Tired of living in pain, it keeps getting worse

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, Mar 15, 2010.

  1. rosemarie

    rosemarie Member

    I can't take this much longer this pain that only gets wores and having a doctor that cares less about me and what is causeing my pain.He has made it clear that he will not UP my doseage of MSCointin 100 mgs x2 and MSIR 30 mg x4 , soma 350 x4 {can't get any higher dose} I am on xanax { have been for 20 yrs since my hyester} 2 mgs at bed time. visteril for nausea and itching.
    I am trying to get on with life and the added stress's that are now in it . We still have not sold our house and if it does not sell then the bank will foreclose on us. Moving out of my house where we lived for 20 + yrs, so we only moved 6 blocks it is not my house, my mother has been ill in the past 7 yrs and I am the sole care giver, she still treats me like her child not an adult so my getting on her case about doing what he doctor tells her she gets mad at me and treats me like a 16 yr old won't talk to me, will not do what she is asked to do and won't admit it that she has forgotten much of her life adn the illness she has had. I get so tired of her getting on my case telling me that I am making up stories about what happened with each illness and hosptial trip. I have kept a dariy on each trip. I am not lying or streaching the truth.
    I get told by her that I have to attend church no matter how bad or in pain I feel. Good heck I am 54 yrs old treat me like I grew up.
    IN the past few weeks the weather here in UTah has chagned from winter to spring to winter and spring, it snows , rains, sleets, gets cold then warmer but not warm enough for me. I am still cold and acheing. Mom thinks that I don't know what severe constant pain feels like , as to her my pain is not at the same level as hers. Although she won't say how bad hers is . It does not make scense to her to put a number on it becaues her pain comes and goes, it is not always constant like mine is. So when I tell her I know how she feels I get told I have no clue how bad she hurts. Just as she has no understanding that I hurt too. And I take stronger pain meds than she does.

    I went to church on Sunday just one meeting and I wanted to scream, the babies and small children cryed , yelled, the lights were buzzing, it hurt to sit on th hard bench with the sicatia I am having. I have noticed that bright lights , loud nosiy kids , crying babies, loud music all make me feel worse, it is like shards of glass are being shoved in my eyes and head, my back , legs throb and feel like some one is smashing the bones in my legs.I don't feel like I am getting any thing out of the meeting because I am in pain and can't hear what is being said because of the noisey babes, and children. I want to go to meet new and make new friends but it is hard because people waonder why I am not at church most times what is wrong with me.. I could try to explain it but 99% of the people I tell that I have fiibro adn other chronic pain conditions don't get it, understand why I feel like I do.
    I wish I knew what was making my pain so much worse. my tail bone hurts alot { darn that first born daughter of mine. she was born face up and broke my tail bone. That was 32 yrs ago. I have been having bad leg aches, sicatica shoots up my tushy and it hurts all the way down as well as up too. I dont' do things normally, I can't take mes like the anto depressants as they make me the wicked witch of the west , east, north and south. Lyrica is one that my doctor wanted me to try and I said NO. I don't want to go through feeling like that ever again. TOO hot . too cold, can't think straight, hurts all over. I yell at everyone all the time I have taken meds like that. So I won't do it again.

    Now about my doctor I want to know if I could get in trouble because he prints out my scripts post dates them and only sees me once a year or when I go in with my MOm. I hate feeling like I am the unwanted patient from hades, I dont' ask for much in fact I have reduced the amount of narcoitics I take since I have been going to him, ^ yrs ago I was taking Mscontin 5 x day and now I take 2 a day, i have reduced other meds as well, I don't sleep but I don't dare take the sleeping meds like ambien or other ones, I feel like I dont' want or need to add more drugs to the mix. Right now I fee l like the amount of meds I take in a day could put most people in a coma for weeks. or may be knock out a horse. I don't get any sense that my doctor even knows or cares why my pain is getting worse because he does not care to see me when he should.
    when I saw the pain doctor I had to sign a contract that said I had to see him once a month 28-30 days, I could only go to one doctor, one pharmacy, and could only get my meds once a month, If i was hurt I had to let him know and he handled all my pain issues , from surgeries, illness's , flares, I knew he cared about me as a patient he knew my name, and talked to me each month to see how my meds were working. I could fill my scripts every 28 -30 days, But this doctor makes me feel like he dreads seeing me once a year.
    I can'at sleep because of this out rageous pain I am in , I can't stand feeling like all I want to do is sleep all day because I didn't sleep at all durning the ni ght. I am missing out on playing wiht my grandbabies and I want to be excited about the two new ones that are comming this year. I am happy but I dont' look forward to being told Mom you have to sit down before you hold the baby, I feel like I am a child being told to be carefull instead of the gramma.
    Sorry for the rant and raving. I don't know what to do any more
  2. heapsreal

    heapsreal New Member

    lack of sleep can increase pain, immensley, so maybe taking something for sleep can help you reduce your pain meds, also some pain meds can reduce your quality of sleep, your sort of stuck between a rock and a hard place. Ambien isnt a bad sleep med, in can actually improve your quality of sleep but there are other alternatives though like sedating antidepressants in doses lower then used for depression like doxepine and amitriptyline, these can also have a direct affect on pain. Sedating antihistamines can also be an option for sleep and can also increase the affectiveness of pain meds as well as reduce nausea associated with them. Lastly, anticonvulsants like lyrica, nuerontin or topamax can help reduce pain as well as improve sleep.

