The Pain Is Running My Life

Discussion in 'Fibromyalgia Main Forum' started by tamigail36, Sep 14, 2005.

  1. tamigail36

    tamigail36 New Member

    I have never posted before, although I have visited the chat rooms for the last two years. I have Fibro but have been fortunate in that I have been able to keep working and taking care of my family pretty well for the past 8 years since dx and treatment began. Lately the pain has been increasingly worse and I am structuring my whole life around it. I am constantly watching the clock to see when I can take something to get some relief, I barely get through my day and then I am straight to bed with these terrible aching pains. Most nights I can't get more than 2 hours straight asleep as the pain wakes me up. I get up, take hot baths, use heating pads and try to distract myself and I may get another 2 hours right before the alarm goes off. It seems like I can't be a good mother or wife anymore---- I am always in bed when the fam is home. I wonder if anyone else out there has felt totally isolated by the pain. I feel like I am barely enduring each day and I used to try to fit two days worth of activities into every day. All I can think about anymore is how much I hurt and how worthless I am like this. I don't feel like I can talk to anyone else about this- who would understand? But maybe someone on this board will. Sorry to ramble so long. Best wishes to everyone and thank you for reading.---- Tammy
  2. LollieBoo

    LollieBoo New Member

    Tammy- You are obviously a strong person to have suffered so long before reaching this point- I am relatively newly-diagnosed, even though I have suffered for years and I am already there! It strikes me as odd that current info. says FM is not degenerative or progressive, yet so many of us are on a downhill slope. I have noticed my flares becoming more frequent and increasing in the number of symptoms and severity. I thought today that I could talk to my dr's office, but even though I am a "good girl" and walk on my treadmill and do gentle stretches daily, with yoga and pilates on the (rarer and rarer) days when I can, my dr's nurse said that my dr's response to me was that if I was excercising like I was supposed to be, the medicinal approach would be more effective. I was appalled. Not only that, but like you, I take hot baths and use heating pads (mine massages, too!), as well as using aromatherapy, cold packs at times, Ben-Gay patches, a TENS unit, meditation and visualization, relaxation, and a few body self-adjustment maneuvers an osteopath friend of mine showed me how to do, besides seeing a counselor, a chiropractor and a homeopath for adjunctive therapies and additional coping mechanisms. It is only after none of that helps me to be more functional that I call my dr, and her nurse felt like she needed to tell me that I should try to find some other coping mechanisms, because there is not a pill that is just going to make me all better. So obviously, I picked the wrong person to try to talk to! Oh, well- now I'm here... Nice to meet you. I do understand and I hope you feel better at least knowing that I ramble, too! I am praying for you to be able to feel well enough to at least spend the valuable time with your family that you desire.
    God Bless,
    Lollie
  3. lovethesun

    lovethesun New Member

    it takes time to adjust to a new way of living.It sounds like the doctors still haven't hit on the right combo of medsfor you.You will probably always have to live around the pain, but you can function when the meds are correct.Your expectations of yourself do change-When I have to stay in bed,I play chess with my son,I paint things for the church boutique.I call my friends.Like I said the first thing is to get the pain under control.....It will happen.Linda
  4. tamigail36

    tamigail36 New Member

    I can't believe that nurse told you that! At least the medical people I deal with are nice to me.... it is just that this deal is so overwhelming... if it was just one part of my body- or if it didn't wreck my sleep.... anyway! Thanks for letting me know I wasn't the only one.
    [This Message was Edited on 09/14/2005]
  5. tamigail36

    tamigail36 New Member

    You must be a serene person. I feel like the world is passing me by while I am in the stupid bed! Thanks for the nice thoughts- I will try to look at it more positively.
    [This Message was Edited on 09/14/2005]
  6. orachel

