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Any suggestions for me? I am a woman in love with a man living with FM...

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Posted 2/6/2009 3:27 AM (GMT 0)
 

Hello to you all, thank you for sharing your experiences, I must admit you all have opened my eyes. I am involved with a man that has been living with Fibro for 7 years. When I first met him he tried his best to get rid of me, I later found out it was because of him having Fibro. I have tried numerous ways to reach out and help him even beyond my best abilities, I love him so very much! I am just wondering if anyone out there has some advice, maybe you all can share with me things that your loved ones have done to help you? He is so angry, which I cannot blame him, with all my research I have begun to develop an understanding, and even I have become angry with this disease! He has become so used to going it alone, he has even begun to believe he will never have someone accept him, which he is wrong as I always try to tell him, I love him and no matter what I am going to stick by him and do all that I can for him. I have researched natural cures, and prescription meds. I just think maybe someone out there may have a better way for him to cope with the symptoms, I believe patients come to know more than their doctors. I wish you all the best! I thank you.

Amber

Posted 2/6/2009 3:36 AM (GMT 0)
Hi Amber!

A relationship with a man with fibro will not be easy. You can't really SEE the disease, and what is OK one day hurts like crazy the next day. You will need a LOT of patience, a willingness to understand his particular problems, and to "get it" that often he may not be able to do the household stuff. Not b/c he is a slob, or doesn't want to, but b/c he simply CAN NOT.

Learning massage might be a wonderful gift to give him. You learning it, I mean. That way you can help when he gets muscle spasms, etc....Just be careful and gentle, esp at first. There are some awesome books on massage that can be found inexpensively at on-line sources, and you may also be able to find a massage therapist who would be willing to give you some lessons.

Somewhere on the internet is a "Letter to Normals". If you google that you should find it. It really explains a LOT. Really helped my husband.

It might also be a good idea to see a therapist. You will have a LOT of feelings to work through. A professional can be a lot of help - to you, to him, and to the 2 of you as a couple.

Kudos on being willing to accept him as he is and love him anyway. And for wanting to understand more and try to help.

Susie
Posted 2/6/2009 4:09 AM (GMT 0)
Hello Amber,

Welcome to HealingWell.  I am so happy that you have joined us.  If you read the fibro101 thread, the second thread, you will learn a whole lot about how we feel and what we are going through. 

I really liked the suggestion that Susie made about the massage.  That would really help him.  And it would be relaxing to you too to give it.  LIght massage is what he needs, no deep tissue massage.  And it is another way for you two to really connect. 

I think for men it is extra hard, because they were so much stronger and energetic before fibro and they feel that they have to be the provider and the strong one in the relation.  They are suppose to take care of us, not the other way around, and they can be stubborn.  So try to be patient.  He will, if he hasn't already, go through many different things such as denial, guilt, anger, and grieving.  There are more that I can't remember.  But these stages have to be gone through to get past everything else.  Depression is one too. 

I hope that in some small way that I have helped you a little.   Don't be afraid to ask questions, join in on other threads.  There are a couple of gentlemen on the forum who can help you too, I am sure.

Best wishes to you.

Hugs, Karen 

Posted 2/6/2009 4:34 AM (GMT 0)
Oh wow, I think it's great that you've taken that first step and I bet it was hard
in trying to understand Fibro! Get him a good moist heating pad for those bad days,
Don't poke at him as poking can hurt, but use a rather soft gentle touch..
tell him on days that are really bad put a red dot on the calander so you know when to
avoid asking him about, (sex) as on bad days he'll probably not wanna be near you and by no fault of
his own, maybe think about getting a better mattress if it's in your means (one of those beds has
sleep numbers)
These are just some suggestions, hope they can help!
Lots of courage to you and woohoo for taking this first step!
Posted 2/6/2009 4:38 AM (GMT 0)
Hi Amber~

And welcome to our family! Your love is the one who has fibro but unfortunately you are suffering from it too...and it doesn't have to be that way. He has a lot of anger inside and all that is going to do is make the pain worse. It also sounds like there may be some clinical depression going on. Either way he needs to talk to his doctor and soon!

People with fibromyalgia most often have a shortage of serotonin...the feel good hormone. If the deficiency is severe then depression can result. One of the first things doctors often try is a mild dose of an antidepressant. And if he is suffering from clinical depression then they might have him on a 'regular' dose. If you haven't worked with this type of medication before you will need to learn patience. I had to try 5 different ones before I found something that helped and I could tolerate. They all act differently on different people. Plus the seem to work for maybe 2-3 years and then you often need to change. I take a very tiny dose of Effexor but without it there is such a huge negative difference . No thanks!

One other thing I would suggest is counseling. The anger and hopelessness he is feeling isn't necessary. As you have seen on this board and probably other places on the internet...you CAN have a good life with fibro if you CHOOSE to...but you are the one who has to make that choice. If you decide you will be miserable then that's exactly what you will be. If you choose a happy and fulfilling life then that can be your too. I'm not saying it will be easy but it can be done. Look all over these posts and see the happy people who are living with fibromyalgia. We are proof you can enjoy life in spite of the pain. I refuse to let this destroy my life!

