Purchase the book "Fibromyalgia for Dummies." You can purchase it on Amazon. This is our go-to book on this board. It will give both of you a comprehensive overview of this complex illness.

Insist that he go to the doctor with you so he can hear first-hand the exchange between you and the doctor.

Maybe, he thinks whatever medication you are taking should "fix" the problem. With Fibromyalgia, that is like putting glasses on a blind man and expecting him to see. Every day is different and in this instance the so called cure is less than perfect.

Fibromyalgia is recognized by the Centers for Disease Control, the National Arthritis Foundation and the World Health Organization. It also has its own diagnostic code which means it is a legitimate disease and not something that people make up.

Good luck as this is a common problem that many of ups struggle with in our own families. Take care.

Not to sound doom & gloom but he will never understand the pain, the fatigue, the brain fog...unless you experience you really can't know.

He CAN see how it affects you. I became celiac fifteen years ago and it took some time for my family and other folks to believe it (me too actually, though not as long as I kept getting really sick). Once they saw me be very strict about avoiding gluten and stick to it - and my husband saw first hand how sick I would get - they understood. It may take time. What annoys me is how people go gluten free as a weight loss diet - then some folks assume that's why I am gluten free. Ugh. I guess with fibro people may think we're just lazy or over sensitive.

It may take time for him to get, see how it affects you - and unfortunately there is no magic pill that makes you feel better and totally pain free (I wish !).

Good luck.

I kind of agree with elf....they can be sympathetic but can't TOTALLY understand.

I've tried reminding him how he felt when he had the flu.....that's how i feel most days.

Another good read is "The Spoon Theory".....explains our daily decisions on how much energy to use on what tasks.

I've also heard having someone put a clothespin on their finger, and leaving for several minutes helps....I haven't tried this one! LOL

Good luck....hope some of this helps!

HUGS from down south :)

Thank you everyone! Your advice is much appreciated! Best wishes to all!

My sister is probably my biggest critic. She recently had a virus that put her in the hospital. Long story short, she ended up having severe respitory problems which really set her back. After 3 weeks of being out of work, she actually said "I am sick and tired of being sick and tired and now I get how you feel. I just have no energy".

So, they won't ever fully get it, but they can sympathize.

I've been on this site 6 years. If I had a buck for every time I saw this question?....I'd afford better health care.

I'm repeating but...

1. Fibro for Dumies

2. Take him to the doctor with you, sit him fdown and have the doctor explain to him what this is, how it works, and why it's not working out to the spouse's satisfaction. I had a few go-rounds with my hubby early on (20 years ago), and after he went to the rheumy with me a couple times? Like, into the office and treatment room? Ohhhh, he came out with a verrrrry different view. For one thing, my rheumy was male and had a fibro dx. In 1995, that was "unthinkable". Really?

3. Set up a system for how you're doing. I have red yellow and green pieces of paper on the fridge. Green means Good; Yellow means could use help; Red means leave me alone, I'm done.

4. Marital counseling. Sometimes, you need a third-party mediator to broker what he says and what you say, and what each of you is thinking you hear. Hubby had this horrible way of saying, "If you're up to it" that I took as condescension but he was just trying to find a delicate way of finding out how I felt. (Ergo, the red-yellow-green thing up above!)

5. Tie sixty pounds of weight to his body and have him live like that for a few days. Ten at each wrist, ten at each *knee*, and twenty on his back. I've never done it, but the fact Hubby knows I've planned it out? Yeah, he kinda gets I'm not joking.

Luck and blessing!

I tried everything with my ex. He just didnt want a sick wife. My home life is much more peaceful since we split up.

You have a lot of good suggestions and I wish you the best.

I like everyone's suggestions here.
Getting my husband to go to the doc with me is like pulling teeth. He sees it as a waste of time where on his time off he could be surfing instead of sitting in a boring doc's office.

On the other hand, my ex went to the doc with me on a regular basis but that didn't change a thing. He was still a condescending nars-hole who convinced everyone I was a hypochondriac.