    orachel New Member

    ...very strong woman to even begin to handle all that you do in a day. Quite frankly, I don't know how on earth you've been managing to do all you have for so long. That is just amazing, in my book!!! I got sick about 3 months ago, really bad and all at once with FM, and really haven't been able to work more than 5 or 6 days combined since then! I just simply don't have the ability to endure the pain and fatigue that comes with real activity (and often even with total couchpotato-ness, unfortunately). I can't really offer you any real advice, you're obviously coping with it a heck of a lot better than I am! One thing you might want to consider, and maybe just look into. FM does go thru "flare ups" when pain and symptoms are just nearly unbearable, and other times may be much more manageable. You don't have a profile, so I don't know what you do for a living, or whether you have a Short Term or Long Term disability plan at work, but it might be worth looking into. I know mine pays me 100% of my pay for 6 weeks, then 60% for 7 weeks. After week 26, LT disability kicks in and I can collect 60% of my earnings indefinitely if I need to. Now, keep in mind, I've been off almost 3 months and have only been paid for like a week, so far, but if you have the ability you might want to talk to your doctor about your lessening ability to cope. Explain that you've pretty much cut out all recreational activities, and that pain is preventing you from doing your job well, and it is becoming impossible for you to continue with these symptoms. Maybe he/she will be able to tweak your medication to get you more relief, or maybe will insist you take a break (just a few weeks, even, just to regain your strenght!!!) from work. Also, if your doctor insists, your employer can put you on "part time" schedule.

    Bottom line is that if you keep pushing it this hard, you might just be causing yourself more pain, and causing the symptoms to compound. We get what's referred to as "energy deficit". If we use too much energy one day, it comes out of what we have to use the next day...and if you're not sleeping well, it could really end up bad for you. Please please call your doctor and insist on an appointment first thing.

    At the very least, you can get some medication to assist you in sleeping. I was waking up (no exaggeration) at least 15 x every night at first....now I'm on Klonopin, and my sleep is gradually getting better.

    Regardless, you are not alone. You can always come here for support. I've counted on the people here innumerable times and I've only been around this board for a week or so.

    Finally (whew!!!) some things you might want to check out. First, there's a great essay floating around called "SPOON THEORY"...just do a search for it by title, and check it out. Great way to explain to family why Mom's so pooped all the time! Also, we just started a post here called "Getting to know you (and not your symptoms)"...should be right on main page somewhere. When I need a lift, I've started reading all about ALL OF THE OTHER PEOPLE DEALING WITH EXACTLY WHAT I AM! It's weird, but it really inspires me and makes me feel a LOT less alone.

    Hugs to you!
    Rachel
  7. lovethesun

    lovethesun New Member

    It happened to me.The docs still couldn't figure out what I had.I went to Physical Therapy and crashed.I only lasted a couple months of work after that.Take care of yourself.Your children just want to talk with you.It doesn't matter where you talk to them or if you just watchh cartoons.Have a good day.Linda
  8. rhonda357

    rhonda357 New Member

    Tammy,
    I know exactly what you are feeling. The pain runs my whole life. The Dr. gives me pain meds and they take the edge off for about 1 hr and then can't take anymore till 4 hrs later. It runs my time with hubby, kids and grandkids. You think how can my family not see what is going on with me, but they don't see it, as they are too worried what you are going to do for them. Unfortunately, this can not be seen like a broken leg, so what they don't see doesn't excist. I have had this stuff for 17 yrs now and mine still don't see. I feel like I can't make anyone happy or even make myself happy. I just try to take 1 day at a time, that's all I can do, don't know what tomorrow may bring and can't spend my time worring about it. I know what you feel and send my best wishes.
    Rhonda
  9. JonP06

    JonP06 New Member

    I have been diagnosed with CFS about a couple years ago. I would call it CFSX (X for Xtreme), because I have all of the symptoms I have read on this forum and other forums in addition to several other symptoms that I have yet to see anyone complain about related to CFS or Fibro. I do know how you feel and it is not easy be who you are or anyone with these conditions. I too feel so isolated and never go out with friends like I once used to do. People complain to me why I never go to their parties, and other outings. I tell them I simply couldn't go. The quality of life seems to be getting lower and lower as the years are wasted away. I'm just 34 and had CFS for 33.5 years, so I know how it feels and learned to deal with it. You just have to take it easy and get plenty of rest among other things. I just wish there was a cure for this because it really is a pain in the (you name it).
    [This Message was Edited on 09/15/2005]
  10. Rosiebud

    Rosiebud New Member

    everything. I am in pain every minute of every day and because of it I cant function properly. I had to give work up in 97 and it took me a long time to come to terms with that.

