New to the message boards...tons of questions!!!

Discussion in 'Fibromyalgia Main Forum' started by vietchic, Feb 5, 2010.

  1. vietchic

    vietchic New Member

    HI! I'm new to the message boards and I have tons of questions. I'm getting increasingly depressed and frustrated because I feel like fibromyalgia is ruining my life!!! I had a wonderful career in marketing that I had to give up because it was too much with my illness. I had an active social life! I've had to take a less demanding Monday-Friday desk job, but it doesn't pay enough so I've had to add a second part time job. I'm struggling to make ends meet. I also have asthma, high blood pressure, and a few other conditions. My rheumatologist has no bedside manner....he has a reputation for being a jerk. He keeps telling me I need to hit the gym everyday and I'll be fine! How can I go to the gym if I can't even get out of bed some days? I'm sick and tired all the time. My family, friends, and co-workers are tired of me being sick and tired and complaining all the time. Not quite sure what to do!!!! This illness is affecting every aspect of my life and I am having a hard time adjusting. I'm tired of people thinking I'm lazy or it's all in my head....even though they know I have an official medical diagnosis. Does anyone have any tips for coping with these issues? Also...everytime I start to have a fibro flair (which seems to be at least once a month!!!) my skin gets kinda pink and splotchy and then I get a small rash that pops up in different places. My doc says it's definitely related to my fibro, but that it's atypical. Anyone else have this?
  2. AuntTammie

    AuntTammie New Member

    welcome to the boards.....I am really crashing lately, so I can't write much rt now, but I did want to welcome you here, and to tell you that you are definitely not alone.....unfortunately most of us know all too well how badly others can react to hearing anything about Fibro or CFS....and Drs are sadly not an exception to that....there are some good ones out there, though, some very good ones, but they are hard to might want to start another thread asking about Drs in your area, if you are interested in finding a better one
  3. JLH

    JLH New Member

    Hello, and welcome!

    I know it’s easy to get depressed and frustrated with how badly you feel every day. I’ve had fibro as well as lupus, diabetes, major heart problems, major back problems, severe arthritis, high blood pressure, neuropathy, thyroid problems, interstitial cystitis, obstructive sleep apnea, migraines, and much more, for over 45 years. (I am 59 now.)

    I worked a stressful job for over 30 years. My job was 70 miles away from my home, so it involved a lot of time on the road, plus the 8-10 hours that I worked every day. I also raised three children and a husband during my work career. I am retired now.

    I was sick the entire time that I worked, yet somehow I ended up moving up the ladder to a very good position in my company. My father was an executive and used to tell me all the time that my employer hired me to work and do a job and not to listen to me moan and groan—that, those actions had no place in the workforce. He would tell me (all the time) that nobody, but me, cared about how I felt—that every other person on the job also had problems and aches and pains, so for me just to keep it to myself—and do my job. He said complaining all the time would alienate me from my coworkers and would eventually lead me right out the door.

    Since he was in management, I took his advice when I was young on how my supervisor and coworkers would view me. So, this is how I worked my entire career. I tried to keep my mind on my job and not on how I felt.

    I worked hard and came home and literally crashed. The minute I got home I put an ice pack on my back between my shoulder blades and a bag of frozen peas at the base of my neck. This is where it seemed to hurt the most. Some time, I would have to lie down in bed for 30 minutes or so before I started dinner. Some days, I just sat down and cried! As my family grew, my responsibilities at home changed, and I had to change on how I handled things when I got home. I started out in my marriage fixing big dinners because that is what my husband expected. That didn’t last very long! As the kids came along, the dinners got less and less. Whatever was quickest to fix!

    I ended up taking most of my vacation days one at a time, and they were when I was sick, and not for vacation. I took more sick days than I really should have, but not enough to get me in trouble. However, during my annual performance reviews, my boss would always mention how many sick days that I took--he thought that I took too many.

    You just do what you can, and what you have to, to survive. I just operated on a one-day-at-a-time basis. I did not do any cleaning house during the week, and until my kids got bigger, I didn’t do any laundry during the week. I did all that on the weekends. Anything to make my week easier, in order to work, is what I did. Convenience foods. On Friday night, I always picked up a pizza on the way home. We never went anywhere during the week, and we did not invite company over during the week. It would have been nice if my husband would have helped, but he worked two jobs—he had his day job, then he farmed all evening and on every weekend and holiday—so I never had a ounce of help from him, except he did get the kids ready for school in the mornings after they turned school age—I got them ready and took them to a daycare when they were infants thru pre-school.

    I ended up taking an antidepressant daily in order to avoid migraines. During the last 10 or more years that I worked, I was on a ton of medicine due to my heart problems, etc. I ended up taking early retirement at 30 years, even though I was not really old enough in age to retire, due to my heart—I would have ended up having a heart attack had I continued to work.

