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fibrofears

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Moderators: I apologize for the repost. With 230 views and no replies, I think my old post was just too long. Please feel free to delete it.

Hello. Please help me. I need your help. Please forgive the long post, but know that I am grateful for your time.

My girlfriend of three years was diagnosed with fibromyalgia/chronic fatigue syndrome in September (symptoms noticed in July/August). So far, her symptoms seem pretty mild. She can’t work, but she is taking classes online.

I absolutely do know that fibro and CFS are real conditions, and I fully understand chronic unrelenting pain, due to a spinal problem.

I’ve spent dozens of hours reading hundreds of pages about fibro – forums, studies, anything I could find. I’ve worked hard to understand fibro and how my girlfriend feels. This prompted me to revisit the issue of children with her. I’ve read that 50% of children inherit fibro. I was also worried about affording children on one income (we’re not financially stable). Combine the costs and heritability of fibro, and I felt we might be wise to forego children. Over that, she broke up with me.

I love her. I love her so much that I’m obsessed with researching this illness, and with helping her. It’s all I think about. A huge part of me wants to go to her and explain my love and loyalty - to try one more time. We’d have to look at the potential future consequences of fibro, but I would explain to her that we could accept those changes, and that we could survive it together. I want to help so badly, and I know I can.

I realize that she doesn’t want to consider the possibility that we might have to change our dreams. I understand, but I know we still may have to do just that. After all, I may simply not be capable of supporting her, two children, my parents (I’m all they have), and myself, if fibro keeps her from working. And then, one or both of the children could have fibro too. Further, I will be moving across the world for her, and that will place my parents 10,000 miles away, increasing travel needs/costs.

I have some questions. Please understand: These concerns aren’t about me. They’re about our relationship. I know that fibro comes with a 75% divorce rate, and I think it’s important for both of us to understand hat sacrifices need to be made, and what fibro can take. Please be honest with me, and please don’t judge me.

1. Online forums make fibro look really, really bad. Is it that only the people with the worst fibro symptoms post in online forums? Or are forums representative of the norm?
2. Is it fair to bring a child into this world with a 50% chance of developing fibro, as bad as the condition seems?
3. Can the typical fibro sufferer fully perform as a parent? Is it realistic for the typical fibro patient to work as a parent? I obviously expect to share these burdens, but I know I can’t handle it all myself.
4. Does fibro cause life to revolve around the television? I know it’s limiting, but how limiting is it usually? Can someone with fibro travel actively (my family will be 10,000 miles away)? How badly does fibro affect sex life/drive?
5. At what point do you know the extent of a given fibro patient’s affliction – how bad it will get?

Please be honest with me, and please be fair to me. I have asked these questions for the right reasons. I’m the one who wants to beg her to work with me so that I can support her. I’m the one who wants to take this on voluntarily, all because I love her. If you could feel what I have felt recently, you would know that I am genuinely focused on her, on our relationship, and on my family.

I would be grateful to hear from caregivers and fibro sufferers alike.

Thank you.
 

JKerner59

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Hi and welcome..

I am not a medical professional so my comments are based on my own experience...

Each person with fibro has their own journey...finding a doctor who is experienced in dealing with fibro is a plus...exploring all alternative complimentary alternatives (massage, acupuncture, exercise, etc.) ...finding the right recipe of controlling the symptoms and being prepared to handle fibro flare ups....finding a way to handle stress so that it does not exacerbate (sp?) the symptoms is also key. Of course, pain control is paramount.

I was always a project person...long "to do" list.....just can't do that anymore without suffering setbacks of pain and fatigue...I have to pace myself.

I cannot speak to having children in this mix as I am not a mother....I don't know how fibro mothers handle life but hopefully someone will respond to your question who has kids.

Having someone care for you when you're not feeling good about yourself because of physical limitations placed on you which is out of your hands is a wonderful thing....I certainly hope that the two of you can work through things...love is certainly worth it....I am 60 years old so I look at things a little differently than someone of child bearing age...but I know this...it's all about love.
 

fibrofears

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JKerner,

Hi. Thank you very much for your message and your thoughts. I will definitely take that all into account. The love is definitely there. There's no question about that. May I ask you some follow-ups? I realize that this is all very personal, so I will understand if you cannot answer some or all of them.

1. I know that each person with fibro has her own journey, just as each caregiver has his. I realize that it's different for everyone. But do you think the forums are pretty representative of the normal journey, or do they represent the very worst cases?

2. You mentioned that you chose not to have a child. I know that this is very personal, and please forgive my abruptness. But may I ask if fibro played a role in that decision? As someone without the disease, it's hard for me to really fully understand it to its fullest extent. That is why I originally leaned against having a child who would have a 50% chance of fibro. Can you share with my your feelings on that?

