Don't know what to do

I wanna take this time to that SK for allowing us to join. Man, where do I start. With my husband being the one with what I want to call a disease I shall not. That's because it means we have been defeated. Don't know what to do, or just who to turn to. Doctors send us in circles and med him up and we loose that man he was because he too has no idea what to do.

With this illness a person could write a book. When we fisrt started out our journey we were told he was going mental and the doctors wanted to med him for it. I stood my grounds and demanded for more help, of course as you all know that did no good, seems it made things worse. They stopped listening and days became months and months became years. There was no out reach and no where to ask for the help he needed. He has been changing slowly.

His body constantly hurts and angry, not sure if it's directed at me sometimes. But it comes out and cry! oh boy, I have never seen my man who was so strong, who gets up everyday to go to work and come home, fall apart in my arms. As his wife I don't know what to do. I remind him to stay warm and meds. and as the day goes by he sleeps it away.

I am not ready to give up on him, I am in this for the long run and still I need people who are going through this to help support us. Thank you guys for being here and for this forum to be built. This is awesome.

Just wondering, is this going to get worse?

Dancingwolf

Dear Dancingwolf,

We are glad to have you both here, we will do all we can for you. First of all can I ask if your husband has injuries, and next I'll ask if you are near Seattle or any large city, if you have been to a University Hospital, if you have been to a Rheumatologist.

SK,

Don't know. Can't remember if he was or has been. Since the day I meet him he was always healthy. Then one day he changed on me. He was sleeping alot all the time. Go to work and fall asleep after being home . got so bad I accused him of cheating. Shame as it is. Then one night while laying down he reach out to me, begging for help, for someone to help him and that God was not there or listening to his every pray.

So I took him to the doctors. We went from one doctor to the other, each professing it wan't fibro and that what he had was in his throat, hyper-thyrod. He has surgery to better help him and took vitamin D as instructed and still it did no good. GHC as you may know.

Others offered counseling and he didn't want people to think that he was nuts, losing it. So we backed off from that. Mainly because that was the frist thing doctors throw at you other then pills. They started him on gabi and aleve and then moved him up to vicodin. a cocktail as we call it. Makes him sleep the whole day away. Yes we are near Seattle, across the bay an hours ferry ride and yes and no on Rheum.... They were the ones who made the guess at fisrt visit on the second was Nuro and they said there was nothing there . It was all in his mind.

We have been on a journey....

I understand the journey, I know about being put through the ringer, believe me, you can click on my picture and read my profile. I have had many serious illnesses, injuries and been told it was my nerves/depression/all in my head/stiff...

So hyperthyroid (surgery), low in vit D3, Fibro.

I am not a Doctor, but perhaps I can help with some links, and info for you, please realize that I am not trying to make a diagnosis, but maybe I can give you some other ideas or options.

Here is a link about Vitamin D3, it is not just a vitamin, so he should still be taking it, if the doctors told him he needed it. D3 is also a necessary hormone to the nervous system.

http://www.ncbi.nlm.nih.gov/pubmed/17143049

http://www.mayoclinic.com/health/hyperthyroidism/DS00344

Did the surgery alone take care of the hyperthyroidism or is he to take meds for this?

It took me many Specialists, and my second Rheumatologist to find my diagnosis, though my GP was on the right track after realizing it was more than a car accident that I could not get over.

A Rheumatologist may be the way to go. They are the best Doctors to care for Fibromyalgia.

http://depts.washington.edu/rheum/patient/index.html

Family history is also a big factor in all of this, find out if either side had autoimmune diseases, like arthritis.

http://www.cidpusa.org/disease.html

I am not implying that your husband has an autoimmune disease, a Rheumatologist is the best one to rule those out. Some of it is blood work, that your husband has probably already had done, but much of the time these just don't show up in bloodwork, and it is information from you and the exam that will allow them to diagnose and treat.

Most Rheumatologists are Fibro specialists.

Hope this helps you.

Hi Dancingwonlf.

It's wonderful to see family members on here looking for support. I can really relate to your situation regarding your angry husband and wonder if he's mad at you. I can't get inside his head but I'm very much willing to bet that it's only the pain talking, as the pain can be absolutely unbearable. It's hard to be patient and kind when everything hurts like never before and there just is no relief for it. It wears down your mind after a while. Try to imagine the worst pain you've ever been in, then put it all around your body, 24/7, forever. Or try to imagine getting your hands caught in the car door as someone slams it. Then someone bashing your back and neck with a baseball bat. Then someone gouging your knees with ice cleats. Then someone jabbing at your elbows with an ice pick. Then it happens again the next day and the next and the next, except they switch around which instruments they use to bash you with, so you never really get used to it. That's fibro. But you also have to add in ridiculous amounts of fatigue and brain fog. THAT''S fibro.

The best you can do for your husband is to hold him and listen. He needs someone to believe in him and to advocate for him. I know it seems easy on paper but hard as heck in real life because you can't imagine what he's feeling but you can see how his personality changes from the illness. If you continue to come here, I think you'll understand what's going on with him better. You'll understand that you're not alone and he's not alone. And maybe you could interest him in coming on here too, or at least reading some of the posts.

