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I've been in pain for 23 years, think I'm dying now, need some support!

Posted , 10 users are following.

Sherrylady
Sherrylady

Hi I'm going to be 55 on the 10th of January, if I live that long!  Can't find any good Drs here in SW Florida, I'm in constant pain, sleep only 2 2 1/2 hours a night!  I am so exhausted!  I was diagnosed with Fibromyalgia at 32!  I am totally disabled as I am allergic to all.Meds that are suppose to help. I am on pain Meds mostly and they hardly touch it, Xanax for panic attacks! Then 18 months ago or so I woke up in even more pain, excruciating pain in my hips upper legs lower back neck shoulders arms shin bones feet top and bottom upper back just below shoulder blades all the way up to top of neck into head, my skin even hurts!  I was diagnosed with PMR about 18 months ago by MD!  Put me on 40 Mg cortico Steroids, didn't help but kept taking by injection.  Told him I could not take steroids by mouth make me very ill.  Anyway they almost killed me!  My throat was swelling up, couldn't breathe well, heart racing!  I should have been in hospital, but didn't go!  I moved to Florida from MI in 2002!  Found a wonderful Dr. That helped me in every way he could!  He moved away about 3 or 4 years ago.  I cried like a baby!  I have been searching for a good MD ever since!  I have a pain Dr that gives me my pain Meds, but desperately need a good MD and Rhemotlogist!  Went to one, waited 3 months to get in, hour drive, nurse did vitals heart was beating at about 149.  Dr came in, I was in wheelchair couldn't walk hardly at this point, had no strength at all!  Anyway she bends down to look me in the face and says I am not a heart Dr. You must have EKG right now!  They rushed me downstairs to this facility and sat my wheelchair with everyone else!  Told them my name and so forth!  My MD had diagnosed me with PMR see rate 49!  All I wanted to do is find a good Rhemotlogist to take care of me!  Make sure his diagnosis was correct because the steroids didn't help pain at all!  Anyway I asked my husband whom was with me Thank God, to ask them how long to wait!  They said 30 40 minutes!  Told husband lets go!  The Rhemotlogist was not going to see me due to heartbeat! Which had been going on for years, and no one seemed to care!  I had been in and out of Hospitals with what I thought might be a heart attack, always same answer, must be Fibro! I just wanted someone to help me, as now I am too weak to even get to my 2 Dr appointments a month!  I am a smoker, I know, that it is bad for FMS and PMR and actually everything in your body, I am so far gone now, Emphazema, after 7 years of oxygen at night have been on for 24 hours a day now for about a year!  Can not can not sleep, ambien flexed il, pain Meds oxygen now so depressed and weak out of energy to even try anymore!  Praying to go to sleep and not wake up!  Which that is trying to happen too!  Waking in the morning not able to breathe!  Pray daily for strength to quit cigs!  Did quit twice once for 5 months then again for 3!  Helped me so so much with a little tot of my health problems cause haven't began to tell about all of them!!!  Am waiting now for in Home sleep test!  I was diagnosed with sleep apnea years ago, but not put on a cpap machine!  Cousin says he had a lot of same symptoms and sleep apnea ran in my family!  He's on me to get in right away for test because he got so much better after on cpap at night!  Know what, to exhausted and weak to type or tell story!  No appetite, don't care if I eat! I was about 132 when moved here, was up to 179 back down to 140!  I just don't know what to do anymore!  Liver enlarged, Dr did nothing, bladder problems, IBS, herniated disks in neck and back!  On walker and oxygen , I am paralyzed with where to turn or what to do, can't seem to keep fighting anymore!  Should have been in hospital at least 3 times in last 18 months!  Always get same answers, must be Fibro, although I had a oh crap can't remember what called, oh yeah heart cath, heart dr said muscle in back of heart not working properly!  On heart Meds for several years! Then was in again for something and had heart checked out again!  They find nothing and a younger heart Dr reads heart cath report, he says it is normal, go off heart meds, no good for you anyway!  I can go on and on!  Need throat scope had surgery since in FL for my vocal chords had pollops!  Have macular degeneration, wet in one eye dry in other!  Back on eye injections!  My MD never never had touched me not once!  He sits on his stool and types!  He gives me sends from his computer to front desk, if wrong, after just walking up front, have to make new appointment, won't rewrite scripts!  These are the kind of Drs I am running into where I am!  I have never seen such a poor bunch of Drs in my life!  All my Family back home in MI, so so lonely, can't go in sun anymore can't take heat, well now can't because can't breathe!  I am all in and figuring out how to just let go!  I can't even type anymore, nothing does any good!  Ty if you read this, I just pray for sleep, no pain, or a lot less, and some word called RELAX don't know what it means haven't for years!!!  ANY LAST HOPE HELP........

