New here...just diagnosed with on overload

Discussion in 'Fibromyalgia Main Forum' started by momof2gr8kids, Jun 8, 2008.

  1. momof2gr8kids

    momof2gr8kids New Member

    I’m a 41 year old working mom of 2 young children, ages 3-1/2 and 6-1/2. I was diagnosed with fibromyalgia just 2 months ago. Like many of you, my road to diagnosis has been a long one, with many side-trips along the way. I have been treated for depression, ADHD (both of which I believe I do have, but are secondary to the Fibro).

    I have always been a high achiever. I studied for, took and passed the CPA exam while I was on maternity leave with my youngest daughter. I was also recovering from a c-section at that time, and had to have my gallbladder removed 8 weeks after that. But it wasn’t long after that thing started going downhill rather quickly for me. At 18 months of age, my daughter was diagnosed with Juvenile Rheumatoid Arthritis. That is when the real stress in my life took hold. I suffered for post partum depression after the birth of my son, and even more so after the birth of my daughter. This time, however, I knew I needed to get myself help in order to be well enough to continue to help my daughter. I had been feeling bad but it was shortly after this that I went to a psychologist to seek help for depression. I felt like I was in a constant fog, not enjoying the things I used to enjoy, severe mood swings, anxiety, etc. Time went forward and my daughter’s symptoms just disappeared after several trials and errors, and a short stint of methotrexate injections that we finally agreed to administer to her after nothing else seemed to work. My husband and I made the decision to take her off all meds after her arthritic symptoms had vanished, but we had started to see issues with her bowel movements. We could never be sure if the bowel issues were from her meds and the docs were just blowing us off, so we just made the decision on our own. She was off all meds for a few months when we began to see blood in her stool…..back to the doctors…this time at not quite 3 years of age, she endured blood test after blood test, stool samples, you name it…then the colonoscopy and the final diagnosis of ulcerative colitis… 3 years of age!. Her disease is still not under control today. We are working on it, but it is a daily struggle. She is now on remicade infusions and other stuff that just kills me to even think about for too long.

    All of the time that this is happening, I am holding on for dear life to my job…a job I’ve had now for 9 years. I work in accounting, and it’s a good position, but my job is not stable…I am in the real estate industry. Everywhere around me, people are losing their jobs. It’s a very negative environment. There is another ‘arm’ of the company that is doing very well. The employees work right along side those of us who are wondering everyday how long we have left. What is worse, the ‘chosen ones’ act like vultures, not sympathetic in the least to those who are worried about their livelihoods in a dim economy. My department has gone from 12 people to 3, to give you an idea of the impact. Over the last year or so, I had started to notice that my memory and brain fog issues had really started to affect my job performance. I used to be a top performer. Now I can barely keep it together. I forget things all the time..even from a few minutes ago. I’ve made a lot of mistakes, from minor to serious. With the environment like it is, I feel like I’m constantly under a spyglass, with someone waiting for me to screw up again so they can find a reason to let me go. It’s also a very male-dominated business, and egos are very big here….I am constantly biting my tongue, but right now I don’t feel I can afford to be the one who stands up or stands out, if you know what I mean. I need to keep this job. My daughter and I both need the benefits. My husband is working, but is a real estate agent, so basically I am the only source of income for our family. We had chosen this arrangement so that my husband could be flexible with helping with my daughter’s doctor’s appointments and blood labs and such, as my job doesn’t always allow for that, especially now…

    So I had been seeing both my psychiatrist and my primary doctor, and complaining all along about the constant fatigue that just seemed to be getting worse. And the brain fog…which is how I described it exactly before I even heard of it referred to as such on the fibro-boards. My psychiatrist and my primary both tried various things….switching my antidepressant, adding provigil, etc….nothing seemed to dust the cobwebs out of my brain or shake this fatigue that just has taken over my life. I just kept complaining and keeping track of my symptoms and finally a couple of months ago, everything just starting clicking and falling into place…the pain, the brain fog, the fatigue, and my primary doc immediately mentioned fibro. He ran many blood tests to rule out thyroid, inflammation, etc. and after all of this, diagnosed me with fibromyalgia. He said he has many FM patients, so it is good to know that at least I am working with a doc who believes it exists. Right now, I am taking Cymbalta 60mg am and pm, topamax 50mg am and pm for migraines, and meloxicam for pain. I also take adderall xr 20 mg in the am and adderall ir 5mg in the pm for my adhd. I’m starting to add supplements and vitamins too, as I’m not completely satisfied with the meds I’m on.