4. I know that fibro is really limiting. But do you think that most fibro patients are able to get back to pretty normal lives? Or are most housebound? I don't expect my girlfriend to play sports with me or anything. I just want us to be able to have time together. I fear for the relationship if every outing requires me to go by myself, as she will grow to resent that, and I may just feel alone in the relationship.

5. I'm very concerned about the ability to travel, due to the intercontinental situation. I obviously don't want to give up my family here in the US. Do you think travel is realistic for the average fibro patient? The trip is about 20 hours (14 just to get from shore to shore).

6. This is very personal, but it's a major concern at 30. Still, due to its personal nature, I fully understand if you would rather not comment. At my age, sex life is an important part of a sustainable relationship. Do you think the typical fibro patient would be willing/able to have a normal sex life? Thus far, this has not been a problem at all, but my concern is that fibro will destroy that.

Thank you so very much. I know this is pretty personal, and I understand that it's kind of a tough issue to address anyway. After all, my girlfriend shares this condition with you, and I know you want the best for her (as do I). My thoughts are that a healthy relationship, above all, is what's best for her, while an unhealthy relationship would be bad for both of us. For that reason, I really want to know what these issues look like, because I want to take on these things with full knowledge. I never want to look back and feel surprised or cheated in life. Instead, I want to go in knowing what I'm facing, so that I can own it as my own decision, and so that I can take it on happily, with courage.

Thank you again. Thank you very, very much.

To everyone else: please, please, please. I know this is a tough topic, but I really need as much input as I get. The resources just aren't there for caregivers, and its in everyone's best interests that caregivers are well-informed on these things.
 

moe1959

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It sounds do to me like you have way to many thoughts on your plate. I guess I'm a little bias, my niece recently died of brain cancer, her boyfriend at the time wanted to Marry her, she was the one who said no because she wanted her Children off to College first. ( when I heard that, about her boyfriend wanting to get Married regardless of the Cancer I said to myself....now that's True love. PLEASE, BE AR IN MIND, IM NOT I YOUR SHOES, THE F CT THAT YOU HAVE TAKE IT UPON YOUR SELF TO STUDY ABOUT FIBRO SAIS SO MUCH!
Best wishes!
 

Lana

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You sound like a great person and no I am not judging you. You have a right to feel the way you do. This is your future to! But I want you to realize that I am the only person in all of my Family and relatives that got Fibromyalgia. I am talking about Cousins, aunts ,uncle, grandparents none of them have or had Fibromyalgia. I applaud you for all the research you are doing. Sometimes you have to be careful where you get your information from. If you both are happy and in love don't let Fibromyalgia come in between that. Bug Hugs!
 

Lana

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I am glad you are talking to people with Fibromyalgia here you will know the truth. I will let you know about me and my illness. It is very painful, but I have great days, good days, ok days, sore days, bad days and very bad days. This would not stop me from getting on a plane to go on a vacation. I don't think I could do a 20 hour flight though. If I had a recliner to put my legs up I could probably do it then. I have slowed down alot, I walk slower, I clean my house one room at a time. I enjoy going to the movies with my Husband or the drive inn. We go out to dinner and I enjoy slow walks along the beach. Fibromyalgia changes your life that's for sure. I have learned not to dwell on the things I can't do. I can still have sex but when I am in alot of pain my Husband understands. Some medications can decrease your sex life, I just avoid them. Because sex is a big issue in a relationship and I want to keep it healthy. Plus it is my chance to get a massage. Fibromyalgis has not made me housebound a all. I simply have good days and bad days. I hope I have helped answer some of your questions. Good Luck!
 

Lana

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Oh I want you to know that I had to quit my job Because of Fibromyalgia. I am just not reliable anymore. The demands of a job are over wellming and my body just can't go when I want it to. I am 48 yrs of age and not a young chicken anymore. Maybe someone younger with fibromyalgia can manage to keep there job.
 

fibrofears

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Lana,

Thank you very much for your encouraging, candid, and thorough replies. I really appreciate it! I also want to emphasize that I appreciate your additions to your initial reply. Thank you so much for continuing to think about my question, and for adding additional thoughts as they arose. That means a lot to me.

It’s wonderful to hear that your symptoms are manageable, and that you’re able to do well.

It’s very encouraging that fibro hasn’t appeared throughout your family. It’s really hard to get statistics on it, and the 50% comes from a family study I read somewhere. I have seen other studies that indicate it’s eight times more likely in children of parents with fibro (which would bring it to a range of 16% to 40% probability), but those were not accompanied by studies. To be fair, the 50% study had a lower sample size that I’d have liked (about 50 families, if I’m remembering correctly). It may be that I’m letting fear persuade me to accept lack of information as valid information on that issue, as you pointed out. It’s so tough with fibro, as the condition hasn’t received even a fraction of the attention it deserves until recently (though it’s really great to see the medical community starting to move to deal with it – finally).

