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Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 10/26/2010 6:13 AM (GMT -6)   
The struggles we go through to simply make it through the day at times astound anyone who has never had to live with an illness. Add to it the reaction from some in the medical community and all the uneducated thinking that chronic pain sufferers are simply drug addicts using illness as a reason for their addiction. For me this equals days of sobbing and a feeling of being a burden.
The insurance company still won't cover anything except tramadol, Vicodin, and MS contin. Tolerance to the first two has been established, and my doctors refuse to make me go back to a trial of non-narcotic pain relief because it does nothing. So I am on MS contin and have lost all ability to function. I fainted from pain before, and now I faint from dizziness also. It takes me much longer to make a complete thought, and even longer to have it make sense to someone else. There is pain relief for less than 3 hours at 15 mg a day, and my doc does not want to increase it because of the side effects. I have to take nausea medication, which increases my mental fog. I have slept 17 hours out of the last 24 and still feel tired and drugged. I have no desire to do anything. I remember nothing I read, what happened with my family, or even what TV shows were on. When I talk to the doctor's office, there is nothing they can do to make things move faster. I have called the insurance company repeatedly, filed a grievance, complained that they don't have my doctor's four appeal letters and are making the office reapply for the fentanyl authorization because of the side effects MS contin causes. My poor office must now do everything over again, which is ridiculous.
This leaves me very depressed. With my fiance home to see just how bad things really are for me day to day, it seems as though our wedding will not happen now. I can see it on his face, that he never knew how bad it really was, and we talked about the future. It was not a nice talk.  So here I am, a burden to him, to my sons, my friends, and unsure of what to do about it. The insurance isn't interested in how bad this makes me feel, just if it causes any pain relief. The doctor's office has better things to do than fight with my insurance company, who never even sent the required denial letters to myself and my doctor. I have fought as much as possible through this stupid fog, and I am sure that everyone I have spoken to thinks I am a drug seeker from the stoned sound of my voice. I went to a counsellor, who agreed to a lowered rate, but there isn't enough to cover anything with the fiance out of work.
Sorry to be a burden here also. It just feels like everything that I worked so hard to get to has fallen down around me and I don't have the energy to being to stack it all back up again.
 
 

Radles
Regular Member


Date Joined May 2010
Total Posts : 53
   Posted 10/26/2010 6:30 AM (GMT -6)   
Hi. Mm,

I am so sorry you are having such a tough time. I can't even begin to imagine how you have managed to juggle children and a fiancé, along with the pain.... you have been doing so well, hang in there.

Hugs,

Radles

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 10/26/2010 7:38 AM (GMT -6)   
Dear Mindy,

First and most important...you are not and never will be a burden here! One of the hardest things, those of us with CP, have to deal with is feeling like a burden to those who love us! There comes that point when they realize just how bad it really is and they realize there is nothing they can do to fix it! This is a very difficult situation for them, also, and it is something they need to work though for themselves. You are not a burden to the people who love you...they just have to sort it all out too!

In the meantime, I am sorry you are suffering so much and having to deal with issues that are not easy for healthy people to deal with! I can relate to so much of what you are saying! I am taking MS-contin also.....because of money and insurance! I do not like it and I still hurt really bad but I can not imagine my life without it right now! You are in my thoughts and prayers! Hang in there and take care of you!

Love and Hugs,
Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 10/26/2010 8:39 AM (GMT -6)   
Mom-
\
You are not a burden and I am so sorry you feel this way. No one should feel like that. I can relate to how you feel though. I often feel this way. It also sounds like you have depression. (who wouldnt with chronic pain) are you on any meds for this? It sounds like money is tight for you. Can you see your therapist regularly? I dont know what it is about going to therapy but it sure does help. I have no idea why. I found the right person who understands chronic illness and pain.

I sure hope you feel better soon and that you get approved for the medicine your doc wants to use.

Its a terrible cycle- Depression, pain and lack of sleep. They will make each other worse. You are in my thoughts and dont be afraid to come to this forum and post often when you need to.

hugs
m
Chronic Lyme Disease,Fibromyalgia, CFS, PCOS, sleep apnea, hypothyroidism, type 2 diabetes, bulging discs to name a few

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 10/26/2010 8:55 AM (GMT -6)   
 
   Hello Monty's Mom!
 