1 like, 17 replies

17 Replies

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  • EileenH
    EileenH Sherrylady

    Posted

    "I was diagnosed with PMR about 18 months ago by MD!  Put me on 40 Mg cortico Steroids, didn't help but kept taking by injection"

    If 40mg of prednisone didn't help within a day or so then it is very unlikely that what you have is PMR. One of the criteria to define PMR is a 70% global response of symptoms to a moderate dose of corticosteroids within 48 hours. For most people there is a response in hours. A moderate dose is 15-20mg/day so at the much higher dose your doctor tried you should have had a very good result.

    I'm so sorry you are so poorly and that you can't find a doctor to listen. Whatever you have sounds very like an autoimmune disorder of some sort but they are notoriously difficult to diagnose. Sleep apnea can also cause some very severe effects so maybe that will provide a clue. Has anyone considered lupus?

    I do wish you the very best for those tests and maybe someone will have a lightbulb moment.

  • Diana112
    Diana112 Sherrylady

    Posted

    What a terrible sentence you have been served.  I am so sorry that no one has been able to give you some relief.  Fibromyalgia brings a load of other conditions including your IBS and sleep disturbance and must have left you feeling absolutely dreadful for a number of years.  Although medication would normally help you deal with some of the symptons, (anti-depressants, painkillers and the like) it sounds as if your body sees all these things as invaders and attacks them.  I know it must be difficult to stay positive but you are still young and can't give up.  My thoughts are with you Sherrylady 
  • pat38625
    pat38625 Sherrylady

    Posted

    Hi, so sorry you are having so many problems.  I am a newbie to PMR.  I used to smoke and was off and on them.  Off them for 4 years and  then went back on them.  I have stopped smoking again and it wil be a year in March.  There is a book called "The easy way to stop smoking" by Alan Carr.  You smoke while you read the book. there are no scare tactics, it just blows every myth out of the water.  

    There is always light at the end of the tunnel, sometimes the tunnel can be very dark and long but please don't give up hope because there is always light.  Good luck and all the best.

    • Sherrylady
      Sherrylady pat38625

      Posted

      Pat, all I can say right this minute is Ty for a reply any reply, I'm just nonstop crying right now!  Maybe I'll try and get the book!  Ty God Bless!!!
    • pat38625
      pat38625 Sherrylady

      Posted

      You are not alone, and keep coming on to this site if you can, you will get plenty of support and advice and any questions you have will be answered by someone.  Crying is healing, so let the tears roll and then you will feel better.  Chin up girl, chest out and you will soon be on the up and up.
  • tina-uk_cwall
    tina-uk_cwall Sherrylady

    Posted

    Dear sherry lady, you are truly exhausted. I have read your story and all I get is desperation. No wonder you cannot function because no one can function when in such extreme pain. I am not medically qualified so cannot really help you, but come on members based in South west Florida do you know of any drs that can be recommended?

    firstly, we all need sleep, and you are getting very little, therefore when you get up in the morning your body has not been rejuvenated, and every living mammal requires that it simply keep going. You must have the sleep test that you are talking of, that way something can be put in place to allow you to sleep and therefore to function the next day.

    you say that at one point you did have a good Dr but he moved away, is there any way he can be contacted and perhaps he can recommend someone else that practices using your old drs principles.

    pain is very destructive as it takes over your whole body including your mind. Even if you do have various medical problems I am shocked to think that after all this time they cannot be differentiated. PMR pain for example is very different from a bruise or a cut finger pain.

    i am so sorry that I cannot help but as a lay person I do believe that if you get your sleeping disorder corrected and you awake each morning refreshed then you are better placed mentally to access your other painful medical problems. 

    Also have you thought of counselling, no please don't think that I think you are mad, but when I first developed the symptoms of PMR I was going to see a councillor to see if they could help me with stress management because the pain was simply unbearable. Luckily for me I saw a rheumatologist soon after and PMR was diagnosed and preds were prescribed and they worked. Please don't think that I don't care for you, it's just I am totally unqualified to help you in any way. Christina

  • noninoni
    noninoni Sherrylady

    Posted

    Your various problems sound absolutely horrid.  I have had very similar problems but better doctors.  I too was thinking I wouldn't mind a heart attack right before I was diagnosed with PMR.  But it doesn't sound like you have PMR.  

