Feels like nobody cares

Discussion in 'Fibromyalgia Main Forum' started by wanderingbluedragon, Nov 21, 2006.

  1. wanderingbluedragon

    wanderingbluedragon New Member

    Maybe I am just having a bad couple of weeks here, but I am having a really bad flare in my cfs and fibro. I cried all day last Friday because I just couldn't stop. Along with all of this I have Adhesion disease. I am looking at having another surgery to find out if the pain I am having in my left pelvic area is something going on with my ovary or if it is scar tissue. My whole body hurts so much I can barely stand it and two Dr.s I have been to both feel that the only way to treat this pain is with antidepressants and moderate exercise. I'm taking everything I'm supposed to be taking and nothing is helping. I just took two Ultram, which make me sick and feeling hung over for two days, besides not helping very much, but it's all I have for pain. I have 800mg Ibuprofin which, in my opinion, is useless. I struggle through work and through my chores at home and no one seems to notice, they all think I'm fine. I just don't know what to do, I am at a total loss. No one at home or work understands what I am going through. I have a friend with RSD and she kind of does, but at least they are attempting to treat her pain. I just get a shrug of the shoulders and told that there's nothing to be done. I take Provigil, but still have a hard time staying awake all day. The cold is making it worse and I'm scared what will happen when it snows. I tried to call my Dr. and was told by the nurse that she only works part time now and that I should go to the urgent care or ER. I just thanked her and hung up. There is absolutely no point in me doing that, they just humiliate you or degrade you.
  2. saddlebred

    saddlebred New Member

    I don't know what the other thing you have is. I'm new to this. I know what it's like with the dc. telling you it's all in your head. I think some of the dc. need to live with this and have to go to all the different dc. telling them it's in their heads. I sorry you're having a bad time of it. I'll say a prayer for you and keep you in my thoughts.
  3. wanderingbluedragon

    wanderingbluedragon New Member

    Yeah, I was just diagnosed recently. It's hard for me because one day I was okay and the next my whole life changed. I'm in a lot of pain right now and that makes it hard to be upbeat. It really is the "invisible" disease isn't it? I have always tried to put on a good face for the world, so to speak. I just have so many responsibilities. I all ready had one chronic pain problem and to add these two to it too has been a lot for me to deal with. Adhesion disease is pretty rare. Adhesions are the body's natural response to injury. I had all my children by c-section (not by choice) and I started forming massive spider web like scar tissue inside my abdomen from the surgeries. These scars are called adhesions. They have no way to stop them from forming, it's a lot like CFS and FMS because they just don't know what to do about it. They are divided on the fact that they cause pain, etc. Anyway, this scar tissue attaches organs that aren't normally attached to each other. It can entrap nerves and when you move pulls on whatever it is attached to. I actually had one rip the inside of my abdominal wall before (owwww) just because I twisted wrong. It seems that this time it is all around my left ovary, at least that is what we are assuming at this point. I don't have a uterus or cervix anymore because I had Adenomyosis, endometrial hyperplasia, and pre cancer on my cervix. That was at 27yrs old, so I feel very blessed to have my three girls. I just feel like I can't get any Docs to do anything to help me for this pain. I'm not faking it and I'm not a drug seeker. I just need some relief. I feel like a weakling because I can't just take it and get on with my life. I also feel like a failure because I can't do the things I could do just 5 months ago. I just don't know how to handle this. Thank you for your support though. I like that everyone here supports everyone else. Even if I don't always post, I like to read what others write.

    I am amazed that I get more compassion from strangers than from my own family members.

    Thank you again.
  4. PVLady

    PVLady New Member

    Wow, you are having a bad time with doctors. Many of us have been down the same road, including myself.

    The only answer is to keep looking for a doctor who will help you. I truly believe our bodies don't have pain for no reason.

    Many pains are "referred" from other areas of the body. I was sick all over for two years, bad digestive problems, anxiety, insomnia, on and on.

    Guess what was wrong??? Gallstones.

    I did not have pain in the area of my gallbladder or any type of stabbing pain in the right shoulder (which is one major symptom of gallstones).

    The surgeon told me many doctors often miss diagnosing gallstones. While the gallbladder was inflamed with gallstones, I had swollen knots in the arches of my feet, and achey pain. I also had symptoms of gastritis, reflux, etc. All of this went away after gallbladder surgery.

    Two weeks ago I had my gallbladder removed by laparoscopy and today I am a different person. I no longer have to take any Nexium, stomach medications, etc.

    I do have fibromyalgia and a high blood titer of Epstein Barr Virus (showing as old infection) - but I believe when you have CFS/Fibro - any additional problems are much worse.

    I was so sick with the gallbladder disease, I lost over 50 lbs in the last year due to poor appetite.

    If you think there is any chance you have gallstones, ask your doctor for a ultrasound. It is a simple 10 minute test.

    Lastly, you might want to go to a medical group at a University. I take my husband to UCLA in Los Angeles. We have never been disappointed.