Thank you for the encouragement. I’ve spent the entire night reading about fibro (and a bit about CFS, too). Quite a lot to sleep on tonight. The toughest part of this is all the unknowns, but it's starting to seem like the unknowns are unavoidable. Still, I am grateful that you shed your light on the subject, as it's really helpful to hear some of the positive stories. It's so easy to get bogged down in the negative ones.
 

Forgetmenot

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Hi Hun, ok first off.your in a online relationship I take it. Have u even meet this girl yet. Your worrying about things that haven't happened ,I have four kids from 18 to 2 years old all are fine, also my mum and dad don't have this so I'm not sure it's been proving its passed down the line.
Second and I don't want to upset u here but online chat with someone is easy to say things when your not going to bang into that person in the St.
I was in a real life relationship we were together 3 years the plane fairs were stupid high I couldn't move over there he wasn't allowed to live here with out work ,he was in Canada I'm the uk. Even when he moved to Paris we were still miles apart , I wish it was as simple as moving over ,it's not and it broke both our hearts.
Pls stop and think about this hard ,it's easy to fell in love no even easier when it's online ,
 

fibrofears

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Forgetmenot,

Thank you for your message. It's wise, and you're entirely right to ask those questions. Those are very, very valid questions. You're entirely right that an international relationship is very, very hard. The distance, the time in the air, the money... it's almost impossible. I would not initiate another long-distance relationship.

Thank you for telling me about your familial situation. That makes me feel a lot better. It's good to hear good things about that, because the genetic component of fibro really scares me. When I someday have a child, I want him or her to have the very best life, and the idea of starting it with a major disease is really scary to me. It's good to know that you haven't encountered that issue either.

May I ask: how do you feel fibro affects your parenting? Do you feel like you're able to fully engage in parenting? Are you able to work also? What do you think is the most common outcome for a parent with fibro?

My girlfriend and I have spent about 1.5 of the last 3 years physically together. The other half has been facilitated by Skype. Visas, money, jobs, and medical issues (I had a spinal problem that messed up a few months) have been the primary reasons for the distance to this point. We just about had that worked out, and then fibro blew up on us. Kind of one of those situations where we've fought and fought to make it work, run into the multitude of problems (you know them too well, as someone who's done a distance relationship before) and, just as we had it worked out, we hit the biggest one yet.

Were this a new relationship, I'd just have to look at it and decline, as the consequences of the move alone would be too big. But there's so much more here.

I do appreciate the words of caution and advice. I know exactly where they come from, because they're exactly what I'd say to someone else, having done the long-distance thing too. I'm not offended at all. I know that everything you wrote came from the right motivations. I just wish it were that simple.

Thank you again. Going to grab that nap and sleep on all of this information. So very much to think about.
 
Joined
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1. Online forums make fibro look really, really bad. Is it that only the people with the worst fibro symptoms post in online forums? Or are forums representative of the norm?

Online forums simply represent the most vocal people. Some people have milder cases of it. Others don't want to complain.

2. Is it fair to bring a child into this world with a 50% chance of developing fibro, as bad as the condition seems?

Whether or not the child gets firbomyalgia, she will still have problems of her own. Parents can not shield prevent their children from experiencing the pitfalls of life.

3. Can the typical fibro sufferer fully perform as a parent? Is it realistic for the typical fibro patient to work as a parent? I obviously expect to share these burdens, but I know I can’t handle it all myself.

Define typical. The conditions is different for everybody. Talk to her how she feels.

4. Does fibro cause life to revolve around the television? I know it’s limiting, but how limiting is it usually? Can someone with fibro travel actively (my family will be 10,000 miles away)? How badly does fibro affect sex life/drive?

Disclaimer: I identified as asexual for the longest time. I now think I was wrong, but I may not be able to answer the second part of your question. Travel can be tiring, and it may affect your partner badly. Maybe you can plan smaller trips and see how it goes.

