Going on 2 1/2 years of constant painHow do you all do this???

Discussion in 'Fibromyalgia Main Forum' started by PepperGirl52, Mar 10, 2007.

  1. PepperGirl52

    PepperGirl52 New Member

    Please, for God's sake, someone, anyone, let me know!!

    How do you finally come to grips with the pain that NEVER GOES AWAY???

    It's like being stung by bees all day long, and/or having a dog gnaw at your arms and legs, and a kitten scratching you all day.

    People who do not have this, just don't get it! It's relentelss, unfreaking, unbelievable, unreal!

    It's like having a tooth ache that never stops-any awful pain you can think of that just goes on and on and on and on. And let's not even get in to all the side effects and costs of all the meds you take, that don't even work, except maybe 50% of what they are supposed to!!

    How do we continue to do this? I just can't imagine coming to this board in another 2 years and re-writing this post again! WHAT DO WE DO???? PG
  2. Shalala

    Shalala New Member

    There are some people on here that have had it for decades.
  3. clerty

    clerty New Member

    I have wanted to give up more times than I can remember
    and yes it feels like a life sentence never having good days what you need is a support network I know talking to my psychtrist helps me but it does not take away the pain and dizzyness but it can help to deal with it.
    perhaps you need you pain medication looked at !!!
    I feel for you!!!

    Clerty
  4. TallMOM

    TallMOM New Member

    Visit your doctor and let the doctor know about the pain. There is a lot of pain relief, and you may need more than one medication. If after you start on a pill, and think this is not helping call the doctor to try something different.
    I use a heating pad on my back, others like cold. Just when you think you are on top of the pain, and new one shows up. Always ask for samples, or order a few to try.
    Jan
    [This Message was Edited on 03/11/2007]
  5. joeb7th

    joeb7th New Member

    In the last week I was kicked out of 2 ER's !

    And the way you phrase this Peppergirls, freaking "unbelievable"..is exactly what I want to say and SCREAM!

    It is a living nightmare...and what makes the nightmare even worse, is that except for people like us and on this board...

    People in the real world and the medical community of this great caring compassionate country of ours don't want to hear or "believe" that we are "that" ill and hurting and disabled and being tortured every day of our lives!


    I mean TORTURED!

    I had no clue 1 and 1/2 years ago about immune system collapses and diseases! NONE !

    I could not imagine that a person's body could feel so bad in so many ways every day...and the doctors can't tell you what this is ???? AAAGGGHHHH!!! Talk about a nightmare within a nightmare!


    And I swear, they ( doctors and the medical community-hospitals, ER's, clinics, etc ) have convinced themselves that we can't be in this much pain and feeling this sick and weird and everything else, or we couldn't drive around, get up and walk, come to their offices, etc.

    I have news for them. There are so many times when I feel I may not make it to or through any of these activities. And I often feel as if I am about to keel over, pass out or have a panic attack when I do go to these. But I do them all in defintie pain.

    But I don't tell the nurse or doctor this. I learned to not say it all during my visits. When I did I upset the doctors and got treated like a nutcase with prescriptions for anti-anxiety and anti-depressant drugs.

    And there are MANY TIMES I DON'T make it to or through these activities. But they don't know this. You know why?

    Because I don't call them every time I can't make it to or through these and when I am in a fetal position in bed and I lay there suffering and praying all day.

    They don't KNOW how much we are TOTALLY disabled so bad, that the only way we could come to their office that day is on a stretcher. Then if we did, then maybe, just maybe they might believe we are being tortured as much as we say we are and we aren't exaggerating, and they MIGHT send us to better staffed and equipped facilities, even if it means Harvard Med school or the Mayo Clinic or Johns Hopkins!

    This last week I had my wife drop me off at 2 ER's as I was being so tortured with pain in so many areas and weak and nauseous and feeling like my nerve system was being electrically shocked and this tensed up my entire body and muscles so much ( yes, like being electrocuted ) that it raised my blood pressure, cut off my circulation to my head to where I felt dizzy, off balance and like fainting.

    When I checked into these ER's they "insisted" I give them one main cause for coming in there...and when I did that's what they wrote down and that's what they addressed. When I tried to tell them that my entire body felt like it was under attack ( an immune system collapse does exactly this ) they just stared at me in silence with a look like I should be in the psyche ward.

    I was talked to like a child. The first visit they said they wanted me to take morphine. I said I couldn't because the first and only time they gave me this a couple of months ago, it felt like my head was going to explode and I got so nauseous .

    So they gave me something called delauded?

