I am a recently diagnosed man and frustrated with my family's understanding

inotazo

Member
Joined
Nov 1, 2021
Messages
10
Reason
DX FIBRO
Diagnosis
10/2021
Country
US
State
IN
Hello,

I am a grad student and a man who is recently diagnosed with fibromyalgia at Cleveland Clinic. Of course, I have a series of symptoms: headache, neck, shoulder, upper and lower back, buttock pain, fatigue, shortness of breath, brain fog, being sensitive to light/sound, blurred vision, and dizziness.

Currently, my doctor's treatments are nutrition control, supplements, and lifestyle change (e.g., everyday exercises). After several weeks, he is going to prescribe some medication according to my most concerning symptoms.

My doctor, as many articles on the web say, suggested that I should stay proactive. Yes, I am trying my best. My current biggest concern is to go to the campus to attend some auditing classes (i.e., there is no obligation), from which I am currently absent. My dizziness is pretty much awful, and it makes my body always lean toward the right. Due to this dizziness, I am almost unable to walk. Because it is a balance issue, I could walk much better if I lean to the wall or borrow someone's shoulder or when I use a shopping cart. In my mind, to be proactive, I bought a walker. However, my wife and parents-in-law, with whom I stay, reacted negatively toward my purchase. They always say, "You can walk without it. It is too young for you." I always reply, "I cannot walk without it, especially when I go to the campus. Even if I tried, by the time of arriving at the classroom, I would be too exhausted to participate in the class, and it would also ruin the entire day (maybe next day too)." They never seem to be convinced. I am now really frustrated about it. They even say, "Using a walker means giving up. You should push yourself." I never intend to give up on my health situation. Also, because my dizzyness bothers my walking the most, I think it is not a matter of pushing myself. I might be able to bear pain or stiffness to some extent, but I could not control the dizziness.

Of course, being afraid of going to classes is not just from the way to the classroom. My sensitivity to sound also bothers me with listening to the lecture and discussion. My sensitivity to the light prevents me from looking at the PowerPoint screen even through sunglasses. My brain fog deprives me of my focus. If I prioritize more important things to be done, since I became slow for everything, I cannot spare enough time to prepare for auditing class. In this way, there are many obstacles to going to the campus.

On the other hand, as for my obligatory activities, luckily, my research assistant job can be done online, and also, I am done with coursework and have become a PhD candidate. Considering my current limitation, I personally even feel that I would be more productive by giving up the auditing classes and spending all of my resources on more important activities like my job and dissertation work. However, my wife and her family don't think in that way. They take it so negatively and regard me as lazy, not challenging, or escaping from the responsibility.

Besides issues on going to the campus and using a walker, I always feel some pressure about being accused of doing nothing and being lazy by them. I personally try my best every day and do as many things as I can. They nag me employing deliberate quotations from web articles that say like, "exercise helps fibro," "don't give up your job," and "don't stay home and do nothing." Of course, I wish I could do some more, but I have already done my best. I now feel very stressed from this environment. Does anyone have any idea about resolving this kind of situation? Furthermore, I am not a native English speaker (my wife and her family are native speakers). It also restricts my way of expression.

I am glad to have an opportunity to express my health situation online. Please don't hesitate to contact me if you are interested.
Also, if there is any information on active communities for men with fibromyalgia, please let me know.
 

Momzilla

Active member
Joined
Oct 28, 2021
Messages
48
Hello Inotazo,
Thanks for sharing your story. I'm new here too.
I shared in another post today that my mom is basically the only person I vent to but she's not an empathetic person. Alot of people really struggle with empathy especially when they don't understand. I've always bust my butt as I'm a single mom raising 2 kids by myself with no help financially or support other than stuff my mom helps with. I work full time, take care of a single family home, do my mowing and power washing and fixing things etc. And my mother still has a way of making me feel lazy on a day I may ask for her help with something extra.
I can't speak for your wife and family but my mom just isn't empathetic or very comforting and I don't think she ever will be.
So its great you're trying the forum. It took me a couple years to get on here but now that I have everyone has been incredibly welcoming. It helps to see what others share. Im sure your family loves you unconditionally. Im sure my mom loves me. If you haven't already tell them what kind of support you need.
Be specific too. Tell your wife to allow you 1-2 days a month in bed without guilt but if you go past 2 days you want her to then pull you up by your boot straps! (This was just an example I made up) im assuming you're using a translater so hope it comes through right. Or maybe I read your post wrong you do speak English?
 

