How do you explain what fibro feels like?

[FibroWhatsTHAT]

My wife is German born to Germans that were raised in the ashes of WWII and basically has the "never call in sick" attitude to work and life. I try and explain that I feel like I am being electrocuted in addition to having the flu, and it doesn't seem to phase her. Is there an article or book or something I can show her that will convince her that I am no (sh) joke suffering? I feel like I am being slowly tortured, and having my partner have the "yeah sure, ok.." attitude about it doesn't make fibro any easier to deal with. We'd spilt if we didn't have young kids, but since we have kids and I have fibro I really couldn't get through life without her. Any insights are appreciated

 

[sunkacola]

Hi and welcome.
You can always have her come here on this forum and read some of the things that people write about this. Don't feel alone, because it is far more common, it seems, for family members/colleagues/friends/partners NOT to accept and understand than to be helpful.

Many people here have posted about this, and there's a whole thread that deals with it.....but I am not finding it at the moment. Maybe @JayCS will come on and post a link to that thread for you.

There's nothing you can do if your partner refuses to support you. But sitting down for a very serious one-on-one with her, no kids in the house for at least an hour, and explaining that, while you do not expect her to do anything to make your fibro better or to go away, since that would not be reasonable, it is entirely reasonable for you to expect that, as your partner, she NOT do the things that make it worse. And refusing to believe you or support you is stressful for you, which makes it worse.

If, however, the state of the relationship is so bad you would leave if you felt you could, it doesn't sound very hopeful that this would help. Worth a try anyway, maybe.

And you can always come here and vent if that helps at all. We are here to support you, even if it's only virtual.

 

[JayCS]

Is there an article or book or something I can show her that will convince her that I am no (sh) joke suffering?

Click here for our thread here with a collection of resources about how to understand others - and ourselves! - with these invisible conditions.

My wife is German born to Germans that were raised in the ashes of WWII and basically has the "never call in sick" attitude to work and life.

Hehe, I'm a German in Germany, and I must "agree" that I'm notorious for having that attitude. If I had a cold or flu I made sure I kept away from everyone at work and slowed down, but I went. I even managed to break my collarbone in holidays instead of in work time .
Yeah, my parents were raised in the ashes of WWII, but so many people around me here do not have this attitude, so I wouldn't want to "blame" it on that. Rather I guess those here that are like me are "honest", "reponsible", "reliable" type persons, who don't like to be a burden for others, prefer to sacrifice themselves. But I don't think that's a particularly German thing, just generally personality type. Also even now I'm hyper-active, it's hard to keep me down, even tho I can hardly move, I've just switched what I do a lot of the day online even more. I still work a bit - altho others in my situation might long have given up, is what I'm told. But that might partly have to do with the personality thing.
And there's enough other reasons for people not being able to call in sick, like in the US financial reasons.

Funnily enough, I started having to call in sick when the swine flu struck me down, and after that I did carry on thru as much as I could, but every cold and flu was harder, for the first time I sometimes had to stay "in bed". This was not admittance or difficult for me. It was just new. And I knew I had to succumb. Just thought it was praps age or something.

On the other hand, I was always very understanding of others who were sick, never expected them to come to work or anything at all. I was also very interesting in weird conditions like MCS (multiple chemical sensitivity), collected info on that early, knew people who had it. And helped people find out their weird conditions. When a colleague had some strange fatigue I helped research it, and wasn't surprised when the diagnosis CFS came up.

So: I don't think expecting this of onesself necessarily means we expect it from others.... I think the cause to expect it from others comes from something else. Maybe empathy needs stimulation?

 

[FibroWhatsTHAT]

Thank you so much for your thoughtful response Of course not all Germans are like my wife, I dated another German girl a decade earlier who was nothing less than sunshine and light 99% of the time. I wouldn't want to paint all Germans with a broad brush. Her Grandmother had to flee east Germany/Czechoslovakia by herself with 3 children and pregnant ahead of the Russians advancing and settled near Stuttgart. They were shunned by locals who resented all the newcomers from the east, and work was hard to come by, as well as food. On her mother's' side both parents died young and the kids had to work and navigate a stepmother that didn't like them all that much when their father passed. They lived in Westheim west of Hasford. They didn't pick up a lot of interpersonal communication skills when they were young due to the environment they grew up in!

