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EverydaysAstruggle
New Member


Date Joined May 2011
Total Posts : 2
   Posted 5/31/2011 8:04 PM (GMT -6)   
Reading some of the posts on this site really makes me feel better. For the first time I feel as if I am not the only one dealing with chronic pain all day everyday. Consuming and completely taking over my life. I have tried every type of pain medication in the book. I can not seem to find ANYTHING that can releive my pain. I was born with Arnold chiari malformation and as a little girl 8,9,10 I would go to the ER with severe migraines and I am a tiny girl now at the age of 30 (5'7 and 102 lbs) but when I was young in the ER they would give me Demerol and it wouldn't work I was still in pain.
 
 The doctors were amazed. They were giving me enough to kill a baby horse and I was getting no pain relief. I had surgery to correct my malformation in 1999. After I had occasional migraines but not as bad and I was no longer visiting the ER 5x a week. At 19 I was finally able to start living my life. Then 8 years ago I got diagnosed with lupus. I had to take so much oral steroids for about a year because my first flare up when diagnosed was so bad. I developed severe osteoprosis and while trying to lift my mattress my back snapped.
 
 I fell to the floor couldn't move my legs or arms I thought I was paralyzed. The pop/crack I heard was so loud I though my friend sitting pretty close to me at the time could hear it, but she couldn't. After about 5 min a was able to slowly get up. I fractured L-4 and L-5. I wore a back brace for 9 months. Surgery was not an option because my bones were so weak doctor said I had the bones of an 85 year old lady. Since that day my life has never been the same.
 
 I was prescribed vicodin and I could take 30 with no effect. I had genetic testing done because pain medications were not working and doctors treated me like a drug addict. He refused to change my medication to anything higher than the vicodin. Come to find out the CYP2D6 pathway which is the path that almost all pain medications use to be effective I was given the metabolizing trait from only 1 of my parents. So I have half the receptors needed for pain medications to attach to for pain releif.
 
 With such a small amount of receptors by the time the drug gets in my system and finds the few receptors I have and attach to block my pain the drug has already gone through my system. There are a couple other pathways I have issues with that my genetic testing showed. I can take 15 pain killers doesnt matter which one, 5 ambien, 5 Valium, 2 trazadone, 6 soma all at one time and not sleep or get pain relief. I have tried fentynal patches nothing, morphine, all the oxys, the codones, morphones, and I get little relief. I don't know what to do anymore.
 
 My pain management dr tells me I shouldn't work. I can't do that. I have been going to school for my P.A for the last 6 years part time. There are some days I feel as if I can't go on anymore like this. I am just about to turn 30. I can't live the rest of my life like this. I have goals and dreams. I work 40 hours a week and go to school part time and I cry everyday. So far methadone I think has worked the best for me to give me toterable relief.
 
I am on morphine too I take 3 times a day for breakthrough pain. I feel like I have to switch my medications every month because the first 2-3 days once switching up my medications is the only time I really seem to get any type of descent releif. My pain man dr says that there's no way my body can get used to these medications and start to become ineffective. I know that can not be true ??? Isn't that what tolerance is?? I want every physician that has treated me like I am a drug addict there seeking drugs to spend a day in my body. I want to see them cry like little babies. I don't know what to do anymore. I refuse to give up my life, my future, my dreams. I just don't know seriously how much longer I can take this!!!
 
 I have thought about suicide more times then I can count. With my lupus I am sooo tired I hurt everywhere and my spine feels like it's only an inch tall. I have shrunk in my height by 5 inches and I feel like I am unable to hold my body up. Anyone have any suggestions? Words of inspiration, hope, encouragement? I need something to help me continue to try to make it through each day. I think I need to change my morphine Immediate release for my breakthrough pain to something else to take in between my methadone.
 
I used the fentynal patch for about a month I was given 25 mcg. At one point I had 5 patches on and was still hurting. If I cut open the patches and eat the gel inside I would get some releif. I've tried opana did nothing. You name it I have tried it. But never have done illegal street drugs. Hope you guys can be that support I need. People just like me going through what I am going through.
 
I know I wrote a lot I have been dealing with this for way too long. Dr wants me to quit my job and school because he doesn't want to up my dosages. I will not live the rest of my life in a small apartment laying on a couch all day living off disability!! I REFUSE!!!
 
 
 
Please take note:(edited for eaiser reading) Thanks! SE

Post Edited By Moderator (Screaming Eagle) : 6/1/2011 7:36:48 AM (GMT-6)


Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 5/31/2011 8:11 PM (GMT -6)   
Hi Everyday...

Welcome to HW!...

If we could ask a big favor for you to go back and edit your post to put into paragraphs...It's too hard to read for a lot of us on here and I want you to get the most responses...

I haven't read your whole post yet...but if you click on the pencil in the upper right hand corner...that is the edit button...

I usually try to make a new paragraph every 4-6 sentences...

Or maybe a mod can do this?

Again...we are happy you have found us.:)..and will write more a little later...

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/1/2011 1:22 AM (GMT -6)   
Hi Everyday....

Welcome to our little group here.  I'm glad you've done some reading here...and that it has helped you.
 
I'm truly sorry you are suffering so much.  I hear the desperation in your post, I really do.  I've been in that place of desperation, years ago, before I got proper pain management.  I thought it would never get better.... Like you, I tried every medication out there.  My meds would only "work" for a few days when I switched things up and so forth.  Long story - like you, I was desperate for pain relief and a better quality of life. 
 