Momzilla

Active member
Joined
Oct 28, 2021
Messages
48
Also just curious did your doctor rule out other stuff first like MS, Lupus,lymes etc?
I'll have to search this forum. Jemima said we can search stuff. Id like to see what test people had before their doctors said ok its fibro
 

inotazo

Member
Joined
Nov 1, 2021
Messages
10
Reason
DX FIBRO
Diagnosis
10/2021
Country
US
State
IN
Thank you for your reply, Momzilla,
You definitely do a lot in spite of your tough condition! You deserve to take care of your fibro condition more.
While I can count on my wife, I worry about bothering my parents-in-law. I currently live in their house with them and my wife, so I totally feel like an outsider. Plus, I am a foreigner in an international marriage. Culturally and linguistically, I have to put extra energy into communicating. I thought of temporarily going back to Japan, my home country, to stay with my parents, but the restriction for COVID there and my green card application prevented me from doing it.
Since I study in a PhD program here, I think I am fluent enough in English not to use a translater. What I mean is that I sometimes have trouble with subtle expressions or articulation.
 

inotazo

Member
Joined
Nov 1, 2021
Messages
10
Reason
DX FIBRO
Diagnosis
10/2021
Country
US
State
IN
As for ruling out other diseases, I haven't been told explicitly, I submitted my previously taken CTs and MRIs, and my doctor had me take 24h urine exam and blood tests (more than 10 kinds). According to him, these tests were for making sure of his hypothesis that I had fibro. Presumably, they were used to rule out other diseases and find some tendencies that exist in other fibro cases.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,658
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hello,

I am a grad student and a man who is recently diagnosed with fibromyalgia at Cleveland Clinic. Of course, I have a series of symptoms: headache, neck, shoulder, upper and lower back, buttock pain, fatigue, shortness of breath, brain fog, being sensitive to light/sound, blurred vision, and dizziness.

Currently, my doctor's treatments are nutrition control, supplements, and lifestyle change (e.g., everyday exercises). After several weeks, he is going to prescribe some medication according to my most concerning symptoms.

My doctor, as many articles on the web say, suggested that I should stay proactive. Yes, I am trying my best. My current biggest concern is to go to the campus to attend some auditing classes (i.e., there is no obligation), from which I am currently absent. My dizziness is pretty much awful, and it makes my body always lean toward the right. Due to this dizziness, I am almost unable to walk. Because it is a balance issue, I could walk much better if I lean to the wall or borrow someone's shoulder or when I use a shopping cart. In my mind, to be proactive, I bought a walker. However, my wife and parents-in-law, with whom I stay, reacted negatively toward my purchase. They always say, "You can walk without it. It is too young for you." I always reply, "I cannot walk without it, especially when I go to the campus. Even if I tried, by the time of arriving at the classroom, I would be too exhausted to participate in the class, and it would also ruin the entire day (maybe next day too)." They never seem to be convinced. I am now really frustrated about it. They even say, "Using a walker means giving up. You should push yourself." I never intend to give up on my health situation. Also, because my dizzyness bothers my walking the most, I think it is not a matter of pushing myself. I might be able to bear pain or stiffness to some extent, but I could not control the dizziness.

Of course, being afraid of going to classes is not just from the way to the classroom. My sensitivity to sound also bothers me with listening to the lecture and discussion. My sensitivity to the light prevents me from looking at the PowerPoint screen even through sunglasses. My brain fog deprives me of my focus. If I prioritize more important things to be done, since I became slow for everything, I cannot spare enough time to prepare for auditing class. In this way, there are many obstacles to going to the campus.