Anyhow, yes empathy skills need work - a whole other ball of string to untangle. I just feel she doesn't believe my diagnosis, or really understand it. I am just hoping to have other people's' perspectives on what their fibro feels like for my own comparison and to possible have better ways of explaining what is going on with me to her. Yeah I shouldn't have to, but I do and that is the way it is... We have kids who are 5 and 6 who's futures depend on me to figuring this out.

Thanks again for your response. I have asked my doctor a number of times if I really have fibromyalgia and wonder if it could be something else like CFS. He was voted best Rheumatologist two years running in my city and he's sure he's right in his diagnosis.

And thank you Sunkacola for your kind words. We sat down again I went through all this with her... Again. I get the buy in and she says she understands an is on board, but things always devolve back to status quo. I keep telling her I should record these talks we have so I can just press play next time I don't have to go over it again! I need to follow up on that next time I have to explain it all once more, the next time it comes around on the guitar..

 

[JayCS]

I have asked my doctor a number of times if I really have fibromyalgia and wonder if it could be something else like CFS.

I haven't been diagnosed with CFS, altho a specific form of fatigue is my main and debilitating symptom, but I don't depend on docs as I don't tolerate meds, and am always looking over that non-existing fence to what helps CFS, which is easy to do if I follow Cort Johnson's healthrising.

but things always devolve back to status quo

Yeah, that's a tough one, some people more change resistant than others, but everyone a bit, being human.

I have various techniques to help remind, like sarcasm ("strange my body doesn't obey your mentality, maybe we should buy a more obedient one"), putting things in a nutshell ("pushing thru will make it worse, slowing down will make it better: do you want it to get worse or better?") or writing down for myself (and praps her) and repeating the core phrases that "worked best" to understand.
Relationship spin-offs similar to this was something my psychologist helped me with.

Things that helped my (admittedly caring, German ) wife:
pre-fibro seeing all the effects of all my difficult foods on my gut (something unknown to her)
fibro-buildup: seeing me cry from wind and cold, altho I never cry,
seeing my stiffness every time I get up from sitting etc., that was what made her send me to rheumatology.

So seeing is believing (how silly, actually), and if someone doesn't see, which in the case of invisible conditions is often the case, then we have to show our emotions openly, and describe the symptoms.

Also seeing that I'm doing all I can and researching like mad helps her see I'm not resting on my oars for the fun of it.

Another one: realizing that the backlashes from overdoing it are seldom worth it.
That can only be made clear if we learn what overdoing it / pushing thru feels like, during and after,
learning to identify for ourselves and point them out to the other person, so they can "follow" what's happening.

One of the problems is my rest of social anxiety concurring with social situations now being a major stressor, that's one point where she does push me over my limits and usually doesn't see it, believing that my extraverted part needs nourishing too, which has greatly decreased...
That's when i do have to sometimes describe the pain beforehand, until she sees it in my white face and lips.

 

[sunkacola]

I should record these talks we have so I can just press play next time I don't have to go over it again! I need to follow up on that next time I have to explain it all once more, the next time it comes around on the guitar..

That is actually a very good idea. Maybe it would bring home to her how exhausting it must be for you to have to say it all over and over.

 

[doni]

I think one of the most expressive pictures are those they use in ads showing all the bruises etc. I tell my husband that it feels like I've been beat up. I think I may have another resource, I'll check and let you know.

 

[FibroWhatsTHAT]

So seeing is believing (how silly, actually), and if someone doesn't see, which in the case of invisible conditions is often the case, then we have to show our emotions openly, and describe the symptoms.

