It would be extremely helpful to have examples of his comments.

Welcome - I hope you get a diagnosis soon whether fibromyalgia, or something else, because it really leaves you in limbo in terms of treatments and solutions when you dont' know what you're dealing with.

Thank you, PeaceN2You. Yes, I too will be elated when I do finally get a diagnosis. The first rheum my PC doctor sent me to was no help at all, so I'm on to another one, but have to wait another two months for my appointment.

Examples are things like, he will ask me about how I'm feeling and I'll say something like I'm moving very slow today (literally), and he will respond with, yea me too it is a dreary day (because it's raining outside). When I first explained to him that I had some "health problems" his response was, it's OK, everybody does now and then....I don't say very often that I'm tired or that I don't feel well, because I don't like to complain, but his response is always, yea, me too. And when I explain to him (numerous times) that I don't have trouble sleeping I have trouble resting, his response is always to laugh. He laughs at all of comments/responses. You wouldn't look at someone who was complaining about cancer and laugh would you? I am having a hard enough dealing with this on my own without him laughing at my problems, even if that might be "his way" of dealing with it.

I have found it difficult to date. I'm older now and had enough of all that so I'm happy being alone with my animals. It's very hard for people to understand our issues. I have a co-worker who said I had to hit her over the head with it for her to finally understand. I think you should be honest about how you feel and how he makes you feel. When he says things or laughs and irritates you, tell him you're irritated and why. Since we don't look sick, it's difficult for others to know how we feel.

Susan

It may take a long time for your new boyfriend to "'get" it. If you do have fibro (I hope you don't--and have something curable), or even if you don't, try keeping your mentions of how your feeling short and move the conversation to other topics. This helps in even longterm relationships.

And vent to others who have the illness. It's hard for anyone to imagine the unimaginable....but that said, you can give him some reading material, such as "Letter to Normals"' and anything else you come across.

Take him to your doctor's appointment when you finally have a diagnosis.
Does he ask how he can help?
does he offer to massage you?
Does he say, it's okay, just rest?

You really need someone very understanding.

Hope this helps. It's not easy!!!!

Oh boy, that's a tough one. Welcome, btw:-)

I'll keep a good thought for you, b/c without an official dx? You can't buy "Fibro for Dummies" and hand it to him. (It's good one)....

And before you come to depend on him too much, you may want to ask him if he believes you've got something underlying wrong, medically speaking. The fact he said "Everyone does now and then" is not an indicator he acknowledges chronic issues as possible. I was dx'd at 25, and I got a lot of the whole "Young people don't get *seriously* sick" routine--- Argh! Like sickenesses care about birthdays.

So let him know you're being screened for some serious chronic type stuff--- could be as simle as a vitamin deficiency, could be a chornic pain condition --- and see what happens.

My hubby is a wonderful man but it still took my rheumatologist talking to him for my hubby to *really* get that FM is not gonna just "evaporate" by wishing on a star....

Good luck!

Welcome! I'm new too. Just got on here yesterday for the first time. :)

I have a sweetheart of a friend who, bless her heart, truly believes that no one else experiences anything she hasn't felt. If you asked her that, she objectively knows better, but that doesn't stop her from making comments very similar to the ones you listed from your boyfriend. And when she's at a loss for a response, she doesn't laugh... her default response when she doesn't know what else to say is "Pray about that." I'm certain there are many differences between her and your boyfriend, including, hopefully, the ability/willingness to think past himself and validate your experiences.

Can you involve him in the process of waiting for the doctor's appointment? Gathering information, keeping a daily record of how you're feeling... make him part of it. If he is to increase his role in your life, he will have to become more involved in those things anyway. Now might be a good time to put some information in front of him and ask him to "help" you sort through some research on fibro or similar invisible illnesses.

And give him a copy of the spoon theory. Even though my husband has experience with long term illness and recovery, the spoon theory really opened his eyes to the reality of my daily life with invisible illness.

I ought to add that I don't mean you should begin to depend on him for things related to your illness. I meant encouraging things that increase his exposure to that part of your life and the information that would help him understand it, if he is willing to understand.

Hi. Welcome to this group. I am not the right person to comment on those type of relationships - I am too bitter from the very long miserable marriage I got out of.