    It is hard to get appointments with the really good doctors, but you can keep checking for cancellations and usually get in sooner. It takes alot of persistence to find a good doctor - your experience is not uncommon.

    It is not okay for them not to really find out what is wrong.

    I know you can start feeling like nobody cares - but "you" need to keep caring and not give up in your fight to get the proper medical treatment. I have run across so many bad doctors, but there are good ones out there also. Don't give up.
    [This Message was Edited on 11/21/2006]
  5. kellyann

    kellyann New Member

    I care! And our Lord God cares! He is always there to listen to our prayers!
    Have you thought about going to a pain clinic? Maybe you could get a referal from your doctor to go to a pain clinic. They usually will prescibe pain meds. I went to one for several years. It was a pain sometimes because I had to go every month to get a refill on my meds, but at least I got them.

    Now I go to a Fibromyalgia & Chronic Fatigue Center. It is very expensive to go there. But I can have my prescriptions mailed to me once a month. Much easier on me. And I have a lot better medication.

    But still, if you could get into a pain clinic, it would be a great start for you. Have you ever been to one? If your doctor won't refer you, look one up and go anyway. You need to do this for yourself. You can't keep on functioning like you are now. You have got to find some relief.

    I had endometriosis myself, I know how that hurts, I can only imagine the pain you must have! I am sorry, and I wish I could do something for you!

    Take care of yourself, get some rest!
    Jesus loves you and so do I!
    Kellyann
  6. Boo3

    Boo3 New Member

    hi sweety i 2 am new at this site..and like u were raised by my grand parents..(my mom was and is in m life but after her divorce when i was very young we lived with "granny & papa" after she remarried years later i choose to STAY)..i lost them within a year of each other.so i know exactly how uu are feeling. that wsa in 03 & 04.
    in jan 05 i was dx with eppstein barr virus (EBV),CF..the doc back home in texas would at least prescribe me med for pain, and give me b12 shot ect....i have ALWAYS been the strong one of my family ( no siblings)but right now i wonder about me. since i was dx with ebv and cf i have good and bad days..but since january 06 i just havent felt like i used to either. my body hurts, i feel TIRED,run over,my neck feels as if its gonna fall off( does any one else feel this way)cant slep, just tried lunesta that metalic taste made me sick.now trying rozerem lol well here i am at 2:35 AM so that must not work..i stay depressed at times... and ur right does any one care..
    my husband knows something isnt right and he does care..
    so in that respect i am very lucky.
    i read the msgs here daily and often wonder how others get "things" through their doc's head..this past jan (06) i moved outta state with hubby ( oklahoma) quit my job of 14 years (which i had to take a leave in feb 05 due to the ebv and cf)i maintained out house in texas but ended up in georgia at the time with him now until i went back home.he was transferred here in january...sooo i had to start over with a doc..he does lab it show part of the ebv is elevated and part isnt..i dont really know what that says..he says it usually isnt like that..i was just there last week..so depressed and "achy".well i got new rx for the depression which i started this week..i have zanex for aniexty...i also have to take a thyroid,bp ( borderline) harmone. I HATE TAKING PILLS....but.......like US ALL WE HAVE 2.
    like i was suppose to go to doc monday well i just didnt feel like it at all..and canceled.i will go next week..i KNOW that isnt helping me..but then i feel like the doc's dont listen either. i mentioned monday something about FM and he just kinda blew that out the window..
    so i totally understand just how uu feel along with others here..i found this link about a month ago and find the info here very interesting and SUPPORTIVE...uu just hang in there and know that YESS SOME OF US DO CARE...and are HERE for ya...
    sorry about rambling on about myself...maybe its coz its nearly 3 AM and the grammar and i am not really with it..
    just plz take care and know we are here...for ya..
    aww and ur 3 sweet lil girls, enjoy then sweety as they grow and leave early...
    i hope that you and ur family have a good thanksgiving..
    hugzzzz to uuu and girls
    and sure hope to keep in touch with ya..

    always here for ya..
    Boo

    plz try to keep SMILING :)
  7. ANNXYZ

    ANNXYZ New Member

    I pray you will find a good doc and the right treatment .
    I knew a lady with adhesions after surgery who suffered greatly . To have this on top of CFIDS must be a nightmare .

    Most of us are on anti depressants , and they can help significantly with moods . The hardest part is feeling so weak and finding the resolve to keep searching for answers and hang on to hope.

    Most of us do not find a CURE , but many of us do
    improve and find things that make the illness more bearable.

    If you have not been tested for infections : PLEASE DO THIS . Most of us have one to three chronic infections like CMV, HHV 6, and usually EBV. Also, if possible , get a test for lyme disease . MANY < MANY , of us find after years of sickness that we have lyme disease . It can be transmitted by mosquitoes and flies , not just ticks.
    The most RELIABLE test for lyme is Igenex Labs wesern blot . I was diagnosed ten years ago with CFIDS < only to find I have lyme disease. Without treatment , improvement is impossible.

