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Worried Husband

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08/2016
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New Jersey
Hi I'm not sure how to start but I need to find out answers to questions I have about fibromyalgia. Here is some backround information about my wife and I. We are both in in our early 30s and we are highschool sweethearts. We have been together for 14 years, married for 8 of the 14 (no breaks or split ups). She has ALOT of medical issues and i have stood by her side doing whatever she needed/asked. There was even a point where she broke down and told me that she thinks I should walk away from our relationship. She believes that I deserve better then what she has to offer and I shouldn't have to deal with all of her medical issues. But I'm an Aries so I'm stubborn and I'm not willing to give up on her that easily. I love my wife whole hearted she is a great woman, wife, mother, and person. I'm not about to lose someone like her just because life has turned left when it should have gone right. Due to fertility issues we adopted our daughter 2 years ago. Her history of medical issue was not much of an impact on her day to day life. But there were times when she needed to rest. The intamate part of our relationship was great. We were very active with trips, camping, and hiking. The first year raising our daughter was great, she is a sassy little girl that can always make you smile. Everything was going good until about a year ago, my wife was diagnosed with lymes disease. After 2 rounds of antibiotics she still was tired and in pain. After talking to doctors and alot of testing they diagnosed her with "post lymes syndrome fibromyalgia". I've have tired to help out with what ever she needs but I work on average 50 to 65 hours a week so I am exhausted when I I get home but when I get home I am the one to always make dinner, I do what I can to clean up around the house, once I'm home watching my daughter is basically 100% my responsibility, my wife goes to lay down in bed once I'm home and stays there for the rest of the evening most of the time. I don't get to sleep in in the mornings any more. I work m-f some times sat and sun also but if I'm not working the weekend I don't get to sleep in because I have to wake up when my daughter wakes up whIle my wife continues to rest. I can't remember the last time I was able to get out of bed on my own accord. The last year I have always HAD to wake up for one reason or another. The intamate part of our relationship has basically left the building. To the point that I basically can't even talk to her about it never mind making an advance on her. Im trying to pick up the slack to try and help her and make her comfortable but I can't help but feel frustrated, confused, baffled, upset, mad, worried, tired, stressed out and a whole host of other emotions. She keeps saying I don't understand what she is going through and I dont, I have been in pain before but never constant pain. I don't know how to handle this situation, and afraid that the life we had before fibro and lymes may never return. Does it ever get better??? Due to medications she is on she is reluctant to try to take meds to try and manage the fibro. The doctors say that she can take them just she would need to be monitored more closely for a while in the begining. But she is more reluctant to take them because of the side effects. She is already depressed stressed and has tons of anxiety. Idk if this was cause by the fibro and lymes but she had all of those issue long before fibro and lymes. We have gotten into arguments about her not having energy to clean up our house but she keeps her best friends house alot cleaner then ours. Her best friend has fibro also and my wife (prefibro) wanted to help her when she was in pain so she cleans up her place. Idk what to do. Am I a complete selfish ***hole for asking/arguing with her about doing more and trying to rekindle the intamate part of our relationship instead of just letting her lay in bed? Or is this just how it is going to be for now on and I just have to get used to it? I just need to know where we stand. Like I said earlier, I'm in this relationship for the long haul. I'm not going anywhere just Idk where this road is taking us. I don't know how touchy of a topic this is so if I offended anybody please accept my apologies that was not my intention. I just don't know if I'm in the right or wrong with everything going on. Do I push for her to do more or do I just suck it up and do it myself. I want her to be comfortable and if I could switch situations with her I would do it in a heart beat so that she wouldn't have to go through what she is going through. I just don't know what else I can do to help or what to do for myself to not be so mad, angry, and/or frustrated. Any help is greatly aprreciate and please tell me if I'm in the wrong for how I'm feeling/arguing with my wife about doing more. Sorry that this is so long I've been needing to vent for a while now.
Worried Husband
 
Hey there,

It's good to vent, first of all. Don't feel bad or guilty about that.

I don't have lyme, but I know people that do, and from what I've heard it's very debilitating. At least for a good while. Now, I have a neighbor whose mother got it when she was like 60yo. Very rough on her. But she found a good GP that treated her with antibiotics but also with alternative therapies. It's been 5 years and she is back to driving and all her other activities. So that's something to be addressed, her medical care, diet, vitamins, etc. Some things will be trial and error, but can she research things online? Join a support group for people with lyme so they can see what they have done and what works? I originally thought I had a Bartonella infection, and had started taking sulforaphane and mustard seed as suggested by many people (both are very inexpensive supplements).

Also, I know it's tough being a caregiver and living your life as well. I did it with elderly parents and worked at the same time. Kudos to you for taking care of it all! But, everyone needs a break. Do you have family/friends that can help out at all? Maybe bring in a housekeeper for a few hours a week just for the cleaning?

