New to the forum?

Sign Up Here!


Already a member?
Please login below.





Forgot your password?
Need Help?  
How to make people understand
15 Replies
13tracy13 - January 1

I am 28 and was recently diagnosed with Fibro. I need some help making my husband understand what I am going through. Does anyone know of a good informative website or book that might help him to understand.
Last night he told me he thinks it's total BS that I don't have the energy to clean the house when I have the energy to go to work and take care of our two kids and still do my school work but when it comes to cleaning my energy disappears, I tried to explain to him that some days are worse then others and also tried to explain that after working all day, taking care of the kids before and after work and getting my school work done I am drained and feel like I can't function. He is still calling BS on the situation, and I feel so lost right now. Trust me I'd rather clean all day instead of having Fibro. How can I get him to understand. Any advice would be appreciated.

 

Fantod - January 2

Hello 13tracy13- I am very sorry to hear about your situation. This is a common complaint from most people with fibromyalgia (FMS).

First of all, have you read through all of the information on the lefthand side of this page? You need to become an educated consumer now. Knowledge is power. Did you know that both the Arthitis Foundation and the Center for Disease Conrol (CDC) both recognize FMS as a bonafide health issue?

Personally, I find your husband's behaivor shameful. Are his arms broken? Is there some good reason why he can not pitch in and help with the kids and housework? Do you have a good relationship with his mother? Could you ask her to help you get through to him? How about a pastor if you are church goers? Counselling? And finally, this is the best website I have ever found on the subject. Ask him to read it.

You are going to have to reprioritize your activities or you are headed for a serious crash. FMS is nothing to be trifled with and overextending yourself will only get you into more trouble physcially. Would it possible to have a cleaning service come in even twice a month to help out? How old are the kids? Can they pitch in too?

Lets back up and talk about FMS in more detail. FMS is a short circuit of the central nervous system. The mechanism that causes it is not understood and there is no cure. It can be managed with medication, plenty of rest and stress reduction. Living with chronic pain is debilitating and demoralizing. Most of us feel as though we have a bad case of the flu 24/7. Coping with daily living demands and high levels of pain is more than most of us can stand. I generally feel like I am trapped in a 90 year old body.

Your husband is dead wrong on the fatigue issue. Part of FMS is the inability to get restful sleep. You may sleep a lot but wake up feeling unrefreshed. Because of the deep sleep cycle interruption, your muscles have no time to repair themselves from the prior days exertion. It is a vicious cycle and only gets worse the more you push. This is a hard lesson to learn. Believe when I say, being overextended only leads to more FMS related issues.

You are in the early stages of figuring out which medications may work best for you. You should be seeing a rheumotologist for treatment. You can find a FMS friendly rheumy by going to the National Fibromyalgia Association website and ask them for a referral in your area. Perhpas including your husband in a doctors office visit might be helpful. Bear in mind that medication will ease the pain but it will probably still be there on some level.

Diet is very important. You should be focused on a high protein diet. Do not use any artifical sweetners or diet pop. If you need a sweetner, try Stevia which can be found at any decent health food store. Diet anything will make your pain level worse. Also stay away from processed lunch meat and deep fried foods for the same reason.

My heart really goes out to you. I fail to understand why any spouse would take such a nasty attitude towards an illness most of us would not wish on our worst enemy. Part of the problem with FMS is that unlike a broken leg, it is entirely subjective. You know what you are feeling, but no one else can see it for themselves. This is one of the reasons why it is so difficult to get disability.

By the way, I think that there is a "Fibromyalgia for Dummies" book. I have no idea if it is any good but most of the books in the Dummies series are decent.

Take some time to read the posts on this site too. There is a lot of good information and you will find that you are not alone in your concerns. I hope that you are able to get your husband to be more empathatic and helpful. Keep in touch and take care.

 

13tracy13 - January 2

Thank you for the reply. Your post was very helpful, I didn't know about the sweetners or diet issues.
I'll check into the fibro for dummies book. If I can get him to read it some info would be more helpful then no info at all.
Thanks again.

 

Fantod - January 2

You could also go to the Arthitis Foundation website and search "fibromyalgia." There is a lot of good information on that site as well. If you don't want to share this site with him, that would be a good alternative. Keep in touch and take care.

 

FibroGal - January 3

Hi, 13tracy. I empathize. Your experience sounds similar to mine. I am 46. I was diagnosed about 2001. My husband has denied fibro's existence for years and only recently has begun to acknowledge it. I am an extremely anxious person and have gone through periods of great fear and almost panic, concerned my symptoms were caused by horrible diseases. It took several doctors and years of confirmation for *me* to finally accept I have *fibromyalgia.* I've since begged my husband to accept it and support me because his refusal only increased my anxiety, doubt and fear. His denial only fed my continued fear that I had been misdiagnosed and I had some horrendous terminal illness. I think, thankfully, he is now starting to understand that and he actually asks me now, on occasion, how my fibro has been on a given day.

