FRUSTRATED

Discussion in 'Fibromyalgia Main Forum' started by cjg4ever, Feb 5, 2007.

  1. cjg4ever

    cjg4ever New Member

    I have been living with this pain for over 3 years.I went through all the tests and I finally got sent to a rheumatalogist .I had to wait 4 months to get in to see him and this is what I was told in a matter of about 7 min. I was told I have fibro. He more or less told me he was sorry,try to reduce your stress and there is no magic pill and nothing we can really do.He basically told me its in my head and I have some built up anger I wont let go of,thats why I hurt.
    I was so upset, I cried all the way home.I called my doctor and asked if he could please find me a diffrent rheumatologist.I dont know if they are all like this,but I cant belive there is nothing that can be done to help reduce my pain.
    I refuse to just give up.I dont want to quit work,even though most days are hard.I try to exerzise everyday,but thats hard somedays to.I try to take care of my self and doing everthing they tell me to do.I just refuse to let this awful pain win,but I really think I am losing the battle somedays.
    I am just really depressed and yes I am very angry that I have to live with this pain for the rest of my life and there is nothing anybody can do for me.I am sure all of you have been here or are here.
    It affects every part of your life and nobody understands what we go through everyday.I dont remember a day where I woke up and did not have some kind of pain.
    I know I am probably feeling sorry for my self.I actually thought once I actually had a name and a diagnois I would feel better,but now I only feel worse.
  2. MoibonFL

    MoibonFL New Member

    It is so difficult when docs dont' want or seem to understand. Would your regular doc prescribe something? I just began Cymbalta and I think it's actually taking some of the sharp pains away although it's going to take longer than 2 weeks..Best of luck to you..I am sure others will have more experience and suggestions for you!
  3. pat460

    pat460 New Member

    This is the first time I have ever posted here, as I normally just read and observe, but I just wanted to give you a little hope. I too recently started seeing a rheumatologist. The first time I saw him he turned me "every which way but loose" for about 3 hrs. This included a conversation, then physical exam, a LOT of xrays, and several blood tests. Then he went over all the xrays with me while pointing out everything he found(arthritis, osteoporosis, bone spurs, scoliosis, fibro, and I already knew about the spinal tumors). Then he gave me Lyrica, muscle relaxers, Lydoderm patches, and prescribed therapy 3 times a week. I tell you all this to let you know there are qualified docs out there who have treated lots of fibro patients and will really try to help you. Keep looking and don't give up! Question a rheumatologist about how many patients he has helped with fibro and maybe even ask him/her to have a couple of them call you. It sounds to me like you just ran into one of the(what I call)quacks out there. Hope this helps and may you have many painfree days ahead!
  4. shrtcak81

    shrtcak81 New Member

    I feel for you and I know what it's like to go to a doctor and they pretty much just blow you off. I'm going to a rhuemy for the first time next week and hopefully he won't be like that. Something I have always done with my conditions is research and find treatments that have helped other people. Then I print out the information and show my doctor and ask to try certain treatments. Usually, they should be willing to work with you. Some doctors don't even know half the information you may read about. My doctor had only heard about specific treatments, but didn't know how to go about them, so I had to give her the information. If you're not going back to that doctor, make sure you let the next doctor know you need them to be willing to help you try different things. And don't give up, because even though there isn't a cure yet, there are a lot of ways to help you cope and ease the pain. Also, talking on this board has helping me a lot. I've found others who know what it's like and who I can easily relate to. Finally, I feel like I'm not alone. And you're not alone either!

    Good luck and take care of yourself!
    Crystal
  5. Susan07

    Susan07 New Member

    Sounds like we are rowing the same boat. I did not get good info 3 yrs ago out of my rheumy either.

    I do have a great internist who will let me try whatever I come up with. I also have a great nuerologist.

    I currently take Norco, like Vicodin but with less tylenol. Of course it took years to get to this point. For many many years the docs just told me to take tylenol.

    I also take anti-inflammatories and anti-depressants.

    Hope you get some good help real soon.

    Take care,
    Susan07
  6. HurtsToMove

    HurtsToMove New Member

    for anyone to suffer in pain--pain is unnatural and must be controlled." That is a direct quote from my rheumatologist. I believe you need to find another doctor with the same philosophy. A pain clinic may be your best bet.