I know its overwhelming, but try not to look too far down the road, because that makes it worse on you. There's an expression: how do you eat an elephant? Bit by bit.
 
This is a tough one...you are not bad or any of the things you say but as a sufferer of fibro (without lymes) your wife needs all the support understanding and help you can give...and i realize you are giving a lot already.

I can't measure your wifes' pain, fatigue or other symptoms but fibro pain and fatigue is pretty indescribable. There is really no way to describe the severity or changeability of the pain hour by hour and how psychologically draining it is to keep fighting pain 24/7.

I think you have to try and accept both your lives have changed forever and think about long term ways of reducing the load.

Can you keep your hours at work to just week days and maybe get some help with child care from friend or relatives. Also could you get some support with house chores either from a friend, family or pay someone once a week to come in and do a thorough clean.

Maybe your daughter could go for the odd sleep over with grandparents or friends so that you could have a well deserved lay in too.

Rather then keep muddling along trying to cope make these changes because if your wife could do it she would. If she pushes herself beyond her capabilities she will get sicker.

Stress will also make her symptoms worse and she will already know you are struggling and no doubt feel very worried about the future and how you will all cope.

I could go on forever with advice but my hands and arms hurt to much to type any more.

I will do more in another post later.

Welcome stay on here and vent and ask as much as you want.
 
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A great video to watch on you tube is Voices of Fibromyalgia by Haullie Volker. It doesn't play on android devises only windows laptop etc.

Please try and avoid arguements and blame. It is so painful both physically and mentally having fibro to be blamed on top for what you cant do but inside are so desperate to be able to do is so hurtful especially from your husband.

Instead try and love and support each other and find some solutions to help you both live within your wifes new limits.

She could improve but there is no quick fix but one things for sure stress in any form and over activity will make it much worse.

Give her time to adjust and maybe research meds yourself....but the side affects are not nice and we are like guinee pigs all the time and i totally understand her reluctance as no medication works for everyone and nothing will take the pain away completely.

You are not wrong you are just under immense pressure and sound like a great husband.

Coming here asking for help and advice shows great courage and love.
 
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Congratulations Worried Husband. What you have done is the ultimate test of friendship and dedication. Your empathetic and sympathetic nature warrants you to be a hero. Many have wavered in the face of difficulty and deserted their loved ones. In the fullness of time, your good and heroic actions shall come to bear dividends. Stress is a killer and is one of the factors that cause fibro and then worsens it. To leave your spouse in time of need would have resulted in such. I would recommend that you wean her off medications and adjust to lifestyle changes to manage the disease. You should also assist her in exercise and deep massage. As you increase your lifestyle changes and alternative therapies, carefully wean her off medications.
 
Worried Husband...remnant doesn't have fibro please don't listen to his advice about weaning off medications that may be helping her and i for one can not tolerate massage at all with out big increase in pain let alone a deep massage.

Exercise should be very gentle and within your wife's limits. Some of us can do quite a lot some very little.

I have had fibro since 2007 and have been through many ups and downs along the way.
 
Awh, hubby your not alone, I think almost every spouse of a chronically ill person has felt what your feeling. You are very wise to solicit the advise of the actual sufferes. I've been on both sides of the coin. (My first husband passed from brain tumors). It's not easy to be on either side.
Yes, you have the right to be mad. But not at her. She never asked to be sick, she loves you enough to set you free when she needed you the most (I'm sure this was out of love) yes, you have a right to feel angry, hurt and robbed. Life isn't always fair, sometimes we can't believe our good luck and other times we can't believe the bad. God always balances the books to our favor though.
All the things you do, you would do 98% of it if you where a single parent. Just having a child changed a lot for you, weather your wife where sick or not. freedom and sleep are a luxury when have kids. But you do need to find "me" time and couples time. As your daughter is a part of you not all of you. It's hard.
Your wife helping clean her friends house...I'm not sure why she is doing this still. It has some payoff for her most likely psychological but I can't be sure nor could I do it. It may be the one contribution that makes her still feel a little useful. Plus there is no frustration of waking up the next morning only to c all your efforts back to point A again. Either way I'm sure she is greatful you've enabled her to fulfill that need.
Intamacy...chronic pain can prohibit it physically. Try to imagine getting kicked by a horse in the balls, now imagine trying to function in that pain! Now imagine day after day.
Will it always be like this? Doubtful. I don't know much about Lymes but what I do know is it, just like Fibromyalgia and CFS, can take some trial and error to get the best treatment for each person. Be supportive of her choices. Do not ever make her feel bad for taking/choosing what meds. She is taking or not taking. It is her body. Remnant might meen well but that's not even your right let alone a good idea. You can help her to wean off of something if that's what she wants, but don't try to force her into taking only what you think she needs. She has lost enough freedom.