This has been my strategy for years, openly showing emotions and talking frankly about my feelings. It's like a language she just can't understand. She came back from her mother's house yesterday pretty upset that her mother was declining in health and never going to change. She saw how negative toward things that her mother was, like our children being exuberant, or asking a million questions, and how her inclination to react negatively toward basically everything was so deeply ingrained - and then she heard my words playing like a loop in her head from the hundreds of times I had made exactly the same point to my wife about the way she approaches life - always from the negative view. It's basically a defense mechanism they both use to keep things at a distance so it doesn't disturb their inner status quo, which is always at a delicate balance due to low self esteem and past practice. That's my diagnosis... My wife 47 and I am 54. I have told her time and again that the window for growing into a person who tends toward the bright side of life verses a person who tends toward the negative is going to close as we advance in age and she better get moving if she doesn't want to end up like her mother.

I realize this is getting off topic but your understanding of the German side of things (only some Germans that is) is insightful. The negativity that my wife exudes around the house - almost telepathically - makes dealing with my fibromyalgia particularly difficult though. Trying to stay positive while your partner has slipped into "the dark side" because well, that's the way she was raised, is unbelievably difficult at times. Hopefully she has seen her future in her mother and will try and overhaul her outlook on life. That's going to be a challenge.

 

[FibroWhatsTHAT]

I think one of the most expressive pictures are those they use in ads showing all the bruises etc. I tell my husband that it feels like I've been beat up. I think I may have another resource, I'll check and let you know.

Exactly! I tell my wife that when I wake up every morning that I feel like I drank a fifth and got in a bar fight. I almost have to look in the garage to see if my car is there (joke). But I do feel like my body was borrowed by someone who drove it like a rental and gave it back right before I woke up.

But yes, beaten up. I feel like that too. Thanks for sharing it and reminding me that I have said that before, it's very accurate, and feeling like that is emotionally debilitating. Not being believed makes it all the more depressing and demotivating.

 

[Shrub1975]

Hi, I am new to the boards. I was dual diagnosed about a year ago with degenerative rheumatoid arthritis, osteopenia and fibromyalgia (on top of existing brittle asthma and COPD). My experience of fibro is constantly feeling like my body is encased in lead, numb tingly feet (which was the first symptom that sent me to the doctor), total exhaustion which hits without warning and the latest symptom to have developed is pain in my ribs and shoulders. Still trying to navigate what I can and can't do and learning to pace myself, without burning myself out.

 

[JayCS]

The negativity that my wife exudes around the house - almost telepathically - makes dealing with my fibromyalgia particularly difficult though. Trying to stay positive while your partner has slipped into "the dark side"

Similar to my wife, altho probably not quite as much. Like we said my great psychologist helped me with improving my techniques to let any arrows and negativity to easily deflect. I had to from the start in this relationship learn to keep my emotions independent, and she has learnt to accept that, and I think she allows herself now to profit from it. Fibro making it hard made me need to talk with a professional, which was a bit funny cos my wife long kept wanting me to go, partly, but not fully realizing that I'd be talking about coping with her more than other things. 10x I went, and could go any time, but don't need to anymore, despite things getting physically worse, been ages since my wife asked if I want to go again.
She knows she should be going again too, but tougher for her, cos lots of things deep down, whilst all mine deep down have been worked on over the decades with about 6 therapists, so I just had to do a bit of fine-tuning.

But yes, beaten up. I feel like that too.

Me too, definitely, every time I overdo it, which often doesn't take much.

 

[sunkacola]

The negativity that my wife exudes around the house - almost telepathically - makes dealing with my fibromyalgia particularly difficult though. Trying to stay positive while your partner has slipped into "the dark side" because well, that's the way she was raised, is unbelievably difficult at times.

I can understand this completely. I also can identify with where your wife is coming from somewhat, and sympathize with that. You are in a tough situation.

I think that what JayCS says above is significant in that he learned techniques that help him to deflect that negative energy and not allow it to harm him. If you can manage to see a therapist and can find one who can help you learn how to do that, I think this could make a huge difference for you. If you cannot afford a therapist, or find a good one, or if for some other reason that's just not going to happen, I wonder if you can find some suggestions for techniques to deflect negativity from others by looking on the internet. I don't often recommend to people to try to find solutions this way, but it might in this case be worth a try. Maybe some kind of visualization would be helpful to you. Just a thought.