On the other hand, as for my obligatory activities, luckily, my research assistant job can be done online, and also, I am done with coursework and have become a PhD candidate. Considering my current limitation, I personally even feel that I would be more productive by giving up the auditing classes and spending all of my resources on more important activities like my job and dissertation work. However, my wife and her family don't think in that way. They take it so negatively and regard me as lazy, not challenging, or escaping from the responsibility.

Besides issues on going to the campus and using a walker, I always feel some pressure about being accused of doing nothing and being lazy by them. I personally try my best every day and do as many things as I can. They nag me employing deliberate quotations from web articles that say like, "exercise helps fibro," "don't give up your job," and "don't stay home and do nothing." Of course, I wish I could do some more, but I have already done my best. I now feel very stressed from this environment. Does anyone have any idea about resolving this kind of situation? Furthermore, I am not a native English speaker (my wife and her family are native speakers). It also restricts my way of expression.

I am glad to have an opportunity to express my health situation online. Please don't hesitate to contact me if you are interested.
Also, if there is any information on active communities for men with fibromyalgia, please let me know.
inotazo:

To me, from what you have said you are doing all that you possibly can and more than most people would do. And this is on top of not being in your native country and needing to learn all of the subtle things in this country that those of us who have lived here a long time just take for granted. You are trying extremely hard, and are doing a lot for someone in your position, and none of this is being appreciated.

So, here's what I say about this. You are unfortunately having to deal with some extremely non-empathetic people. I think what they are saying to you is not only wrong, but also rude and completely lacking in compassion. The very fact that you are still in school and doing everything you can proves that you are not lazy, and if you are going around with a walker that is certainly not having given up. Giving up would mean you didn't bother to get the tool that allows you to keep walking so you can keep up with what you are doing in your life! giving up would be you just saying "I can't" and stopping everything. Just continuing as you have been takes an inner strength and courage that your wife and her family are not even acknowledging.

First, they are speaking from ignorance. If they will listen to you, maybe sitting them all down at once and explaining to them what you are going through, that the doctors know you are not malingering or making this up, and that you are doing the best you can, might help. Letting them know that the walker is so that you don't have to give up, and can keep going! Point out to them that "giving up" would be you not doing anything to be pro-active about your condition.
And let them know that their continued negativity is making things a lot harder for you and causing you stress that makes your condition worse. Tell them that if they care about you at all, they need to keep their negative comments to themselves from now on. They don't have to change their minds if they don't want to, but they need not to keep saying these things to you. You already have heard them. And it is not going to help. It is hurting you.