     Well....goodness sakes! You are certianlly suffering!
 
     Sounds like maybe you need to find another PCD in the near future, if they wont script a better relief med for you.
 
      What worries me is the fainting spells. You can easily hurt yourself much worse, and it can be very dangerous to say the least. I shudder to think of you fainting in the shower or while cooking. I can not imagine a Dr knowing this would not try something else for you. Please be careful!
 
     Hope you get to feeling better soon! wink
 
   SE wink

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 10/26/2010 10:24 AM (GMT -6)   
I'm so sorry you are having such difficulty right now. I wish there were a way to help you with this situtation, but I have to admit that I have felt the same way at times, but I was wrong. My family has convinced me of that.

You are in my thoughts and prayers!
Retired Mom

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 10/26/2010 12:50 PM (GMT -6)   
SE: Think you better read the post again....LOL

It is not the doctor's she is having problems with. It is her insurance company.

It really irks me that you don't need 7 years of school and several years of specialized training to practice medicine in this country. All you need is a 2 year degree in accounting.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/26/2010 1:11 PM (GMT -6)   
I think a change in doctor's is needed. This one should be helping you out possible free samples..
working harder to get it thru the insurance . Wish I had the right magic words to help you thru all
this, Try a google search on the maker of the patch and see what they can do to help you
get this thru with your insurance, something. Insurance sure knows how to work that double edged sword.
I hope you can get some relief soon, so sorry you having to go thru all this..
(((((((((((((((((((((((((((((((((((Monty's Mom)))))))))))))))))))))))))))))))))))))))
vent anytime you need to your not a burden, hopefully someone will come by with better advise.
HUGZ
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16777
   Posted 10/26/2010 2:10 PM (GMT -6)   
MM sorry to hear things are going so badly for you right now, you were doing so good too. I know ins comp are the very worst to have to deal with and it is becoming common practice for them to pull this stunt they are with you over medication. This is happening more and more lately and its all to save a buck like they need it. To make matters worse we have a person on the other end that has absolutely no medical training what so ever making these decisions and I have a real problem with that.

You spoke of the nausea medication making you feel groggy or in a fog, there are meds like Reglan available in a generic that is not sedating like what ever you are taking. I also use Zofran which is very expensive daily, I live with nausea every day from the meds in my pump. Last week my PM dr gave me samples of Reglan that you place under your tongue for instant relief of nausea and it tastes like peppermint-works wonderfully well and so fast. Again, it is not sedating and available in a generic you may want to ask your dr for this.

I do hope you get things sorted out soon. Take care.
Moderator Chronic Pain Forum

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/26/2010 11:56 PM (GMT -6)   
 Dear Mindy,

   *warm hugg!* I hope you were able to find a few moments to yourself this afternoon. You have a lot on your plate. You are dealing with an incredible amount of stress. The uncontrolled pain spikes and flares must be making things much much worse.

     I do understand about the "social perception" of chronically ill patients. I hate "generalizations". Its so tacky to take Gods creations and lump us together as though we weren't unique blessings. I don't want to be defined by my social, financial or physical attributes. Don't people realize how much hurt they cause? ... Probably think they are giving us some "precious words" that are supposed to open our eyes to "their specific thought process". *shiver* So, I suggest you do what I do.. say a quick prayer and stroll on by. What else can you do?

      I am terribly sorry the side effects are so hard. My meds were increased yet again and I am so... not me... its really hard. I am trying hard to become "accustomed" to my med effects... My doctors are trying very hard to make me as comfortable as possible. Who would have thought I still have very hard, long "double days". I had a neighbor tell me once "How can you even FEEL ANYTHING with all that medication?". So tacky, if she only knew.

     The nausea.. all I can do at this point is use "Cola Syrup" (don't laugh) it is a product for children. It has dosing for adults on the label though. Its the only thing that works and is cheap enough for my budget with the extra benefit of no side effects. Might be worth a tryfor you?