    In a way, it has been a relief to know that at last there is a reason for all of these symptoms I have. The brain fog, the depression, the pain that hops all over my body, the crushing fatigue that won’t let up, the sensitivity to everything…light, sunshine, heat/cold, noises, touch, the migraines, TMJ, digestive issues….the list goes on and I’m sure you know it well. On the other hand, I struggle with figuring out how to come to grips with this. I come home from work and I have absolutely no energy left to do anything else. Things are so backed up in my household that it’s ridiculous. Filing, bills, cleaning, laundry. My husband does a lot of work around the house, and I believe he should as his job right now is very ‘undemanding’. But I don’t think he likes it. He feels I should contribute too. He feels I should want a clean house. And I do. But I just can’t muster up the energy for it. I cook dinner, help my son with homework, bathe the kids if they don’t fuss too much about it, make sure my daughter gets her meds, and basically wait on the kids as much as they need all evening (dd needs a lot of help with bathroom visits still with her condition). That is about all I have energy for these days. On a good weekend I may be able to help with putting away some laundry and cleaning the kids rooms and picking up a bit around the house.

    Our money situation isn’t the greatest with all of my dd’s medical bills, and now mine. I have good insurance, but still the bills are up there, plus I’m the only income. Hubby is on me all the time about improving our situation….he wants to sell our house, but of course with the real estate market what we could sell it for is less than what we owe on it. I say let’s just chill here for now. He won’t let up Now let me say I love him to death, but he is a high maintenance guy. He talks incessantly. Did I also mention my son is in non-stop motion? There are times when I come home and hubby and kids are constantly talking at me all night. I feel so drained that I just want to run away and never come back! I feel so guilty for even thinking this, but it’s just all so much! I’ve tried to explain to hubby between my job, dd’s illness, my illness, our financial situation and just living life, I’m on constant overload…please don’t ADD anything else. But he always does.

    Sorry for the LOOOONG intro….guess you can see I’ve got a lot going on!
    Glad to be here. I’ve been spending a lot of time reading and can see that there is a wealth of knowledge and experience, so I look forward to learning a lot here to help turn things around for me.
  2. Debra49659

    Debra49659 New Member

    You certainly have a lot going on, physically, mentally, family and must just be pulling your hair out. I am really sorry to hear that on top of everything you have to cope with you have now been diagnosed with FM.

    i am sure you will find all the support you need here...and I hope we can provide a helping hand and occasionally a laugh as well.

    Take Care,
  3. bunnyfluff

    bunnyfluff Member

    You've had to endure a lot so far, like most of us here.

    Many of us have found out that we actually had lyme disease all along, and the fibromyalgia and chronic fatigue was a bogus diagnosis.

    So, in your research, check into that, there are many good sites, and you will see some things you may not be aware of.

    If you really want to get your life back, don't think of fibromyalgia as your final diagnosis, think of it as your starting point to finding out what is actually making you ill.

    My best,
  4. momof2gr8kids

    momof2gr8kids New Member

    Wow on the whole Lyme Disease thing...I never knew, but then I certainly have had an awakening to the politics of medicine with my dd's illness. I won't go into details, but suffice it to say I've learned a lot.

    I will certainly look into that.
  5. Janalynn

    Janalynn New Member

    Hello and welcome!
    Wow, you DO have a lot going on!
    You have to slow down - somewhere. It will either be by choice or not. I had a very full and busy life. I had to cut back and accept that I could not do it all. I just couldn't. I was becoming more than miserable. I dealt with a lot of guilt because of my inability to do all that I used to be able to, but I am working on that! Once you do 'slow down' you'll start appreciating the little things a lot more - that's one of the nice side effects. =)
    I completely understand the coming home and just not being able to do anything. Oh, do I! My bills are piled up, my piles are piled up. I used to be the most organized person - I am driving myself crazy...again working on not letting it get to me!

    You just have to come to a point of acceptance that you can only do what you can do. This isn't something you can push through, even though as women we're used to pushing on, doing it all, having it all.
    I work part time now. Yes, we are suffering financially but it was the best and only decision I could make. I have taken on a part time business opportunity to supplement our income- but with that I have total flexibility. I rest when I need to. My husband is so helpful, thank goodness. He grocery shops and runs errands. I do the household paperwork (see above, I'm slacking). That's our deal and it works. (except I'm slacking LOL)

    Support is KEY!! Make sure you have lots of it - whether it's here online, in your home, with friends, doctors, family and really as silly as it sounds, from yourself. Give yourself some slack. It's an adjustment.

    Glad you're here!! I hope you'll post a lot more - we all learn from each other, so please answer other people's posts as well as asking more questions.
  6. momof2gr8kids

    momof2gr8kids New Member

    Thanks for the welcome.

    Pushing through is one of the things I'm trying to unlearn to some extent. One of my biggest issues here is my hubby. He is famous for thinking that if you're sick or feeling bad you should just work it out and push through it. I get tired of explaining to him that this isn't that kind of sick. I finally printed out some of the letters and descriptions of FM that I found on these boards and had him read a couple of them this weekend. He didn't say much, but I think I might be starting to get the message across.