    You're not worthless, you are brave and strong to keep going through all that pain. This illness does isolate us and I wish people realised how truly awful it is.

    Remember you have friends here Tammy.

    love
    Rosie
    [This Message was Edited on 09/15/2005]
  11. rbecca47

    rbecca47 New Member

    HI I was recently dx, with fm and cfs. And the pain at times is unbearable. With me i can't take to many brands of pain meds because of kidney problems. So when i am in bed. I make it a family time, see i have my two granddaughters living with me age 10 and 7 and on weekends i have my grandson,age 1 with the girls. we play in bed, sing. they love to give me a concert. my older grand daughter has read up on fm and cfs. so she is very understanding. and the rest of my family is getting there. So hang in there, i know the pain can be unbearalbe and sleep is far away. and let your family read about fm. so they might get a better understanding Becca
  12. NyroFan

    NyroFan New Member

    Before I was given medication I could barely do a thing.
    I take pain meds and in my case this mobilizes me--to a point. I have insomnia and meds for that. I had to literally go on a doctor hunt for someone who could treat me as a whole person. Thank God I did. It was worth the effort. He also gives me stretching exercises and tells me exactly how to do my day: some work, back on the heating pad, do a little more, back on the heating pad. And this is my ritual for feeling better.
    Hang in there Tammy. My thoughts are with you.
    Hugs,
    NyroFan
  13. blondie45

    blondie45 New Member

    Just try to hang in there and hopefully you will have some days that are better than others like I do. I live for those days and unfortunately I have to run my life around those days that I feel better. Those are the days that I have to try to do my grocery shopping, etc. I just recently reduced my hours on my job from 40 to 30 a week as I just could not handle it anymore. The hardest part is trying to get your family to understand, but my husband knows if I go to bed at 6 or 7 pm that I do not feel we1l at all. I am fortunate in that he understands.

    [This Message was Edited on 09/15/2005]
    [This Message was Edited on 09/15/2005]
  14. Mareeok

    Mareeok New Member

    ...we are here for you. I've been ill since 1976. I've learned to live with the pain because it is here to stay like an annoying relative. LOL. I have gone thru partial and total remissions and also terrible flares that sometimes last months. I've never been formally dx'd with Fibro but know I have it. I was dx'd with RSD (Reflex Sympathetic Dystrophy) and Gerd, IBS, and PTSD and Panic Attacks.

    It's awful to stand at the door while you're family leaves on a fun hiking trip. My now ex-husband would'n meet me half way and believed I was exagerating the pain. He told our two children terrible things about why I couldn't go with them at times. Now my kids are adults and they want nothing to do with their father and are supporting and validating me. I learned that although I have no strength in my limbs I have a very healthy and strong brain. I have more compassion now for people who are hurting physically or emotionally but no tolerance for stupid people.

    You sound like a survivor, Tammy, and I already admire you. Each day is a victory. It takes courage to put your feelings here for people to read. That is very healthy to do. Don't look to close to the 'big' picture of your day. Take each little accomplishment as testimony of your inner strength.

    Heart hugs,
    Maree
  15. tamigail36

    tamigail36 New Member

    I say EMPATHY because it sounds like you really do understand, not just feel sorry for me. I wish I could talk more with people with FMS so I wouldn't feel like such a loser and so alone. Your kind words helped me today and I appreciate you all. ((( HUGS))) to all!