Which brings me to my next point, it's not just the pain and fatigue, this d*** disease robs you of everything, friends, family, freedom, jobs, money, hopes, dreams and sometimes your sanity! I appreciate you trying to understand but I don't know that anyone can understand. I was a mild sufferer for years and until it knocked me on my a** I couldn't fully understand.

Fighting with her or guilting her will get you no place. In fact it will make things worse and slow her progress. That hurts you both in the long run.
Keep looking for answers to help get her health back.
Kudos to you for being a great husband and father. So often when things get hard people break their word. They walk away. That is not love. You my friend are not just a man of your word, you have the gift of knowing how to love more then yourself.
 
I suggest trying to cut your job hours down and and making other small changes. Fibro can take alot out on an individual but the most important to cut back on any stress. I have had my share of drama stress to the point I just walk away from alot of people. you love her and I'm sure she loves you. I used to take meds for fibro the first year or two when first diagnosed but since then have been off them. I just manage my life better and take care of myself.
 
Hi there Worried Husband,
It shows how much you care about your wife and daughter that you've come here for advice. Fibromyalgia is hard to understand even when you are the one experiencing it. The symptoms involve much more than pain. Sureimsore, willow and Eyesup have all given you some good input.

I just want to add that it's best to approach this condition from multiple angles. That includes medications, suppliments, stress reduction, good sleep, meditation, exercise, rest, pacing, good nutrition, ergonomics and so forth. Sometimes I think about it like someone cut one of the legs off my chair. Now I have to be more careful to keep everything balanced just so or my chair will tip over. If you and your wife figure out how to keep things balanced for her things may get somewhat better, but like most things in life nothing is for sure.

Pain is pretty wierd. Most people think our nerves are like little electric wires that run straight to the brain, but that's not how it works. The nerves go to the spinal column and then neurotransmitters in the spinal fluid carry the signals to the brain. The lower brain can send signals back down to the spinal column via neurotransmitters to dampen and filter the pain signals.

If you've ever stubbed your toe, you've felt this system at work - it hurts really bad at first, but then the pain fades away to nothing. In a person with fibromyalgia that system isn't working right - the neurotransmitters are all out of balance, so instead of controlling pain the spinal column amplifies pain

Sorry to geek out on you, it helps me to understand what little the researchers have figured out about fibromyalgia. I'm hoping it will help you too

It is definitely tough to care for your wife and a young child and work a demanding job. Doing things like cooking ahead on the weekend can make dinners easier to manage. There are whole cookbooks devoted to that kind of thing.
 
Your a great husband,a lot of us don't get half the support you seem to be giving.
I think you need to sit down and talk to your wife about your feelings. How tired you are.how u miss a lay in.or a meal when u come home. Your not a robot,and u could easy make yourself very ill to.
I have four children.3teens and a 3 year old, taking meds helps me be a mum. Tramadol and gabbpentin have saved my live.
I'm not saying your wife isn't suffering badly but she should try to help herself and take meds even if it s short while to see how she gets on.if they don't help at least she tired.
It's all very well saying she needs support 24/7 but this affects the whole family.
 
I'm very sorry for what you are going through. I hope that my answer does not offend. If it does, then please just ignore me. This is my perspective, but it may not be yours.

When someone gets fibro, they go through the stages of grieving, and their family and friends do that as well. The stages are denial, bargaining, anger, grief and acceptance. You described several of those stages in your post. You and your wife will cycle back and forth through these stages for a while before you get through to acceptance. Some people are very stubborn and they just can't get to acceptance, but hopefully you and your wife will get through it.

In addition to being a caregiver for a sick spouse, your sick spouse and you are caregivers to a child. Your wife's contribution is very limited. You are not accepting that. That is denial. You are arguing with her to try to make her do more. That's bargaining. And, the frustration can turn to anger -- stage 3. It is what it is. You eventually have to deal with the situation as it is, when you realize that denying it and arguing with it isn't changing it. You have a kid to care for, and your wife's contribution is not enough to get the job done, and you are hanging by the fingernails, so what changes can you make, in order to make it manageable, as painful as those changes may need to be? I resisted for quite awhile. But, my life got better after I made those changes. I had to take my child out of public school, move her to virtual school, give up on the doctors and start managing our situation with lifestyle changes and supplements (the doctors and schools were adding stress and were not providing any improvements to our situation), give up some of my plans and dreams and ambitions and come up with new ones. But, it was like a load lifting off all of us when we made those changes. We were all less stressed and that translated into feeling happier and being more functional. It's possible that, once you deal with the situation in front of you, and some of the stress is off the three of you, that it may help to improve the strains on your relationships.

