I'm really struggling with getting multiple diagnoses and not having any support from family. My husband calls me a hypochondriac and says I need to be locked up in a padded room. My sister told me to just try harder and suck it up. I work a full time job in retail, get up every morning and take my daughter to school, I do what house work I can and it's never enough. I have been diagnosed for sure with fibromyalgia, gerd, arthritis, anxiety disorder with panic disorder and depression(most likely bipolar just not an official diagnosis). I am also suspected of lupus and sjogrens syndrome, I was diagnosed in 2010 but have a new rheumatologist and he is redoing all my tests. I work really hard, I push myself harder than I should just to prove I'm not lazy and it gets me nothing but sicker and I feel like the only one who cares is my daughter. I am in constant pain and sometime it's excruciating, I have been through almost every triggering event you could go though. My parents divorced when I was 8, I was assaulted by a relative at 16, got married at 18 to someone who is very controlling and is verbally abusive, had a miscarriage at 24, finally had my beautiful daughter at 29 by c-section, a year later had a bad car accident, a year after that was diagnosed with endometriosis and had two surgeries the last one being a total hysterectomy. I have lost a career that I had put everything into for 13 years to the economy and lay offs, then worked my way up from cashier to store manager in two years just to have that taken away too. I don't mean to whine just really feel stuck in this terrible place emotionally. The last few years it has been doctor after doctor and theory after theory. None of the meds seem to help and I feel like an experiment. I feel so useless and alone in this mess.
HI mb912mom,
Welcome!! I am so sorry to hear you are having such a rough time. Hugs new friend. Sometimes it takes the words from someone else to hit home for people, so maybe sharing some of the posts from Avenk and Lovett might help. Or have him read some of the other posts on the site, it might put things into perspective. I hope you can find some balance and may good things come your way, you sure have had a bumpy road and you deserve a break.
Singingtrees
Hi Mb912mom, I’m so sorry for all you have been through , the hardest thing is to suffer in silence and have to feel alone in your agony !! I hope your Rheumy can help with at least some answers, do try and get your husband or sister to go with you to the dr , and ask them to please help you explain Fibro to them . Print out material for them and take one day at a time. You are not lazy, it’s so hard for us to do the simple things that everyone else takes for granted. I do understand its so hard to get others to understand that !!
Many hugs & blessings
deeB
Thank you all for caring, I did get a rx for hydrocodone from my GP until I can see the rheumatologist at the end of the month and it helps some but doesn't make the pain go away. At least it makes it bearable to go to work. I'm also taking plaquenil but have only been on it a couple of weeks. My husband refuses to go to the Dr with me and won't even talk about it with me. I think he thinks if he ignores it then it's not real. My sister has gone with me and was there for the lupus diagnosis in 2010, but she can't understand what I mean when I say I'm hurting or tired. Really no one can unless they have this monster to live with every day. Please don't get me wrong I am not walking around feeling sorry for myself, most people have no idea anything is wrong with me, it is just getting harder to put that mask on and I'm getting tired of putting everyone else's feelings ahead of my own. Thank you again, we all need a pity party every now and again.
tell them they may look back some time and be sorry for being so disbelieving .. i find that reminding my family of this reminds them when theyre being rough on me on purpose because they think im bs'ing about hurting or being unsteady or being cognitively challenged. Recently i went to the doctors and i was sure id have enough time to take my afternoon dosage they took so long that by the time i saw seen i was hours late and i made a believer of my skeptic doctor but it took her seeing me barely mobile stumbling to step up on the scale, and actually falling off the examination table while she chatted before she realised its not safe to be unmedicated, unambulatory and finally made the call to referals and started seeing its not depression its more frustration at my inability to make them SEE that theres something wrong with me .. so if your body can tolerate it let them see what a missed dose looks like dont suck back or hide and let them see that the meds dont fix it but it helps and its not much but has to be enough for now
Thank you!
Hi MBmom and welcome!
Wow, you've received such great advice from everyone on here! And I mean it. They've suggested very good ways to approach the theme with your husband. But your husband has to be willing to listen. If he isn't, then wild horses probably can't drag him over to the info on fibro.
Speaking of fibro info, here is a good article explaining serious illness. It's good to use for people who struggle to understand your diagnosis, as well as for learning how to pace yourself. (Pacing is so, so, so important in fibro. It involved taking breaks in between the task at hand.) http://www.butyoudontlooksick.com/wpress/articles/written-by-christ...
And finally, firefly has given you very sage wisdom: If you try harder and harder to please your hubby, you are going to find yourself deeper and deeper into the pain and stress and you WILL burn out. I did it with my last full time job and almost did myself in. Your body can only take so much. And fibro is an evil little demon. It weasels its way in, from car accidents, operations, and stress at work, and once it's in, that's it. You can't get rid of it. Think of it like a giant cockroach. They can survive anything. So too can fibro. So you have to be more clever than it. If you find yourself getting exhausted doing a particular job at work, take a few minutes away from it so you can recoup. If you need to sleep in during the weekend instead of cleaning the house, so be it. Do a bit of housework, then take it easy. Go back to it only if you are feeling well enough to. You really do need to learn to listen to what your gut is telling you about your body. Please don't allow anyone else to tell you how and what to feel. They have no earthly idea how you feel unless they too have fibro.That's not to disparage them, only to state a bald fact. Fibro is a game changer.
Please do take care of yourself while you have enough health so that you can. If need be, only listed to your hubby with one ear while just thinking, "uh huh, uh huh, whatever, dear." Sometimes that's all you can do with people who don't believe in fibro.
Okay, i'm tired now so will stop. I truly hope you can have a breakthrough with your hubby so you feel a bit more understood on the home front. Don't forget though, we're here to listen, and we will. You no longer have to suffer in silence.
hugs,
Petunia the tired
Thank you so much! Just the simple fact that someone else understands is such a huge thing to me. I really appreciate every single one of you!