Confused Husband needs help to understand

[jeepers92]

My wife was diagnosed over a year ago. I try to be very supportive. I have some issues of my own she has had to be supportive of over the years. With Fibro, there are some things I just don't understand, I am hoping for some feedback.
My wife does very little to try to get help with this. She drags her feet going to see a specialist. She doesn't follow through with things our PCP has told her to try like Yoga, exercise. etc. because it hurts too much.
However, she'll go outside and do yard work and seems just fine while doing it. Then she comes in and she's sore, and wants to go to bed. Our night life is completely gone of course due to the pain.
I'd like her to see a specialist and try to get some where with it.
We found that Lyrica helps but it's very expensive.
I started paperwork for her to try to get it free from the manufacturer, but she wouldn't even bother with getting it done. The doctor was willing to sign it, she just never did it and it was lost.
I just don't get it at all. Any thoughts?

 

[vickythecat]

As a loved one, I can imagine how frustrating it can be when the person who is sick is not doing what you think she/he should be doing.
I have fibromyalgia and recently my mother got severely sick due to high blood pressure. For many years, we went through similar scenario's like the ones you mentioned. My mom would not go to the specialist, would not follow up, would not listen to the doctor's advice like losing weight, changing her diet, getting her annual blood checks etc.

Now finally she told me why - basic anxiety. Now I should've seen it before as I suffer from generalized anxiety disorder and social anxiety my whole life, so my life is one big hell of anxiety. My mom is social, outgoing, talkative, never shy to speak out etc. But when it comes to doctors, her mind shuts down.

This could be the cause of your wife's situation as well. Pure and simple anxiety for doctors and anything health related. Therefore, my advice is to reassure her each time that you are there with her, go to appointments together (or make sure another family member/friend goes along), write down the questions you have, the complaints etc. I also find printing out information online, or suggesting youtube videos really help. Information is power, the more she feels in charge, the less she will be anxious or reluctant to follow up on doctor's suggestions.

And take the time to talk about it. Make a nice cup of tea/coffee, with her favourite cookies, sit down, and talk about it. Ask her open questions. How do you feel about this? why? how can I help you? etc. Tell her how you feel, how and why it is difficult for you. And that you are together there to solve this problem. Together.

Fibro is also a very difficult illness for all to understand. Most of us here have been dealing with it for years, some for decades and we still do not understand. Neither do the doctors, so believe me, it is very normal that you don't get fibro either. One day, we are pretty good, the next we are stuck in bed. One day we are smiling despite the pain/exhaustion, the next day we are in tears even though we have less pain/exhaustion. We want help, yet we are also so sick of doctors not taking us seriously. Or to be told 'to just deal with it'. We know the world does not understand us and that really gets to us. But we don't understand our new reality either.

Key is; communication, a good doctor, information, pacing, acceptance, mourning and despite all the set-back, making the best of life.

 

[Tipnatee N]

When I was first diagnosed with fibromyalgia , I coundn't believe it, why me? This is humiliating! , it's excruciating! , it's disbelieving by many doctors who actually gave the dianosed to me them self. How can they help me while they looking at me like they're mocking me while pretending to know what I'm going through? They talked about me like all my life I have been nothing but a lazy bum who can't deal with stress or don't have any guts to help my self right along anybody. Sure my doctor didn't exactly said it but. In my experience with doctors after doctors , they all thinking it deep down while wearing it on their expressions as clear as the light of day . Cause eventhough it's scientific proved that fibromyalgia exist , it's have no prove that it is. It has no method to fix it. All treatment programs that they have right now are just purely speculating , it doesn't help all fibro suffer cause all sufffer are experiencing it differently. In fact in some patient excercise can push them to the blink of suicide if their symtomps are the unpredictable types that have the huge fangs sinking in their stress and depression.

I know cause I was one of them! My doctor treatment attempted to fix my sleep disorder that comes with my fibro had pushed me on furthering extreme sleep deprivations and caused me to have more rampage bunch of sleep disorders I never had . He pushed me to use light therapy had me buy all the equipments ( expensive equipments), get out excercise joined gyms ,each day do more... and more I did exactly as he asked. So what happen? I was in so much terrifing pains, no sleep, I gain photophobia to the max my eyes almost blind against the sunlight, I get sleep attack outside almost die a dog death on the side of the road. I attacked my self bruised and bleeding when I forced my self to go sleep with sleep med and supplements . In fact even though I hate saying this, but thanks to my constant experience of hyperventilating and panic attack that safe me from committing suicide simply because it scare me knowing that I will have those thing attacking me while trying to dying!. It scared me more than death it self. With silly thought, what if my spirit kept on getting panick attack for eternity? Stupid I know but it help me from clinging on to life. I am now have non-24 sleep disorder and it's out of control . I'm not yet blind but I'm worry every day that I'm going to be. I'm experiencing occasionally def or sound sensitivity do to my SPD , and lately just experiencing VCD and become mute from times to time.

