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Lowest day of my life
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An_254702 posted:
I have been suffering with symptoms for @ 2 yrs now. Only recently diagnosed 3 weeks ago. In those 2 yrs I have missed ALOT of work for many reasons... Headaches, muscle pain, stomach, joint/back pain & the worse fatigue. It has been a financial burden on my husband and myself. I do work as much as I possibly can. I can tell that for some time now my husband has been faking his "support and sympathies." For him it's all about the money. I understand that, I do but, when you can barely get out of bed in the morning it's hard. My husband got all pissed off at me told me I need to find a new MD for my head or a new MD for my body. But, he hopes it's my body. I was surprised he said it but, not shocked. I don't know how to feel about what happened. Need some help!
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dollbug responded:
Hello and welcome....living with the wrath of the dragon, aka FM, is a challenge for probably the majority of the people. It is bad also when our family and friends, (especially our spouse) does NOT understand nor does not want to hear about how we feel. I have to wonder do these people think we *like* being hit with FM? Do they think we enjoy not being able to do the things we use to do? It is so very sad as most of them do not even have a clue. Just because we *do NOT look sick*.....then we are probably just faking the illness.

I use to do everything....from outside work to working 2 jobs....a fulltime job and a part time job. I think most of us FMers have the A personality and we were able to push ourselves to the limit and just keep going and going and going.....and then one day, perhaps all of a sudden or gradually, the wrath of the dragon, aka FM, grabbed our body and wrapped its tail as tight as it could around us. From that day forward, our lives changed and for the most part, there was absolutely nothing we could do about it. Some of us just thought that we were getting the flu and that we would soon get better....that did NOT happen either. After weeks and then months and some of us even years, we finally knew that something was REALLY VERY SRONG with what was going on with our bodies.

I think most of us FMers also have tried many things thinking that we will indeed overcome what is going on with us. We have to all accept the changes and do a trial and error process to try to find something (ANYTHING) that will help us feel better. Sure we hope that one day we will be the *same person we have known before we got sick*....but I think we eventually come to the conclusion that that is NOT going to happen either. So we continue to try to find the right tools that will at least allow us to move on and feel better when we can.

All of these things take time and effort. Everything is a process and it requires a lot of patience on our part to figure it out. Will we ever be like we were? Probably not. Soon we begin to realize this and we can then just move on to what it will be.

I hope that you will at least share this site with your DH (dear husband) so he will know that you are NOT making any of this up. Most of us could NOT, would not even think of making up how we feel the majority of the time.

There is hope though....so learn all you can about FM and how to *dance with the dragon, instead of draggin the dragon, as Nana B (one of our FMers here) states....things will indeed get better.

Check out the info under *tips* and *resources* and be sure and read the *member toolbox* as well.

Vitamin D....speak to your doctor about getting your Vitamin D level checked. Low Vitamin D can cause additional pain for some people, actually a lot of people...and it can also affect other illnesses as well.

Take care.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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mnjeepguy responded:
One thing I have learned is to be realistic about what you can now do. Cut living costs. I mean cut those things witch are not as important as your well being. If you really look there is usually a lot. It is an adjustment, but an important one that reduces your stress and over expectations of yourself. We honestly work too hard for things we don't really need. There is not always a medical solution that allows us to keep the life we are used to. It's time to adjust. I am sorry you have so much to deal with right now. The American way is that of stuff and money too often and not that of health and happiness. The absolute hardest part was to get my spouse on the same page.
 
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kasie75 responded:
Hi, I feel so sorry for you. Don't want to be rude but what a jerk. I also have been ill for about two years and I was missing a lot of work and dealing with a ticked off boss due to my absences. I finally realized that I could not work that job anymore. I know from experience that you have to be so depressed, confused, angry and feeling all different emotions. I know I did and still do however it is getting better.
This disorder is enough to deal with in itself, you do not need that negative attitude from your husband. I would have hit the roof if that was said to me. What I would do is sit him down and explain to him what you are going through in detail, maybe have him go to doc with you. The main thing is when you married it is for sickness and in health!! After you have a deep convo with him about your symptoms I would ask him-are you going to help me through this or just try to make me more miserable than I already am. You need support right now. Do not except anything else girl. Do not let anyone treat you bad. I total feel for you and if I knew you lived in my town I would totally have a talk with your husband myself!!
Sorry I get a little ramped up at times. Just know you need to take care of you and you need to be with someone that supports you though good and bad times. Money is not everything, family is. It is not in your head and do not let anyone tell you that!! Let us know how you are doing and if the treatment your doctor has you on is working. Anytime you want to talk let me know!!!
Best of luck for you honey and I am sorry you are dealing with this.
Kasie
 
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missist replied to kasie75's response:
Coming at this from a different perspective--I think Bette said something like this once. Its hard to believe this is going on in your loved one. There's nothing you can see, the symptoms constantly change and are unpredictable. Half the doctors don't even believe it is real or treat it properly.

Over the years my husband has sometimes seemed supportive and other times not. I'm not really sure that he has a good understanding of it now-and its been nearly 30 years.