I think you need to remind yourself too that he's a great guy and he just doesn't understand it. You, yourself don't even understand it, or have a diagnosis yet for it. I think possibly take some time to sit down and have a serious talk. Like you said you know he's not doing anything to hurt you on purpose, and if he knows it hurts you, he will try to stop probably, or at least catch himself...
The main thing is open communication. Just tell him how you feel (but not during a time when your upset and frustrated, do it calmly.) then when it happens again, tell him, that's what hurts your feelings.

I would suggest you get the book, "Fibromyalgia for Dummies". It's an excellent book. You will get loads of info from it. There is also a chapter for loved ones to read that should help your bf understand better what you are going through. I know you haven't been diagnosed yet, but I still recommend the book. Also you should tell your bf that his remarks hurt you. Maybe he laughs a lot because he doesn't understand what you are going through and it's his way of coping. I wish you all the best.

Sweetie, be very careful about deciding he's "the one" until you know for sure how he will be with whatever your diagnosis might be. Making that decision too soon will cause you to overlook many red flags that you might otherwise heed (wisely).

I have to say that his responses so far indicate, as others have said, that he isn't informed about the potential severity of your illness.

And while I get that you don't want to complain all the time, complaining is different than having a heart-to-heart talk with him so he understands that no one can relate to what you're going through unless they've been there. (I read on some other post how a person's doctor--years ago--said she had never heard of fibro-type symptoms appearing according to a woman's cycle. And then she recently got diagnosed with fibro, and told this patient, "OH. I didn't know."

So I would caution you against making it a good fit with this fellow, and suspend your judgement until you see that he will be as supportive, understanding, and encouraging as you may need for the rest of your life.

And, also as others have suggested, give him reading material about fibro and explain to him that it seems to be what you have. If he can get to the point of understanding your varying symptoms, you won't have to complain; he'll just know.

Months ago, someone mentioned having a magnet for the refrigerator. One side said something or was a certain color for when her days were really bad, and the other side was appropriate for when her day was not so bad (there's rarely ever a "good" day in many of our experiences). This let her husband in on what was happening without having to go into detail, complain, or get frustrated when he couldn't just tell how she was feeling.

All just food for thought. I wish you the best!

Lamb

jjam86,

I strongly suggest you have your new Boyfriend go with you to a Doctor's appointment and let the Doctor explain things to him with you there. Better to handle it sooner rather than later if you think you want to be with him long term.

Welcome to the group. It is difficult for people that do not have health problems to understand. My husband will mention that I'm out grossly out of shape. Or. If you work out I would feel better.
I hope you get a diagnosis and I really hope you do not have fibro.

Hi jjam86,

I you don't mind me asking what sort of things does he says? I have fibro and it is not pretty.

So far you have received lots of good advice. But here is mine.

I say wait until you have a firm dx. Explain to him that your doctors are ruling out the scary stuff first but you believe it's a chronic illness of some kind as you have been burdened with this for (insert the amount of time here).

He does sound like he cares, but keep in mind that men are "fixers'' by nature. And if you have something that can't be fixed, then it's equally frustrating to them and they all cope differently.

His comments to me sound too like he hasn't fully understood 'chronic' yet but he's trying to fix the situation to make you feel "not left out". Honestly, through the "oh boy, he doesn't understand this", it's rather sweet.

Until you get a firm diagnosis, it's going to be tricky. Like others shared, don't take too much to him (again he's going to try and fix it and sometime words that are not well thought through hurt). Vent with us. This is going to be hard at first because when he becomes your best friend, you want to share everything with him. I use a 90% support board/ 10% hubby rule.

But one more piece of advice. Be aware of your body language when dating. This is a biggy for guys. You know those days where you're so tired and fatigued and all you want to do is curl up next to him and fall asleep under the protection of his arms? Well, guys often see that as a signal that you're moving in for 'something' more. Then are often confused when you don't *want to*.
Or how your muscles ache so much and even the slightest touch hurts....it's natural to flinch away from them. They see that as, I did something wrong and go into "fix it mode".

These are just a couple of examples but we send of a million more.

And last, if you have to, bring him to an appointment. Through the 3yrs I was dating my now hubby, I had a bad dx on a faulty gallbladder that took some time and finally required surgery.
Later, I had what I now believe a flare complicated with my PCOS. This took 6 months of going back and forth to the Mayo Clinic.

My hubby learned my cases were complicated then and have stayed true since then. But by bringing him a couple of times, he saw things in a different light, but was relieved he didn't have to do the fixing. He was happy I was going in to the doctor as he didn't want to see me suffer either.

I wish you the best. I too knew my hubby was the "one" early on.