Everytime I go see doctor, I nod my head and try to coping with the idea that I am losing my control of my whole being. I'm fallen apart the moment I believed there's a easy treatment I easy cure. Like a fool .

You can't blame doctors either cause fibro never react how other illness does. Doctors aren't god that won't make any mistakes. In fact they made a lot of mistake do to fibromyalgia enough to hate treating it and feeling like they were force to do it . So every mistakes they made fixing fibromyalgia were calculated enough not to put any doctors them self in troubles for suggesting it. Luckily there are some doctors out there that experiencing fibromyalgia them self or having family member battling it daily and so they are passionate enough to understand and given the real help no matter how weird or risky. Those doctor are hard to find

When any FM suffer say "Everything hurts" probably is a poor way to describing it cause it's much much more than just simple pains I'm experiencing. I rather work or working on something like cleaning, get organizing, cook, or gardening till I can no longer able to do anymore. That way I don't feel like I'm wasting my life away by feeling depress over and over from excercise or any other treatment program that I can't gain any benifit in short amount of time. To me excercise only help after I already managing to stop my stress and anxiety all on my own. But with what costs? My life! , my job, my financed that all fibro treatment had robbed me littlerally blind.

If you wish to help , you must help removing all stress from her life in the way that she would truly feel comfortable . Not because you think it is. Cause to her she is still a human who want to kept being normal.

 

[Marvis]

That must be tough. All I can say is that there are a lot of conflicted feelings when you are dealing with a fibro diagnosis. From moment to moment you either believe you are sick and are in full mourning of your previous life and then thinking you are perfectly fine and there's been a mistake and trying to live a normal life. I can't tell you how many times I went to my doc in desperation for meds, only to go off them at the first sign of side effects or because of something scary I read online, but mostly because I didn't really truly believe I was sick, that I really needed meds. Because there's no blood test or xray telling you definitively that you have fibromyalgia, it's really hard to process, to really grasp that you're sick. So, yeah, you're all over the place. You get different advice from a myriad of people - medication is good, medication is horrible, medication will help you, medication will make you sicker. I know the thing that turned me off from lyrica is that I was told I'd gain 20-30 pounds, and I couldn't deal with that.

You're really dealing with a loss of a sense of yourself. She's used to being your caregiver and now the roles are reversed. Gardening might be her stress relief, so she's trying to keep that going to maintain some normalcy.

Going out to something like yoga or a class might be too overwhelming for her. I avoid them because it's a group and I really am unsure I'd be able to do a full session and I know I'd have to modify. She's likely be more comfortable with dvds or something online specified for fibro. Or, if you're in a city, maybe there are classes for fibro? There aren't where I am. I know doctors recommend yoga and exercise, but the come with a large BUT. Yoga can do more harm than go if not done just right for her body. Exercise has to be very gentle and easy - like starting with a 10 minute walk. Gardening in short bursts is actually good gentle exercise. Think very, very small. Frequent movement to keep from getting stiff, but easy, light exercise.

She's going to need to learn about pacing - it's the most important feature of surviving with fibro - google it.

It took me a full year to wrap my head around my diagnosis and figure out what I could/couldn't do. Just be really patient. Like Vicki said, a cup of tea and a cookie and a nice chat. The fact that you're willing to seek out a chat group and ask the question makes you pretty awesome in my books. Hang in there. Your wife is still there. She's in mourning for her old self and trying to find her way back to the sunshine. She needs time to find the path.

 

[diamond]

At the risk of embarrassing Tipnatee as far as my experience goes she is spot on...her description of fibro is very accurate. For me its way more than pain..i feel ill a lot of the time....no strength....very sick infact and this is very stressful.

Marvis also gives great advice and perspective.

Pain is a huge part of the problem but when its all over pain and fatigue and muscle weakness day after day month after month with little reprieve the emotional impact..the loss of identity and purpose and feelings of guilt that we are not the person we were causes us anxiety and often depression.

Some people do better ...may have this illness more mildly or get periods where they still have difficulties but can still do quite a good range of things without too much trouble and might have pain in specific areas rather than all over pain.

I can totally understand your frustration but Tipnetee is right your wife needs stress reduced and you too need to look after yourself.

Talk to your wife about the things you mention but BE LOVING and UNDERSTANDING......im sure she is scared and doctors do often judge us because there is no magic pill and the pills do often have terrible side affects that add to us feeling worse..before they help and thats if they help.

