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Thursday, July, 24, 2008

jewelbug38

by  annie
Thursday, May 01, 2008
annie

annie

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I have had fibromyalgia for years, also deterioratife disc disease, and produce kidney stones which keeps me in and out for lithotripsy and pylonephritis. I fought going on strong pain meds, other than Darvocette for many years. Now they tell me, I must start on something stronger. I am te...

  1. Finding a support group
    okcexplorer
    Thursday, May 01, 2008 at 05:29 AM

    Hello Annie!

     

    I understand the frusrations and wories that accompany the ongoin battles ahead of ya' and hope over the years you had a chance to find a good pain managment group?

    I know alot of folks seem to just get scripts and never are truly educated in the ways to deal with the luggage that comes along with bein medicated all the time and that one does build up a tolerance in time.  I found a true pain management is their once a week in a group session setting and provides P.A's to assist in new methods and copeing tools to find comfort in our daily lives.  I happen to have an understanding that we are not always meant to be pain free just free of some of the suffering. To totally numb all pain makes ones body unaware of what we truly are able to consider a tolerable day and this leads to needing a strong dosage of meds 'addictive behavior'.  I know folks need to be medicated and surely under the care of a family physicain 'not just a pain mngt.' they will  keep an eye on your health. 

     A group therapy can be a once a week session unitl the Neuropsychatrist feels the patient has knowledge and matured enough to handle their situation physicaly and mentally.  I know we have to function in our daily lives but we should not have that fear to go along with it and I pray you have the right tools to face the challanges ahead; as you have bravely in the past. 

    The long term usage of any meds is of health concern and the physician can help with

    your concerns about addiction.  I am glad you are aware of those facts and if possible find an outlet like a group therapy. If you have, I would ask them to explain about how those key in our brain are turned on and ca'nt be unturned when we cannot function without the narrcotics in our system. I have conversed with many in this forum and the ones who have recognized this have said 'yes' their bodies hurt alot more when they were on higher doses because and i mean not just "withdrawl" pains but 24 hours a day the body just physically needs that in our system or it cause more suffering and aches not even attributed to your original condition. ***Only and I mean Only** 

    with the care of a physician should you ever consider lowering your medications. That is' if it is possible; to find out what works best for your condition and by no means am I indicating to those that it is best to get off all meds and this is why they find the hurt from withdrawls. It is the other side of the coin! When I hear back from those that accpeted the realities that they saw the benifits of dealing with the ailment rather than causing other health issues attributed to long term usage of Heavy narrcotics.  the folks I know presently indicate they suffer less and are happy to start abck at a low level dosage to realize what and how they can find coping mechanisims to have some Quality of life. this is the most important finding that  'Quality' of life and it may take a bit of time and patience. I know it has been many years for ya' and I truly see your fightin spirit.  I know you will face the new challanges ahead and know that you are not alone when it comes to facing fear.  

    hmm.. make sure if they wanna put you on the stronger meds at least it is not packed full of acetamenaphiine this over long time usage can really do the damage!

     

    Safe journey in your days ahead!

    MB   


    reply
    re: Finding a support group
    Annie
    Thursday, May 01, 2008 at 12:23 PM

    Thanks so much for your support! Your response was helpful. I have many family members who have had drug problems and a son who died from one. While hospitalized in Jan. and Feb., a pain management doctor visited me as I had been up all night in pain. He told me with all the things I had going on in my body I had to move up to a higher med, Norco, for help with the pain. It frightens me because I know too much about addiction to feel comfortable. No, I haven't joined a group, though I do notice many fibromyalgia meetings in this area. I am tired and have gone through lots of stress lately, such as losing my dear son. It's good to have gotten input. If anyone else out there has any comments, please contact me. My family doctor is very concerned because of the condition of my kidneys in my taking over 40 Norco a month. I explained to him that is less than the pain management doctor would prescribe, and that is one of my major concerns, too. Having never seen a pain management doctor before then, I would like input from those who have. I almost lost a kidney in January. I am truly uncomfortable with what to do next. Thanks so much!


    reply
    re: re: Finding a support group
    Jackie Butler
    Friday, May 02, 2008 at 08:02 PM