Maybe if you approach this with them all together, staying completely calm and unemotional about it, just stating facts, and perhaps directing them to some websites where they can learn about this, it will help.
If they still continue to rag on you after that then I would start to doubt whether or not they really care about you.
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
754
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
"Using a walker means giving up. You should push yourself." I never intend to give up on my health situation. Also, because my dizzyness bothers my walking the most, I think it is not a matter of pushing myself. I might be able to bear pain or stiffness to some extent, but I could not control the dizziness. .... . ..
However, my wife and her family don't think in that way. They take it so negatively and regard me as lazy, not challenging, or escaping from the responsibility.
........ "don't give up your job," and "don't stay home and do nothing." Of course, I wish I could do some more, but I have already done my best. I now feel very stressed from this environment. Does anyone have any idea about resolving this kind of situation? Furthermore, I am not a native English speaker (my wife and her family are native speakers). It also restricts my way of expression.
Hi inotazo from one of your fellow fibromates here. Brilliant advice already. Let's see if I can add anything useful. To know how to resolve it, I'd make sure whether they do feel you are lazy etc. or are unsure, making sure [edit:] what "they" "feel" and if there is any misinterpretation on either side. If you haven't, praps you can just directly ask and express your feelings about this ("I feel - a bit? - pressurized, as if you think I am... "). Whilst my wife is extremely understanding and sees the pain in my face colour and eyes, she really wanted me to go back to work after 10 months, she thought I'd miss it, she hoped I might be able to. So after putting enormous energy into getting well as best I could - every doc (to date 46) and every treatment (to date >100) possible, I did try, and then she saw that I was struggling with 40%, so softened to me not working at all again, and now I'm doing 10h/w realizes that is maximum, despite having found and spending lots of time & energy on treatments that are greatly improving my quality of life.
Also, if there is any information on active communities for men with fibromyalgia, please let me know.
Yeah, this one here is a great one for men! :) - Seriously: I don't see any difference. The variety of fibromyalgia is much greater than the variety between fibrominnies(? ;-)) and fibromates, altho I've compiled a few differences in coping that studies have "found", if you're interested. More important is being able to talk, listen, be listened to, and this is a good place for that, one of the very best.
If you haven't already tell them what kind of support you need. Be specific too. Tell your wife to allow you 1-2 days a month in bed without guilt.
Yep, definitely. But praps it might help to put it more into the open by listening, asking what they expect from you and answering what your body feels like (use/develop pictures like burning, tin man, flu, things they can relate to, to make the invisible visible) and whether they are expecting you to carry on doing everything, altho your body is telling you not to. (How would they work if they had long-term flu all the time?)
I worry about bothering my parents-in-law. I currently live in their house with them and my wife, so I totally feel like an outsider. Plus, I am a foreigner in an international marriage. Culturally and linguistically, I have to put extra energy into communicating. .... What I mean is that I sometimes have trouble with subtle expressions or articulation.
Do they know all this yet, in all detail? I see you're concerned about bothering them with yourself, but obviously you are already, so by making sure they understand you better, they will become less bothered.
I'll have to search this forum. Jemima said we can search stuff. Id like to see what test people had before their doctors said ok its fibro
Yes, the search function (on my screen above left) works well, the excerpt is chosen large enough that you know what is being said and whether it's worth clicking on.
It's a matter of debate what and how much should be done before making the diagnosis, so people, esp. docs, will be different. The quicker the diagnosis is made, the quicker everyone can stop checking further symptoms, which costs less money, time and energy, but may prevent from finding important parts. Many of us don't like to 'blame it on the fibro' and don't stop looking for further explanations. In my case the 2nd rheum diagnosed it after the 1st didn't and I'd checked with neuro, endocrine and orthopedics - no result, 'so fibro'. But I searched a lot more and found a few answers as well as important chance findings.
Have I missed anything? :-} ;-)
[Edit and Re-edit: It can also help us and them to use the image of "feeling run over by a lorry/train/bus/plane/rhino, like after a bad accident, all the time; and there are many good memes etc. (e.g. web-search for a long thread called "pics and memes that visualize fibromyalgia and other invisible chronic pain illnesses") for a big selection."]
 
Last edited:

inotazo

Member
Joined
Nov 1, 2021
Messages
10
Reason
DX FIBRO
Diagnosis
10/2021
Country
US
State
IN
They don't have to change their minds if they don't want to, but they need not to keep saying these things to you. You already have heard them. And it is not going to help. It is hurting you.
Thanks for the great advice, sunkcola! This is so true and a feasible way of thinking for me. I don't want to give up on describing how I feel, but from my experience, the claim of a non-native speaker does not tend to be taken seriously even I say exactly the same thing as a native speaker, which is excessively exhausting. So, instead of describing every single detail to educate and convince them, asking for quit judging me sounds a good idea. My wife has a quite impulsive character and cannot stop saying what she thinks, though...

To know how to resolve it, I'd make sure whether they do feel you are lazy etc. or are unsure, making sure [edit:] what "they" "feel" and if there is any misinterpretation on either side.
Thank you, JayCS! To some extent, misinterpretation might have occurred, but I was actually told, "You are giving up" when I bought a walker, and "You are escaping from your responsibility" when I said I could not go to the campus. Also, when I said I felt freezing, I heard, "Of course, you are doing nothing." Besides those, I often hear nagging a lot, saying, "Walking is good for fibro" or "You need exercise for fibro," even though I do practice the exercises that my doctor instructed.