    You just have to put your many illnesses aside mentally, and not think about them every minute or else they will take over your life. You have to think about everything else and everyone else in your family, like your children, who depend on you. You have to maintain that positive attitude. When I felt the worst, I would stop at a hospital’s “Life Center” where they had an exercise place for rehabilitation and for the public to workout, and go to their “after work” water aerobic class. The warm water aerobics were the best thing that I ever did for my fibro. After your muscles got used to them, they were the most relaxing thing ever! I loved them! Just what I needed after a day at work!

    If your rheumatologist is a jerk, find somebody else. Your doctor doesn’t have to be a rheumy. I go to one, but he is really useless. My main doctor is a specialist in Internal Medicine. He knows more about the fibo than the rheumy. But really, there is not much that you can do for the fibro. You take an antidepressant, something like Neurotin or Lyrica, maybe a muscle relaxer, and exercise. You have to keep moving, or you will be so still and hurt so bad that you won’t be able to move at all.

    I personally take Cymbalta, Neurontin, and Zanaflex (a muscle relaxer that I take at night only) for the fibro. I also take a ton of other meds, but they are for my lupus, heart, and many other medical problems that I have. Right now, I am confined to a wheelchair due to my back problems and the severe arthritis.

    Oh, and you talked about your skin. Mine is just like yours, I am often pink with many splotches. The pink will be light pink and then dark pink sometimes. My skin will also turn purple when I’m cold. I also have this problem called Raynaud’s Syndrome which involves the skin. My lupus also affects my skin.

    I don’t know what else to tell you, except now my best friend is a heating pad, but that is used at the base of my back all of the time. (I have a lot of sciatic nerve problems.)

    A lot of folks here will probably disagree with me, but everyone has to live their life the way that is best for them and do what they have to do to get by. You will just have to find what is best for you.

    If you need something for the pain, you might want to talk with your doc about trying Ultram or Ultracet, it’s a non-narcotic pain reliever that is often given for fibro. While I worked, all I took was 600 mg. of Motrin (or ibuprofen) every 4-6 hrs. I could not take any narcotic because of all the driving time that I had to do and remain alert, but the main reason was that I worked for the federal government and they had a no-drug policy (it did not matter if it was prescribed or not—it would impair your judgment as far as they were concerned and it was not allowed).

    I hope you get to feeling better and work out something that will help you.


    [This Message was Edited on 02/06/2010]
  4. Janalynn

    Janalynn New Member

    Hello and welcome!
    I too am not in a very good place for a well written reply. I can tell you though, that the people here DO understand what you're feeling and going through.
    I have always been an extremely positive person and believe that your attitude has a huge influence on your life. This "thing" called Fibro has thrown me for a loop. As horrible as my body feels, and my Dr. classifies me as having a moderate to severe case, the emotional part of this has been really tough for me.

    JLH- You said something that really hit me. I used to be upbeat, the "life" of the office so to speak. I hated it when people would come to work in a bad mood or with a bad attitude, complaining all the time. I don't complain out loud, but it is evident that I do not feel well and my boss has taken notice. He knows I have Fibro, but I realize, this is a business. It bothered me greatly to hear it outloud that it's obvious to him that I don't want to be there. I love my job, but it is totally related to my pain. He does know that, but who wants to see a long face everyday. I don't blame him or my co-workers. After a while, they don't care SO much.
    I now go in and if I have to fake a smile (which I do), I will. There are and will be days that I cannot. Heck, I'm in tears half the time on the way TO work because my legs ache so badly.
    Anyway - your words helped me. Thanks.

    I will write more tomorrow - just remember you are not alone, not by any means. This is a lonely illness, even with people around because unless they've experienced it, no one else can truly understand what it is like.

    Hang in there!!
  5. DJohnsonUK

    DJohnsonUK New Member

    Hey there, i'm new here too. I dont have an offical diagnosis, infact I haven't even told my friends about it. Because I have two children, I find a routeen which is strict and written down helps me. I also find that escapism has helped me a lot over the years. I've found several things I can do in my spare time that I love to do! Writting on the bad days, singing everyday, working on a car on the good days, finding these things also aids me socially, whatever day your having you can always talk about something possitive you've been able to do that doesn't concern your condition. The other thing I can suggest is keeping a dairy, write everything down for a couple of months and see if you can get "Part-time" benefit. Obviously I live in the UK and assuming you live in the US, I know that the systems are quite different. Perhaps look into something that can help you with your rent/bills/morgage ect but wouldn't stop you from working fully. Or if it does, perhaps help out with a Charity or vulenteer work, so that if you do feel an improvement, you have something you can say you've been doing in the time.

    I know that maybe for your personal situation that my advise is not possible. But I read your post and I just wanted to put something that might be able to help.

