new to the board need help and answers

Discussion in 'Fibromyalgia Main Forum' started by suescabin, Oct 9, 2006.

  1. suescabin

    suescabin New Member

    Hi everyone. How long does it take to get answers and maybe some relief from fm.should you see someone other then your family doc on this. I have been in pain for years but always thought it was my job. Last year I had a stress test that was ok. but I still have the sharp pains in my chest and muscle cramp in my back and up my spine. Sometimes I have to force my self to walk or it can take 20 min or so to get out of bed because of the pain.sometimes my mind is not always clear. 2 weeks ago my hands where so sore I could,nt move them. There better now but I dont have as much strenght in them. I was off for 2 days and went back on the third day and they sent me home. I went to the doc he sent me for xrays and blood work which was fine.{ lymes,thyroid. urine ect.He said It may be FM and to come back in 3 weeks,I went back to work and it was hell week, I am off today again and looking for help with this.Can anyone give me some direction on this.
  2. carebelle

    carebelle New Member

    First let me welcome you to Our World. I am sorry you have FM. It sounds like your Doctor is doing the right test .you might call and ask when all the test will be back and tell them you would like a sooner appointment if possible.

    You might also get an appointment with a rheumatologist that deals with FM. Tell your doctors office your pain is very bad.

    Most of us have had problems finding doctors that even believe in these DD's. Then its a battle to find help with our pain. I would suggest you find a Pain clinic as soon as possible.Get in and become knowledgeable about your options .

    We are all different ,what works for one may not work for another. Some of us will find pain relief threw anti depression drugs .Others have to go to much stronger meds. The sooner you know what your doctors views are hopefully you will find relief.

    Be Open to seeing a mental Health Doctor because this illness is not an easy one to deal with because there is no one thing that works for everyone.

    My own experience is get lots of very good rest when you can.Start treating yourself as a very good friend . At the top on the left you can put things into the search and get information about different things that might help you.

    This is a WONDERFUL and Caring Board you will find a lot of people here that are more then happy to help you with what ever daily problems you have. Everything from Pain meds to sleep problems to even OT (off Topic) things .We share what this DD (Darn Disease) has done to our lives and how we cope.Please post those things you find that helps you also, because it will help someone I am sure.

    I hope this has helped you soom I get a little long winded sometimes.You sound like you are on a good track so far .Your doctor sounds like he believes in the DD thats the hardest thing is to find a good FM doctor.
    Welcome again!
  3. suz45

    suz45 New Member

    Hi Sue:

    Welcome to the board, your question sounds familiar when we are first dx. with this disorder. First off are you comfortaable with your PCP, or would you want a referal to a Rhuematologist. Alot of how each of do really depends on the knowledge and belief system of our doctors and advocating for ourselves.

    While you are in between appt. make a list of your most sever symptoms, frequency time of day it is worse.

    Also do some reading on this site and others, the library is a great place to start. Also look at some of the alternatives many of us use to "standard" medical management. If yoyu read enough you will see many of us, use supplements to help.

    More likely you symptoms will wax and wane, some days good so maybe not so good.

    Try to pace yourself, listen to your body, pain speaks to us and often if we listen it tells us what we need to know and do.

    I use madiatation and yoga for my FMS/CMP (myofasicail Pain) and a good chiropractor that I was seing weekly, and now every 2-3 weeks. Hopefully 1x a month after that as I have been coming out of a flare that started in August.

    Each of us is so unique, you will find yourself relating to different posts as it applys to you.

    There are good people here, keep coming back good or bad, we are here for each other.

    In wellness

    Suz
  4. Susan07

    Susan07 New Member

    I have been to er twice for chest pain thinking heart attack but after all the testing when the doctor pressed on my chest - lots of pain. So that's one thing I do now to ease my mind.

    I recently quit work to go on long term disability because my hands, arms, shoulders, back and feet hurt so bad.

    I always thought I could do a desk job but it's not easy when everything you do, even going thru paperwork hurts.