 

[Willowtree]

My wife is German born to Germans that were raised in the ashes of WWII and basically has the "never call in sick" attitude to work and life. I try and explain that I feel like I am being electrocuted in addition to having the flu, and it doesn't seem to phase her. Is there an article or book or something I can show her that will convince her that I am no (sh) joke suffering? I feel like I am being slowly tortured, and having my partner have the "yeah sure, ok.." attitude about it doesn't make fibro any easier to deal with. We'd spilt if we didn't have young kids, but since we have kids and I have fibro I really couldn't get through life without her. Any insights are appreciated

I'm completely new here. First post, and feel really weird about it to be honest, never been in a forum. I've been kinda "hanging around" haha. But when you said you felt like you were being "electrocuted" I felt I HAD to respond. Because though I have most other symtoms, that can be the most embarrassing because it comes out of the blue. Reach for a cup of coffee, and jerk back violently because it shot through my hands. Try it again with the other hand, same thing happens. Anyone watching you would be understandably confused. Happens with my legs, my arms, my feet, I just jerk spasmodically out of nowhere. I grew up on a farm and I know what an electric fence feels like. That's it exactly. And if it helps your wife you can share my story. At the risk of sounding "mean" have her put an electric dog collar to her wrist and see what her reaction is. I love dogs, always have had them, but for this reason ALONE I will NEVER put a shock collar on them, even for vibration. I hope this helps. I actualy consider myself lucky I live alone, because I can gasp, whimper, grunt, shriek, cry all by myself and not have someone watching me, lol. Btw, I am German born, I know ALL ABOUT suffering in silence, never calling in sick.......I got so miserable I just simply didnt care anymore. If people do not believe you, even if they don't say the words, their feelings "hang in the air" and that causes you stress and guilt. It makes it worse. You deserve better. Be good to yourself. I will pray for you.

 

[sunkacola]

@Willowtree , welcome to the forum.
That shock symptom you have.....wow. I also know what an electric fence feels like, and that's an intense thing you have going on there. Have you had all of the possible causes for this investigated? I ask because I have not ever heard of this with relation to fibro.....which doesn't mean it isn't, just that I haven't heard of it. It sounds neurological, and definitely strange.

I have sudden very sharp pain at times in my hands, wrists, arms, or shoulders, which occur sometimes when I go to pick something up and I have to put it down again fast. But have never felt that kind of shock sensation you describe. I have had the thousand-pin-pricks-of-electricity, or feeling of having ants crawling and biting all over my legs. Highly unpleasant to say the least.

Like you, I do not live with other people, and am often glad of that. I do live with my animals, and couldn't imagine my life without them. They don't react when I gasp or make other sounds, since they are used to it. I agree with you about how attitudes can taint the very air. I always advise people to get rid of toxic people in their lives............but this is not always possible, depending on a person's circumstances.

In any case, feel free to keep posting. We are all here to help each other.

 

[Nookster]

I'm not going to pretend I know exactly what you go through and what that must feel like, but I can sympathize and hope this forum can help you, even just to feel heard is part of what helps come to terms or in some cases, heal some wounds.

My own experience is similar in ways, I was 21/22 when my symptoms started however and my husband at the time couldn't comprehend what I was suffering from. There were a lot of ups and downs, a lot of support and also downplaying, as I liked to call it. Long story short, I as a younger person didn't understand, why he couldn't understand. I always thought I explained it so clearly and it was frustrating that he didn't get it.

What I know now, some 15 years later, is that it he couldn't understand. It is an invisible condition for most, some have trauma that triggered it, some didn't. It's really hard to explain, and I sympathize with that as well.

We separated, my story didn't end well there but, spousal support is possible. Understanding that someone who doesn't go through it themselves may not understand how it feels, and on the other side, having your partner understand your needs even if they don't understand what exactly goes on and what you go through, may be helpful to find compromise in while you seek and go through treatment.

I don't have perfect advice to and know there's no perfect solution, but just wanted to let you know there's support out there to help you come to terms with things, and hopefully help you find some tools that may be useful for life as it may be right now. Guess you're in the right place ^.^ hope you find success.