    Hi Annie-it's Jackie again. I take 90 hydrocodone 10/650  at 3 per day and have for over 5 years under the very watchful eye of a board certified pain management specialist. Trust me they are monitored stronger than any other doctors! Even if you took all your meds in a week and called with any excuse from theft to they fell down the drain, that doctor will NOT give you any more until the next month! They are trained to nkow the signs of addictions and will immediately refer you to detox-which means their referal forces your insurance company to pay wether it's normally covered or not! The foot ball player made a good point as well-when we take pain meds, we all tend to feel "odd". We hope we are not percieved as drug addicts or weak. We are none of the above-we are simply people who have medical conditions that include chronic, severe pain. He didn't ask for the hit that put him in this place and I didn't ask for two failed hip replacements-at age 33 noless! You didn't ask for your ailments. Just be glad we have doctors who will care for us in this crucial area. Please, please get to the pain management specialist! Also, I am so very truly sorry for the loss of your beloved son! No one should have to go through that, dear! Please do write me and we can talk all you like-I won't opine, I'll just listen. JTJrFan8@aol.com


    reply
    re: re: re: Finding a support group
    annie
    Thursday, May 08, 2008 at 01:35 AM

    I am so sorry to hear of all of your troubles. Yes, you are too young to have to deal with all of your problems. Thanks for the advice. I have tried to weather the pain under the care of PCP doctors for years, but as I get older and find myself hurting in more places than ever, I think I need to heed your advice. I have known several who have gone to pain management specialists and have had good success! I appreciate you taking the time to encourage me in the midst of your problems. Thanks too for the condolences, I have beautiful memories and three of his beautiful children to keep me from sinking into depression and despair, but I have had my moments. I hope you feel better soon and have some good days ahead. You deserve them!


    reply
    re: re: re: Finding a support group
    annie
    Thursday, May 08, 2008 at 01:35 AM

    I am so sorry to hear of all of your troubles. Yes, you are too young to have to deal with all of your problems. Thanks for the advice. I have tried to weather the pain under the care of PCP doctors for years, but as I get older and find myself hurting in more places than ever, I think I need to heed your advice. I have known several who have gone to pain management specialists and have had good success! I appreciate you taking the time to encourage me in the midst of your problems. Thanks too for the condolences, I have beautiful memories and three of his beautiful children to keep me from sinking into depression and despair, but I have had my moments. I hope you feel better soon and have some good days ahead. You deserve them!


    reply
  2. sharing addition to first post by Annie
    annie
    Thursday, May 01, 2008 at 01:49 PM

    Sorry, I thought I shared a lot, but here goes. I have fibromyalgia, cardiac dysrhythmia, osteoarthritis, high blood pressure, restless leg syndrome, problems sleeping, migraines, and I create kidney stones, which either I pass before or after lithotripsy. I have allergies, sinus problems, your regular garden variety problems, and high liver enzyme levels, am at present going through kidney function tests, as most recent infection was almost too far along as I have no health insurance and waited. My meds are kerlone, HCTZ, Estrace, Darvocette, Flexeril, and sometimes I take Norco 7.5 since hospitalization, and follow-up.


    reply
  3. Scared of Strong Pain Killers
    Texas Hammer
    Thursday, May 01, 2008 at 08:17 PM

    I am a former professional football player and played strong side linebacker.  Even though we have the very best equipment and have armor from head to toe, I can assure you that being involved in a hard hit or tackle is very similar to being in an automobile accident.  Obviously not as bad as fatality accidents, but they can be extremely violent. 

    Unfortunately in one play I destoyed my back.  I ran at the opposing running back and at full speed leaped horizontally towards his belly.  The impact was so hard that it compressed/ruptured the discs from L1 through L5.  Last year I had my left shoulder rebuilt including 7 titanium rods.  The last injury was a seven fracture injury to my left foot, ankle and leg. 

     

    Please DO NOT be afraid of medications that can manage your pain.  I have been taking opiates for more than 10 years now and I could not function in any capacity without them.  I am a big guy and currently take 400 MG per day of MS Contin and 40 MG per day of Vicodin for break through pain.  DO NOT let any pharmacist make you feel like a criminal or someone with low morals because of your need of the medicine.  It has changed my life for the better and I thank God He created the Poppy to relieve pain.  No one should have to suffer greatly when there are meds that can make you comfortable.