So, the one encouragement I can give to you - is that it can get better...because I've been where you are at - and I'm now at a stable place.  No, my pain is not gone - by any means.  On a scale of 1 to 10, my daily pain scale is about a 6 to 7 - and this is on many meds.  However, this is tolerable for me.... and 100x better than the 8 to 9 that I was living w/ daily. 
 
Point being... it can get better.  I know it's hard to see that in a place of desperation - but I promise you it can.  My journey involved many things - a better pain management doctor.  Changing my attitude about things.  Completely changing all of my medications - and finding the "right" ones for me.  Using things other than meds - such as nerve blocks; trigger point injections; lidocaine patches; and on and on. 
 
A couple of other thoughts.  I understand what you are saying about "wanting" to continue working, going to school, living a "normal" life.  I understand.  Unfortunately, many of us here have had to change our life's plan.... sacrifice what we want to do because our bodies won't do what we want/need it to do.  I don't know your unique circumstances.... but I know working 40 plus hours PLUS school w/ chronic pain is difficult.
 
Finally - and please forgive me...but it's the mom in me :) as well as having vast experience w/ all these different meds .... again, I understand desperation completely and I say this w/ absolutely no judgment.  But using medications above what you are prescribed.... or in a way that they are not intended (such as the fentanyl patch).... can just lead to horrendous results.  I've been on fentanyl patches; and I am currently on oral fentanyl.  It's not a medication to be taken lightly or abused in anway.  I just hate to hear of anyone making choices led by desperation - knowing what the possible consequences can be.
 
My breakthrough meds (depending on what my pain levels are and what pain is flaring) are dilaudid (hydromorphone) and Actiq (oral fentanyl).  Has your PM ever used either for you? 
 
Hang in there..... --Tina
Dx: Disabled due to many, many health/pain issues
Meds: Heart meds, Effexor, various Pain Meds (I've literally been on them all)...and on the list goes; intrathecal pain pump candidate

Personal: Christian wife and mom; I have six sons...and two "surprise" blessings - identical twin daughters (born 9/2010)

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 6/1/2011 8:31 AM (GMT -6)   
 
 
          Good morning Everyday!
 
                Welcome to the "Chronic Pain" forum!
 
       It looks like you double posted by mistake, so to keep the members and you from possibly getting confused,
  I locked the other thread, and we will all use this one to support you.
 
         I will be right back to post a better welcome, as I have some pressing issues to take care of at the moment.
 
   Enjoy the forum!...and again Welcome!
 
 SE
Moderator Chronic Pain Forum

Weekly Quote!

"Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together"

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 6/1/2011 8:33 AM (GMT -6)   
I'm very sorry about your situation, seems like your doctors should listen to you.
Straydog/Susie might be able to offer up something so once she see's your post You'll have a
good person talking to you, Ask about a pain medication pump, they implant it inside you
which puts the medicine closer to where it needs to be, Stray/Susie knows about these and
has more info on them...don't know why your doctors have not thought about that...
and I agree with you lying on a couch all day is not an option, my new pm resently told me to stop something
I love to do and so I'm thinking of getting another pm doc because of that. Giving up is never an option
so you go for that degree it will be worth it, you can and will do it...
well wishes...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Amelius
New Member


Date Joined Jun 2011
Total Posts : 2
   Posted 6/1/2011 10:15 PM (GMT -6)   
Hi -- I'm new here, too. Very glad to have found this forum! Am looking through all the threads, and I look forward to getting to know you all better. More than anything, I need hope, and it seems that you guys are very good at reminding one another that hope still exists, even in our very darkest times.

Not quite sure about all the rules and protocol yet, so if anyone has any tips, they are very welcome!

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/2/2011 12:01 AM (GMT -6)   
Amelius -

Welcome!  Yep - I think that's one of the biggest strengths of our group here is pulling one another through the hard times.... and giving encouragement to keep going - even during the hardest of times. 
 
What I would suggest you do.... is start a new post... and introduce yourself.... whatever info you are comfortable giving - what your chronic pain issues are, etc.  That way.... everyone will read it and give you a proper welcome!
 
Look forward to talking more.... --Tina

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 6/2/2011 8:42 AM (GMT -6)   
Oh sweetie, I feel for you so much.  First, cp patients are never without pain.  There is no magic pill that will take it away.  What we learn to do, is to get to a place where the pain is letting you have a quality of life.
 
I was on methadone for about 4-5 years, methadone is one of the best pain meds I have ever taken.  Sadly the way people (drs, er doctors, etc), begin to treat you as though you a junkie.  The stigma attached to methadone is so bad.
 
Do not get me started on why the one medication that will do a fair to good job in keeping pain levels at a place that you are able to have a good quality of life is looked on with such digust by the medical people that you feel like you have to explain, constantly why you are taking methadone.  Methadone is inexpensive, and works.
 
I have had emt personnel ask me what medicines I take, as soon as I say methadone, my arms are flipped over and they are looking for track marks.  There are none.
 
Just about 4 or so years ago I had enough.  Although it was not my call to change my meds, the pm doctor I had at the time said I had to change meds or change doctors.  At that time I changed meds.  I also changed pm doctors, but stayed on the meds I had been forced to change to.
 
I would like for some of the pm doctors I have seen to walk in my shoes for 1 hour, and tell me how it feels.  We know thats not going to happen, and its bad karma to wish that on anybody.
 
I hope and pray that you get what you need to make your quality of life improve enough to not be in agony 24-7.
 
Tender hugs to you, keep coming back, at this forum we all have walked your walk.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson
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