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New Member

Date Joined May 2011
Total Posts : 2
   Posted 5/31/2011 8:03 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!!!

Forum Moderator

Date Joined Jan 2005
Total Posts : 9249
   Posted 6/1/2011 12:26 AM (GMT -6)   
Hi Everyday~

First of all you need a hug...a soft, gentle hug.. {{{{{Everyday}}}}} If it doesn't feel better physically I do hope a sincere hug feels better emotionally.

Your pain and desperation comes through shockingly clear. I can barely imagine the pain you've suffered as a child and to have doctors keep treating you as a druggie is an insult...which you certainly don't need. There are a couple of thoughts that come to mind.

First, there are lots of members on Healing Well who use the services of a pain psychiatrist. You are likely aware of their existence but from the folks here who's used them it sounds like they can be very helpful. That is a small bandage on a large problem but it might help.

Also, if I were you I would get to the nearest teaching/university hospital. These folks take on the tough cases and don't just pass you by because they don't know what to do. You might be able to get into some clinical trials too. I don't know where you live but Stanford has a famous pain clinic and often do clinical studies.

Here's a link to lists of teaching/university hospitals around the world. It's not exclusive but it's a start. This can be found in the Chronic Pain 101 thread at the top of the list.

There has to be a better answer and it seems that asking around the doctors you've already seen isn't getting you any. But trying one of the university hospitals would be a chance for something new, and something that just might help. I'm very impressed by your attitude to not give up your life. Do be careful of not putting yourself in any jeopardy while forging ahead but do keep living your life for You!

Warm hugs and love!
Moderator on the Fibromyalgia and Chronic Pain forums
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.
Use the talents you possess, for the woods would be very silent if no birds sang except the best.

Veteran Member

Date Joined Mar 2011
Total Posts : 1276
   Posted 6/1/2011 12:50 AM (GMT -6)   
Hi Everyday, and welcome to HW. Just as your struggles show through, so too does your strength and determination of character. I'm sorry that you are hurting so badly, and with seemingly nowhere to turn to. I really hope that you can find a team who will search for that effective management plan for you.

*gentle hugs*

CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Screaming Eagle
Veteran Member

Date Joined Sep 2009
Total Posts : 5005
   Posted 6/1/2011 8:18 AM (GMT -6)   


       It looks like we have a double post going on here, so I'm going to ask the members to please use the other post instead of this one. It will be less confusing that way.



Moderator Chronic Pain Forum

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