    Oh My God ! This hit me worse than the morphine! I shook like a fish on a boat deck for minutes and cried out. My head again felt like it was going to explode. The pain was unbelievable. My face skin felt like it was on fire. My entire nerve system felt shocked and sick. I shook and called out and the nurse got irritated and said " calm down. " and walked out of the room. I got real nauseous again and this lasted until the next day. Since then I have felt 50% worse than before.

    I have a strong feeling that my nerve system IS DAMAGED and that this would explain why these two powerful pain drugs affected me so much stronger and painfully than a normal person. I believe my nerve system is on hyper-alert due to this damage. I feel everything 3 times stronger than normal. Temperature extremes, stomach pains, muscle pains, etc.

    But run this by the ER and they just stand there, say nothing, and move on to the next patient. I am sure they circle their ears after they leave your room and go back to their station or to the next patient.

    I beg to be admitted for a complete evaluation, but never once have I ever been admitted to a hospital through all this except the time I fainted and had a 3 and 1/2 second pause in my heart beat. That was from the brady cardia I had developed for the first time in my life and maybe from losing 40 lbs in 3 months from not being able to eat!

    The second time I went back to another ER two days later last Wednesday, as I again felt like every part of my body was failing. Things were that bad all over, but specifically my GERD, hiatal hernia and gastritis upper intestinal area problems were in so much pain I was literally crying. And I was tremoring and shaking and my legs could barely hold me up as the rest of my body crashes when any other single part goes into a crisis.


    They had me drink a mylanta, lidocaine milkshake and took my blood and urine and came in after 1 or 2 hours and said I had to go home and see my family doctor.

    I tried to explain the entire explosion of pain, weakness and failings of all the rest of my body and they simply ignored me. Off I shuffled to my crying wife who can't take any more of this herself.

    Tonight I contemplated how I feel through out my body.

    I have tendinitis, gastro problems in upper, middle and lower intestines. I have a screwed up digestive system, I feel naseous and no appetite most of the time, I have bronchial asthma that is sore, makes me cough and exhaust me, I have sinusitis, and scaring in my left lung, I have nerve twiches and pain and prickly feeling through out the inside and outside of my body. Even my penis and bladder and even my anal area get these sharp twinges and when this happens I get a prickly feeling somewhere else on my body.
    My feet get these sharp twinges and pains too and same thing, some other part of my my feels these prickles.

    My bladder feels weak and odd. My stools are so unpredictable. I have a Vitamin B-12 deficiency ( in the 100 range ) and how long has this been going on? Could I have pernicuous anemia? I have super low testosterone levels. Whats this doing to me?

    All of these things have been diagnosed in just the last 6 to 10 months.

    The first 54 years of my life I was fine. I never ever went to hopsitals like this and cried amd fought with the staff about my feeling so sick I could die versus them saying to just take atavan and go home.


    I am so depressed from not only my body failing me so and feeling so tired and sore and tense and sick and fainty and nerve pins and pricks and on top of all this, is this almost science fiction horror movie awareness that there is no one out there to go and tell this too who will believe me in the medical community ! Is this world or our country MAD ?

    I dream of hitting the lotto and I would go to some other country like England and tell them what has happened to me. And I would hope and pray that they would take me seriously and do more to try to find out what is happening to me and to try to fix it .

    I wish the same for all of us.
  6. jole

    jole Member

    Each and every day is soooo hard, but honestly, the years have gone by very fast for me. I think because I don't have anything in my life happening that I can use as a time marker, plus the fact that I'm usually so foggy headed I don't know what day it is anyway.:)

    Don't mean to make light of this, because there were many days I honestly didn't think I would ever live long enough to say I had it for over 4 years. Some times I don't think it has been worth it, but then I see the smiles of my grandbabies and know I would do it again.

    Here's to a better life for all of us......
  7. blkkat

    blkkat New Member

    I KNOW HON THIS DD SUCKS I HAVE SEVERE PAIN 24/7 AND THATS ON ALOT OF PAIN MEDS. ONE THING I DO KNOW IF IT WASNT FOR THIS SITE WELL I DONT KNOW WHAT ID DO. PLEASE HANG IN THERE. DO YOU KNOW HOW TO VISULISE- (CANT SPELL?) ANYWAYS A HOT BATH,CANDLE, BATH PILLOW,SOFT OCEAN SOUNDS W/LITE MUSIC PLAYING I CAN GO TO THE OCEAN IN MY MIND PRETTY MUCH PAIN FREE FOR ABOUT 20 MINS, THEN GOING TO BED IS MUCH NICER. WE ARE HERE BFOR YOU ,WE UNDERSTAND AND CARE, GOD BLESS - BLKKAT
  8. California31

    California31 New Member

    It can change your life....not a total magic bullet...but can certainly help. Good luck.
  9. elizajane40

    elizajane40 New Member

    My pain has led me to E/R's and I have gotten injections of morphine in my iv, valium shot into the muscle in my arm...etc. If they think I want to go to the ER in the middle of the night to fake out to get pain meds they are out of THEIR minds! I'd much rather be laying in bed comfortably without pain..sleeping!