You have become a caregiver. You might want to google caregiving and read up on it. The problems you describe are common problems for caregivers. One of the important aspects of caregiving is to take care of YOURSELF. You are in this for the long haul. It's a marathon, not a sprint. So, you need good nutrition, good rest, balance in your life (work, caregiving, rest, and "me time"), etc. You can't just cling by your fingernails forever. You have to get some solid ground under your feet, and that means restructuring your life. Once you have re-sized your life to what is manageable with your more limited resources, sometimes removing that weight from a person with fibro can help them be a bit more functional. Not always, but sometimes. So, I highly recommend that you google "caregiver". They may have some helpful resources for you.

I wish you and your wife the best. I hope you can work through this.
 
A great video to watch on you tube is Voices of Fibromyalgia by Haullie Volker. It doesn't play on android devises only windows laptop etc.

Please try and avoid arguements and blame. It is so painful both physically and mentally having fibro to be blamed on top for what you cant do but inside are so desperate to be able to do is so hurtful especially from your husband.

Instead try and love and support each other and find some solutions to help you both live within your wifes new limits.

She could improve but there is no quick fix but one things for sure stress in any form and over activity will make it much worse.

Give her time to adjust and maybe research meds yourself....but the side affects are not nice and we are like guinee pigs all the time and i totally understand her reluctance as no medication works for everyone and nothing will take the pain away completely.

You are not wrong you are just under immense pressure and sound like a great husband.

Coming here asking for help and advice shows great courage and love.


Hey there man, I feel what you're passing through and I know it is not that easy, however I have watched that video and it is pretty motivational, specially for those who have somehow lost hope and all that kind of stuff, give it a shot and maybe you are going to feel much better after it, good luck man.
 
Hi there, I don't mean to be rude or anything... but can you please use paragraphs, WorriedHusband? It's very hard to read a wall of text, and some of us have sight issues, if you use paragraphs you make it easier for everyone to read your posts. Otherwise it's very very hard and straining for our eyes.

As for the ''does it ever get better?'', it depends on the person and if the person finds the right doctor. It all depends on that, her reaction to medications and such, because we are all different and react differently to the same medication, that is why some meds work treat for others (for treating pain) and for others it doesn't. Best of luck!
 
U wife is not just in pain, it is so hard to fully explain what this does to a person. U feel like u are deep under water and being pressed in on from every inch of u. Then u are so tired and weak that even normal movement takes an incredible amount t of effort. If her friend also has fibro and no husband to help, I can understand why she would help her. She does require much more rest than a normal person to even be able to think much less move. I don't like most meds because they give me some crazy side effect. I have extremely bad reactions to anti-depressants. But I have found that tramadol works, the only side affect is constipation which can be easily dealt with by eating fruit daily. I also started taking gabapenton and now I have much more functionality on a daily basis! She is probably depressed but the only cure for that is to feel better. If she had more time feeling better and being able to pitch in, she would be like a new person, probably more like the person u remember. Please beg, sweetly, for her to try some meds. She has to be tired of feeling that way and life passing her by. The only other med I take is a muscle relaxer at bedtime, it helps my sleep more soundly and my pain is less the next morning. I have been taking these for almost a decade with no real side effects.
 
Hey everyone. I know it's been a while but I've been reading your advice and stuff on Web sites. But also we decided to move about a month ago. Idk why or how but the move made my wife do more during the day then she has in the last year. At the end of the day I could see she was done but it seems like she had kept going even once we were done with the majority of the unpacking. I think the new home has lifed her spirits some and in a way has made her feel alittle better. Also we moved closer to her job, the daycare, and basically any type of store you need all withing 5min. Our last place the closset store was 20min.
After I read all of your replies I sat down and had a hearth to heart with my wife. Kinda laid it all out there. She was understanding but kept bring up the phrase "you don't understand what I'm going through" and I agree I don't but I don't think she understands what I'm going through also. I do believe she is trying to take some stress off of me and she is doing what she can to try and do the chores and errens that need to get done. She really is a great and strong woman.
The intamate part of the relationship for the most part is still non existant. This is one of the things I'm having the hardest time with. I don't know if this will ever improve but I am doing my best to try and accept that this is just how it's going to be. It's definetly hard though. I would never cheat on my wife and would not use a hall pass even if I was given one. I just feel it would create more stress and jealousy in the relationship. Things emotions are already on edge at times and I don't want to make it any worse.
I just need more time to get adjusted to the new lifestyle. I can certainly say my wife doesn't sound as bad as some of the people that commented. I wish that nobody had to go through this disease.
As for my job I can't cut back my hours until my daughter is out of daycare. That's in about 2.5 more years. Half way there!! Lol thanks for everybody that replied. I know someone mentioned about making paragraphs. I do apologize but Grammer definetly was not my strong subject in school and iwas blowing off some steam so wasn't paying attention to the grammer. Again thank you and I will take any advice you are willing g to give. And fyi she is still against taking meds.
 
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