5. At what point do you know the extent of a given fibro patient’s affliction – how bad it will get?

I'm sorry, I have no answer for this question.
 

terbaer

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Messages
430
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DX FIBRO
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10/2010
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WA
I understand why you are overthinking this issue as it relates to fibro. You have a lot riding on your decision. Just be sure you get factual information. I have never heard that fibro is hereditary. No one in my family but me has it. I have had the illness while working full-time with two kids at home. Unfortunately, I should have quit a few years back because I spread myself way to thin. I didn't have the energy to devote to my family and I was like a shell of a person when I came home. I have not worked since July and I'm finally getting my legs under me a little bit. I'm far more active in my family's lives. I still have extremely bad days, but we weather the storm together. My husband and I still go to the dunes. Once in a while I get to ride my quad. If I'm having a bad flare, I sleep a lot, or play camp bump-on-the-log and just hang out at the campground. We were fortunate enough to go on a cruise for 8 days and it was wonderful. I rested when I needed. I bumped up my pain meds when we went ashore and if I got too worn out, we came back. There was no set schedule so we really had a great time. As for a 20-hour trip? That would be difficult. I won't say impossible, but it may set a person like us back several days just making the journey. Meaning, there will probably need to be several down days once she gets there. I would probably need to bump up my pain meds to get through that much sitting in uncomfortable seats.

All this said, life is what you make it. If you think of it as a burden, it will feel that way, whether talking about children or dealing with a significant other with fibro. Many a person marry people with far worse conditions than what we deal with. My husband didn't ask for what I'm going through. That's what "for better or worse" in our vows means. On my good days, I try to do things for him and the family. On my bad days, he covers the responsibility. Also, where did you hear 75% of fibro relationships end in divorce? For me? It has made my relationship with my husband better than it ever was before. I don't really know why, but he has gone from my "I work to play" to "we work together to make a successful life together regardless of how you feel" attitude. We talk more. We laugh at (sorry to be gross) my flatulence. Usually it's the guy who passes the most gas. Well, with my colitis/IBS issues, I can serve it right back at him! LOL....

I can't give you advice on what to do, but you could find someone local tomorrow, marry them in 6 months and a year later find out they can't be faithful. Or, one of you could be hit and have some paralysis and are wheelchair bound. My point is there is an endless amount of "what if's" in the world. Life is what you make of it.....Good luck and keep us posted! :)
 

Forgetmenot

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Hi terbaer,
When me and my partner parted , apart from the broken heart , I found well I banged into a old flame who I was going out with when I was 17!.lol
Well we been together 3 years along with my fibro, I worked in an army camp and then I found out I was pregnant . I had to give up work as I just couldn't keep going I was in pain and felling asleep all the time.
The pregnancy was good apart from being sick the whole time , and I mean being sick not feeling ill.and every time I look at my two year old now I think she wouldn't be here if we had stayed together so always rainbows axx
Anyway my sons are 18 16 and my older daughter is 13 .if I didn't have them I'd be in bed oh and I have a puppy lol .yes some days are hard ,somedays are painful. But the less I move the worse I get the more stiff .so u see they keep me moving even when I don't want to , and I had this 13 years now . I go swimming with them as that easy on the body. I do everything other mums do. Sitting on your bum does not help one little bit. Not for me anyway,I can't talk for anyone else. Somedays I shuffle alone like I'm 80 that when painkillers come in handy.
When my hands are bad I do what I can and leave what I can't do. I cook every night and look after my mum and dad as much as I can. I don't drive and even though a car would be great im just to tired to get behind a wheel.
But for me I no doing nothing make me hurt like a b.....
Yes fibro is a unwelcome guest who never leaves but I'm dammed if it's taking away my life.
No one knows what tomorrow bring my love , while your worrying about tomorrow your not enjoying today.ive never read the bible but Jesus said something that sticks with me . Take care of today and let tomorrow take care of itself.
No amount of worrying will stop the future. I do not believe my children have any more change of having this then anyone else. This isn't a disease it's a condition a very painfull one but as I have been told but my dr who is 100 percent believer in fibro it's not a disease , that does not mean it's not real or its not painful. It means your kids are not at risk like a disease . Hope that helps xxxx
 

Lana

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Messages
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DX FIBRO
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Fibrofears, You have a right to think of your future, I don't blame you at all for your concerns. But if you truly love this girl then don't give up just because of Fibromyalgia. Please stop reading things online because sometimes it can scare you. We are the ones that are dealing with this condition, if you have any question feel free to ask anyone here, We can answer your questions and are glad to help. Take care
 

ProfessorCPA

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Jun 1, 2014
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00/0000
Country
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State
FL
I've managed to work with fibro/severe depression/herniated discs in neck/Meniere's disease but it was not easy. I got my education before I was hit with all these conditions. My college accommodates me by letting me do all online classes.

Everyone is different. When I got my depression treated properly, the pain and fatigue from fibro went way down. I was able to function again. Stress and depression make fibro so much worse.

As long as you are honest with her and she is honest with you, things will work out the way they should.

Also remember that most people with fibro aren't on online discussion forums because they are not that bad. Those of us who need this type of support are the ones who have it the worst.
 
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