Please invite him to join us too. We do have some men on the board...and we LOVE those guys...lol... so he will have others to associate with.

Keep in touch and always feel free to email if you'd like. My address is under my name over there <--- just click on the lit envelope.

Chutzie
Posted 2/6/2009 5:53 AM (GMT 0)
Hey Amber,

I applaud your desire to help him! I think the biggest thing to remember with fibro is it cannot be fixed, only managed.

Understand that there will be times when you have planned things that you might have to cancel or postpone. My husband is finally getting this one: he asked me the other night if I would like to make "tentative" plans for Saturday evening!

Encourage him to deal with his anger; you may find that your tolerance of his bad moods will wane with the passage of time.

I wish you the best.
Posted 2/6/2009 7:21 AM (GMT 0)
Hi Amber -

The counseling idea sounds like a good one.  Seven years is a long time to be angry.  I think that you have really deep feelings for him.  I hope this doesn't sound harsh, but are you trying to "rescue" him?  It's a question that's worth discussing with a counselor.  I've seen similar things turn into a co-dependency with people playing out the "rescuer" and "victim" roles.  Arrggh ... I'll have to keep this brief cause I've had a Herx going on for three days and I hope all of this even makes sense.

I won't go into the details of my handicapped boy and how - starting with the very best of intentions - it turned into a co-dependency with my former spouse trying to do so much for him.  But both my boy and my former spouse are in the same emotional place they were 20 years ago.  It's best to try and understand these things up front.

And welcome to this board.  People here have adopted me (I'm a Lyme person) and I think very highly of the people I've met here.

Posted 2/6/2009 2:10 PM (GMT 0)

Hi Amber,

I agree with the advice you have been given so far.  I just want to welcome you.  You're a special person for doing research on FM so you can understand your sweetie's medical issues.  A lot of us get angry at this thing called fibromyalgia.  There's times when I "feel sorry for myself" but then I remind myself it could be way worse.. it could be cancer or MS or Lupus.  At least with FMS I have good days, too.

My husband is incredibly supportive of me.  When we met I was just coming off of my last bout with Lyme Disease.  So he has always been aware that, at times, I have certain limitations.  I know there are times when he wants to do something or go somewhere and I just can't.  He never complains or makes me feel inadequate in anyway.  I know at times he's disappointed  but somehow we work through it.  Fortunately he enjoys taking little naps on the weekends or when he takes time off.  (He has sleep apnea.. on a CPAP so he understands fatigue). 

I wish you all the best in your relationship and hope you find the answers you need.

Be well and all the best!

 

Posted 2/6/2009 3:08 PM (GMT 0)

Hello to all of you, and a very BIG THANK YOU!!! First I would like to say, no I am not trying to rescue him. My intentions is to walk through this life with him and show him love and happiness. We dated for quite sometime before I was told about the Fibro. I fell in love with him for who he is. I cannot and will not walk away from him because of this illness! He has become my best friend and we share many good times. I understand that there are times when he needs his space and I give it to him. Thank you all for the suggestion about the massage and the need for gentle touch. Yes I have seen the need for tenative plans and his need to cancel and I handle it to the best of my abilities, I know it is due to the illness and not personal. He is such a very special man! I no there is no cure, I just want to do whatever necessary to help ease his pain and let him know someone cares for him and will stick by his side! I have been reading your posts on this thread and I see there is light at the end of the tunnel and I see there is hope for a quality life. I continue my research with hope. Thank you again for welcoming me, you all have inspired me.

Amber

Posted 2/6/2009 3:17 PM (GMT 0)
Amber,

We men are a different animal...... I have some thoughts, but can not take the time right now to properly express myself. When i get back this afternoon I will try and reply in some length with anyything I think can help you. Please check back later, I applaud you for wanting to understand his dilemna and help him. Thank you for doing that!
Posted 2/6/2009 7:18 PM (GMT 0)
Amber,

FM is difficult for us all. This man finds it frustrating because there is not much a person can do to fix it. His pride will not let him slow down and not do the things he enjoys or has been doing. I should be able to find a way to FIX this, but I can not. There is no cure.
My wife is awesome and is one of the Non-Fibros that has a good understanding of what is happening. She gives me my space during flares, we men must retreat into our cave; She does not pressure me about trivial things, she realizes the effort it takes to just get out of bed sometimes; She realizes the negative effect outside influences have on my pain level, a cold or cough makes my chest and ribs pound;

Continue to be patient with your man, continue to treat him like he is "THE MAN" because we need to feel that way.
Try not to inquire too frequently about his pain levels or mental fog.....we men try and ignore it and that is hard to do if you are reminded of it often.

I, like many men, do not like counseling.....my wife has suggested it. We feel lilke we can fix ourselves. Try not to push the issue or you will push him away from it. Set aside time for you and him to simply talk about his FM. Let him lead the conversation because it is not easy for a man to talk about his weaknesses.

make sure he gets as much quality sleep as possible at night; help him eat healthy, our diet can effect our level of discomfort; let him know that he can talk about "whatever, Whenever".
NEVER personalize his FM. He does not mean for it to affect you and the relationship. He loves you.
Posted 2/6/2009 7:22 PM (GMT 0)
Amber, welcome!  You have gotten excellent responses on this thread.  The biggest thing you can do is try to understand this illness.  It can be a mind boggler!

