a flare up occurs, they can be extremely unbearable. What’s helped me is to let the things/ppl that caused stress in my life go. Certain stress in life you just can’t get rid of, but in essence I “don’t sweat the small stuff”. I’ve had to change my diet to a healthy lifestyle and lots of supplements and vitamins. I don’t take prescription meds for FMS except pain meds and anxiety meds.
Hi
I’m from UK with a family from 15 boy 11boy and a 4yr old girl my husband works very hard to bring money in we have no family to support us im the driver of the family … It’s hard so many days I feel the need to give up I can’t move my body telling to rest but I can’t due to commitments please just respect your partner cause it’s a hidden illness someday people will understand x
You sound like a Huge Support to her already just by finding this group and reaching out to everyone. Being a man in my sixties with FM this has a stigma that it’s only a female thing, plus many say it is all in our heads. Well I know first hand it is not in my head and I think you understand that it is not in her head. Yes depression can be one part of FM to deal with and I would encourage you both if possible to seek out some counseling. I know that helped me personally and it may be a starting point for you both.
I hope she has a good doctor who is prescribing the right dosages and medications. This can take a while for ones body to figure out what’s going on so be patient.
I was told that FM is a three prong condition. With #1. Being the medication for depression. #2. Then medications for pain. #3. Then was medications for getting the nerve ending to calm down at night mixed with some sort of sleep aid which can be another antidepressant.
Please don’ t give up, you sound like a wonderful person, the last thing she needs is to lose you on top of all of this going on.
Wishing you luck!
Ron
Have you ever injured a joint, such as your thumb, wrist, ankle or knee? Now imagine that pain doubled or sometimes tripled & add to that you’ve done absolutely nothing to receive such pain. That is what I deal with on a day to day life. My family thankfully understands. It is tough to see a loved one in pain & there is nothing you can do to make them feel better. For my sanity I would hold his hand & massage it lightly with lotion. Remember the little things that make her happy, surprise her, ask her what you can do to help her. The best mantra I silently tell myself is "Happy, Cheerful, Chirpy " it has helped me tremendously in the past few weeks. M
The biggest thing that I have had trouble getting my husband to understand is that sometimes I just need him to listen and tell me he loves me no matter what, and not to try to fix it or tell me what other people do with FM. Be supportive and encourage her to do her best whatever that may be.
Hello - communication is so key. If there are specific things you're having trouble understanding, ask her (preferably at a time with the pain or brain fog aren't making it too difficult for her to think and talk) explain as best she can, and then ask follow up questions to make sure you understand. Can be as simple as you asking "why is it that the fatigue can set in really badly even after you've been feeling just fine earlier?" and her saying "I don't know - it just does that!" and then you offering to help her look for signals that you might notice that she doesn't in the future so you can support her through it with a better understanding.
Also, remember that everyone has different helping styles, and that we all find some styles work better than others. So if she's getting cranky because of the pain or frustrated by the doctors not being able to help, or just whatever - she might need you to just sit and listen. It's not always about understanding what she is going through so much as it is about accepting that it is what it is. So she's exhausted and overwhelmed and angry - maybe the best thing to do is just agree "yea, honey, that really sucks. is there anything i can do to make it better for a moment or two?" and then let her tell you what she might need - someone to vent to, ice cream, a hug, a distraction by way of watching a movie together, etc.
I've known a lot of people whose helping styles were to try and help solve the problem and/or go all optimist on me about how it will get better. Well, a lot of this will not ever get better and just doesn't have good solutions. So I find that kind of helpfulness not at all helpful and would rather have someone just listen to me vent and wallow and agree with me that it sucks for a few minutes until it's out of my system, yk??
So anyway, yea, this is my very long convoluted (why do I try to write messages online after I've taken my sleep meds?) way of saying - ask her what she needs from you and do your best to provide those things. Ask her specific questions about things you are trying to understand (when she's in a coherent frame of mind) so you both get on the same page about those things.
And if you haven't yet, check out this little story The Spoon Theory ( http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ ) because it does a good job of explaining some stuff about chronic illness that can be hard for loved ones to understand. Of course, you can always search around here and other web sites about fibro for more info too.
My Husband and I have been together going on 10 years now. When we met I was an extremely active single mother of three teenage boys, constantly on the road between my career and running my boys to their various sporting activities. I always dealt with aches/pains/headaches but nothing debilitating until about 5 years ago when I began having severe fibro flares. I spent a couple years not being able to work and barely being able to be active and definitely not understanding myself what fibro was. Last year I managed to get myself feeling well enough to return to working, It was taxing on me, an hours drive to work, 8-9 hrs on the job, another hour drive home. I would sleep on my lunch breaks and often stopped halfway home just to rest. Do nothing at home at the end of the day except relax on my heating pad or in the pool and nothing on weekends. Late January it caught up with me again and took me down - I havent been able to work and barely capable of basic tasks around the house. A few days ago my husband who works 2nd shift came to me and said - Honey, I love you and I will always be here for you no matter how bad it gets for you. I don't know exactly how you feel, but I know you push yourself too hard and you have to just stop and take it easy, rest, and when you are having a good day or a good hour not to over do it and make yourself worse again and I am going to stay on you to Not overdo things and we will find ways to help you be able to do things you like to do without making yourself worse in doing it. - Hearing that from him made a difference for me. It didn't help my pain, or frustration that no one close to me really understands how I feel, but just knowing he is willing to accept it and even help me find ways to do some things and support me through it goes a long way.
I became engaged a year after my car accident (1989) I got whiplash and herniated discs. The development of the symptoms came on like a hurricane. It was very stressful for my fiancée. He was as frustrated as me because no one could diagnose what I had. I live in Massachusetts and we have some very good hospitals and I went to 3 of the best and 1991 they did not know. It was like we were flying a plane with out a known destination in rainy storm. We had no clue. doctors had no clue. Everything was by trial and error. He was amazing and the one thing that stood out the most when I look back on those days was his humor. He could always make me laugh no matter how much pain I was in and he held my hands when I went to the doctors and the hospitals. We would both sit eager to hear some diagnosis, some type of treatment. He just held my hand and hugged me whenever I burst into tears. I wasn't diagnosed until 6 years later. When I was diagnosed I sent away for a fibromyalgia newsletter and read every article. It was difficult to understand some of them -it was the science -the anatomy of the brain. I was determined to learn all I could. Month by month and then year by year and finally I got my life back (5 years anyways). Lost it again but I have knowledge and that is what I fight with. Knowledge is my choice of weapon. I am constantly looking over my back for that devil (fibro). Humor and hold her hands
My husband feels helpless too. He is really trying so hard. Today he went to the book store and purchased a book on fibro, and told me he is going to do everything in his power to make me better, but more important to me personally is he is there for me when I am happy, crying,mad,sad,depressed,in pain,confused,need to vent,need to have fun,need a friend. He is in it for the the long hall, and that is all I need to know, that he is there for me, on my side always, even when I think I can't do it anymore. he is my person. I think we all need a person to try and survive this nightmare. I hope you can be her person too. Hope it all works out for you both