     

     


    reply
    re: Scared of Strong Pain Killers
    annie
    Thursday, May 08, 2008 at 01:47 AM

    What a horrible time you have been through! I'm sure you do need the medication to get through a day! I am so sorry for your situation. I have a son who was in a terrible accident in which 2 people were killed and 3 in ICU for a long time, including him. He needs a pain management doctor, too. He has several compressed discs. I guess I've always felt that so many others were in such worse shape than me that I could do without a lot of medicine. Now I am learning that I need help and am seeking it! Thanks to you and all the others who have written such encouraging emails. Yes, the family doctors and pharmacists do treat you in a way that make you feel that you are an addict. That's been hard for me to overcome, and it's taken me a long time to stand up for myself and deal with the doctor, the PCP. I find the pain management doctor who told me plainly with all my problems I was not getting nearly enough medicine. I want to become a stronger advocate for myself. I'm hesitant and don't want them to think I'm begging for meds, because of the snide looks they give you even though they diagnose your problems. My PCP and I finally had a clear understanding, and he increased my meds. Thanks for your concern and testimony!


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  4. To Annie with the fibromyalgia
    Jackie Butler
    Friday, May 02, 2008 at 07:50 PM

    while you did not say what the something stronger is that you are about to start taking, I assume it's hydrocodne in any form; Lorcet, Lortab, Vicodin   you may be interested in knowing they do work much better than darvocet AND they do NOT interfere with breathing as darvocette does to me. The thing to remember is to keep your meds private. It's easy and common to tell people how you feel, what you are taking; basically to find your health becoming a topic of social conversation when you have such crippling ailments as you & I do. Stop that now. People might even begin to steal your meds especially if they switch you to hydrocodone. You will feel a slight euphoria and perhaps some itching on any part of your body but honestly these symptoms will go away shortly. Just be sure to take as directed as you can build a tolerence quickly and tell your doctor when the meds seem to have stopped working. Hydrocodone starts at 5MG and goes up past 80MG so there are stronger doses. Good luck and God Bless! Jackie  JTJrFan8@aol.com


    reply
    re: To Annie with the fibromyalgia
    annie
    Saturday, May 17, 2008 at 07:56 PM

    Thank you a lot for your advice! Yes, I have had medications stolen from me before and have taken efforts to see that hopefully that never happens again! I had several people in my family with drug problems who I have caught in the act. It is very good advice. No, I won't tell the kind of meds I have been changed to but do thank you so much for the advice. We have the opportunity with Medicare age approaching to have mail order meds delivered, but have absolutely said no because I know there are people out there who watch for this kind of thing. Your advice is right on and I do appreciate it! Thanks for checking in and caring. I sure hope you get more good days ahead than bad! God Bless!


    reply
  5. Fibromyaldia
    ESTHER BROKAW
    Wednesday, May 07, 2008 at 06:11 PM

    After fighting fibromyalgia pain for 15 years, treatments of electromagnetic energy, a  type of biofeedback called Ondamed, permanently relieved my pain.  It took several months of  treatments, but I had no bad side effects or setbacks and the benefits are permanent.  A true miracle for me and others I must  share with you.  Good luck, my prayers are with you. Stay away from narcotics,  I know..   Take them ONLY  as a last resort and you need to try Ondamed and improve your immune system first.GOOD LUCK


    reply
    re: Fibromyaldia
    annie
    Saturday, May 17, 2008 at 08:16 PM

    Thank you so much for the advice.  I will certainly check into it! I'm glad you have had such good results. This sounds almost too good to be true, but I do take you at your word. Thanks so much for the sound advice!  Good luck!


    reply
  6. Untitled Comment
    Barb
    Thursday, May 08, 2008 at 12:15 PM

    Hi Annie,

     

    It sounds to me like you and I have very similar health histories in regards to our battles with fibromyalgia and pain.  I even have had the battle with kidney stones thus far having to have one surgically removed...hoping for no others, but it is a known side effect of the  medication Topomax which I take for migraine prevention...and that has worked wonders at reducing the frequency and intensity of my migraines.

     

    If you can get to a rheumatologist  or some other specialist who specializes in treating fibromyalgia I highly encourage that rather than sticking with your PCP for treating your fibromyalgia.  This is in addition to your pain specialist who may or may not be familiar with fibromyalgia. 

     

    I encourage you to join one of the support groups in your area.  You will find other people dealing with what you are.  They will be able to give you tips on how to make your life easier, tell you about doctors in your area who are good, and who to avoid, educate you on the latest information about Fibromyalgia research and provide you with a network of people who really DO UNDERSTAND what you are going thru.

