New, with questions...

Discussion in 'Fibromyalgia Main Forum' started by CecilyB, Oct 13, 2005.

  1. CecilyB

    CecilyB New Member

    Hi, everyone. I have been reading through the posts about FMS, and I have a few questions. First, a little about me. I am 31 years old, married with a 3 year old daughter. Ever since the birth of my daughter, I have had a very hard time with my health. I suffered from severe post-partum depression and anxiety after her birth, and it only seems to get worse. Also, I have been a migraine sufferer since puberty. My headaches are severe, and sometimes last for days. It just seems like I am sick more often than I am well. Oh, I should also mention that I am the primary breadwinner for my family. My daughter is in a private pre-school, and my husband is a part-time mail carrier. We just moved to a new state (FL) and have bought a home that is twice (plus some) the cost of our previous home. All this to say that I suffer from severe stress!

    For a long time now, I have just been barely getting through the days. I struggle to make it to work, do as well as I can there, and am physically exhausted by the time I make it home. I usually am in bed by 7pm at night when I am working. It feels like I have been working manual labor, when in reality I just work as a computer engineer and the most physically intense things I might do are to walk to my car and go to a different building. But, I would ache all over when I came home. I have also been having trouble focusing, was diagnosed with ADD. In the end, I think it was really the medication I was taking that was making me really foggy. My psych changed my meds, and the fogginess got better, to the point where at least I felt like I could concentrate enough to drive.

    I have also been having some stomach problems, where after I eat my stomach gets very upset and I end up filling a toilet with poo at least 2 or 3 times in an hour, then I feel better.

    The thing is that I just get so fatigued and sore after doing anything- like going to the store or even out to eat. Three weeks ago, I got a sinus infection. I barely got over that and got the flu. The sinus infection still had not gone away, and my head was still aching, so I did a second round of antibiotics. Again, I started feeling better after a few days of bed rest and went back to work. After a couple more days, I was aching and too tired to work again, and was back to the doc. After more bed rest, I felt better. I was even able to host a party at my home for some people from work to come over and help my husband put up a playset. I really didn't DO that much, but spent the next two days completely exhausted in bed. About 2 pm on the second day, I got up and went outside to help my husband with the playset. Afterwards, I was really tired and sore, so I was back to bed. The next day, I was totally down. I could hardly stand up, was very dizzy, felt like my brain wouldn't tell my arms or legs to move (like my brain thought they were too heavy and just couldn't do it. I went back to the doc that day, and he mentioned FMS, and ordered a lot of blood work. Since then, I have pretty much been in bed. I have tried getting up and going out a little bit, but just feel worse after doing it. Was feeling marginally better yesterday, and was planning on going to work today, but didn't get to sleep until 4am (even after taking Ambien). I woke up tired and sore.

    Now, to my questions:
    How do I know if I am just being a hypochondriac and making too much of my aches and pains?

    My husband thinks that I am just sore because I am spending too much time in bed. Should I just force myself out of bed, even though I know it will just make me feel worse? What should I be doing?

    I just really don't know what to do. I get sore from just sitting up on the bed, then when I lay down, I get sore from that.

    I just feel like I lose no matter what I do , I lose. I am worried about missing so much work, dealing with the pain, and losing my life. After my doc mentioned FMS, I did some research on it, and the light bulbs just went off. I really think this is what is wrong with me. How do I get over the fact that I just feel like a whiny baby that can't deal with normal life... and more importantly, how do I talk to my doc about this, without coming off as a hypochondriac to the doc? How do I know if I am really sick, or if my mind is just being mean to me?

    I know this post is long... I appreciate your reading it, and any help or advice you can offer.

    -Cecily
  2. lauralea443

    lauralea443 New Member

    If your doc has already suggested that it might be FM the first thing you should do is get your doc to send you to a Rheumy. They are the ones that deal with this illness more than your primary.

    The Rheumy can help you find meds that will work for you so you can get at least part of your life back.

    I was like you too at first, could go for a few days then in bed for several day not know why I felt so bad.

    Oh and it also sounds like you have IBS with the stomach thing and going to the bathroom.

    Anyway, I'm sure you will get other posts, it's sometime hard for us FMer to read long post but be patient people will get around to it.

    Get yourselve a Rheumy because what you are feeling is not all in your head, you need to get the right treatment program going.

    Good luck
    Blessings
    Laura
  3. CanBrit

    CanBrit Member

    I think every sufferer of FMS goes through an initial grieving period after being diagnosed. I don't think you're a hypochondriac at all.

    Fibromyalgia is a crazy syndrome. There are so many different symptoms. Your stomach problem is likely irritable bowel. I think I read somewhere that 80% of FM sufferers have it. Fatigue is another biggy as is insomnia. Let's not forget the horrible pain.