    I dont know if you have looked into these things before but sometimes revisiting these things you may find they help again. As far as docs go, i think you should look for another doc, how he treats you sounds so wrong, you would get better treatment from a vet. Maybe put out a post on here for good docs in your area who treat fibro/cfs, Im sure you will get some replies.

    good luck, stay positive.
  3. hermitlady

    hermitlady Member

    I'm so sorry to hear you're so miserable, I can totally relate. I firmly believe that stress is a huge factor related to our pain levels. I am also a caregiver for a difficult person, my daughter. Whenever the stress w her is elevated, so are my FM symptoms.

    I hate to say this, and please don't take this wrong, but I've recently gone thru narcotic detox, so I've lived to tell about it. It is entirely possible that your system has become so tolerant to the narcotics that your pain is now being amplified. In a nutshell, the narcotics cover your pain receptors and so your body makes more receptors, causing more pain. I had this happen after 3+ yrs on Hydrocodone and Methadone.

    My pain levels were a constant 4 hr rollercoaster, low to HIGH. I was also afraid of continually increasing my dose, and decided to give detox a try. It's been difficult, but finally after 6 wks, my pain levels are greatly reduced. I am now at a low constant level, which is much more tolerable. I have also discovered that Tylenol causes me to have the same type of rebound pain, so I'm avoiding it and just taking Celebrex and Ibuprofen.

    Your Dr could be in a huge amt of trouble over post dating scripts and not seeing you often enough. Sounds like a malpractice suit waiting to happen, not good for the patient, and lazy of the Dr. I would definitely find a new Dr, you deserve much better treatment.

    I mentioned that I was on Methadone, I took it over the last year and it did help w the peaks and valleys of pain. Since the Norco (hydrocodone) would only last about 4 hrs, the meth is longer acting (dosed once a day) and is a constant level of pain relief. I guess I was using the Norco for what would be called breakthru pain.

    But, as we all know, this stuff gradually quits working as well and I needed to up my doses of both meds. That was when I decided to take a break from them. My family was also worried about me and now I realize how numb my brain was while on them. I may eventually have to go back on them, but for the moment I am OK...It's been about 2 mos of misery and now I'm finally starting to feel a bit better.

    I also recently found an OTC herbal sleep remedy at Rite Aid that's helping a lot. It's called Sleep-MD, they have a website. I've taken Trazodone for yrs to help me sleep, but since the detox I've needed more help. You might want to check it out.

    So, I hope you can get to a new Dr...and I would think about reporting your lazy doc before he does anymore damage to his patients. That's just wrong, why are some of these people even in the medical field? It never ceases to amaze me!

    Depending on where you live, there are services for in home care for the elderly. You might check with your area Social Services or Dept of Aging. I know a family member (in CA) who got paid monthly to care for her father, she chose to do it herself and keep the money. I know my mother cared for my father for 10 yrs thru his strokes and health decline before he died. She was just a shell of herself by the time he passed, it took over a year for her to regain her health, but she was 83 when he died (now 86!). There is hope for you to get some help.

    Good luck and hang in there. Let me know if I can help.

    xoxo Hermit
    [This Message was Edited on 03/16/2010]
  4. rosemarie

    rosemarie Member

    A few years ago I went thru being over dosed by my doctor. I noticed that I had two months of my strongest narcoitc and could not get the doctor to listen to me and reduce this med from 5 pills a day to 2 pullls a day. I finally got him to reduce them slower and now take two of the mscontin a day, I try to take the least amount possiable at all times. I don't like getting rebound pain from taking too high of a doseage. I know when that happened I had headaches and felt worse than ever but as soon as I got my leds reduced the headache went away and I have not had them since.

    I know why my pain is greater now as I am under alot of stress's at home , with family. I don't like taking my pain meds but now that I have found one that ease's my pain 90 % of the time I feel better. I finally have found a good mix of the long acting meds adn the short acting breakkthru meds it is working and I even have days where I take less than prescribed as my breakthru pain is not as bad.
    My biggest problem is that I am up a creek when I want to go out of town adn need my meds filled before I go. Since I don't use a national brand of pharmicies I have to fill them at my one store pharmay. My AARP medicare insssssuracne covers my scripts to be filled as soon as i have used up 80 % of the meds.

    But I dont' know what to do about the doctor who post dates my scripts, I was told that the clinic he works for has a policy of only refilling narcoitcs every 30 days no exceptions. I have to go out of town this next month right when my meds are due , they are also due on Sunday and I don't use a big pharmacy who has them in every town. So he will try to post date them to Monday leaving me short on pills. I am going to have to call adn hope that I can get th ru to him that I must have them filled before I leave. I dont' feel like i need to explain why I am going out of town, do I?

