I'm frustrated, feed up and crying in pain

Discussion in 'Fibromyalgia Main Forum' started by enjoysue, Jan 22, 2007.

  1. enjoysue

    enjoysue New Member

    I'm usually able to rise above everything and have a sunny disposition and keep on keepin' on but I am so sick of this severe pain and neurolgia.

    I guess this mood got worse when I talked to my sister who has arthritis in her knees and hips which I do too. She's been going to PT and she gets to have an ultrasound and hop in the whirlpool. At the end of the conversation I thought I'd speak my mind and told her that I was jealous of her and that I wished that I could get that kind of treatment and that all I got last month in therapy was a supposed fibromyalgia program (which was just literally old outdated information that I would correct her on having to bite my tongue at times lest she think I was a know it all.

    I was put on a upper and lower weightlifting program when it specifically appeared the script was for something like ultrasound or heat treatments....something for my pain.

    I'm so sick of all my other health problems wastebasketed into the fibro. My severe pain never goes away. When people talk about breakthrough pain I don't know what the hell that is. I never get relief PERIOD.

    My life is wonderful if it were not for the pain. I don't have stress other than from the pain nor do I carry baggage from past issues.

    I guess I'm finally feeling the effects of having both my pain doctor and now the chiro give up on me in the same week. I should have known something was up with the pain doc because I supposedly won the 'on time' contest and had my copay brought back saying that I had overpaid and I know I did not. I walked out of the appointment and said "well at least I got my consulation prize." I was joking then but I'm not laughing now. My prize? A coffee cup with tea in it, a pill container and stress ball all with the pain practices name and phone number on it.

    She walked in and said "congratulation, (shook my hand) I've tried everything I have on you." She never said anything like I'm sorry I couldn't help you or anything.

    The chiro won't touch me because I told him to not touch my neck that even when I saw him in October he made me worse and that's when I started to get headaches and my head feels so heavy and I can't get it comfrortable. He cracked it the other day and today I couldn't even read a newspaper because I couldn't bend my neck without severe pain and stabbing into my back too to read a newspaper. The only semi relief I get is laying my head backwards in a chair.

    The chiro said to get another MRI and to have another doctor prescribe it so medicare would pay for it. I said I doubted that that would happen because everyone thinks this is all in my head. He let the nurse do this handheld vibrator thing on my back which feels fabulous and he left the room and he never returned. Supposedly he was on the phone when I asked her if I was supposed to come back. He didn't even touch my right arm which is why I went there in the first place cuz he helped it immensely in October when the arm was nearly lock in a bent position.

    Anyway, I'm sorry for complaining and I'll probably regret sending this but I just want to be heard cuz I'm fed up. Even my hands are a basket case, hardly able to pick up anything and I don't dare pick up anything in a store other than groceries or I will drop it. Holding a newspaper is torture. You guys all know this stuff too.

    I'm just worried that I won't even go from a cane or to a walker because I don't have the strength or the ability to hold anything in my hand or arms. Okay, I guess that enough of my pity party. And to think just a few months ago I had a neurologist as me "WHY, are you disabled?" Nobody's got a clue.
  2. RedHeadEMT

    RedHeadEMT New Member

    I completely understand what you are going through, because I just posted almost the SAME thing a few days ago.

    All I can say is...

    We all have days like this and somehow, amazingly, they pass. Keep your chin up. I know it's tough and it all seems HOPELESS. I have been in your shoes so many times before and I always feel like it's the end of th world, like things couldn't BE more miserable, but the next day or in a few days, I wake up and feel just a TEENY bit better, then the next day a TEENY bit better...and so on. Not necessarily PHYSICALLY, but emotionally. I guess eventually, you'll feel better inside.

    Just don't give up.

    Love,

    K

    PS-Your doc is an IDIOT.
  3. JLH

    JLH New Member

    enjoysue,

    I'm so sorry that you are feeling so miserable. I've been in this shape, too. I'll cry and cry and get so depresses at being so sick.

    Do you live in a large enough town that you can go to another Rheumatologist for a second opinion? Maybe ask around and find someone who other people like and respect?

    Is your primary care doc one that you can sit down with and say "look, I feel awful and I REALLY need your help--please work with me!"?

    Are you taking anything like Cymbalta or Neurotin to help with the pain? I am on both of them and they really help. I read your bio, but didn't find out what meds you are on, etc. Are you on any pain meds like Ultram? I also take the muscle relaxer Zanaflex at bedtime.

    I know if I were you and still taking P.T. and doing the weight-lifting, I would tell them to stop that because it was not helping and to begin something different--and suggest something like your sister is doing, or some type of warm water exercise. I've taken the Arthritis Association's warm water aerobic classes before and they really help.

    Have you had xrays and an mri of your entire spine? A lot of pain generates from back problems.

    You probably have arthritis in your hands, but it really sounds like you might have carpal tunnel in them--the problem with not being able to hold on to anything, etc.