    I'm a programmer analyst and my job is certainly not physically demanding, but I have to remember to get up every hour and move around or I start to seize up. I love my job and I have an hour's commute to get there. I can't imagine not doing it so I take what pills I need to get though the day.

    I'm currently off work due to a flare up. I'd been doing quite well but stress & weather changes are a killer for me. My cocktail includes a muscle relaxant, pain killer and sleeping pill. When I'm not in a flare, I can usually get by with one of each at bedtime. When I go into a flare, I need the relaxant and pain med 3X daily, and even then, it's not total relief.

    Accepting this condition is very hard. I'm still struggling with that. (Diagnosed last year but I think I'd had it for a number of years prior). This board is a wonderful support system. So many of us can identify with the other.

    I know that in certain cities, there are FM groups that meet monthly. You might want to check that out.

    Sorry for the long diatribe. Take it easy and if you need to go to bed at 7, well go.

    Regards,

    Eileen
  4. CecilyB

    CecilyB New Member

    Thanks everyone for your support. I just can't help thinking I am just making too much of the hurting. How can my body betray me this way?

    Can any of you tell me how you deal with being achy and moving around? Is it better just to stay in bed, or get out and move, even though it hurts? Are any of you able to work? I really, really want to keep working. Is riding a bike more effort than it is worth? Will any OTC meds help with the pain so I can get out and go?

    Thanks,
    Cecily
  5. spasco

    spasco New Member

    Those are all the "normal" symptoms of FMS. You need to get yourself to a dr qualified to treat it. I also have to work everyday. No exceptions, unless I'm half dead. The way I enter each day is to wake up, go get some tea and food, go back to bed and stay there for at least 1 hour, sometimes 2. Then I can get up and "function". If I am in a rush and can't do that, I have a very painful day, guaranteed. That's not to say I don't have painful days anyway, but getting right up definitely makes it worse.

    Don't worry, you're not a hypochondriac, or crazy. You are feeling these things and it is legitimate.

    God bless! Stephanie
  6. cbrogan6

    cbrogan6 New Member

    I'm 28 and have a 6 year old son. I feel like I'm way too young to be feeling like I do! I was diagnosed last week with FM. The rheumy gave me elavil to take 2 hours before bed, and that has helped me sleep so much better. I work full time as a mortgage auditor, and my job is not physical at all. But I too go home at night too exhausted & hurting too much to do anything else. My weekends are spent recovering from the week. Which is very hard b/c I feel like I am shortchanging my son. When I am feeling ok, it's easy to think that maybe I'm overexaggerating, but as I write this I am hurting, and I know it is very real. I tend to feel better in the mornings & worse in the afternoon, so I try to do as much work in the morning as I can, then kind of cruise through the rest of the day. I am single, so I have to work, but it definitely feels like work takes almost everything out of me. It is hard to explain how it feels to other people, so when people ask me how I'm doing, I usually just say fine, even when it's not true. Wow, I sound like a serious downer...it's funny how I can go from feeling positive & ok in the morning to hurting & depressed in the afternoon! But I guess that's the nature of the illness. I don't have any answers for you, but I wanted to let you know you're not alone, and you are also not a whiny baby :)
  7. CecilyB

    CecilyB New Member

    I just wanted to say thanks again for all of the support! Also, knowing that someone else feels like the illness is shortchanging their child makes me feel a little better about myself.

    Thanks!
    Cecily
  8. cjsmommy

    cjsmommy New Member

    Cecily, you sound JUST like me. My son is 3 1/2 and I had sever PPD as well and my health has steadily declined since having him. I hope that your dr. can help you out either by referring you to someone else or handling it himself. My PCP who is a certified family practicioner manages this and my epilepsy for me and does a wonderful job. I do hope that you find something that helps. And yes, sometimes forcing yourself out of bed and taking a short walk, no matter how tired you are, will help. At least it does for me. Its a vicious cycle. You're in too much pain or exhausted to do anything but the less you do the worse it gets..at least that's how it is for me. I found that taking additional folic acid, 3 400mcg pills a day, has helped tremendously in addition to the meds that my dr. prescribed. Good luck Cecily and keep us posted.
  9. CecilyB

    CecilyB New Member

    Well, I just got off the phone with my mom and dad, and am fairly certain that I am going to get another lecture tonight. The last one was about how I am not spending enough time with Lily (my daughter), put her in dangerous situations (oddly enough, by letting her play with them), and how I am going to regret not spending enough time with her. Oh, and how I am a bad mother because I didn't know she was invited to 2 bday parties one weekend (I only knew about 1)... But, I digress.

