kind of a vent,rant or just a plea for someone to understand, kinda

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AngMichelle
Veteran Member


Date Joined Apr 2006
Total Posts : 932
   Posted 9/7/2009 6:24 AM (GMT -7)   
One of my problems is no one understands why I'm in such pain.
Two, my pain isn't really constant, but I have something happen just about every week that causes me pain, Ex. Migraine, ovarian cyst, pluricy, another migraine, scar tissue in abdom., jaw dislocation, etc.
Three, I've been on some kind of pain med for years and doctors for some reason want me off.
Four, the only pain docs. in my town treated me once for an intrapped nerve, did injections and pain meds, helped but I had surgery and fixed the problem. When I was in the hospital with terrible pain before I found a suregon to help they said, "they can no longer help me" and won't see me for my other problems b/c they are not "chronic".
Five, I have a HUGE tolerance. For ex. when I am put to sleep it takes 3x the amount of meds so says my doctors. I took fentynl suckers for a while for migraines, helped, but I built a tolerance. For my jaw dislocations my hospital can only do moderate sedation, whilch is versed and diladid. Versed makes me panic rather than relax me so they give 2 of diladid and maybe some morphine and I'm wide awake, no sedation at all. So me taking 5mg Hydrocodone only 3x a day is like drinking a glass of water sometimes, but doc doesn't want to go higher, he's "wants to see me off that stuff". He had a wrist surgery and took no pain meds just so he could tell his patients that it wasn't always needed...told it to everybody when they saw the pin in his wrist. BUT this man has treated me for about 20 years, knows me and my family, and I trust him. I think he is just scared of the DEA or something. It seems like everybody in my town got really scarred of prescribing pain meds, even in the hospital, around last year.

I have a lot of weird side effects too, like ambien makes me hyper, this cough suryp I got the pharmist says, You'll sleep well tonight, well's its 5 in the morning and I haven't been to
sleep yet...UPDATE on sleep, doctor let me try chloral hydrate and it did  not work. I was so frustrated. Its 8am and I have slept NONE tonight. She gave me an old anti-depressant that causes sedation but I'm afraid to take to AD's. May try anyway. I have literally tried everything. She said " i have to say you are my most complicated patient I have ever seen", but she seems to really want to help.

I am seeing a psychologist and I told him about my problem with pain meds and we are working on it. I am learning some new things with him, EMDR, ever heard of this?
I'm trying really hard. Really. They say my pain may go away once I'm off pain meds, I wish to goodness this could be true.
Its just a hard road. Please don't judge me, but i do get what everyone is saying. I just don't know where to turn anymore. It would be easier if someone would say, "you have ThIs" instead of my many problems.
I"m only 24 and I want my life back. What will that take?????
sorry for the rant...
Ang
<S> </S>
Migraines, Ovarian Cyst, repeat and multiple jaw dislocations, depression/anxiety, PTSD, and the list goes on
On Jan 17th 2008 I had a very traumatic situation ending in a colostomy. had the reversal which put me through months of hell, but better now. I have had over 12 pretty major surgeries, 100's of "procedures", my immune system is a NO GO. I've been in and out of the hospital for the last 10 years. I have no real Dx's really. I have a lot of "Psuedo" (sp?) symptoms, so they say. This in just 24 years and its just half the story. (Violin's playing yet?)

Meds: Celexa, Klonopin, Serequel, Hydrocodone)

 May God give you a reason to smile today, an extra reason
to laugh, and bring joy to your soul.


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14412
   Posted 9/7/2009 8:13 AM (GMT -7)   
Lordy! I know you have frustrations! I have heard of people going totally off pain meds for awhile and then starting new at a lower dose. It's torture to adjust though.

Joy

painfuldaze
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/8/2009 4:33 PM (GMT -7)   
Hello,
 
I am totally brand new to this - signed up just now so that I could post to you!!
 
Don't feel hopeless. I think you just haven't seen the right type of doctor. Now, I didn't read all of your story or your post but have you seen a Rheumatologist? Or is your Primary Care doctor running these tests on you? You CAN have a false-negative on some of these auto-immune illnesses which would definitely explain a lot of what could be happening with you.
 
Like I said, I haven't read much of your story but just felt compelled to write to you and believe me, I'm really up  to my own eyeballs right now. I have probably a dozen of these illnesses, am twice your age, am a Registered Nurse but disabled with these illnesses unfortunately, and now I'm trying to figure out how to have a website and create books about all of this stuff I see some of you guys asking questions about. Would it be helpful if you had an ebooks to explain things to you like we are talking now instead of like on these websites? I would also like to have a Q&A thing on my website (don't know how to go about this yet) so that folks could ask my advice on anything!
 
Ya know, I live with pain every day of my life and have been on the same pain regime for many years. My Doctors have all wanted to increase the dose or change them to stronger ones but not me. But every person is different and a lot of Doctors ARE afraid of the DEA. It is a fact that they get watched very closely. Its just a shame though that so many people out there live with horrible pain every day of their life because their doctors are afraid and its not easy to switch doctors.
Well just to let you know about me, my Immune System started skipping out on me and we didn't even know at the time or for many years to come that this is what played the major role in what was and is going on with me. I started out as a teen with chronic respiratory and sinus problems and tumors and surgery and then chronic cysts on my ovaries bursting everywhere and then a huge tumor inside my uterus - the largest myoma ever back in 1992. Yuk!
 
Anyway, just really wanted to make you feel a little better about things. Hope I accomplished that. Keep a lookout for me somewhere, somehow because I am determined to help people. Some of these websites just feel kindof cold and impersonal and I want to make everything I do feel like we are sitting down at my home having a cup of coffee or tea, ya know?
 
I'd love to hear back from you, and anyone else. Also please anyone, let me know what you think about my website and advice idea. My email is kvhux2001@yahoo.com. I look forward to hearing from any and all of you!! And FYI, Anything I say to you will NOT be in the capacity of an RN. Just someone with medical knowledge along with the fact that I have had and still have a ton of health issues (to list a few...Systemic Lupus, Rheumatoid Arthritis, Severe Peripheral Neuropathy, Sjogrens Syndrome, Diabetes Mellitus, and the list goes on and on... smhair ) and No Immune System to speak of! Where did I put that thing??? Take care, Painfuldaze :o]

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 9/8/2009 11:59 PM (GMT -7)   
Ang, You like many of us are on a journey through the continuium of pain. It is common for us to travel some distance to get the doctor who cares and will be willing to do what they can to help reduce the level of pain and increase our ability to function.  
 
Painfuldaze made the statement that some of these sites are cold and impersonal. You have been around long enough to know that this is not true about this site. I am not trying to put her down but this site offers the best encouragement and comfort than any others sites most of us have been associated with. I would encourage you to seek out a pain management specialist even if you have look outside your tow. Also, you don't mention how long you have been seeing the psy. but they can be a great help.
 
We are not here to offer medical advise but are here to share our experiences in such a way that it can encourage others. More drugs is not always the answer but the right ones could go a long way in getting the relief that is necessary.

painfuldaze
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/9/2009 2:01 AM (GMT -7)   
I was not referring to this site! If I had, you would have known it.
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