    He is right in that there is no magic pill. But there are many drugs that can control your symptoms. You may need a combination of things, since everyone is different and what works for one may not work for another.

    Since you say that you are depressed, you could ask for Cymbalta, which is an anti-depressant that also lessens pain in some people. I'd also ask for Vicodin, and I wouldn't be shy about it. Obviously you'll need to be pro-active in terms of your health while under the care of your current rheumatologist.

    I urge you to look for another doctor. Call and speak to them before making an appointment and potentially wasting your time and money. Be strong, take the bull by the horns, and find yourself someone who will HELP you, you deserve it!

    p.s.-I just read your profile. My dog's name is Mali, too (Welsh spelling since she's a Welsh corgi)! You can see her pic in my profile. I'm around your age and also have a hubby who doesn't mind staying in all the time...luckily he loves movies![This Message was Edited on 02/06/2007]
  7. bunnyfluff

    bunnyfluff Member

    Let me start by saying that some Dr's (in general) do not want to even treat ppl with this disease b/c there is NO MONEY IN IT!!! There is no advanced testing to get $$ from, no real pricey meds like with arthritis, no surgeries, etc., and so they can't just tell you they won't treat you, so they give you some bad advice so you will just leave their practice and "go away". That is how I had it explained to me by a nurse from a rheumatologists office.

    So, that being said, don't feel so bad, take it for what it's worth, and call some other offices and ask some questions before you go, to be sure you don't waste time and energy on people who won't help you. Neurologists can be a great help, especially if you have headaches, too.

    Do not accept hurting! Pain has a 'memory', and will continue on, and must be dealt with. My neurologist had some great insite on it. he said that self treatment was the worst, and did more damage in the long run. Also, that pain's effect on the brain chemicals long term CAUSES depression- that's how it alters the brain chemicals!!

    So, you see, that's why you need to find someone who knows what the heck they are doing, before you do more damage than you need to.

    Continue to educate yourself with the help of the internet and this board, so that you can speak intelligently with the Dr's when you go. Keep a pain diary, and use the standard pain scale to rate it. Describe your pain effectively- stabbing, burning, throbbing, and which areas are affected at which times of the day. You can't just go in and say "oh, I hurt- give me some painkillers" b/c there are no tests to define this thing, so you don't want to appear to be a drug seeker.

    Also be sure to tell them the things you are doing to try to help yourself, and how the pain management will help you to continue to live a normal, active life, and increase your quality of life. That's what they want to hear.

    Hope this helps you with the next guy. Sorry you are hurting. That is the worst feeling there is. I have battled this thing for over 5 years now, and I still get angry, but remember that anger is always a "secondary" emotion- meaning it is a reaction to frustration, disappointment, sadness, fear, etc. I'm sure like most of us, you are experiencing all of those, too.

    Good luck to you!
    Bunny
  8. cczub

    cczub New Member

    I used to be in your boat. I delt with fibro for around 3 years. My PCP was never able to find anything wrong with. About 1 1/2 years ago he started me on Lexapro and Xanac for depression! LOL... THen he added Lunesta which did nothing.

    He took me off of these and told me to see a rhummy. This doc did nothing but give me steroids that killed my stomach(brain fog is bad and I get get the medication to come out of my head)....

    I decided to see NO doctors for about 6 months as I was fustrated. I did alot of OTC stuff that seemed to help some then it all fell apart. My work was suffering, my home life stunk and I had no energy and was in so much pain I didn't do much more than sleep and work.

    I looked around and found a doctor from here and decided why not. It was the best thing I could have ever done. He works with a ton of Fibro patients and isn't afraid to prescribe medications. I'm now on Trazadone (up to 100mg now) for sleep, Tramadol (50mg x2 daily) and Vicoden (5mg) when I get home for pain. We tried Provigil for energy and alertness but it did nothing. We've now added Lidoderm patches for pain on really bad days which help.

    Each visit I spend at least 45 minutes with him going over everything and we work together to figure out my treatment.

    Hang in there and search around. Here's the link from Immune Support for doctors in Wisconsin.... http://www.fibromyalgiatreatment.com/DoctorsChart.htm#WI

    There are doctors out there that take this DD serious.