I rely on him so much, and its not fair to him either. He has built his career and makes good money and can support both of us-but I'm sure he really thought I would be contributing more than I do, or at least be a little more fun to be with. LOL.

Sometimes people in a moment when things seem too much-- spout something--and we take it too seriously because it is out of the blue and painful. Marriage is a hard hard thing to keep alive in the best of times--in a chronic illness situation it is harder.

as time goes on I'm betting most of us have been disappointed by at least one person we love. I think I've disappointed and been disappointed by just about everyone in my family at one time or another.

Just 'letting him have it' for his insensitive remark--is not going to help at all. The second or two you feel good for giving as good as you got-- will fade and you'll be stuck with more pain in your marriage.

My advice is let it go for a little bit and when there is a good time to talk, carefully tell him how you feel and that you are sorry life took this turn but that you really aren't in control of it. If he is any kind of good guy-- I bet he is sorry for what he said, and does care about you.

I read once that about half of people with fibro get divorced. I told my hubby that- he said-- half of all people get divorced. True that. These are not the 50s here we live in.

If you have a good guy, eventually you will learn to be good to each other and work around all the mess caused by chronic health problems. it will be ok, it won't be what you thought it would be when you said 'I do' but you never know, it could be better.

God bless--will pray for you, be patient-- it is hard for both of you.
Mary
 
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katmandulou responded:
Hi An_254702 and welcome!


It took me a long time to realize that whatever is going on with me is also going on with DH. There is an ebb and flow between us, with more ebbing on my part, so more flowing on his. I'm glad we haven't gone in the same direction at the same time.


For the past 3 years or so I have been dealing with my mother's failing health (Alzheimer's). My Dad had a fall last summer, and passed in October. He's been hinting (now saying outright) that I need to find mental help. I believe he's right, but there are other things going on that don't allow me the time to find it. Soon, I hope.


I own a business that was failing last year, and I alms shut it down A long-time client needed long0-term help, and I've been there steadily since last June. The check$ are great, and they understand the time I need for my family. They were awesome when Dad got sick and passed, and I'll always be grateful for their support.


I believe mental health has a lot to do with the pain we FMers feel. You might want to talk about it with your FM doc. I did and it helped (he mentioned a few head-docs that might help me).


I wish you the best day you can possibly have!
Lou
 
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bette_kaffitz responded:
An,

I want you to step away from your body and imagine you are looking at a stranger. This stranger does not have any broken bones. All those expensive blood tests and X-rays were negative. And yet this person is cringing in bed, complaining that her left arm hurts. Well yesterday it was her right arm. Last week it was the migranes. (Couldn't possibly be a plain old headache.) Even our family doc can't find anything wrong with her. She just wants to get out of going to work. And have you looked at the mess this house is?

THAT is what it looks like from the outside. Can you blame your husband for doubting--just a little bit--that you're really sick? Didn't you have doubts back before you got your diagnosis?

Try to hold your tongue until you are done with flares--at least for the most part. Then sit down and explain to DH what it is like having fibro. Print out or otherwise secure some of the information that is available. If you have a good book, you might start with all the many symptoms and syndromes that we sometimes have. Give him time to let this sink in.

Cory is right. Most of us are used to having a lot of "things" in our lives. Most of them are awfully nice--but far from necessary. Pare down. And remember, if it isn't there, you don't have to dust it. (My favorite phrase.) Embrace the things that are important. Let go of the rest.

Your husband is scared. He is afraid of losing the life you two have made together. But most of all he is afraid of losing the wonderful woman he loves. Show him that you are still there under that layer of fibro. Let him know that you still love him and need him. (One little idea--- Is it possible that your hubby thinks this new, stronger you--the one who is facing her fibro dragon--doesn't need weak old him anymore? If so, set him straight!)

You are on a long journey towards a new normal. You will have to change how you live, what you do, even how you think. It takes a very special type of partner to walk that road with you. I hope you have that partner.

Bette
 
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kasie75 replied to missist's response:
Hi, Mary-I do agree with everything you say. Sorry I did not mean to sound harsh but that how I get when I feel mad. I am back with my ex-husband and we have had many years of ups and downs. He has also said things like are you going to waste your day away by staying in bed all day and are you going to let this illness beat you I know you are a stronger person than that, due to the fact that he has put me through hell and back.
I guess what I should have said or what I meant was. When my husband or ex or whatever you want to call him said these things, I did not take it lightly. I get upset and I let him know how it makes me feel and he always say he is sorry. I just mean for the person above to explain how things make her feel and no one has a right to make someone feel bad when you are already done. I have been through so much emotional abuse from my husband in the past ( he is not that same person anymore) however I feel this urge to defend and take up for her. I had my husband read tons of information on fibro -why because if he was ill I would do the same for him. I would do whatever I could to learn about his illness and support him-and I expect the same in return. Your right I do feel guilty that I cant do more and I have to count on him so much now, but you know what if it was the other way around I would do the same for him and never think twice about it nor would I ever make anyone I love feel guilty for being ill.
Maybe I am not saying any of this right- just expect others to treat you the way you would treat them. I have let so many people run all over me when I have been so good to them. I don't do that anymore. I treat others good and now I demand to be treat good also! If someone doesn't understand which many don't when it comes to fibro but if they care enough about you then they will do whatever it takes to understand!
I just want everyone to be treated right and that is all I was trying to say!
Kasie
 
