Glad to have found support

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)

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

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...

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