    While I can't afford to work part time right now, I think what I need is to scale back on my duties at home. He is going to need to take on more or have someone else help around the house. I can do the paperwork, but I simply cannot handle the physical part of the work in the home at this time. This weekend, I made 'breakfast for dinner' for the family, and my arms felt like they were ready to fall off after scrambling a few eggs. Is that pretty much the norm for you too?
  7. lvjesus

    lvjesus Member

    I have had FM for over 3 years now and I think my husband is starting to get it more and more. It just takes time to understand, even for us. I can see how it is hard to understand that sleeping 12 hours won't make you less tired. I find it hard to understand except that I live it.

    I have recently had a relapse after about a year of remission and was really praying for some understanding about my compete exhaustion the past few days and Saturday he came in and said something about resting up and then he said, it isn't like that, is it? And I said no,it isn't.

    And it is hard for me to know what I really want from people. I want people to be concerned, but I don't like to talk about it alot and focus on me. I want to be left to do my own thing, whatever it might be. I don't want to be questioned or scolded when I want to get up and do something, even though I am tired, but I don't want to be asked to or expected to do anything I don't feel like! LOL

  8. Janalynn

    Janalynn New Member

    I think it's a great idea to let some things go at home. Unfortunately something has to give. It has to.
    Yes I understand how you feel. Some days the little things just wear me out. My pain is through the roof as well.
    My husband really has been wonderful - very caring etc. Because of my own guilt, one of the things I have done to help him understand even more (because it really is hard for anyone to understand this)is tell him things I've read like "Wow, some people are bedridden with this" or "a large percentage of people with FM are on disability". I let him know how lucky "we" are right now. It seems to help him understand the severity of it all.
    My rheumatologist has warned me over and over not to take on too much - it's a sure way to head for trouble that is hard to get out of.
    Again, something that we have to learn. For me, my pain is really bad sometimes, I mean really bad, but the mental/emotional struggle I've endured since diagnosis has thrown me for a loop. I've always been a very strong person (sensitive), but optimistic (still am), able to overcome - this has been a fight for me. Thanks God I have fantastic support...and I am learning to take care of me. We women, Moms, wives usually put others first - it's been hard to put myself first, but I've had to learn to do that or I'm no good to anyone! You have to do that as well. It sounds like you recognize that. Great sign!

    Divvy up the chores..give yourself the easy folding towels =) and cuddling with the kids.

  9. lvjesus

    lvjesus Member

    It is easy to get fearful also. Be careful about letting what you read and hear about this DD make you afraid. I listen to people talking about their families abandoning them and get really scared. But fear is from the enemy. Just because some husbands/children are horrible does not mean all are.

    Also, it is easy to talk yourself into feeling worthless because you cannot do what you used to do. You feel like you are letting your family down or being a burden. But remember what you STILL do for them.

    Like this morning I was getting ready for work and keeping an eye on the time so I could wake my daughter up to get ready for Kings Dominion should it get too late.

    I might not be able to go and walk the mall all day, but I am still watching out for her. Dad was sleeping away and if the alarm did not go off,she would miss her ride, so Mom is still taking care of the family. Give yourself points for what you do; don't beat yourself up over what you cannot do.
  10. momof2gr8kids

    momof2gr8kids New Member

    Yeah, fear is definitely out there...I try not to let it get ahold of me, or at least try to recognize it before too long and ask the big guy up there for help with it. But I do admit, I get scared sometimes.

    I like the idea of focusing on what I CAN just to change my mindset. I was thinking about this today, and this in fact is EXACTLY what my hubby does for himself, so why can't I do it for ME? Whenever he screws up BIG TIME, he'll pick out some tiny thing he did right and say, 'well, look didn't I do such and such today, doesn't that show I'm (insert positive quality here)?' Maybe it's not exactly the same, because I have a valid reason to be doing this, and he's just manipulating, but even better, right? Guess I'm just trying to convince myself that it's ok for me to trade folding towels for scrubbing the floor...old habits die hard, you know...;o)

    Thanks for the support. I do appreciate helps to hear a different way of thinking about things, and to know that I CAN slow down and the world is not going to end.

    [This Message was Edited on 06/10/2008]
  11. lvjesus

    lvjesus Member

    It is hard to keep fear at bay. At least it was for me when I was first dx'd since, thanks to the wonderful internet, I read everything I could and you know most of it is bad news. Even the very good posts at the top of the first page that tell what fibro is like can be scary if you dwell on what could happen.

    I have to personally balance myself between being informed and being obcessed to the point of fear. I will give you an example. After 9/11 I was obcessively reading all the things on the internet about germ warfare and all the horrible things that our enemies could be plotting to do to us, well, honey, I put myself into such a state of fear that I was on the verge of a panic attack all the time.

    I finally told myself that I either had to stop living my life and become a hermit in my own home, afraid to go outside or STOP READING ALL THAT JUNK. Guess which one I picked? LOL And good news, I have not been bombed and died a horrible death gasping for air yet!! Yea!

    I learned a ton of great things here from real people who have the same problems I do and gotten alot a reassurance from people who have the same wacky symptoms I have and assure me I am not going crazy, but if I am reading a post that starts to make me worry, what if this happens to me, I just move on.

    I do what I can do and don't what I can't.
    God Bless