    I signed NO contract telling me about this policy, I have not signed any contract with this doctor either. So I am not breaking his policy or contract.
    Wwwhat can I do about his postdating my scripts? I don't want to get in trouble and I don't want him to , either as I have no one else who will prescribe me my meds.
  5. spacee

    spacee Member

    I don't know what to say except I really, really feel for you and this hell you are in.

    I do believe it is illegal to post date rxs but it is the doc's choice. My pcp does it for
    me for ritalin. He did it for my sons too (2 with add) and I had to mail the meds to
    them. That is illegal too. But they are back here now so no worries.

    Listen, come here and rant all you need to. I am not here as much. I am on the chitchat board
    but if I see your name...I will post to you.

    I care so much...

  6. JLH

    JLH New Member


    It sounds as if you are in a mess now, and I feel for you.

    You would be under a lot less stress and anxiety if you could get someone else in to help take care of your mother, whether she likes it or not. Like another person said, there should be some type of home health care available. I know there is MORE help available (home health) is she is on Medicaid instead of Medicare. That is what my doctor told me. Or, if she needs a lot of care, have you considered a local nursing home? She may not like that, but if she is causing such a negative impact on your own health, you may not have a choice.

    Also, like I have read on the site before, taking so much narcotics might actually make your pain worse. I would try to cut down more, or even switch to a lesser potent narcotic.

    Your doctor sounds as if his "care for his patients" is in the bottom of the pit. Only wanting to see you once a year is bull. He's lazy. Post-dating scripts for narcotics I'm sure is illegal. He should insist that a patient will all your problems be seen at least 4 times a year -- every 3-4 months at least. He can't possibly keep track of how you are feeling and what you need by seeing him only once a year. Only well people go for a checkup once a year!!!

    I would find me a reputable doctor, who operates a legit business, who is really interested in taking care of you, and who would listen to you.

    If you saw a doctor every 3-4 months, he would probably be more apt to help you when you need to get your meds a day or two early when you need to go out of town.

    Also, morphine can alter a person's mood. If you've taken it for a long time, and always feel the same way, maybe it is a part of your depression/anxiety problem. When I had a total knee replacement, the hospital doc had me on MS-Cointin and sent me home on Kadian (which is just like MS-Cointin or a morphine type med). I only had it for a month when I came home, but my children all told me that it made me mean, grouchy, fussing on everyone, and made me not act like myself. When I went back to the doc for a checkup, I told him what my children said on how that med affected me, and he said it does that to some people. So, I will never take it again!

    You need a new doc to analyze you and all your meds and get you back on a path to feeling better.

    Good luck.

  7. loto

    loto Member

    I see you take ritalin. Were you prescribed it for FM, or do you also have ADD?

    I just got my doctor to agree to prescribe Adderall for me after I read on here that it helps some people with fibro fog, pain, and energy.

    I took my first dose this morning (10 mg) and so far so good. I love how I feel. I'm not sleepy at all and have energy, and I've only had to take 4 vicodin so far today. Usually by this time of the day I would have taken 7. And, I am able to concentrate really well.

  8. ladybugmandy

    ladybugmandy Member

    rosemarie..i am really sorry you are in such pain. do you have fibromyalgia? have you tried lyrica or cymbalta? how did your illness begin? i ask because if it began with a flu-like illness, you might have active herpes virus infections and/or XMRV infection and these can be treated.

  9. Nanie46

    Nanie46 Moderator


    I am very sorry that you are feeling so sick.

    Pain, sound sensitivity, light sensitivity, sleep problems, fibromyalgia, etc can be symptoms of a chronic borrelia burgdorferi infection.

    Something caused your illness and it is likely infectious.

    Many people here have found out that the cause of their symptoms is borrelia burgdorferi and coinfections like bartonella, babesia, ehrlichia, etc.

    Please take a look at the symptom list on pages 9-11 of this wonderful paper...and the coinfection symptom info on pages 22-27.....


    You may have had a negative lyme test in the past and your Dr therefore ruled out lyme, but that is absolutely wrong. Lyme testing is poor and lyme is a clinical diagnosis based on history and symptoms.

    It happened to me, and now I am getting better.
  10. Janalynn

    Janalynn New Member

    I'm sorry you're having such a hard time!

    It's not illegal to postdate scripts - or "pre-write" scripts as long as they say "do not fill before___" I believe a Dr. can only do it for two months worth. My Dr. was going on maternity leave and she offered to write my prescriptions ahead of time like that before she left. I was actually going out of town during that time as well and I knew that the PA who was covering for her would screw it up. (And she did!)

    If you are going out of town, I would just ask your Dr. about that. Tell him that you are leaving on 'x' date and you will need to fill on 'x" date. You'll then go back to your normal fill date. I've never had a problem when I've needed to do that (except when my Doc was out of town) because inevitably you always need to fill right when you're gone! It's a huge pain to worry about!