Having a hard time accepting the diagnosis

[becwright67]

I was diagnosed with fibromyalgia in March. I also have degenerative disc disease, I'm having a hard time accepting the diagnosis of fibromyalgia. I have a very logical way of thinking and to me if you have physical pain it has to come from somewhere. There has to be a reason that you are hurting and it should show up on a test or through blood work. I also have people around me saying that doctors only diagnose this when they run out of options to diagnose. I'm not trying to say it is not real but I just want some proof and data to prove that what I have is real. I know that I hurt and my muscles are weak among so many other symptoms but I want to know why so I can work on it and get better. If we know where it comes from then maybe we can know how to deal with it. It's just so confusing to me. Like I said I have a very logical mind and maybe that is hurting me and not helping. I'm embarrassed to tell people that I have this because of the way they look at you and the things they say. It's either your seeking attention or your looking for meds in their opinion. I find myself questioning all of this so maybe all I need is some positve feedback and I know this is the perfect place to look for it.

 

[1sweed]

becwright67,
I can tell by reading your post that the idea of having fibromyalgia is hard to believe. I think that years ago the doctors may have given it as the reason when all tests came back normal. The reason I say this is because I was first diagnosised in 1996. However, my other doctor's who did not believe in the condition said I did not have it and all it was, was depression. Better yet it was because I had a fight with my husband. Neither answer was the truth for in 2005, I was rediagnosised with fibro. But getting the name of the illness did not solve anything because there is no real treatment for it that provides a cure.

The idea of dealing with fibro is managing each symptom. If it's pain you get pain medication. If you have extreme fatigue you need to rest more and not push yourself like before. Staying away from as much stress as possible will help relieve some of your symptoms. What fibro does is cause inflamation in your muscles. This can affect your whole body. When muscles have inflamation in them they swell and this swelling causes preasure on different nerves. Thus the many different symptoms. Like tingling and electric zap feelings, vision problems and weakness. This condition is real and you will manage better with a plan of action by taking charge of your healthcare.

Whatever, problem is bothering you the most that is the one you work on first. Then go to the next symptom. Some things can be handled by your family doctor, while others may need different doctors. Such as vision or dental, mental health or even a massage therapist. You will encounter some people who do not believe in fibro, and yes they can be cruel. We all have that problem. But if you stand tall and have courage to deal with whatever comes your way sometime these folks will come around. I think people just don't understand it because it does not show on the outside of our bodies. The most said comment is "But you look so good." Here you are suffering in pain and your friends can not see it.

So what do you do. Try having them read info online about fibro, and give them some time and space. If they refuse to believe give yourself a break from them because negativity can lead to bad flares and depression. Please take time to read the different topic's and posts here and ask more questions. Join in on the fun topic's and welcome new members and make new friends here.

We have all been there where you are in the begining and with strength and courage, and faith, you will learn new coping skills and things will be better as time goes on. Good Luck!

 

[becwright67]

I understand about some of the comments that people make because I have two boys with autism and you wouldn't believe the comments I've gotten about them. Instead of being angry I decided to advocate for them for better understanding and acceptance. I probably need to look at fibromyalgia the same way. Like Autism people judge what they do not understand. It hurts my feelings when they do it but I have tough skin and usually try to do something about it positive. I guess if I can fight for my boys, I better learn to fight for myself. Thank you for responding 1sweed, you said some really good things and it made me think. It is a hard diagnosis to accept but so was autism and I accepted that. It was hard but you have to do that to move forward and do something about it.

 

[Amalia]

I think that the first step in dealing with it is accepting it. You can find help on the forum where people are very supportive and carrying. If you feel like it's too much, maybe a psychologist or even a priest, someone trained to listen could help.

 

[mweber]

Hi Becwright67,
My daughter has autism as well and I have fibromyalgia too. The hardest thing for me is social occasions. I will look at other parents and couples who are all healthy and "normal" and want to scream at God....why me? why us? I am so mad about it that sometimes I will decline these situations and my husband will go without me. It is becoming a strain on our marriage, but I can't help how I feel. Hopefully, I will someday get the strength to handle it all better.

 

[becwright67]

I used to avoid social situations also because my younger son who is more severe would have major sensory overload and would have terrible meltdowns. He's come a long way since those day but has had alot of treatment (not medicated just behavioral and sensory). He also has Sensory Processing Disorder so we got a double whammy in the sensory department. I have questioned why us also but I think we're supposed to learn something from this. I belong to a local autism group and that support helps alot. You would be amazed at how many of us Autism Mom's have health issues ourselves. It probably is due to all of the stress. We love our kids but they do take alot of work and can be hard to manage at times. I can completely understand where you are coming from mweber. Sometimes it does seem unfair but I try to put myself in my boys shoes and think how hard it must be for them.

 

[mweber]

I read a wonderful quote and have it posted on my fridge and at work......"Special kids go to special people". That is how I handle my daughter's illness. I can accept the challenge of raising and supporting an autistic child. What I can't accept is doing that while struggling with my own illness. God bless us all.

