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llchiefpa posted:
My wife was diagnosed with fibromyalgia about two years ago. We've been going through a lot of adjustments during that two years and her doctors have been great. However, there doesn't seem to be much improvement and it has greatly impacted our life style. Just curious how other spouses are managing this life change and dealing with the loss of things you both previously enjoyed doing together. I don't want this to sound like I'm complaining, but everything I read is focused on the individual with the fibromyalgia but very little on the changes that thier partner must also cope with.
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dollbug responded:
Hello and welcome. MiMi in NC...I wanted to reply to you to let you know that I am sure someone will perhaps answer your question. This group is a support group for FM and I am not really sure that there are spouses who actually join us often. But it doesn't really matter. It is good to know that you are interested in finding out how others cope with this mean and ugly illness. I do want to tell you that it does make a lot of difference when a person has any sort of chronic illness to deal with. I know that I am no longer the same person that I use to be. I am sure that this is as hard on our spouses as it is on us FMers....except we are the ones who actually *feel and must deal with the physical pain of the wrath of the dragon, aka FM.

Please understand it is a challenge for most of us each and every day. It is sad that we can no longer plan things....not really knowing from one day to the next how we will feel....sometimes, it is actually from hour to hour.

I am sure it is hard for our mates to understand this illness....as we don't understand it ourselves for the most part. I can assure you though that IF there was a way we could make it better, we would certainly do whatever it takes for this to take place.

I do hope you will encourage your spouse to join our support group. It is good when we can talk to people who know exactly how we feel.

I do hope you will continue to keep learning about FM....and try to talk to your spouse about how you both can learn to make the best of your life with this.

Good luck and take care.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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bette_kaffitz responded:
Illchiefpa,

You married a vibrant woman who loves you with her whole heart. You were always the couple who did everything together. From sports to parenting (or your views thereon--if you're not parents yet) to the major issues of the day, you and your spouse were always involved--always together--and always totally in tune with each other.

But for the past few years, it is as if someone came into your lives and stole away your lifemate. Now you are paired with this completely different woman. She hurts all the time. She is sad a lot. She doesn't want to go out and do the things you always did together.

What's worse, there are times when you cannot even touch her. You go to wrap your arms around her to tell her how much you love her--how much you need her. She flinches and holds back a scream. You wanted to comfort her. What you did was to set off another reign of pain. It all went wrong. How?

Please try to remember that you are not the only one grieving for the loss of the fun-loving woman you married. Your dear wife is just as confused and just as empty. She longs for the old closeness, too. But she is now in a prison. That prison is her own body. The once familiar self is now a nightmare of ways she can no longer sit or stand. Sleep, that voluptuous cloud of comfort and renewal--is a much sought, but rarely found whisp.

Try to tell your wife how much she means to you and how much you need her. Ask if you can--ever so gently--wrap her in your arms. Perhaps she could wrap her arms--even more gently and carefully--around you.

You have to learn each others' bodies anew. Think of it as a second honeymoon. Not every beginning will end in joyous, healing sexual experience. Often as not, you will find that all the old signals no longer whisper "I love when you do that, please do it again." but will now scream, "Ow. ow, ow, we were doing so well when you touched me there, and now I'm in agony. Let me just roll into a ball and practice my breathing techniques."

Or--wonder of wonders--there will be a day when you are gently enjoying each other's closeness, one of those rare, remaining days when it feels like the old times. When suddenly, she will just "wooosh" and every ounce of energy will drain from her body. She loved what was happening, but then somhow the energy switch for her body was just flipped off.

If you think you are confused, hurt, and bewildered by the state of affairs, you have no idea of how devastating it is for your wife. Please try to bear with her. Her whole world has turned itself on end. Give her a chance to adopt to this new normal. (Imagine she's learning to breathe with these new gills someone left when they stole her lungs.)

And don't you every think that she doesn't need you now. She needs you more than ever, it's just that right now you're too busy with your SCUBA lessons to have time for anything else.
She needs your arms around her. Your arms around her hurt. She needs to know you love her. But she's too exhausted to show that love. She wants your old life. Your old life is a million miles away.

Please practice patience. Your wife loves you. She needs you more than ever. You just both have to learn when, how, how much, when not to, and all the new rule of love when fibro is your partner too.

Bette Kaffitz

P.S. My husband and I have been living with fibro since 1972. It's still a challange. It's still OUR LOVE out there.
 
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llchiefpa replied to dollbug's response:
MiMi, thanks for your insight. I know that my wife doesn't always want to tell me how bad she is feeling. I've always wanted to take care of her and protect her but find that I can do very little to ease her pain. I do whatever I can, going to each doctor appointment and trying to learn everything I can about her condition, but many days I feel so helpless. It sucks seeing the person you love hurting and be unable to stop it.
 
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llchiefpa replied to bette_kaffitz's response:
Bette, I appreciate your advice and hope that my wife and I can reach a similar level of acceptance. Your comments truly help me put into perspective what my wife is feeling on a daily basis. We keep waiting for the "good days" but unfortunately, the cold this winter has provided virtually no relief for her, not even briefly. Thanks again.