     

    I've been a diagnosed Fibro sufferer since 2001 but I really believe I have had it all my life to a lesser degree than now and I am on disability with it and severe migraines and depression. I started out with lower level pain medications and like you, I was afraid of going to the higher level pain medications.  But the pain I lived with was worse than my fear of using the medications and becoming addicted.  Most people who live with the kind of pain we live with do not abuse their pain medications. We are too grateful for the relief that we do get from them.  We don't get "High" off of them like people think we do.  Our bodies develop a tolerance in a short time to that effect and eventually all we feel is the pain relief.  Over time I have gone even a step beyond what your dr is discussing in using longer acting pills and I am using a pain patch which is changed every 3 days - One of the really nice things about this patch is that it goes directly into your bloodstream and bypasses the liver so your liver isn't further damaged lilke when you use other pain killers. My sister in law, who also has Fibro and is a kidney transplant patient, has to be very careful about the kinds of pain medications she takes...they do make pain medications in formulas without the tylenol because she gets them, so if your dr. is concerned about your tylenol useage he/she can prescribe pain medication with no tylenol. I have other medications I take in addition to the 2 I've already mentioned and I am so grateful that I qualified this year for government assistance for my medications...as otherwise if I were paying for them myself I would be averaging around $1500 a month out of pocket.  I don't make that on Social Security.

     

    I hope this helps you feel a little better about taking pain meds, and helps you know what to do to help yourself understand your fibro better.

     

    Barb


    reply
    re: Untitled Comment
    annie
    Saturday, May 17, 2008 at 08:59 PM

    Yes, it does sound like we have similar health histories in many ways. I'm sorry to hear about the problems you are having. I have had a history of kidney stones, have had them surgically removed and had several lithotripsy procedures, and am looking at another next month. Yes, the whole process has become bewildering , from the migraines, to the kidney stones, to the whole pain cycle for it all. One thing seems to cause another. Thanks for all the info you gave me, I'll consider it all and keep it in mind. Right now I am in a bad fibro cycle.  Please accept my thanks for your help and advice about everything. I appreciate it so much! I sure hope you feel better soon. These kidney stones are very painful. Not to speak of everything else that cause the pain cycle to go into overtime. Good luck to you in the future!


    reply
  7. Lumbar, Hip and Fybromyalgia Pain
    Sharon Butler
    Thursday, May 29, 2008 at 10:14 AM

    From one doctor to another trying to find out why I am in constant pain.  My Pain Management Doctor has given me three nerve blocks and pain meds.  Nothing has changed in the past 2 months.  I was given a Lumbar Facet Injection it only lasted 24 hours.  I am scheduled to have a Lumber Facet Degenerative procedure and at this point I'm not sure?  Now I'm really in pain and don't know what else to do!

     

    If anyone out there has had similiar experience with the Lumbar Facet joint let me know!

     

    Thanks


    reply
    re: Lumbar, Hip and Fybromyalgia Pain
    annie
    Friday, May 30, 2008 at 01:01 AM

    I am so sorry you are going through so much pain. Saying that, I've not had the Lumbar Facet injection. I can offer no advice, I do hope you get good advice from the good people here. I hate the nerve blocks didn't work longer. My best wishes for your future. Here's to many pain free days ahead. Please keep me posted on how you come out as after surgery for kidney stones, they are going to be testing my back as I will receive Medicare. The insurance problem has been a torturous test of faith. Then my sorrows diminish when compared to so many others hurting, such as yourself. People do care about other people. I've learned that on this site. Please take care and post when you feel able, it really helps those like myself to get a  better perspective. Thanks!


    reply
    re: re: Lumbar, Hip and Fybromyalgia Pain
    Sharon Butler
    Tuesday, June 03, 2008 at 04:26 PM

    Smile

     

    Hi Annie:

     

    You are certainly in my prayers!  In 2002 we lost our insurance and our jobs.  For two years we like most Americans had to go to free clinics and trust me, I never thought I would have made it through those trials!  These are difficult times for all of us, but God does answer prayers! 

     

    Pain in any area of the body causes stress, and at this point I am working with a pain specialist who is a God fearing man.  I'm three weeks behind in seeing him because I am taking care of my mother who is ill.  So, had to take some time away from myself and put all my energy in taking care of her.  My brother is doing his 3rd term in the military and I truly pray for all our soldiers to come home. 

     

    I am managing my pain with meds and some days are good and others not so good.  But I focus on other things which reduces the pain more than anything.  I have members of my church praying for me, and my husband takes care of all the household responsibilities (GOD BLESS HIM FOR HIS SUPPORT).

     

    This website is an encouragement for anyone who is suffering from severe or chornic pain!  Doctors do their best but there really is nothing we can do but take medication.