 

[1sweed]

Just thought I would pop back in here for a minute and give my view on why us. I don't know the cause of fibro, but it seems to hit mostly those of us that were once very active and productive people. Most of us got things done. We could multi-task and keep going.

So now we have to slow down and take it easy, but our brains are still in a motivated gear, that makes slowing down very hard. I think in my case it was a wake up call to slow down, and see what was going on around me. To stop pushing myself in the wrong directions and to learn more patience and understanding of the important things in life, most of which is watching out and caring for other people. Yes, it is hard when I am in pain and filled with stress and anger about my condition, but then instead of having a pity party for me, I relax a few days then get out and help someone else cope. I think that there is a greater purpose in us having this illness that we can not fully understand now, but someday in the future the reason will be understood and we maybe thankful we had to take this journey.

 

[becwright67]

Very wise words 1sweed. My husband has rheumatoid arthritis and hypoglycemia and he is always there to help me with the boys. We both have bad days but as a team we work well together. He gives me strength because he doesn't let his illness take over his life. He makes me want to fight also. I advocate for autism so I guess my next step is to better understand fibromyalgia so I can help get the word out an make others understand also. My problem is that I've been so busy putting fundraisers together and getting better understanding out there about autism and when I get diagnosed with this it about floored me and I couldn't accept it. I didn't want anything to slow me down. I can still get things done but I guess I'll have to change how I do things. My grandmother always told that God hands those the most whom he loves the most.

 

[mweber]

1sweed and becwright67: Thank you. Your optimistic views have brightened my day. I also believe that God does not give us more than we can handle, so we are all strong enough to handle everything that comes our way.

 

[pknitj]

I have been lurking and reading for awhile, but want to comment...I was raised to "produce"...if we sat around, we were lazy. I am now 59 and that tape still plays in my head. Therefore, it is hard to deal with the fact that I must slow down. Recently, I hit a wall, so to speak...my husband had triple bypass with complications in November...his mother went to a nursing home in December...in February we started moving all of her things out of her house, packing, dispersing renovating...bought the house in April and moved in...have been working in the yard...and keeping up a social life. In my mind, I am fine...and lazy if I don't produce. In my body...well, it took about a month to get back some energy and I'm finally feeling better and learned a valuable lesson about pushing oneself.

I accept the diagnosis...I work on accepting the life. It is frustrating, even exasperating...there are times when new pains in new areas present themselves almost daily. And the worst part is feeling like a hypochondriac! However, today is all I have...I am not in tomorrow yet...so today, I trust in God to help me through...adjust my thoughts when they go whacky...and do the best I can...and slowwwwww down.:shock:

That said, I am Patti...and I have fibromyalgia :-o

 

[mweber]

HI Patti,
Welcome. Thank you for sharing such great advice. I just went to the doctor yesterday and had to take all 3 of my kids with me. I started crying to the doctor for just a moment because I am so frustrated. But I didn't want my kids to see me like that. So I stopped, wiped my tears, gritted through the pain and enjoyed a lovely day with them at the pool, because who knows what tomorrow will bring.

Take Care,

 

[mariposa]

The hardest thing for me is social occasions. I will look at other parents and couples who are all healthy and "normal" and want to scream at God....why me? why us? I am so mad about it that sometimes I will decline these situations and my husband will go without me.

This may or may not be beneficial to you, but when there's a social gathering like that, I have kind of "trained" myself to focus on the fact that I don't really know what their lives are like. There are many illnesses that are invisible and there'd be no way to know if that family or that person is dealing with cancer, clinical depression, ptsd, etc. etc.

I guess the bottom line of what I'm trying to say is that other people appearing "healthy and normal" is just our perception but we really have no idea what they're carrying. I suspect that it wouldn't make a difference to a lot of people, but it does to me.

 

[mariposa]

I have been lurking and reading for awhile, but want to comment...

Well you cut that lurking stuff out! Yeah, I'm in a silly mood today. It's good to see you here, Patti, and I'll look forward to more of your posts.

I was raised to "produce"...if we sat around, we were lazy. I am now 59 and that tape still plays in my head. Therefore, it is hard to deal with the fact that I must slow down.

Oh, I am sooooo familiar with this. Someone I know very well does that... any time someone doesn't seem to be "doing enough" the lazy label starts flying. I've always hated it and I'm glad that at least *I* know there could be all kinds of things going on that have nothing to do with lazy.

I'm sorry to hear of all the stresses you've been having to face. How are your husband and mother doing now?

 

[pknitj]

Okay...I'll work on the lurking...lol. Mother-in-law is doing really well...it has been a challenge to get her settled in and the challenge is pleasing her. But at 92, she enjoys relatively good health.
Hubby is doing good...he does not have the stamina to work full time, so part time is perfect. He still has a time adjusting to his now new condition, but is in good spirits ;o).