    Yes, this "syndrome" is horrific. Pain all the time, fatigue all the time, side effects from meds, meds that stop working and then I have to "find" the right one again....

    But...you can plan. Mine is to do gentle stretching exercises and take my daily meds and walk if I feel well enough.

    If I get in too much pain after that, then I take my 'plan B" meds. Hydrocodone, Flexeril and XaNAX. I also do a "moving stretch" thing called clocks and have icing techniques that I learned in physical therapy that help...

    If all that fails...then I go to the er. I have good and bad days...but I have not been back to the ER since I went through a Chronic Pain Therapy Program. You may want to check to see if there are any in your area...

    Good Luck and God Bless....ElizaJane
  10. suzette1954

    suzette1954 New Member

    The 1st yr after I had to leave work, I thought I would go crazy. The pain and fatigue makes us insane enough but suddenly being alone( Im a people person) every day and being up half of each night is awful. I thought of suicide many times but one day my PC dr. got me to go see a psychologist and Ive never thought of killing myself one time since. He doesnt know he is one of my angels. I have a wonderful family dr who cares greatly for his patients and I am blessed.

    I go to see the rheumy today and Ive cried all morning because I dont want to go. Last visit, he said I was taking way too much pain med and he guessed I should go to a pain clinic. He has made me call his office every 15 days for mths to get a refill on my darvocet. Im on 5 different things for pain that combine muscule relaxers or supposed to help with sleep but they only take the edge off. At night is the worse. When everyone is asleep and you are sitting up at 2:00am waiting for the pain meds to take effect.

    I hate feeling stupid because you cant remember anything or anyones name. I have a notebook by the phone now with everyones number including my husbands for the days when I cant remember his #.

    The water is my salvation. When Im in the water, I feel no pain. I have a great water arobics class on Tues that I love and it is truly wonderful to not be in pain and at the same time get to smile and talk to people besides the dog and my sweet husband. But then I have to get out of the water and all of the pain comes back as I climb the steps from the pool.

    Hang in there. Ive had to accept that the life I knew is over and I have to live this way now. I thank God everyday for my blessings and I will pray for you as I do for all of us.

    Suzette
  11. mujuer

    mujuer New Member

    I was just at the emergency room last week. I just couldn't take the muscle spasms a minute longer. I just told them that I was in alot of pain from my fibro and they got me right in, gave me a shot of something called fornal (i don't know if that is the right word or not) and two xanacs and kept me for about 45 minutes to see if that did the trick. It helped so I went back home. The next day it started all over. I have been in pain for three weeks straight. Number 10 pain. Finally, finally, my dr. gave me some stronger muscle relaxers. I was on Robaxin but that didn't cut it. Now I am on Cyclobenzepren four times a day and it has saved my life.

    My mother is here visiting and she has showed me a trick or two to help. Of course I was skeptical and didn't want to try it. Imagine being almost fifty years old and being told what to do by your mother! Well it looks like she was right. These are bandaid tricks but they help. When your having those awfull horrible muscle spasms all over your body go fill up the tub with as hot of water as you can stand and get in. I don't know what it is or how it helps (not a scientist) but the spasms immediately stopped. They started back up about thirty minutes after I got out so I got back in. They were gone for the rest of the night. Last night my legs started spasming and she rubbed them from the knee down in long pulling motions and they left.

    I hope you find someone soon to help you. This is not something I would wish on my worst enemy. God Bless
  12. Shalala

    Shalala New Member

    ((((((((( hugs )))))))))) don't tell your wife ;-) lol

    I was embarassed to tell anyone I have those sharp twinges of pain in my anal area too!!! Are you first one who has mentioned this? They are horrible and sometimes double me over in agony. I am setting up a colonoscopy (sp) now. Just got the paperwork to fill out. I just turned 53.

    I hate to go to the ER. It is a circus and ends up being a waste of my time and money.