    Debs x
  6. vietchic

    vietchic New Member

    Thank you so much!!! You have no idea how much it means to hear from someone who understands exactly where I'm at!!!! I really appreciate all of your advice and it brings me great relief to know that I can get through this....especially the work situation!!! I'm still adjusting to figuring out what I can and can not do and whether it's ok to just push through to get done what has to get done. The bills don't pay themselves, the house doesn't clean itself, the world keeps turning whether I feel like crap or not!!!

    Best Wishes!!!
  7. vietchic

    vietchic New Member

    I feel the exact same way. I am known for being the "cheerleader" of the group....where ever I am. Now everyone has been telling me I've turned into "Debbie Downer". I don't like complaining and I don't like feeling so angry at the world. I think people don't understand that I need a little bit of time to grieve. Yes I am still alive and there is still a world of possibilities that await me, but I had plans.....plans that I can not do because of fibro. It's depressing. I'll get over moves on. I just need to talk to other people that understand that it does feel like you have lost something and that yes I look ok, but I hurt so bad I'm doing everything I can to keep from crying!!! And the fibro fog has thrown me for a loop!!! I feel like I'm turning into a senile old woman!!!! I think this message board is probably the best thing I've found so far!!! I can't thank everyone enough for the support!!!

    Best Wishes!!!
  8. vietchic

    vietchic New Member

    Thanks!!! I've been wanting to start writing again. I think starting back with my creative writing and poetry will help. I'm in the process of looking for some part time assistance....medical coverage or financial. From all the posts I've read....I think maintaining a positive attitude is going to be the key!!! I'm going to make a point to count my blessings everyday and find humor in the everyday. I'm such an independent person....the hardest part is learning to ask for help and learning that it is ok to say that I can't do certain things that I used to do. I've always pushed myself too hard anyway.....maybe I can make something positive come out of this!!!!
  9. JLH

    JLH New Member

    My brother knows that my arms, shoulders, neck, back, and everything else hurts and it's hard for me to type all day, etc. and sent me the following email (which I copied to post here) about some new software that he just got--he is a doctor and has a lot of reports that he has to write, and notes on his patients' files, etc.

    Here is what he wrote to me, it may help you in your writing ....

    Along comes a great piece of software. This software is called Dragon Naturally Speaking. This is a voice recognition technology that simply types, in English, everything I say into the microphone. It can be used with word processors, e-mail, and just about any other document that requires several paragraphs.

    One of my patients recommended it and I can say that it's fantastic. It's available through Amazon for about $43, plus free shipping. The package includes the voice recognition technology software as well as a complete headset. Once installed, you simply place the cursor in the location you wish to dictate, then speak away. This entire e-mail was written using the voice recognition technology. Since many of you in the family are students and frequently write papers, I thought this may be of interest to you. It would be especially helpful if you hate typing. It also provides its own spell check. This just actually unbelievable. Well, a routine report often takes me 70 minutes to complete, I can now dictate a complete report in about 15 minutes.

    If you're interested, the product is located on Amazon and is currently on sale. For those of you with the iPhone's, there is also a voice recognition application that you can download for free and experiment with the technology. Just search for Dragon in the iPhone applications section.

    The software is at least 98% accurate. In this entire e-mail I’ve made 2 corrections. I sure wish I had this technology when I was in school.

    *End of his email.
    [This Message was Edited on 02/06/2010]
  10. JLH

    JLH New Member

    You mentioned that you were in tears half the time on the way to work, well, as I mentioned, I had a 70 mile drive to work. There were many, many days that I cried all the way home from work because I hurt so badly that I thought I couldn't stand it.

    I didn't cry much on the way to work, though. My problem on my way TO work was that I was always so tired that I could barely keep my eyes open and my mind clear enough to stay focused to drive all that distance. I would often stop at gas stations, get me a soda to drink, and wash the windshield on my car -- just something to do to clear my mind and stay awake.

    The caffeine in the soda would keep me awake on the rest of the way to work. and ... I wasn't even supposed to have caffeine because of my heart problems. But, I had to do what I had to do.

    A lot of days during the winter, I never even turned the heat on in my car, because I needed the air to be cold to keep me alert and awake. I would also frequently have one of the windows down a bit. In the summer, I would keep the A/C up as cold as I could get it.

    I purposefully dropped out of a carpool because I didn't want to be responsible for other people riding with me not knowing how much fibro fog I would have that day, etc. Also, I could control the heat and cold the way I needed it to keep me awake.

    It was a rough life just getting to work!! Then, I had to worry about getting through the work day!!

    I also had to often ask people to repeat their questions or instructions because I did not understand what they said because of my fibro fog .... so I always apologized and said that I was hard of hearing! Hard of hearing was worse with background noise ... and our office always was noisy!!

    It was a rough life working; however, when I thought mine was bad, I always thought of other people who were living in worse situations than I was, and kept me from feeling sorry for myself. .... most of the times!! LOL