So I really don't know what to say about this. I used think I had all the answers back when I asked my husband (then boyfriend) to read books on FM, etc, but now I know what really matters is the heart. If they really care about you it won't matter what they've been or not been through, they will try their best to be supportive.

With my husband, he seemed to be so supportive and genuinely interested when were dating... but once married and then seeing what it's like LIVING with a sick person, all of a sudden he's not so supportive anymore and instead tends to criticize. So I'm back at square one.

Funny how Leo mentioned tying all those weights to each limb! I've threatened that several times. Don't think I won't do it!

I hope this helps you:

loveletter
Depression, Personal Story, Resources
Letter to People without Chronic Pain
May 22, 2006 guest 351 Comments

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand
These are the things that I would like you to understand about me before you judge me

Please understand that being sick doesnt mean Im not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably dont seem like much fun to be with, but Im still me stuck inside this body. I still worry about school, my family, my friends, and most of the time Id still like to hear you talk about yours, too.

Please understand the difference between happy and healthy. When youve got the flu, you probably feel miserable with it, but Ive been sick for years. I cant be miserable all the time. In fact, I work hard at not being miserable. So, if youre talking to me and I sound happy, it means Im happy. Thats all. It doesnt mean that Im not in a lot of pain, or extremely tired, or that Im getting better, or any of those things. Please dont say, Oh, youre sounding better! or But you look so healthy! I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, youre welcome.

Please understand that being able to stand up for ten minutes doesnt necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesnt mean that I can do the same today. With a lot of diseases youre either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, sitting, walking, thinking, concentrating, being sociable and so on it applies to everything. Thats what chronic pain does to you.

Please understand that chronic pain is variable. Its quite possible (for many, its common) that one day I am able to walk to the park and back, while the next day Ill have trouble getting to the next room. Please dont attack me when Im ill by saying, But you did it before! or Oh, come on, I know you can do this! If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you areto be physically able to do all of the things that you can do.

Please understand that getting out and doing things does not make me feel better, and can often make me seriously worse. You dont know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, dont you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, You just need to push yourself more, try harder Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You cant always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldnt you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now it cant be put off or forgotten just because Im somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please dont. Its not because I dont appreciate the thought, and its not because I dont want to get well. Lord knows that isnt true. In all likelihood, if youve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then wed know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, its probably because I am. Its not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you people who are not sick. I need you to visit me when I am too sick to go out Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.

AUTHOR UNKNOWN
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TIPS FOR DEALING WITH PEOPLE IN PAIN

1. People with chronic pain seem unreliable (we cant count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. Its like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Dont take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldnt normally bother you, seem too much.

5. Patience may seem short. We cant wait in a long line; cant wait for a long drawn out conversation.

6. Dont always ask how are you unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the bodys ability to feel varieties of discomfort.

12. We may not have a good reason for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized disease. That does not reduce the pain, it only reduces our ability to give it a label, and to have you believe us.

AUTHOR UNKNOWN

Thank you for this, my husband drinks to deal with the stress so finding a way to get him to understand without blaming him is hard he always feels like it's his fault I'm lazy and so on. You just put it as it is I believe that he will respond to that and hear me. Thank you so much.

Have your doctor, who knows about your fibro, talk with your husband. Your husband accompanies you when you go to see your doctor. Tell doctor, nurse, you will be bringing your husband into the examination room with you.

When I was diagnosed with Fibro I had my husband come with me into the examination room as asked the doctor to tell my husband, explain Fibro, what was happening with my body.

It can be difficult, it takes time as spouse, children, family members get used to one who has fibro. They remember the fibro person before fibro happened, want the person to "be normal" again, feel frustration as there is nothing they can do to unchange the fibro.

My diagnosis of fibro in 1995 and I'm still having to remind my family about my fibro at times. Yes, they seem to have forgetfulness and I have to be on alert to watch out for myself.

I really do not care what he thinks or understands. I do my thing he does his.. simple as that..

I have even told him to move on if so wishes.. but he is still here but.. I keep to myself we are like roomates I guess. so bit it