    I hope you feel better soon.
  13. mujuer

    mujuer New Member

    Oh yea, I forgot, I found this on a fibro website (can't remember (fog) just the other day that said that there has been studies that the medical community is changing their thinking that they now are starting to think that this (fibro) is not a immunological disorder but a neurological disease!!!! Also, they showed on an m.r.i. a brain scan that shows that we (fibromites) do experience pain at a much higher level. They are going to present these findings at the national Rheumatology Association meeting in October. I hope this changes things for all of us.
  14. puffy1

    puffy1 New Member

    I also have had this thing going on15 years now maybe longer.

    I just know when I first started feeling bad I didn't want to talk about it thought someone would think I was crazy. so I didn't.

    I think my started with having mono when I was young. and a series of events after that just kept making it worse. I have had those really bad bad days where I just sat on my couch and cried the pain was so bad and I could get no relife.

    lindyl39:

    just curious why do you take 2 mussel relaxers?
    I was fourtunate enough to get one flexeril after years and years of seeing one doc who never offered me anything but anti inflamitoires my new doc gave me those.

    And I had a Rheumatologist he dropped me said he could not do any more for me and said unless I got refered back to him he would not see me any more.

    puffy
  15. amorifera

    amorifera New Member

    10 yrs. ago I was in bed in the fetal position in pain for 6 mths. Then I went to an Orthopedic Doctor. While I waited in his lounge tears just ran down my face, it was so painful to sit there. He checked my trigger points and gave me xrays of my back (which were of course perfect, almost all fibro tests are). Then he told me the good news was I wasn't terminal, but the bad news was my pain would remain chronic for the rest of my life. I was about 42. He put me through a regiment of different ibuprophens none of which worked. Then one day as I cried and cried that I couldn't take anymore, he gave me a pain med in the opiot family that works more naturally in the body called Ultram. It was the first thing to actually work well enough to get me out of bed. I literally through my arms around the Doctor and hugged him with happiness. I still wanted to fight the dizziness and fatique (also my husband still had to help me sit up in the a.m. and give me my pain med.). I spent 2 yrs. and way to much money trying every physical therepy and homeopathic therepy I thought might work even accupunture and inner ear therepy. And so many tests over the past 10 yrs to numerous to mention. I have found the most understanding specialist in this field are Rhuemitologists. They are completely educated about what Fibro is. They can't cure us but they certainly believe us. Mine also gives me a muscle relaxer called Soma ( I have tried others that don't work), This one helps my stiffness and depression also. I continued working for 8 yrs part- time but can no long keep up the struggle at 52 yrs of age. I just went on disability which does recognize Fibromyalgia if you keep every single record of MD's, dates, specialists, and dates of tests. They eccepted me my first try which can be unusual ( keep trying, you will get it), because I worked for almost 20 yrs. in or around the med. profession, I'm good at med record keeping and "you" need to be too! Slowly swimming and strechting in a warm therepy pool that your city might have for people with arthris, is the only physical activity that helps me stay limber and feels great to be relieved from gravity, when I can get myself to the pool. Hope this gives you some ideas to try. We are all different in how we react to treatment. I can no longer afford or wish to do more than I am doing now, so I keep my mind busy so I don't think about it. I oil paint, sew and do some Interior Design. I'm hear to listen to anything my children and grandchildren need to talk about and they all love me dearly. And I know they need me to stay strong as I can and they understand when I'm not. And yes That does make it all worth while!
  16. Katchina

    Katchina New Member

    hi

    I have had M.E. for eleven years, I have constant joint an muscle pain, I have to admit sometimes I do just want it all to end-but I would never ever top myself because I couldnt do that to my daughter, I know that this ME has screwed up my life but why should I let it ruin her life, too?

    So I have just had to become very brave and put up with it, but of course I also do whatever I can to reduce the pain levels to a more bearable level.

    I have to take co-codamol and tramadol four times a day every day, regularly, every four hours on the dot- I can tell as soon as it starts to wear off.

    Lyrica is very good for reducing neuropathic pain but in my personal experience the side-effects were too much for me to cope with, so I dont take it myself, but everyone is different and lots of people swear by it. There are some stronger things out there, oxysomething other other, someone will know about it I am sure.

    I also use a tens machine (this little machine gives off very small electrical charges on skin pads to interrupt the nerve pain message route-I bought one off the internet for forty pounds or so and it does help me a lot)
    I use microwaved wheatbags, I think wheatbags are the best thing ever but of course both these methods can only help one small area at a time so they are just for the very worst bits when I just cant stand it.

    I am lucky too, that I am also a Reiki master, this means that I can use Reiki healing on the most painful areas- thats as long as I can reach them of course, its not a miracle cure and it hasnt cured my illness either, but it does help reduce the pain though.