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meg_k replied to kasie75's response:
I would venture all of us with FM who are married or have partners have experienced this dynamic. I always tell my story here about how my DH told me to just "push through" (when I was really sick and struggling to work), totally not getting it. Like I hadn't already pushed through day after day after day to the point of hitting a brick wall and being near collapse. He has told me my desire to lessen my work schedule shows I don't care about the financial stability of my children...ugly stuff at times, not nice. I have learned the hard way that this is his stuff rearing its head, not mine. I would do anything for my children if I could. He is just worried about money.

I could not count on him in many ways before I got sick, and I still can't now in some ways. Though he has grown and tried to understand and stuck with me. I have to give him credit for that.

In spite of this, I am less forgiving than some of the wiser ladies above, in terms of seeing it from his perspective. I still am in the stage of blaming him in part for my sickness -- for not listening to me for years when I told him I couldn't handle all that he was placing on me alone, that I needed more help. Years of too much work travel and endless doctoral programs with 2 big jobs and 2 little children on top of depression finally kicked the FM into full gear. Even now, I sometimes feel like he values me more for what I contribute financially to the family than for me myself. Which is sad. I know if I could forgive him, my health and my outlook would improve. I am working on it. Progress is slow.

I have weighed it a lot -- whether to stay married to him. For now the answer is yes. I was just lying there last night thinking, "am I better off overall for being with him?" I tallied it all up and the answer is still yes, today. Part of it is I am afraid to be alone. Who will take care of me if I can't continue to work? I have been denied disability twice now.

Sometimes I just wish he would say to me, "I am sorry you are hurting so much. It makes me sad to see you like this." But he doesn't. I have learned over time that he expresses love more through actions than words. Even though I want words, the heating pad he brings me or the bottle of water when I am resting shows love.

Basically, it's complicated. But love is like that. Life is full of these wonderful !@##$% learning experiences. As someone once said, "marriage is a growth machine." Some days it sure feels more like a wood chipper! Or maybe that's just the FM flaring again. Ha!
 
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omnombrains responded:
Hey there,

I'm new, I just recently got diagnosed and the more I read up on Fibro, it all makes sense. Your post was the first one I read and it's something I've dealt with so I thought I'd say something

I've been with my now husband for about 10 years, we've been married for about a year and a half. I dealt with a lot of the same issues you have, missing a lot of work for random reasons, never quite understanding why I felt so bad and why I felt "sick" so often. I became incredibly depressed, which just made everything worse. I myself didn't understand what was going on with me and it made me feel crazy, I can't even imagine how it looked to him.

I'm sorry your husband made you feel the way he did. He could have worded things better, it sounds like his frustration kind of just came out. I can understand from his point of view as well as yours. I know that you can feel like a burden, the guilt that eats away at you when you have to ask for help, when you can't get out of bed to spend time with them. I went through those feelings and my biggest fear was my husband getting sick of the complaining and leaving me because he didn't sign on to marry a sick person. I explained this to him and this is what he told me.

"I love you for you, I married you because you're the one I want with me. Marriage is about committing to experiencing everything life has to give, the good and the bad and I promised to stand next to you in sickness and in health. I don't quite understand it all but whatever you need to be happy and healthy, I'll help you with as best I can."

I still worry sometimes that I'll come across as lazy or something but I'm doing my best to educate him as I'm learning about it myself.

You did say that you've recently been diagnosed, have you tried to sit down and talk to him, show him information so you can go through this as a team?
 
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ajnsmom replied to missist's response:
Mary,


I just want to say that is excellent advice!


Linda (Jax, FL)
 
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dollbug replied to omnombrains's response:
Hello and welcome....MiMi in NC....I just wanted to say that you have a very good spouse and I hope that h will continue to feel this way. There are a lot of people who have no idea what we FMers go through and most doctors do not know either. One we get this ugly and mean illness it changes our lives completely. There are *tools* that can help us but this might take a long time to figure out the right combination of tools which will work for us.

I hope that new members will check out the info under *tips* and *resources* here on this support site and be sure and review the *member toolbox* as well.

Again I also want to encourage all of the new members to be sure and ask your doctor to check your Vitamin D level. Low Vitamin D can cause some people to have additional pain and it can also affect other illnesses as well.

Take care.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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missist replied to ajnsmom's response:
thanks, its easier to say things like that after 32 years of marriage than it would have been at say 5 or 10. We learn.
 
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tommysmommy11 replied to dollbug's response:
Thank you so much for replying. You have me a lot of really good tips that I plan on looking into. I look forward to hearing more from you.
 
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tommysmommy11 replied to mnjeepguy's response:
Thank you!


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