    Things that members post that have made a difference in their health : Anti depressants for mood and anxiety,
    sleep meds like trazadone for stage 4 DEEP SLEEP,
    magnesium , B Vitamins, amino acids , essential fatty acids ( fish oil ) and B 12 shots .

    It is very important also to address any bowel issues , as most of us have issues with this at the onset .

    If you can get deep sleep , improve your moods , feed your cells the most important things they need to repair
    your tissue , you will see progress and life will GET BETTER . It looks hopeless now , but improvement is possible, one step at a time. May God be gracious and lead you to the steps that allow you to heal.

    We do care for you !
  8. wanderingbluedragon

    wanderingbluedragon New Member

    Thank you all for your messages. Everyone here is so kind. After I went offline last night I cried to my husband about how I feel like nobody will help me. I think he really didn't understand what I've been going through until that moment. He said I should find a different Dr. that will treat me. He is angry that the Dr.s where we live (yes it is a rural area) are so behind in the times. We are going to try to find someone in Reno, NV, which is about 80 miles from where we live, so fairly close. My friend and I do have the same Dr. That's why I'm so frustrated. She treats my friend's pain but not mine. I see her Dec. 1st and I am going to tell her that my pain is way out of control and the antidepressant is not cutting it. I am also going to ask for a referral to a Rhuematologist. I am on Cymbalta, Provigil, Rozerem, and Ibuprofen. That's it. I have Ultram for the adhesion pain, but it makes me sick. I took some last night cause I just couldn't take it. If you have any suggestions on a good Dr. in Reno, let me know. Thank you all again, I feel much better emotionally.
  9. Mikie

    Mikie Moderator

    It can take some time to find good docs but they are out there. Go up to the purple strip and click on Doctors. You might find one recommended close to you. I hope so.

    I'm glad you found us here. In the beginning, it's scary and overwhelming. There is a lot of wisdom and caring at this website. There is a lot which can be done for our illnesses. It can take a bit to find just the right things to help. Everything which has helped me is something I first heard of here. Good luck. You are in my prayers.

    Love, Mikie
  10. Mikie

    Mikie Moderator

    Is a world-class expert on CFIDS. He and his then partner, Dr. Cheney, were treating patients in the Incline Village CFIDS cluster outbreak in the mid-80's. Both docs have worked tirelessly to help people with these illnesses.

    I don't know the other doc.

    Love, Mikie
  11. ANNXYZ

    ANNXYZ New Member

    Epstein Barr ? Most of us have it and many of us do find improvement by treating it . Read jolielulu's posts .

    I took valtrex at high doses and began to function at a better rate after three or four months. Before that I was in bed a LOT .

    I beleive the evidence points toward infections causing most of our problems , though there may also be an underlying immune system defect .

    My doctor used Dr Martin Lerner's protocol for EBV
    ( Lerner can be found via google) and it did help .

    Along with antiviral drugs , you can also take herbs like artimisinin , samento , and supplements like
    colostrum and beta glucan , or mushroom combos ( which stimulate white cells ) .

    If you stimulate a burdened immune system , and attack infections, you will most likely improve .

    Check out Ken Lassesen's site : Cheap help by googling those words with his name. He has great suggestions and ideas .

    I can not overstate how valuable an Igenex Labs lyme test could be to your health . It is VERY often the underlying problem of our disease and Igenex has the most RELIABLE test .
  12. lenasvn

    lenasvn New Member

    Go to the doc your friend goes to. Don't waste time with this doc you have now. I get the same "treatment", nothing, mild pain relievers, etc. We have a daily life to fullfill, and these docs are there to make sure we can do that. Docs have this one very important thing to follow:"First, do no harm". Docs might think that stronger pain relief is "harm", but if you can't function as normal as possible, the harm is already caused, not only to you, but to your children and your work.

    I bet you are probably swamped with duties,but I personally have a counselor for my PTSD and other issues, I usually end up "venting" about my daily life in general. We women need to talk to feel better in spirit while we battle daily life.

    HUGS!
  13. Mikie

    Mikie Moderator

    Who have improved have found good docs who are willing to work with us if we do our own research. My first doc when I got too sick to work admitted he knew nothing about our illnesses but was willing to learn. He was a jewel. We were true partners in my healing. I eventually found a like-minded specialist and I owe much of my success to them.

    I researched like a woman possessed (I was). I printed out what I found, highlighted the important stuff, and made notes in the margins. This helped my docs save time and get right to the info which was crucial.

    There are so many facets to our illnesses and healing is slow and complex. We have to fight our illnesses on as many fronts as possible because there is no one thing which does it all. I have found several things which have been God sends to me but even those are not cure-alls. The good news is that if one searches and has a good doc, healing is possible. Good luck.

    Love, Mikie
  14. NyroFan

    NyroFan New Member

    wanderingbluedragon:

    My best advice: rest, rest, rest and rest some more.

    I know it sounds dumb, but i have found it makes a big difference in how I feel and deal with various things.

    If there is no time to do this, I would make time.

    I hate to say it, but you seem at your wit's end and need a good rest.

    Please, honey: get some good rest.

    nyrofan