answering what your body feels like (use/develop pictures like burning, tin man, flu, things they can relate to, to make the invisible visible
This might be what I should do, though there are some language barriers. Instead of just saying "dizzy," "tired," "painful," this should work more.
 

sunkacola

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Maybe you could talk to your wife separately as well....after all, it's a completely different kind of relationship. If you let her know that she is genuinely hurting you every single time that she says these negative things to you, it might get through to her. Tell her that stress greatly aggravates your condition and that words such as hers cause stress for you which translates into pain. Tell her, perhaps, that it is as if she had a back injury and you were always coming up and poking her in the back, making her pain worse. Perhaps a metaphor like that will help. I find often that if I use a comparison like that, I can get the idea across to another person when other things have failed.
 

Jemima

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Joined
Jul 30, 2020
Messages
708
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DX FIBRO
Diagnosis
11/2019
Country
PT
Hi inotazo,

From what I've understood (not a doctor!) the dizziness that comes with fibromyalgia is fundamentally orthostatic intolerance. It can appear as extreme dizziness and feeling faint when you first stand, or it can - as it sounds to be in your case - continue for as long as you're upright. I'd guess that if it also affects your heart beat, then it might fit the profile for postural orthostatic tachycardia syndrome (POTS). If I were you I'd perhaps read up on these things, discussing them with your doctor if you get a chance. You might find that enables you to add some new vocabulary to use when describing what you're experiencing, and explaining why you can't just do the things others think you should do!

I totally agree with Sunkacola and JayCS - try not to take it on your own shoulders when others are being unsupportive, because it's not your fault or even responsibility to address. We all hope that our loved ones will understand, and it's so difficult when they don't, but looking after you should come first. If you can get your stress level down, your symptoms may improve, so don't hesitate to prioritise your own needs. Good luck finding the right path forwards, and I truly hope everything eases up for you soon.
 

Creola17

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Messages
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I haven't read all the posts yet cause I'm feeling sleepy so if this was already suggested just ignore. Lol
Maybe you can educate your family by having them watch some utube videos on fibromyalgia. My doctors in Reno have some great videos that really explain fibromyalgia. Go online and check some out then maybe get them to watch. My husband found them when he wanted to understand and help me.
Take care of you.
(((gentle hugs)))
 

Warbucks

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I am 82 and have gone thru these nightmares before including the college scene. I suggest you get a cane like I have instead of what you have. It is light, extremely strong, can be extended by a quick turn of the shaft to 7-8 feet to be used as a walking stick or used to pull things from the high shelves in the supermarket.It is a CHINOOK Technical outdoor walker, and can be purchased on eBay ($23.99), Amazon( $19.78). They come from Switzerland I believe aluminum, in three adjustable sections, with a piston built in that helps your shoulder. Believe me this is what you want and they are tough
 

Marvis

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Joined
Jan 28, 2017
Messages
149
Reason
DX FIBRO
Diagnosis
05/2016
Country
CA
State
Ontario
I’m so sorry that you are struggling with this. Having a chronic illness is hard enough without living in an unsupportive household. Ask your wife to attend medical appointments with you so that she can hear the information first hand. Ask her to become a partner in this. A good movie to watch with her is Unrest by Jennifer Brea. Make sure that she understands that her lack of support is making you feel alone and unsupported, that you question whether you should return to Japan. It might be that she feels she’s ‘gently pushing’ you towards recovery and not giving up and not understanding that she’s making you more ill. She may be afraid that she is losing you and acting out of fear, not realizing that she is pushing you away emotionally and sending you further into a spiral of ill-health. I do think that concentrating on the most important aspects of your PhD is really important. If the lectures aren’t critical, I’d set them aside aside and focus on what you really need to do for now.
 

sunkacola

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UNREST is actually about chronic fatigue syndrome (ME) but it applies in so many ways to those of us with FM, especially since fatigue is a large part of the FM syndrome. It is, indeed, an amazing film and I recommend it highly!
Also, Jennifer Brea has done a TED Talk on ME, and I highly recommend that as well. she is so articulate and interesting.
 
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