My fatigue is the worst as, on average, I cannot get to sleep until between 1 and 3 in the morning and cannot get up until 11 or noon. On a good day, I'm able to do dishes, laundry, go grocery shopping and make a meal. But, that doesn't mean I always should do all that because if I overdo it like this on a good day then I pay for it with a few bad days. And on those bad days, I'm lucky if I can maybe do the dishes *or* make dinner before I'm so exhausted I have to sleep a couple of hours late afternoon/early evening. Then it's back to the frustrating sleep cycle again. However, as tired and painful as fibro can be for me, I thank God for it because it is not damaging my body and it is not going to take my life. Please remember that. No one gets off scot free and you're going to be okay. I hope you understand what I'm saying. I mean it sincerely.

Bless your heart for doing what you do and the sacrifices you make. I've been a stay-at-home mom for 10 years and often wonder how others with fibro are able to work as well as manage a home and family. 13tracy, you must take care of yourself or you can't take care of anyone else. May I suggest that, if nothing else, at least try to put a hot meal on the table for your husband, even if that means just soup and sandwich or spaghetti--something simple. I think that is most important. But continue to ask for his help and if you can't get it, just let go of whatever you can't do. And I agree with fantod. Get support where you can, from other family, from friends, from church, etc.

And continue to gently ask your husband for help. Don't let his unbelief intimidate you into feeling you must pretend you don't have it. Pray for him and pray God give you the support you need you're not getting right now. God bless, 13tracy. You *will* be alright. And, with time, your husband will come to understand.

 

sunnydee71 - January 3

Tracy,
I know exactly what you are going through. I was diagnosed 3 years ago and My husband has just recently realized in the last year the severity and reality of this disease. What really helped my husband is the visits to the doctor with me. THis way the doctor was able to explain things to him that just confirmed everything that I was telling him. Honestly, it took time for him to understand it. It took me a long time to understand it. Actually, I'm not so sure I still fully understand it. But just keep on focusing on your priorities and a clean house, clean laundry, and clean kitchen sink are not them. It took me a while to let those things go. But taking care of my kids and myself were the no. 1 priorities. Save your energy for the things you want to do. This is going to discipline on your part and prayer for your husband to understand and to feel for you. I'm so sorry that you suffer with this awful disease. Keep your chin up and remember to laugh daily. My kids got that covered. But never stop hoping. You will get through this. We have to go through the fire to be refined. Remember to celebrate what you can do and not to grieve what you can't do.
Sunnydee71

 

sunnydee71 - January 3

Check out Dr.Lapp on the internet. This is my specialist and he really helped my husband and myself. Also sign up for the newsletters from NFA (National Fibromyalgia Association)they are really informative.
Sunnydee71

 

fibrofribros - January 5

I have had firbo for over 25 years. I suffer from all the symptoms unfortunately. The only person who understands me is my wife and may be my mother, the rest of the family and friends think I am BS and lazy. the question I often get asked: I see nothing wrong with you, why you're complaining? So, now I don't talk about it anymore except with my wife. I do my ddaily thing which is take my maximum dose op 4000 mg of paracetamol over the day and try and try get through the day. It's a terrible disease and no one including 80% of the doctors undertand or believe you.

 

gucci - January 5

hi im new to this forum i also have fibro ive had it for over 2 years but only got the diagnosis last oct. ive got it from head to toe and to top it up i suffer anxiety attacks cause for 2 yrs i didnt know what was wrong with me and i thought i was dying, i have daily headaches ,aches in my chest and pain in my upper left arm as well as pain in feet, hips ,back and neck elbows, and trying to explain to family and doctor how im feeling i feel it just goes over their heads, im currently on 30mg of amitriptyline at night and paracodomol when required (not much help)its great to know there are people out there who know excactly how im feeling. i went to the rheumologist 1st visit to confirm fibro and px meds and 2nd visit she discharched me from the clinic saying i was coping ok with the fibro. i felt i was left on my own to cope with fibro untill i read this forum and found so many people with the same pain and feelings as i have .bless you all x x

 

13tracy13 - January 6

gucci, hang in there, but if i were you, I'd find another Rheumy to see, even if you are "coping" well with the fibro you still need a Dr who will not just discharge you, but be avalible for any problems you may have or changes that may come.