    I dont know where you are but there are also special pain clinics here in the UK and you can ask your GP to refer you there, they will teach you how to use a tens machine etc.

    My aunt has FMS and she swears that foods from the deadly nightshade family such as tomatoes and potatoes make her pain much worse, so its worth cutting these out and seeing if it helps any.

    I hope you can find something that helps you to reduce the pain very soon.

  17. lilaclover30

    lilaclover30 New Member

    I have had this 3 1/2 yrs. and am 76. You are young and we pray to the Lord that researchers will find help for you and all you younger ones. Yes, it is so hard. My eyes are effected - i can't see this too long or read too long. Eye Dr.says "nothing will help."

    my hands and wrists hurt sooo bad now. The "mouse" doesn't help either. i am left-handed and I could hardly write a "thank you" a while ago. My right wrist is in such pain from this comp. I can't give up either. I have huge luimps on both wrists.

    At night, I wake up and my right arm is "asleep" and in terrible pain. It won't go away. There is no place to ilay my7 arm and hand that doesn't hurt.

    So much for me and pain. I have tried Ice/Hot and get some relief for a while.

    I know how you feel. I long ago gave up on ER. They just send me home. Ii have gone to a FMS specialist - 2 years ago- and he examined me quickly8 and told me to come3 back whuen it gets worse!!!! I will never go back. i went to a Painj Clilnic and he tried 3 different types of injections and none worked.

    In 2002, I wesd sent to a mental clinic, (I WOULD NOT have gone if I had known what it was)!!!k i was given the MAOI, Nardil, and it about killed me! i got to the p[place I couldn't talk, walk, and passed out 2 times. Neither my PCP or the3 wione who prerscribed it caught on to what was the matter til I about died. I firmly believe triggered this DD!!!

    Joeb, I am so siorry for you. It is soo-o hard when others don't believe you. I do and God Bless y8ou give you strength.
    Joan
  18. janie056

    janie056 New Member

    Today I was thinking the same thing! I don't know how long I can go on like this. Yesterday I had the worse flare ever, in bed for 20 hours! heating pads,pain meds, nothing worked. i just layed there and cried. I've had this for eight years and don't know if I can stand another eight.
    I've tried everything and everyones advise, but nothing seems to work for me.
    Now I cannot stay awake for very long, I fall asleep just trying to read a book, and that's after sleeping all night! I do beleive I have CFS as well, but this is new and have to see my Rheumy soon to discuss it.

    I don't know what else to say to you except lets try and hang in there, together, OK?

    Love and Hugs,
    Jane
  19. scruffysmom

    scruffysmom New Member

    Hi Lanti: Wow! What alot of good advise from everyone! I've had fibro for 12 years now, and it started out at a low level of 2 or so all the time, my resting pain level. It is now at a 6 or 7 all the time. It has progressed over the years, and I guess I have tried everything to help. The only things that help, not relieve, but help ease the pain are a form of gentle stretching yoga, and ultram for pain. I have tried it all!
    How to get thru it? There is no easy answer, if one at all. All we can do is live each day and do our best. If our best is to lie down all day doing absolutely nothing but hoping the pain will go away, then that's what we do. I used to feel guilty doing that - laying in the fetal position trying not to breath too deep cause of the severe pain. But not anymore. I have learned over the years that if I can't do it, I can't. It's hard to say no to the kids, grandkids, committees, etc. But you have to.
    Please try all the therapies recommended. One will work for you that doesn't work for the rest of us. This website has helped tremendously!!! I don't know how others live with this dd without it! My brother has a severe case of fms and won't take anything for it. He only gets massages every 2 weeks. It's a "macho" thing, I guess. I get angry with him for not trying to help himself!
    I feel terrible for JoeB. His email is filled with pain and anguish. I have been there, done that, too. The medical community thinks you are a drug seeker if you go to ER for fms pain. I sometimes wish we could wear a cast or bandages on all the parts of the body that hurt, then we might get the respect and help we deserve.
    Hang in there. You are not alone. I have found that even horrible flare ups that last me several months do have an end!
    scruffysmom
  20. StephieBee

    StephieBee New Member

    Im 26 and Ive been dealing with this since I was 18. I was diagnosed until I was 20 though.

    I have tried so hard to keep a job but I end up back on disability.

    In the beginning all I could think was "why me?" but after 8 years of this a bad day 8 years ago probabably is a wonderful day for me today.

    I would take the advice of the previous posters.

    For me it has been a mixture of techniques...like using heat and light massage, with a daily regimine of too many meds than id like to be on! (but they keep me functioning)

    Take care,
    Steph