    I take a lot of hot showers to help relieve the pain in all my muscles and joints, as well as use a heating pad on my low back while watching TV in the evenings--but the heat on my back is for a pinched nerve and other back problems.

    I also use ice packs between my shoulder blades and on the base of my neck to numb the pain at times.

    I certainly hope you can find a doctor who is willing to listen to you and help you. It sounds like you still could use a few more tests and a change of meds--even thought I don't know what you are taking--but they must not work or you wouldn't be in this shape!

    Hugs to you for a better day tomorrow.

    Janet
  4. mamagibby

    mamagibby New Member

    God bless you Enjoysue,
    I just wanted you to know that your not alone in fighting this DD!
    I have fibro also. I've been through the ringer with doctors and specialists. The latest was a rhemytologist(sp) that didn't believe in Fibromyalgia, that it was just a catch-all name that others put on you when they couldn't REALLY diagnose you correctly! I picked up my purse and left! BYE!!!

    Luckily, I have a fantastic internist who correctly diagnosed me with fibro, 5 years ago. He;s gotten me from 82 pounds to my current weight of 112 ( I'm 5'1"). He also dosen't believe that we should be in agonizing pain-it just makes it worse, it's a vicious cycle of pain and stress...
    But it's been a very rough ride both emotionally and physically. You have to fight this battle and find a good doctor that's willing to work with you.

    For me being diagnosed with fibro was and is bittersweet. I'm grateful to have a name for this elusive condition and emotionally it's validating- NO, it's not all in my head!!
    But also sadness because there is no majic pill to end the relentless pain.

    Keep the faith we're all in this together, and the're discovering new things all the time about this condition.
    Don't give up. Find a doctor that will help you, there are some good ones out there.

    I'll be 49 this year and they think I've had this since I was 17. I've learned to take it one breath at a time.

    I drop things all the time too! I'm new to this site, what a find, just to know that were not alone, that there sadly are others fighting the same war, but to know they understand completely how I feel.

    God Bless and gentle hugs,
    mamagibby
  5. do I hear you, I feel the same way, the pain in my neck/shoulders have gotten out of hand. I go to the dr. again next wk and am going to beg to go to PT for maybe some relief. I hate going as it costs me so much but I am desperate. This fibro is a nightmare isn't it. Even when I finally get a muscle relaxer from the dr. it doesn't do a thing, and keeps me awake! Hang in there.
  6. minkanyrose

    minkanyrose New Member

    sorry you are felling this way this happens to me also I have posted a few weeks ago also.

    sometimes life seems to get us in a stage of this is never going to change or one more thing added on top of another,

    I hope you feel better soon take the time to pamper yourself do what you want to do even if it is just to sit in peace and quiet and do nothing or participate in your favorite thing with a beverage of your choice.

    I get that way when I forget that me is important too. I hate this illness and wish so many things but I have to be real my life has changed and I have a hard time accepting that.

    Hope you feel well soon. pamper you you are special!!!!!!
  7. Mini4Me

    Mini4Me New Member

    Sending gentle love and hugs...
    Mini
  8. leubie

    leubie New Member

    feel better-----------take care-------wishing you the best--------love to all---------laura
  9. enjoysue

    enjoysue New Member

    for responding. Thanks s-elaine, desertsage, hangingin, leubie, Mine4Me, Minkanyrose, fibrobutterfly, mamagibby, prickles redheademt and jlh.

    It helps me to be reminded that this too shall pass, just so darn physically tired from itall. I've never had this much pain from the neuralgia nor had arms and hands that just don't want to work and it has me concerned. Do you guys get the constant feeling of restless leg syndrome and have a hard time standing for even 5 minutes? Like someone said in a post I can't tell anymore what is fibro and what is not. I feel for all of you because you do know what this is like. I just have a heart full of empathy for you all.

    I talked to one of my sisters last night and talked to my mom and dad and I really do have a wonderful family but I only talk about my pain for a little bit and they are changing the subject already. A nice little I'm sorry would sound really nice. But I fully understand that they have no concept of fibro pain and can only compare it to their own aches and pains. They see me at times looking fine but they don't know that I am dying inside from the pain. You all know how we play the game of just complaining every so often so they don't forget we still hurt lest they get sick of us and think we are complainers and run when they see us. I don't want to be a drag.

    I plan on getting the "Show me Where It Hurts" dvd next month along with the 0-24 fibro spray.

    My darn keyboard stopped working right after I wrote the message last night and I'm using an extra one my sister had.

    jlh, I really don't think my Dr. is gonna listen. She is kinda still new to me. I Probably have seen her no more than 5 times I'm guessing. I've not had good luck with doctors. Previously one moved to a different county and my last one before this moved to Texas and I so adored him and he was so thorough, kind and never hurried me. We won't even talk about the doctor who I had when I was in my accident and developed fibro!! Who I need is Dr. House!! LOL I need him to figure out the puzzle :) (It's a tv show for those that don't know)

    Oh yea, and we only have one rheumatologist for the whole county.