     

    You stay in prayer and as my Pastor would say, "I pray for you, you pray for me" and together we will make it.

     

    God Bless in Keep you in His care! And He will do it!

     

    Sharon


    reply
    re: re: re: Lumbar, Hip and Fybromyalgia Pain
    annie
    Tuesday, June 03, 2008 at 06:30 PM

    Sharon, thanks for your note. I agree you do have a lot of doubts as you go on in life suffering because you don't have the money or the abitlity to find good medical assisstance from the medical community. I have surely been blessed, I feel, to have finally made it to securing Medicare and having the ability to wake up in the morning and realize if I truly need medical help, I can actually call a clinic and see a doctor. When I had insurance, I think it never dawned on me how very sad it was that so many were uninsured. We need to keep those people in our prayers as some will never attain that goal.

     

    It is truly from a grateful heart that I give my thanks to God for seeing me through this far. He has been there in the family losses, in the hours of suffering, in helping me attain samples from my doctors, in granting me charity in January and February of this year! Thanks so much for your encouragement. May you continue to be blessed, and let me say that husband of yours sounds fantastic. I have one who has COPD but doesn't have much pain at all, thank God! He helps me out in so many ways I couldn't list them. But, I am very happy he is on my side. If you are like me, and I feel you are, you continually give thanks for him. They hate to see us in pain. I'll pray for your health and your husband's ability to help, and you please remember us. We may never know each other, but we can always give online support.

     

    Have not had a good week, hope yours is better, may everything go well with you.  Take care and will share more later on. Stress is such a common way among pain sufferers. It does cause such pain. Hope to find you  better soon! 


    reply
    re: re: re: re: Lumbar, Hip and Fybromyalgia Pain
    Sharon Butler
    Saturday, June 07, 2008 at 06:52 PM

    Like my husband say's everyday to all types of people that he meets, WE ARE TO BLESSED TO BE STRESSED!  Even though things may seem like there too much for us to bear we must put our trust in HIM and not in THEM!

     

    We will continue in prayer one for another and God will see us through these storms. It's truly going to be a test of FAITH.  Be encouraged we will make it!

     

    God Bless and Keep your Family!  I'll pray for you and you pray for me!

     

    Sharon

     

     

     

     


    reply
    re: re: re: re: re: Lumbar, Hip and Fybromyalgia Pain
    annie
    Friday, June 13, 2008 at 01:12 AM

    Thanks Sharon! To you and your husband. Had some news Monday that is different...posted it on my site. Keep us in your prayers, please. My husband and I thank you! God bless you both! May your days ahead be blessed and may God watch over and keep you. Laughing  Keep the faith and we will pray for you, too! Annie


    reply
    re: re: re: re: re: Lumbar, Hip and Fybromyalgia Pain
    annie
    Friday, June 13, 2008 at 01:12 AM

    Thanks Sharon! To you and your husband. Had some news Monday that is different...posted it on my site. Keep us in your prayers, please. My husband and I thank you! God bless you both! May your days ahead be blessed and may God watch over and keep you. Laughing  Keep the faith and we will pray for you, too! Annie


    reply
    re: re: re: re: re: re: Lumbar, Hip and Fybromyalgia Pain
    Sharon Butler
    Saturday, June 14, 2008 at 10:58 AM

    Smile

    Thanks Annie:

    I have been praying for this world.  It seems that so many people are in distress, and it is overwhelming.  My sister and I went for shots at the arthritis doctors office yesterday.  As we were watching the news, it was truly sad to see the news anchor Tim Rursett have a heart attack at age 58.

    We me differ in our views about who is right or wrong for the leadership of our country; however, this is a time to come together and pray, pray, pray for this world.  Our children are dealing with a great deal of pressure and we are taking care of our parents.  So, we are seeking God to help, like never before.

    Tomarrow is Father's Day, and this will be the first year without mine.  And I'm not yet over him.  So, I'm truly tearful about his demise. He's in a better place and know I must take care of my mother. 

    So, you have a blessed day, you and your family and never ever will we forget our Lord and Savior Jesus Christ, who suffered for this entire world.  Nothing compares to what He had to endure for me and you. It's a wake call for these nations to END THIS HOLY WAR!!!! My brother who has served three terms and other soldiers like him NEED TO COME HOME NOW.   No disrespect to anyone, but it's time!

    God Bless and Keep you in His loving arms.

    Sharon


    reply

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