Fibro sucks, but it is noice to have a place like this to come where we can all relate to and sympathize with one another.
The support here is great.

 

Jeanwe8 - January 9

Hi, 13tracy13. I can relate to your lack of energy for cleaning house. I don't have children, but I work 40 hours a week. When Saturday rolls around each week; I dread it. That's my house cleaning day. I know that when I'm finished with cleaning every joint and muscle is going to ache. It makes it extremely difficult to get up out of a chair later in the evening and move around. Regarding your husband's attitude toward Fibro; mine was the same way until I had him read some good articles about people with Fibro and how they feel. He is a sales rep. Part of his job is to sell hot tubs. He has met enough customers who also have Fibro. Talking to them, I think, has also made a difference. It took him awhile to come around, but now he's much better. He'll actually help with house work (which he wouldn't at all before), and (gasp!) sometimes even cooks a meal. He has a good relationship with his mother. She has a friend who has Fibro, and talking with her about her friend, I think, also helped him understand. I hope this helps you out. I know some of the above worked to make Jerry understand.

 

gucci - January 10

hi 13tracy13 thanks for your reply, i am going to ask to a rhemi again as my symptoms have been horrendous this week, having pains in my arms and across my chest and across my back( due to the cold weather i think)it sets me panicing again then that makes it worse, ive tried numerous times telling my husband how im feeling but i think it falls on deaf ears. im so glad i found this site i know im not alone here cheers x

 

jacquie - January 10

Gosh, I can't believe you get done what you have to do everyday. I'd never get through your normal day. BTW, may I ask what your husband does all day? I don't work because of the pain, fatigue, insomnia, depression. There are many informative ways to discuss fibro with your husband if you just surf the web. But if he is as stubborn and selfish as he sounds, he may never get it. BTW, my husband couldn't handle my sickness (long story) so I divorced him.
Jacquie

 

JOEGIRL - March 8

I have been lucky that I have a understanding husband but my best friend just doesn't seem to. She always mad at me because I don't go do things with her as often as I use to. When I am having a good day I try to get with her and go shopping, yard sales , casino or out to eat like we use to. Before I got down we were always running the roads doing something. She thinks I just don't want to hang out with her anymore and hasn't called me in a while. I really miss her sometimes.
My hubby has become my best pal so thank God for him.

 

axxie - March 8

13Tracy13, I give my hat to you, I cannot do half of what you do, even on a good day. I cannot work and I'm always hoping that maybe one day I'll be able to go back to work. I know that will not happen. As for the husband and the kids, well you can always suggest to your husband that he can take over 2 meals a week and take care of the kids bathtime. You have to sell yourself and this illness if you want him to understand. Fantod was right about the dummy book, keep it in the washroom, that's where I keep the reference books, my husband tend to like to read in the washroom. So I keep it there, I also found that a diary left on my night stand is a good way for my husband to get it, when he doesn't understand.
I write how crappy I feel today and wish that someone would be able to help me make lunch or dinner. It took a while but guess what it helped, my husband it always going through my diary and I place it so that he can read about.
If your mom has fibro or someone else in the family have them casually talk about the symptoms without complaining. Men don't shut themselves off when we nag or complained. So I make it a habit to casually say something like, I would love it if for someone would help me out with supper today, it would help out the whole family. After awhile maybe your husband will get the hint. You have to pace yourself, maybe only pick up the kids toys one evening, the second night maybe you can pass the mop on the first floor, or just the kitchen. That's what I do now, one days I clean my kitchen counter and kitchen. On another day I pass the vacuum and on another day I may wash clothes, I don't do everything everyday, as I don't have the energy and I would pay for it dearly the next few days in symptoms.
Pace yourself and try to give yourself a compliment everyday. We are all here to give you advise and hope you will try some of them and see how things are going. I admire you being able to work, go to school, take care of the family etc, etc, and have fibro. You have strenght and determination, now apply yourself to what you can do today and do only what you can the next day. Don't forget sometimes we miss the mark in getting others to help us, because we don't advocate for ourselves, like it was said, it's a job into itself to sell ourself with our symptoms.
Good luck

 

linda brown - March 9

hi, i agree with 13tracy13. i just had a hearing before a judge for my disability benefits, and before i went in, we heard him say that he's not very impressed with fibromyalgia. and i just got my decision letter telling me that i want get my benefits, of course i will appeal, but he had his mind made up already. i wish you the best of luck. as for your husban, just tell him he don't get it because he don't have it, God bless

 

Message:


You must log in to reply.

Are you New to the forum? Sign Up Here! Already a member? Please login below.

Forgot your password?
Need Help?
Ask a Question