    Tonight, I expect to be lectured because I have been sick for essentially 3 weeks, and missed a lot of work. As I said, I am the primary breadwinner, so it is very important for me to keep my job. However, I will not drive when I feel my brain is foggy. I really had planned to go to work today, but when 4am rolled around, I knew it wasn't going to happen. How do you deal with the feeling that you aren't meeting the expectations you have for yourself, and that other people have for you?

    C
  10. jennypee

    jennypee New Member

    ...Cecily!

    I have a real problem with denial of my illness.Sometimes the pain is so severe I'm afraid my body will die from the stress alone, and I still question myself.

    Even though I like me pretty well, I become convinced that I'm just being a hypochondriac, or whiny, or paying too much attention to what is probably normal body behaviour.

    It seems impossible that I can be this physically devastated at only 26 years old, and much of the time I have a hard time accepting it. I feel like I'm slacking off somehow.

    One of the most wonderful gifts the people on this board have given me is the knowledge that I'm not lazy, I'm not crazy, and I'm not alone.

    I don't have much advice to give. Frankly, I have no idea what to do for myself. I do know a couple things though.

    1. Get a doctor who believes in Fibromyalgia and is willing to let you be an active participant in your own health care.

    2. Get your hubby on board with you. Once you have a decent doctor who believes in you, take Hubby to your appointments whenever possible so that he can see this is not imaginary. It may also help him feel less powerless if he gets to be involved in your treatment and knows what's going on.

    3. Become familiar with the word "NO," as it is a very usefull tool in avoiding exhaustion and extra pain. You have to learn how much energy your new, sick body is capable of and use that to prioritize the millions of things you probably do for everyone else every day.

    (Search for the word "spoons" on this website-- there's a very good story floating around to illustrate this)

    4. Be proactive--- learn everything you can about your illness, because doctors can't be relied on to know everything. Some of the docs I've had in the past couldn't be relied on to know ANYTHING!

    Welcome to the board! Good luck! :)

    Jennypee
  11. CecilyB

    CecilyB New Member

    And it is official that my psychiatrist thinks I am crazy. I told him about the blog I had started to document the pain/ symptoms I have been having (even showed him the 3 pages for the last 2 days). He told me that I was focusing too much on the bad, and that I really need to be focusing on good things like work. I left with a headache, feeling more than ever that this is just some psychosomatic craziness that I am imagining in my head. Even though I hardly slept last night because I ached so bad, I still feel guilty for mentioning that I think I have this. I am so worried about my appt this afternoon. What if he, too, thinks it is just all in my head? And, how do I convince myself that it isn't?

    I'm sorry I haven't thanked any of you by name in any of my responses. By the time I get to the Reply page, I have already lost them in my head. Please know that I appreciate each and every encouraging word. I feel so helpless and alone... like I have to somehow validate my very existence. Everybody else in my family is so healthy... why do I always have to be the one with the crazy illnesses? (I'm the only one with B12 deficiency, only one to get mono, have migraines worse than anyone else (in my family, I mean))...

    Please remember me this afternoon as I see my Internist. Help me to remember all that I need to tell him, and still not come off as a hypochondriac.

    Thanks!
  12. CecilyB

    CecilyB New Member

    Saw my internist and he is certain that I have fibromyalgia. He gave me a RX for Ultracet and Physical Therapy. So far, the Ultracet hasn't helped, and I have taken 3. So, no score on that front. The thing I am really excited about is the PT. I want to get involved in aquatic therapy, and start getting some exercise and strength back. I know it's wierd, but I feel such a sense of relief. It's like I have finally been validated. At least now I know what I am fighting... Now I just have to figure out a game plan. My Internist is going to get me an appt. with the only Rheumy in town... I need to make a list of all I need to ask him, because apparently it will be hard to get in to see him for future visits.
  13. cjsmommy

    cjsmommy New Member

    Oh Cecily, when I was diagnosed it felt like a weight had been lifted because now it was time to actually do something to help it. I've probably had Fibro for a few years but it wasn't until every single symptom I get hit all at once that it dawned on me one thing must be causing this. Finally being able to get a game plan to help really made a difference.

    I did PT initially as well..it was helping but became just too expensive for us to afford even going once a week. (at $86 a session we could only do it for a couple months) It has taken some time to get the meds situation to where I'm actually doing better..it was just tweaked again a few weeks ago, and I know it will be again. I guess the best thing is to approach everyday with a positive attitude and PACE yourself.

    Unfortunately everyday is different as far as symptoms so do what you can. I'm glad that your dr. is being proactive and getting things going for you. Give the meds a little more time to work and if they don't make sure to tell the dr. There are other things out there that might help.