unexpected feelings...

Discussion in 'Fibromyalgia Main Forum' started by Missfibro, Feb 25, 2006.

  1. Missfibro

    Missfibro New Member

    Firstly, hello all! I've not written on this board before, I was only diagnosed with fibro a year ago and am still getting to grips with it all.

    I recently had an appointment with the hospital psychologist who completely threw me off balance. (I thought i'd been coping quite well until then!) He seemed intent on making me think about my future and how I will cope with having fibromyalgia throughout the rest of my life. I've been finding it much easier to take each day as it comes and not think to much about the future, (i'm only 23!) but he's left me feeling completely overwhelmed.

    Does it get easier?

    I've had to leave university, my job, and lost friends through this illness and while i'm staying positive and working hard to get back on track it can feel pretty lonely at times.

    Sorry to moan at you all...
  2. Pianowoman

    Pianowoman New Member

    I'm glad you have found this board. I think you will find lots of support and good information here.

    Everybody is different in how they cope with this illness. Some do better taking one day at a time and some can eventually take the longer view. I think your Doctor was well meaning but if his style doesn't suit you, try someone else.

    I'm sorry that you have had to give up so much at such a young age. There is lots of hope , however, especially for those who have not been sick all that long. Usually, the coping gets easier but there will still be bad days. I always say that it feels like riding a roller coaster.

    Try to spend some time here reading and asking questions if you want. Education is really important.

    Take Care
    Kathy.
  3. AnneTheresa

    AnneTheresa Member

    Welcome to the board!

    It sounds like this particular psychologist doesn't have a very good bed-side (chair-side?) manner. His style seems abrupt, to say the least.

    I believe - as with most things in life - we need to seek a healthy balance. With regard to fibromyalgia, we must find middle ground between being obsessed and/or despairing about our future and being blind-sighted and in denial.

    Some people do make a partial or full recovery and there is always hope for a cure. But, even if recovery alludes you and your symptoms persist or worsen, living with fibromyalgia (in my experience) DOES get easier as you grown in acceptance, learn to pace yourself, prioritize and re-frame your perspective.

    I don't mean to sound unrealistically optimistic. There are of course, obstacles, bad days, reasons to feel depressed, missed opportunities etc. Life is a mixed bag, with or without a chronic illness.

    I look forward to reading your posts and getting to know you better.

    God bless,
    Anne Theresa

  4. UNREAL05

    UNREAL05 New Member

    Im sorry to hear about your most recent experience with your doctor.I was recently diagnosed with Fibro in Dec of 2005.Im 34,married and have 2 kids. I also have a hard time understanding how this chronic syndrome works or how you are suppose to feel.There are a lot of things I don't understand. I have been told to quit my job, not to quit, to stay home and relax(yeah right)to be more active and find things to do. So who is right? What I have found out is that everyones symtoms are verry diffrent,we all have chronic pain but you decide when it is time to give your body a rest or continue. I chose to keep my job,I haven't told many of my friends that I have FM only my close family members and I try to live day by day.I don't worry about the small stuff anymore. I can't afford to loose energy on things that don't matter. I try to focus on me more. It has not been easy,there are days when I just want to stay in bed because I just dont feel good, but I try to get up and do what I can.I have also found a rheumatologist who understands FM. I have been on meds since January and I feel much better. Im learning to manage my pain as best as I can. I don't know either if it gets better but I have to beleive that it does.You are only 23 and you have so musch to look foward don't let it control you.Learn to live with it!!!

    Take care,
    unreal05
  5. stillfighting

    stillfighting New Member

    Please do not lose hope! You may find that you can get a lot done in your life if you pace yourself. For example, dropping out of University may have been realistic at this point, but many of us have had long remissions with proper treatment. Find yourself a rheumatologist who specializes in fibro (I found mine by looking for folks who have research funded by NIH), and make sure you are getting proper treatment.

    Good luck to you, and I hope you are able to rejoin the living. And that psychologist sounds like he hasn't a clue. The advice he gave you sounds like something you would tell someone with no hope of living a productive life, whereas you've merely hit a detour :)!

    Hugs,
    Hilary
  6. Missfibro

    Missfibro New Member

    Oh my gosh I've just checked to see if i'd had any responses and was amazed to see so many supportive and caring messages! Thank you so much to everyone who has written back to my post. As I said before i'm kinda new to online support groups and I suddenly feel like I have finally have met people who understand and care.
    Thank you for all your advice, it's easy to get swamped with 'being ill' and retreat into your own little world thinking that no-one understands!