Bill
 
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francodm responded:
Bill,

If your wife has been given Fibro as her primary diagnosis and suffering for that long, then please take a look at Tension Myositis Syndrome (TMS) - Fibro is believed to be a strong version of TMS, for which many, many people have found lasting relief. Check out the following clip and see if this seems to apply to you and your wife's situation:

youtube.com/watch?v=vsR4wydiIBI&feature=youtube_gdata_player

The theory is that TMS/Fibro is a condition whereby the mind is causing real pain in the body via a reduction of blood and oxygen in the often cited trigger areas. By understanding and breaking the mind/body connection, you can eliminate the pain. You and your wife can work on this together.

Take care, Franco
 
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rosielou responded:
Hi Chief,

It's a pretty rough day so if this doesn't make sense, please ask questions and I'll get back w better answers.

One of the unpleasant things about having FM is the feeling that I'm drawing too much of the marriage energy and not contributing my fair share. I don't tell my husband about my day to day pain, it's boring and I don't like it being such a constant topic. He's a good man and probably wouldn't agree with that, but I used to be so strong and smart and capable.

This link goes to an article that I've sent to a few friends and relatives. ----> http://www.fmcpaware.org/how-to-be-a-better-friend-spouse-or-relative-to-someone-with-fm



I hope this helps some. Rose
 
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llchiefpa replied to francodm's response:
Franco,

Very interesting article. I will show it to my wife. I know from my past military training that you can deal with many adversities (pain, cold) by convincing your mind that it isn't so bad. Thank you for your input.

Bill
 
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llchiefpa replied to rosielou's response:
Rose,

You're making perfect sense. I think you're very similar to my wife as I'm sure she feels I'm tired of hearing about her pain. However, knowing the specifics daily actually helps me stay engaged with what she is dealing with daily.

I feel anyone dealing with fm is incredibly strong and I'm sure you're still pretty smart too. Thanks for your comments. Take care.

Bill
 
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francodm replied to llchiefpa's response:
Bill,

The key to the TMS diagnosis is also identifying if the personality type fits your wife. Have a look at the following:

http://tmswiki.org/ppd/TMS_Personality_Traits

and if she fits the Perfectionist or Goodist model, then the diagnosis really fits and a recovery can be achieved.

In presenting this info to your wife, just be careful to remind her that the mind being the ultimate source of her pain does not mean that she is faking it or making it up (this is what many people commonly mistakenly believe and why they reject the diagnosis.) Rather, the pain and muscle spasm being cause by TMS is very real. Once she can break that link between mind/body (and you can be a huge source of help by talking out some of the common themes with her during the journaling process), then the pain should steadily dissipate, although the pace varies from case to case.

Franco
 
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Anon_57995 replied to francodm's response:
Pretty comprehensive home page for the TMS organization. I like that the treatments are not drugs and that you can get better.





http://www.tensionmyositissyndrome.org
 
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uschi66 responded:
Hi I was diagnosed with fibro done years ago. I would like to advise that fibromyalgia is not 'in your head' as another post suggests. There's nothing worse than saying to a fibro sufferer 'it's all in your head' and make them feel responsible for their illness. I don't know enough about TMS, but I have read a lot of information about fibro (co?ncidentally I haven't come across TMS), and I don't believe that fibro is the result of a certain personality profile. Here in Europe Fibro is treated by neurologists and rheumatologists. Often a combined treatment of medication and physiotherapy is offered. If fibro was 'in the patient's head', patients would probably be seen by psychologists or counsellors. Fibro is a physical illness, which can lead to depression, due to the life-changing impact it can have. It is not a psychological disorder.
 
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missist replied to uschi66's response:
agree with uschi66 there are many different kinds of personalities in fibro. Anyone can get it. I've read a book about someone's theory on it being a personality that is prone to this-- I don't see it in my experience as I have friends who are so very different and have this common illness.

Some people do better than others, some have remissions, most manage life better as time goes on I think. Some of us have or develop co-morbidities--so you have more than one chronic issue--which actually in time happens to a lot of us.

In my mind that makes it harder a lot harder--you need more drugs, they have more side effects, your world just necessarily shrinks.

I am glad my husband can afford to support me as I contribute little $, but I do many things to try to live in our means and do things that contribute in our home.

One thing I want to say about this whole thread--I know many of us would be THRILLED to see our spouses really look to find out how to be more supportive, etc..

Kudos to you. Please don't put her through some kind of personality related thing-- better to help her find the correct medical and lifestyle changes to help her be what she is able to be. Our outlook on life can make us happier in spite of our physical situation--but it cannot cure us.
I thought I was cured at one point, slowly things went back down hill and in about 5 years I had fibro again--along with other problems.

I think this is going to have more and more neurological research and we may have more answers soon, its exciting to me that after 30 years suddenly this is actually being looked at seriously.
Mary
 
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bette_kaffitz replied to llchiefpa's response:
Bill,

Hi, my husband is a Bill, too.

You mentioned this cold winter. I wonder if your wife just needs to have the house a degree or so warmer. I know my fibro is much worse when our woodstove just doesn't do the job on cold days. It doesn't take much, just a degree or so below my comfort zone, and I'm miserable.


See if turning the heat up just one degree helps. If not, try two degrees. I know I'm comfortable from 70 to 72 and just in agony at 68 (or even 69 some days).


Damp, humid days have always been a problem for me. Lately, this has been much worse, too. That extra degree of heat seems to take both the chill and the dampness out.


I realize that we are all different, but it seems we all get relief from our heating pads and warm baths or showers. I bet we all feel worse when it's cold--especially in the house.


Bette


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