    When you look for doctors always call and ask if they have FM patients because many do not work with FM. I have a neurologist now who is great and go to an internist as my primary.

    Both understand FM and will work with me any way I need.

    Good luck and take care,
    Susan07
  5. suescabin

    suescabin New Member

    Thank you for all your comments the doc call and is now going to order muscle relaxer gee I hope this helps, He also said something about seeing another doc specialist.And again that all the test were fine.I just wish I were.I guess it back to reading more on it and what I can do to help myself.
  6. rockgor

    rockgor Well-Known Member

    Welcome to the board. You will find lots of nice people here who will share info, experiences, jokes, etc.
  7. suescabin

    suescabin New Member

    Thanks I will try theses, Just got the meds from the doc, I dont like taking them but at this point I,m looking for any added relieve.

    Do some of you use cyclobenzaprin?

    The hardess thing is to make the family understand. I have always been very active. My job as a UPS driver of 19 years has always kept me going.As well as my family. But I find it harder, harder. And I,m not sure if work understands whats going on.It is hard to push yourself though the day. Christmas is coming and I have to be better for the long hours and high volume.

    It is nice talking to people that understand what this is like.

  8. springlakeorphan

    springlakeorphan New Member

    Hi Sue-Reads as if you've already gotten lots of good advice. I am no shrink but it sounds as if you must first accept the fact that you have a DD. Wanting to be better by Christmas due to the rush may be out of your range. I am not discourangeing you but want you to be realistic. Many of us have been in pain for a very long time and can no longer function like we used to. Just accepting this fact can be very depressing. Hopefully your doctor will start you on antidepressants. We have all been where you are and are here to support and pray for you. hugs!!! Mary
  9. findmind

    findmind New Member

    Hi, and welcome.
    You already have enough good advice from others about helping yourself with the pain and sleep, etc., but I would like to address another issue.

    Please keep your work fully informed of your work problems, and make sure your supervisor documents them, ok? Enlist their aid in helping you by allowing you to have maybe a split schedule; work 4 hours, rest 4 (at home, or in a restful place), then work 4 more.

    If you have "brain fog" and make mistakes because of it, make sure it's documented.

    Get and keep in order all your medical record copies. Do not scatter them just anywhere. Get organized now, just in case, ok?

    Get a copy of your job description. Keep it in your files. If you get worse and are unable to complete any tasks, make note of it along with what symptom kept you from doing that specific task. Attach it to your job description.

    Get a copy of your disability policy if you have one. Get yourself familiar with its conditions, and follow them to the letter.

    If you don't have disability insurance, I highly suggest you get one ASAP, even if you have to sacrifice in order to afford it.

    If you only work under Social Security and have no other disability insurance, you may have to apply for SS Disability Insurance (SSDI). You didn't say your age, but SSDI is usually a higher amount than waiting to retire, unless you are in your early 60s.

    ssa.gov has info about disability. You can also call 1-800-772-1213 and ask them to calculate what you would get if you had to apply for it.

    I warn all newly diagnosed to get ready for anything...FM and CFS can be severely disruptive (to say the least!) to one's life. Be ready to cut expenses to the bone and get rid of debt while you can.

    Be prepared to spend money on your care; naturopathic treatments (massage, acupuncture (which, by the way, helped me the most), supplements, etc. all cost dearly. You need to plan for that also.

    Try to find the best health care plan you can afford IF you had to go on disability. After 2 years on it, you will get Medicare, but it pays only about 50% of your costs; and hospitalization has an annual deductible that will traumatize you, so if you can, have another ins. to use along with it.

    Ok, that's my spiel....I hope you never have to use this info, that you at least try some of the FM supplementary products on this site devoted to us...they are very good, reasonably priced products. DO order the catalog!!

    Best of luck to you, and welcome again!

    There's always hope!
    findmind
    p.s. If you get to the "disability" point, Search on this site for many good tips and advice!


  10. suescabin

    suescabin New Member

    I have read many can cope with this, I am hoping I will be one of them.Many of you have given me many things to try.I have to stay postive.