Nothing takes fibro pain away... it might reduce it if we are lucky and make life more tolerable and it wont take away the fatigue...not even sleep does that and medications often make fatigue worse ...so we feel like guinee pigs putting drugs in our bodies when we already feel bad and it feels like a big risk that we could feel even worse when we cant even cope with whats on our plate already.

Its a very mysterious array of symptoms to try and manage.

Get as much help if possible with maybe with house chores and concentrate on your wifes energy and better hours being used up on pleasant things if possible.

Let her do what she enjoys to keep some feeling of normality as and when she can.

Believe her when she says she is sore and has to go to bed to recover....no one makes this up...its extremely difficult to want to do things...then do them and pay later with pain.

I know this means you have to step in but i takes time to learn how to live with this disease ..for both of you...yes well done for coming here seeking help and advice.

Doctors say things like yoga and exercise off pat as thats what they are taught helps...but we can only exercise to a certain level and that also varies minute by minute.

It is good to keep as active as possible but only the individual can feel what they are capable off.

I for one would do serious damage if i tried yoga positions or cycling or swimming. Gentle short walks are the best way to start to see what you body can tolerate and recover from and even this will not be a consistent formula....your wife working in the yard is all really good exercise.

Its very scary ..to go to a class where you feel obliged to keep up when you are making the pain worse and dont know when or if you will recover is very hard emotionally..i couldnt do it..like Marvis says we kind of need to keep control and stop when we need to without the extra pressure of being criticized or show ourselves up.

Welcome and do ask anything you want anytime.

 

[moe1959]

Please dont get to frustraited. You have found a great place for information. The fact that your reaching out for help just shows how much you truely care, bless your heart.
I was also told, "do yoga and cut out gluton". I TRIED TODO YOGA, AT HOME AND I JUST LAUGHEDMY HEAD OFF, GUESS I WAS WATCHING THE WRONG INSTRUCTOR.
The best thing you can do is offer physical and emotional help. Its already hard enough trying to adjust to Fibro without feeling guilty because you can not accomplish what you once could.
Brain fog is awful! It can destroy your self esteem ( IF YOU LET IT). Thus may be the reason she is not following through on Dr.s , paperwork, etc. I just recently cancelled a Dr. Appointment because the stress of travel is not worth it to me. I was going to have a nuroligist look atme, but My husband scheduled a Dr. appointment around the same time for himself. look at it this way, Help your wife by downsizing, her work, her schedule, etc. A nice word of encouragement goes a long ways. I have beenthrough every pill known to man for fibro, the side effects are terrible! One of which is weight gain. Hang in there, were all hopeing for a cure. Right now, unconditional love, and maybe some funny Movieswill help.

 

[Tipnatee N]

On that note I want you to close your eyes and take a deep breath for your self. You don't need to think , no need to worry. The best support for your wife is for you to remain claim your self. Be like the pillar of hope , keep only possitive thought. Prep her some Dead Sea salt bath. And read her a good book or talk about interesting things.

The more you worry your wife will be too and it will make her worse than before. Not to mention guilt. Never ever guilt her in to anything ' and that's not a suggestion it's a warning!!!! Cause everything crash when guilts fully running the show in fibro brain.

Your wife is adjusting to new life , new set of brain, and new sensories involving new pains receptors which will takes time to learn how to manage her self. And no doctors in the world can teach her that! I swear to you.

Give her time. Time to open up her self to the world again. Just like Vickythecat, Marvis, Diamond, and Moe1959 said . Don't rush her, be on her side without any judgements. And Just Be Your Self! Remember She is a smart human being ! and she will figured it out soon enough of what exactly will or will not help her.

Tell her to drop in some posts here in this forum , we'll be waiting to welcome her here at anytime she wish and ready for more friends.

I used to laugh so hard when I hear doctors say something like " walking around the house, simply doing house shores are not excercise !" Lmao!! I wonder in what world those doctors are living in?

 

[diamond]

Perfect description Tipnatee...you and i see it and feel things the same way..i hope Confused Husband comes back and reads our replies.

What a lovely bunch of people here..pats on our backs today..maybe we have helped one couple navigate the early stages of getting to grips with this illness and staying close together rather than falling apart.

 

[Tipnatee N]

Perfect description Tipnatee...you and i see it and feel things the same way..i hope Confused Husband comes back and reads our replies.

What a lovely bunch of people here..pats on our backs today..maybe we have helped one couple navigate the early stages of getting to grips with this illness and staying close together rather than falling apart.

I feel very honored to feeling the same way as you too Diamond . I often tell my bf to check out this forum maybe someday he can be some voice to Help to people like jeepers92 .

 

[Marvis]

Gosh! This is such a great group!!