      I too pass out from pain. Sometimes from my hypoparathyroism "complications". Sometimes because I am being hit with a lot of pain coupled with physical exertion. The only thing I can suggest is when you feel "Removed" physically from your surroundings, is when you need to sit. Even if there isn't a chair. Once you feel "Far away" you know "it" (passingout) is coming so who cares if you end up sitting on the ground or not at that point. Just sit as quickly as possible because you have less than a minute or so at that point. Try very very hard to remember to keep "ensure" or a similar product in your house. Drink one after each time it happens. Keep a log of when it happened, how long it lasted and how you "felt" immediately after (confusion or heavy body). It will help your doctors to know that information.

     More than anything I want you to know that you are not a burden. Not Not at all. We care, we really do. We wouldn't be the family we are today without you. From the moment you came here you have been family. And as family we want to hear about your bad days just as much as your good days. Even all the little silly things inbetween. You mean an awful lot to us here! Hang in there and stay strong!

*warm hugg*
       dani


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 10/27/2010 1:49 PM (GMT -6)   
I don't have enough energy to reply to everyone on here individually, but want to say thank you to all of you.
 
Good news! My doctor's appeals, my grievance, and the intervention of God has convinced the insurance company to approve the authorization for the fentanyl patch that has been the best pain relief for me with the fewest side effects! Hooray!
 
Something struck me today. Those of us suffering with chronic pain are in quite a position. If we take our medications as prescribed and they work or are lucky enough to have caring doctors who are truly concerned with helping us improve our pain we are blessed. For all those times that insurances, doctors, laws, and tolerance come into play we are stuck in a humiliating place of dibilitating pain and suffering. We feel like burdens, wastes of space, and at times doubt our own sanity. There were many times I thought I was going insane, and that I was simply "a drug addict making all this up for my next fix." (lovely gynecologic-oncologist moron who said there was nothing wrong with me.) IF we take our medications the correct way as prescribed when they do not work, then we are stuck in agonizing pain, complaining to the doctors that it is not enough. If we take more than prescribed or dare to in any way suggest what worked before or more effectively, then we are drug addicts.
 
This is not a happy place for anyone to be. Jim is right, all you need to practice medicine is an accountant's degree. I personally think its a calculator! The best part of all this.....The doctor who denied and subsequently approved my authorization is a podiatrist. And this is the future of healthcare in America?

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 10/27/2010 6:32 PM (GMT -6)   
Monty's Mom, I am so glad you had some good news today. Celebrate the moment!!



HUGS
SUZANE

One day at a time!!

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 10/27/2010 8:03 PM (GMT -6)   
I'm sending you a BIG HUG. I think you really need it, trying to deal with the incompetency of a medical insurance system, on top of incompetent doctors, on top of community attitiude, on top of chronic pain, sleep deprivation and family!!! Thank ggodness you got the fentenyl approved. I love my pain patches, so I can see why you like them too. I can't imagine needing insurance approval to get them, we just need to be prescribed and given authority from medicare. So much easier.
So A huge HUG coming your way over the Pacific ocean, coming to you about now. There did you feel it?
Best best wishes, hope that fentenyl kicks in soon, golitho

Áthas
Regular Member


Date Joined Aug 2010
Total Posts : 55
   Posted 10/28/2010 12:37 PM (GMT -6)   
Mm, you expressed some of the feelings I'm having today and I haven't ever asked for medication. I wish other people onderstood a bit better. I makes me furious sometimes and sometimes desperate, not being taken seriously with my problems and with the pain. Health insurances in germany and the whole health system are getting a lot worse. I'm hoping that somehow, I can persuade the health insurance that I have a chronic disease with the osteoarthritis so I will have to pay less for the treatment I need. If I get any, right now I'm not even getting that.
I guess nobody who hasn't been suffering from chronic pain can really understand us, but many don't even try!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16777
   Posted 10/28/2010 3:27 PM (GMT -6)   
Nothing like having a foot dr decide if your neck or back really hurts, huh. Wonder what kinds of decisions he makes on people who say have undergone something like brain surgery or even heart surgery. I bet they don't good pain medication either. What morons we have working in the insurance industry. The podiatrist is one step above having no knowledge of medical issues with the spine.
Moderator Chronic Pain Forum

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/28/2010 3:44 PM (GMT -6)   
Glad you got the medicine,
sure hope your feeling better soon..
(((((((((((((((((((((((((((((((((MM))))))))))))))))))))))))))))))))))))))))))
healing Hugz and Prayers
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********
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