 

We have a thread called Fibro 101...the second thread on the forum.  There are links to good information about fibromyalgia there.  There is a link to some gentle stretching exercises that might help your boyfriend, too.  You BOTH could get a lot out of that thread and all the links that it holds.

 

Moist heat is good for fibromyalgia and also many members have a Bed Buddy.  You can get them at Walgreen's and other places.  But, you can make one by using a tube sock, fill it 2/3's full of raw long grain rice, and tie a knot on the end.  This can be put in the microwave and it gives off moist heat due to the moisture in the rice!

 

It's important that your boyfriend stay as active as possible.  The stretching exercises do help and walking is good, too.  The more you move the more flexible you are.  If you sit or lay too much, you will be stiff as a board with fibromyalgia.

 

The counseling would be good if he is holding a lot of anger inside.  That causes stress and stress causes pain.  The pain causes more anger and stress...on and on and on.  I hope he can rid himself of some of that anger.  I do think fibromyalgia is especially difficult for men to grasp. They are used to being the strong ones, able to take on the world!  But, fibromyalgia can bring you to your knees. 

 

It would be wonderful if you could get your boyfriend to come on the forum and read and ask questions.  We do have several men on the board and they are all quite helpful, too.  See what you can do.

 

I hope this helps you.

 

Sherrine

Posted 2/6/2009 7:36 PM (GMT 0)
I don't mean to over-react about the codependency thing.  It's just that I've seen it first hand and I feel it is an emotionally disabling condition.  So easy to start and so hard to stop.

A suggestion that might help.  It's easy to focus in on how bad we feel and what we can't do.  Maybe he can identify those those times when he is feeling a little better.  Be spontaneous then.  Take advantage of them to do whatever helps your relationship.  Might be going out for lunch, maybe a little shopping you've wanted to do, movie ... just whatever.  It does a lot to offset those times when we wanted to do something but just couldn't.

Posted 2/6/2009 7:48 PM (GMT 0)
Thank you all for reaching out to help me! Jokat, what you have said hits the nail on the head. There are many times I want to talk to him about how he is feeling, but I try not to push it I wait for him to bring it up. I send him emails and texts throughout the day to lift his spirits and let him know I am there. As I have said I love him and want the best for him! Sherrine I also thank you from the depths of my heart! My guy is very active, sometimes I wonder if he pushes too much, at these times I am very careful and give him space. He is an advid hunter and works fulltime. I just really worry that he feels like he would be dumping on me, which I don't feel is the case, if we are to share this life together, should I not be his help mate, best friend, and biggest ally? Rich, I also thank you for your concern and advice. Thank you all for your time!

Amber
Posted 2/7/2009 5:25 PM (GMT 0)
Hi Amber and welcome. Jokat sure did hit it on the head when he said, "men are a different animal". devil I think he and Rich will be a big help to you in seeing fibro from a man's point of view.

 

One thing I have learned is those that love us are never going to totally understand how we feel. I would have never understood fibro before I got it. We have some severe and strange symptoms that is hard for us to understand. Last night I kept getting the feeling on the inside of my knee like someone was putting a lit cigarette on it, just one little spot, how weird is that. I'm never surprised by anything my body feels anymore.

 

My husband doesn't have to ask me how I am feeling, if I'm up and busy he knows I'm having a good day, if I'm on the couch with my heating pad he knows I'm having a bad day. I didn't realize how my movements spoke to him til one day I was rubbing my forehead and he asked, "your head hurting again"??? Get in tune with his actions and a lot of time you don't even have to say a word to speak to each other.

 

luv and hugs

Marlee

Posted 2/7/2009 10:15 PM (GMT 0)
Marlee,

Thank you so uch for your reply, I keep checking back on this thread to read all the new topics and posts, from all of you. I will have to say I feel inspired by a lot of you on here! I understand what you say about watching him and his movements. I know he has the good days and bad, and I have begun to know when he needs me close or he needs his space. He has begun to open up more and more and for that I am thankful! I cannot begin to imagine all of the things you all must deal with everyday! I keep praying and believing that one day there will be more help available for this. I will keep all of you in my prayers and thoughts, thank you all!!!

Amber
Posted 2/8/2009 5:29 AM (GMT 0)
Amber, I want to welcome you to the forum.  It is a good place, full of good & loving people.  I am so impressed with you getting right in there & finding out all you can about Fibro.  When I was first dx'd & no one seemed to get it, that I was really sick, how I used to wish someone would say "I looked it up to see what Fibromyalgia is & how it feels for you".  I used to wonder why no one did.  My brother came one day with a bunch of printouts & said "wow, I am so sorry you have this, I have been reading up on it".  It made me so happy, someone cared enough to check it out.  You have gotten some wonderful answers & things to try.  I have nothing to add except to keep on as you are going, but also take some time to take care of yourself, as well. 

Hugs, Denise

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