It's a tough, cruel illness. But it's easier to take when you have a loving person by your side. If you can be that person for him,you've made his life a lot easier.

Hugs,

Petunia

Petunia, so crazy, but when I try to explain my pain to someone I also use the exact statement " feels like someone is bashing my back & neck with a baseball bat " , I also use ice pick for describing my neck pain , but with the elbows it feels to me As if i was struck with a hammer !!! Wow it’s insane what we live with !

Dancingwolf, don’t give up on your husband, if his body constantly hurts… It sounds like fibromyalgia !!! Tell him it’s not in his head !!! It’s sooo real ! First step … Find a dr that understands and treats fibro, they will also rule out other things !! No one thing will treat it , it’s a learning curve, what meds & treatments work, it takes time ! This site will help & please tell ur husband God is listening & does here his prayer :slight_smile:
Love & blessings

Thank you for the support. I have no intent of giving up on my husband. We have been married for 23 yrs. The best part of my life was when my brave soldier took me on as his wife. Everyday has been an adventure and everynight filled with tears, pain and prayers. God could not have blessed me with anyone so strong as my husband. He IS the best.

The hardest is seeing him through and the easiest is holding on. he is my all and my best friend. I can't go wrong with being here for my best friend as he would for me. Thank you for the encouragemnt.

You are a very wonderful person for standing by him. He is very lucky to have someone willing to stand by him and be there for him through this. I don't necessarily think it will get worse, that is individual. But there is no cure, and most meds your body "gets used to" at least in my case. I have no real support system at home, and yes this pain will bring anyone to tears,and no his anger is never directed at you, it is all the pain, the condition, the frustration and the feeling of hopelessness that come with it. Continue to stand by him, and be understanding, supportive and loving and he will thank you for it. You are a wonderful person just for that. I am so grateful for this group as well as I have no other options to talk, to vent or have anyone listen or understand,my own family have turned their back on me and I am treated like I am being punished for having this. Hope things at least get bearable for you and your husband. Hugs to both.

OMG Wendy, if you were hre you would be a friend that I would love to have. You have a heart of gold and sad when your family can not be there to lift you up. I think that one thing we all need is to be lifted up when we are so down. Life is pointless when there is nothing in front. Not saying a person should end their lives, I'm saying that people need others moreso loved ones to be there for them when no one else will be there for them.

Sometimes it's we do tend to forget that we came from the same place that someone with fibro comes from, but not so bad. We all have problems each with different diseases or suffering from some kind of pain or illness. Some more bless than the other is a healthy as a horse. Either way, we have no room for turning our noses up away from the other or the person seeking that care.

Sorry about your family . I pray in time they will turn to supporting you...

Blessings upon you...

Dancingwolf

Thank you very much. I doubt they will ever turn around. I have tried. Thank you for the kind words.

Hey Wendy

Its me Dancingwolf, gosh I know what your saying in some words. Seems the very people we put our trust in and confided into are the very same ones who turn their backs on you. There are som who think my husband is faking and that all he does is sleep for a hobbie, we all know that is not the truth. Far from it. But that's ok, in time things do have a way of slapping those judgemental people directly in the face. Oh, and your welcome if I haven't said that..

I hope that I can appriciate what your going through one day. My poor husband goes through it too. I wish you the best and hope things find a balance atleast. It seems to be the highest hope of everyone just for it not to get worse. I don't see anyone who has real hopes of it getting better.

So what your telling me is that is only gets worse? how does he maintain a good quality of life?

I have been much worse, bedridden. You are all probably getting tired of me telling this but here is my Rheumatologists description of fibro.

"It is a condition, not a disease, it is caused by chronic pain. Chronic pain changes the brain, sending it, flooding it with pain signals. You have to get to the CAUSE of the chronic pain to treat the disease. "

In my opinion, a Rheumatologist is the very best kind of Doctor to handle people with Fibro, they are the best of diagnosticians. Mine knew what I had before he even looked at me by my questionnaire. My fingernails confirmed it. Psoriatic Arthritis, Sjogrens, Raynauds, they caused my Fibro. Fibro cannot exist without disease, injury, trauma. Took me 7 years of hell to get to him, mainly because all of this was kicked up by a car accident that I could never get over, so everyone was geared toward that, finally my GP got me to my first Rheum, waited 6 months to see her, she looked me over head to toe, asked me a hundred questions, no answers at all. NOTHING. Took me a couple of years to get to my next one, because we believed her.

Another gal just found out she has Lyme disease, she just kept going to Doctors until one finally had the sense to send her to a Lyme disease specialist because there are strains of this regular doctors know nothing about, but a Rheumatologist made the call.

I can tell you these stories all day.

I hope you can get him to the right Doctor, it can do wonders, believe me!

I can probably even get you a referral for your area, say the word and I will post it on 2 other groups.

I will help you in any way I can! So glad you found us, hopefully we can get you pointed in the right direction!

I have to tell you that I am not a Doctor, but a patient who has been through the ringer, and done a lot of research. I can only talk to you as a friend, a caring one! What you are doing for your husband is huge!

Hugs,

SK