         I managed to give up smoking 15 years ago after my daughter suggested doing everything at once.  So I took wellbutrin, the patch, and lots of regular gum since I couldn't stand nicorettes.  I took 6 months to get off the patch, cutting a sliver off each day.

          I don't understand why you don't have a sleep apnea machine if you have the condition, but the machine is expensive.  No wonder you are so tired. Be sure to sleep sitting up fairly high until you get the machine- sleep in a recliner if you have one.  Try to find you old results and give it to you current doctor.  You may still be able to get one. 

          I find it hard to believe you have lived that long with such a rapid heart beat.  Even after only 2 days of such a heart beat right before Xmas, they thought it might have caused damage to the heart.  But then maybe not- I find out in a few days.  Do you have a way to easily take your pulse? 

           So my last recommendations are: move back to Michigan and get hospice.  You don't have to be dying to get hospice, and they are absolutely marvelous in every way.  You can go in and out of hospice by the way, out if you are doing  better.    

        

    • erika59785
      erika59785 noninoni

      Posted

      You are so young and have to endure this!  My heart goes out to you.  I agree with Noninoni.  Hospice care even in Floriday or Michigan would be of more help than the doctors where you live.  This is sad that they cannot help you.  Sleep is so important......and if you are not able to sleep, medication of sort is necessary.  Have you tried Trazadone?  It has helped me these last couple of nights when the sciatica pain was so bad.  My daughter-in-law allowed me to take 1/2, and I could sleep.......felt no pain!

      Thought to share this with you.

      Hugs and all the best.

      Erika

  • erika59785
    erika59785 Sherrylady

    Posted

    Please follow latest response to Noninoni which was directed to you!

    Erika

  • twigjean
    twigjean Sherrylady

    Posted

    You are having a terrible time. I'm also in US, Mayo has a clinic in Florida. They will look at you in total. Mayo is rated the top hospital in USA. Please think of giving them a call. It also sounds like you are depressed. Try Mayo
  • twigjean
    twigjean Sherrylady

    Posted

    You are having a terrible time. I'm also in US, Mayo has a clinic in Florida. They will look at you in total. Mayo is rated the top hospital in USA. Please think of giving them a call. It also sounds like you are depressed. Try Mayo
  • twigjean
    twigjean Sherrylady

    Posted

    P.S. I love my CPAP machine. Sleep with him every nite
  • cindy63197
    cindy63197 Sherrylady

    Posted

    Sherrylady, I'm so sorry you've had such a bad time.  Do you ever consider moving back to MI if possible where it seems you were happier with your doctors?  I think the suggestion of going to a Mayo Clinic would be great because they have the capability to look at the whole picture.  I'm a massage therapist (not working currently because of the PMR) and several of my clients went to Mayo for complicated isssues and they did a fabulous job sorting things out.  I believe they will also work with your local doctors.
  • Mrs.Mac-Canada
    Mrs.Mac-Canada Sherrylady

    Posted

    I am also very sorry to hear that you are dealing with so many awful health problems.  I find that lack of sleep in itself when dealing with just PMR makes things much worse and I can't even imagine how it must affect you with so many issues.  I think, like other members of the forum, that getting sleep would be a very good start.  You allow your body to relax and work on healing and you would have more energy to face each day.  I often have a nap in the afternoon which I never did before.  My doctor has also prescribed zoplicone to help me sleep because she said lack of sleep is very bad for your heart (I take meds for hypertension).  I take them only when I haven't slept well for a couple of nights.

    From your description of of your pain it sounded to me like you may have developed PMR but it doesn't make sense that it wouldn't respond to prednisone (if that is what you were given).  To my knowledge only prednisone works for PMR. 

    Living with constant pain is so hard on both your body and your mind and just wears you down but don't give up because you are young and none of us know what is going to happen tomorrow.  It may only take meeting one person (doctor, councillor or friend) that will get you on the path to better health.  We don't have Mayo in Canada but I use their website often and it sounds like it would be a very good beginning for you. 

    I hope you find the way to get back to health and enjoy your life as we are meant to.  This forum is a wonderful place for information and support and with it, you are never alone.

    Hugs, Diana

  • rita38591
    rita38591 Sherrylady

    Posted

    Darling: My heart goes out to you. Go home, you need family & a knowledgeable Dr. 

     

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