    I do have a lot of support from a few people in my life but it's impossible for them to truly understand what it feels like and inevitably they sometimes get very frustrated and confused.
    At the moment I feel a bit like I've been given this situation to deal with but no-one has given me the rule book to go with it! I wish it were that easy! It's great to have advice from people with similar conditions because it's very confusing when you have a physiotherapist who tells you that you have a very good chance of recovering and then other doctors who say that you'll never be well again. Hmmm i'm losing faith in conventional medicine...! I have a very good Rheumatologist but only get to see her every 6 months as the rest of the time i am referred to the hospital phyiotherapist and the psychologist instead. And as you know I dont find it entirely productive!

    I'm really glad to meet you all and hope that I can be a support to you too,

    It's really amazing to meet so many caring people who understand, what would we do without the internet?!!
  7. dont even think about the future..TAKE ONE DAY AT A TIME.
    thats what i was told at a fibromyalgia pain management course that i attended last year.


    kind regards
    fran xx
  8. stillfighting

    stillfighting New Member

    Hi again, Missfibro. There are some helpful books that I've come across over the years that you may want to look at. Check the public library first, especially if your finances are tight, but all are available at the big book stores.

    The Arthritis Helpbook, by Kate Lorig, RN, Dr.PH and James F. Fries, MD.

    Your Personal Guide to Living Well With Fibromyalgia, by The Arthritis Foundation.

    There is also a book on adjusting to chronic illness that I've recommended in the past, but I can't find my copy--must have "lent" it to someone :). Basically, it equates having a chronic illness to the process of dealing with the death of the old you and birth of the new you. The trick is to get through the morning process and realize that it is not productive to define the new you either in terms of your illness or compare your new identity with your old. I can tell you through personal experience that I've gone through this mourning process each time I have lost a major capability. But despite all this, I still set goals for myself, and realize that I have to be more flexible in accomplishing those goals.

    I'm glad you have a few good friends. Even if they don't completely understand what is happening with you, it is important to budget your energy so you can continue to do things with them and to find things to laugh about. And remember, there will always be folks on this board who have been through similar things relating to FMS, and who can provide support that your friends and family may not be capable of doing.

    Hugs,
    Hilary
  9. Mikie

    Mikie Moderator

    I'm glad you found us. FMS is overwhelming in the beginning. Living life one day at a time is a gift and it sounds as though you are doing things right. I think your doc is just trying to help you get a plan so that you have some control over your future and treatments.

    We can live one day at a time and still make plans as long as we are flexible, don't set goals we cannot meet, and don't overdo it just to try to reach our goals.

    Many of us, and our docs, believe life with FMS is hopeless. It isn't. A lot of us have gotten better through treatments and lifestyle changes. The learning curve is huge in the beginning. Try looking at things one at a time to see what might help you with living your life to the best advantage.

    Good luck to you. Please do not let this doc make you feel as though you are failing. If you have learned to live life one day at a time, you are succeeding beyond what many ever do.

    Love, Mikie
  10. lauralea443

    lauralea443 New Member

    a year was enough time for you to learn how to accept this DD. But for you it's not, you need to do what feels right for you, and if that's one day at a time then that's what you need to do. Either tell him you are not ready to think that far ahead yet, or find a new shrink. Maybe he's not right for you.

    Don't let him may you believe you are all wrong about the way you want to live. Being overwhelmed is NOT good for our health. Sit back take a breath and think about if you want to continue with him. See if he is will to work slower with you, if not you are the CUSTOMER take your business elsewhere.

    Take care
    Laura
  11. Cromwell

    Cromwell New Member

    I was saying I was sorry and thta this man wanted to help you, but made you anxious instead.

    I think FM comes in flares often and some days are better than others.

    Recently they know that taking PPI's can cause FM symptoms so check that out.

    You do not say where you live but due to support system I am thinking UK as I have not heard of someone getting that level of support at hospital here in USA.

    I always think it is nice to do your location as other people may be able to direct you to clinics nearby. You can be vague, like just general area.

    Love Anne C
  12. Sheila1366

    Sheila1366 New Member

    I'm not sure what he was trying to say to you.It surely didn't help.My psych. knows I have FM and we talk about it very little cause it is not the reason for my depression it just makes me angry.

    FM affects people differently.We have good days and bad one,good weeks,good months and somewhere in between some bumps in the road.

    You just gotta take it one moment at a time.This is not a life sentence to some.I know for example my daughter.She has been doing really well.Her FM started at age 12.She is now 20.She is able to work but needs meds. for energy and does have some restless leg syndrome.But compared to what it was like at first she is in excellent condition.

    I know when FM first hit me hard thios summer it was the worse ever.I have had some bad days but nothing compared to that first bout with FM.

    Look into all the ways to treat yourself.Medication and or natural.I truly believe in magnisium and zinc.

    Take a deep breath and relax.We are here for you and will be here with you every step of the way.

    HUGS,
    Sheila