    The only meds I am on are warfarin, ambien and prevacid though the last 2 months I've been on samples of Protonix which is NOT working at all. I've got a few pills of flexeril left and then I am done with that. I've tried nearly everything. I got some relief from zyprexa til that wore off. I've not tried Mirapex or Requip and that's what I am going to beg for at my Dr. apt. on thursday.

    I've had problems with my stomach too since last Easter and she did a gallblader ultrasound and that was fine and she has refused to look any further and something serious is going on and I won't get into the gory details but to say I can only eat teeny tiny meals and I don't even feel like eating those. It's like I've had my own private bypass surgery! I lost 29 lbs. in September.

    Prickles, I live alone so I don't have anyone to get to use that on me. I actually stayed married longer than I wanted because he gave wonderful massages!! It's true! LOL Wasn't worth it though.

    Again, THANKS everyone!!!
  10. Mar19

    Mar19 New Member

    Oh, sweetie, I'm hearing you. This coming September will mark 10 yrs of 24/7 pain for me. I'm pretty sure I've had these DDs for the better part of my life, but it was Labor Day of '97 that I hurt my back at work ~ I've been in constant pain ever since.

    I know what you mean about the "breakthrough" pain too. My meds for breakthrough pain just serve as a bridge from one dose of extended release med to another.

    As far as doctor's are concerned? Don't wait until you're as old as I was to stop letting them bullying you around. After many years of submitting to their inflated egos, I finally learned that I was just as important as they were, better yet, I knew a whole lot more about my body and how I felt then they would ever know.

    I've not ever been rude, but I have let more than one doctor know that he/she needed to treat me with respect and as an equal. Since I've taken this "new" approach, for the most part, I've had a much easier time with doctors.

    It is a hard thing to do, that I'll say right up front. You go into a doctor's office, hurting and vulnerable, looking for help and instead you get ridiculed or treated like you're some sort of freak. It hurts. Well, it hurt me once too often and I became Assertive Patient.

    Don't know exactly how to give you a step-by-step plan of action, but I do know that with a little dose of self respect and confidence my doctor/patient relationships have improved greatly.

    mar
  11. EmberFae

    EmberFae New Member

    I hear ya!!! I can not believe the incopadent people out there calling themselves medical professionals!! They are still testing me for F.M.S. again!! and basicly having me run in circles to act like they are "doing something".
    The last thing I want to do when I'm in Pain..is track down specialist and Pain Manements doctor that will see a F.M.S. person..

    Your right NO-BODY Understands!!
  12. deliarose

    deliarose New Member

    Natural Killer Cell activity tested?

    This is one of the few blood tests that come back abnormal in a lot of people with fibro and CFS.

    I slogged round doctors for years, all the tests were normal.

    Finally found an infectious disease doc in Kansas City, who did this test. It was unbelievably LOW.

    He is treating me for a hidden or reactivating viral infection that I have had for 10 years. I'm recovering.

    You're new to this board, so you may not be familiar with the theory that a lot of these conditions are caused by stealth infections.

    If you can trace your illness back to an infection, then please check out this theory.

    Just search the board under "anti-virals."

    Good luck to you
    Delia
  13. deliarose

    deliarose New Member

    pls ignore my last post.
    delia
  14. enjoysue

    enjoysue New Member

    Desertsage thanks for the prayers, they are very much appreciated and I'll return the favor. *s*

    EmberFae, good luck in your Dr. search. I feel the same way about the whole process. I need to catch my breath for awhile and do my research. I'm too sick to see a doctor...if that is possible.

    s-elaine, I think I'd be in a loony bin if it were not for laughter. I was in a tornado in 81' and it was just days before my 1st wedding anniversary. I invited everyone over for an "open house." One has got to keep laughing because there is always someone worse off than you!!

    ar19, we have alot in common. I had to quit my job in 98' and fell on ice (at work) also but I fell in 95' I think. I've had back trouble since then and it's giving me alot of grief right now. I don't think I have osteoporosis though but my mom does. I have shrunk in height though so maybe? I'm so sorry your surgeries were unsuccessful. You sure have a pile of diagnosis. Both my pain and regular doc pretty much get stuck on the fibro dx and I was even once told by the pain doc that "we don't want to cloud over the dx of fibromyalgia with another diagnosis."

    I first started advocating for my own health for the last year. At my last visit with my internist I became aware of my shutting down when a Dr. insults my intelligence. I have issues with that for various reasons. Now that I'm aware of that I can remedy the situation. I've been practicing saying "you ought to be ashamed of yourself." I'll let you know how my Dr. appointment goes tomorrow.

    When I put all my trust and faith in God he healed me from my 6+ years of depression. When I went thru my soap opera divorce I thought he had abandoned me but he hadn't. All my trials in my life have been a learning and growing experience. I'm like a butterfly with wings now. I have a purpose in life to help others who have been abused and who are hurting both physically and emotionally. I'm a fighter, though I'm human and have to pick myself up again with others' help so thank you everyone for picking me up again.

    They say that your trials in life build character. I have so much character I think I need a shovel. ^evil grin^ ~Sue