Discussions that mention valium

Pain Management board

Hi everyone,

I have recently joined this board...seems like a lot of knowledgable compassionate folks. I am in a dilemma with my pain management and would really appreciate ANY help or opinions.

P.S. - After writing this, I know this is a long post. I thank anyone who sticks with it from the bottom of my heart. :angel: I just feel so desperate. I have many good things in my life, but I feel I need to get to a stable place with my pain and my approach to managing it.

A little background on me - I'll try to keep as short as possible ;) - I am a 40yr old female. I have had low back pain and sciatica for over 15 years now. At first it came and went so I tried to just tough it out. I have been a jogger since I was a kid but in my 30's had to switch to hiking and elliptical due to pain. In 2001 things seemed to go downhill - started having diffuse arm and leg pain, nausea, and bouts of extreme fatigue. Went to a rheumatologist who dx'd me with fibromyalgia. (after basic blood work to rule out lupus etc, but no xrays, mri's). Gave me vicodin, valium.

I went on like this for 4 years. Finally got fed up with pain rollercoaster. Vicodin didn't seem to be cutting it. Also, after doing more reading seemed to me I should have had more tests before landing on fibro dx. So in 2004 I went back to rheum. He put me on 20mg oxycontin twice a day. At first this seemed to work, but after 2 month honeymoon period I felt I needed more. Doc was reluctant, so we went through 3 month period of trying a lot of different meds at same dose - Dilaudid, MS Contin. I feel this really messed with my body and tolerance, but don't know. Found a pain management doc and ended up being on 120mg MS Contin(40mg every 8 hrs) for most of 2005, with MS IR for breakthrough. I was in pain level of 5 or higher most of time, but I guess I was afraid of the meds.

Last year (and bless those of you who are still with me!!!) I hit the wall. Something needed to change. So I went to my local university hospital and found a new set of docs who ran a bunch of tests. Turns out in the last 2 years I've had mono and west nile (might cause a little fatigue, huh?!). Last year I had gall bladder out and was dx'd with Hashimoto's low thyroid, primary Addison's disease (adrenal's don't make enough cortisone), and Scheuermann's disease (spine doesn't grow right during puberty - front less than back so my vertebrae are too wedge shaped. Causes discs to dry out, facet pain, and basically your spine ages faster than it should. This all leads to back pain and fatigue) So, whew, there it is..has been hard to absorb, but it explained a lot and I know could be a lot worse.

Anyway, today...I am on Avinza 120mg 2x day. Also take Ativan, Lyrica (new for me), Trazadone (just started), Cortisone (for Addison's). I tend to need up to 4 doses of 30-45mg of oxycodone a day for breakthrough. Have had 3 spinal injections which seemed to help for a few months. In early May had radio frequency burning (L4-S1) for facet pain and was started on Lyrica. Since RFK procedure my pain is worse, likely from inflammation from procedure...can't stand for more than 30 minutes, or walk around block without pain really increasing to point where I find it hard to control even with BT meds. Doc says I need to wait another 3 weeks for inflammation to go down and know what long term will be.

Also, my pituitary system is not working great because of pain meds (at least that's what they tell me). I've also gained 60 pounds in the last year, (20 when first started prednisone, 15 in first month on lyrica, rest from lying on couch eating ice cream). The Lyrica helped so I am still on it. Up until now I have weighed the same my whole life and find this weight gain so depressing.

I have 2 pain docs - my pain med doc (new, and great) and my epidural doc. Saw my epidural doc this week and she expressed concern over my dosage, said I was too young to be on these meds, asked where I expect to be in 5 years? This after my pain med doc reassured me that my dose was not too high. I feel I get mixed messages like this from docs - one will say that you take what you need to control pain, another will have a fit at what I'm taking.

I am at a loss guys. I feel like I am on a fast track to nowhere. I know that so many have it worse than I do and find meaningingful ways to contribute to life. I have overcome setbacks in my life, but this one seems in danger of wearing me down. I saw a therapist for several years to work on my relationship to my illness, among other things. I have always had a love/hate relationship to the meds. I hate taking them, but when I try and go off of them my pain becomes so bad I'm willing to swallow drano for some relief. I feel I should somehow be able to tough it out like before. I find the Avinza great for relief but very sedating, so I spend a lot of time on couch. I know I am also depressed.

So I guess I am looking for any and all opinions on what I could explore as a solution. My doc suggested I look into the Medtronics stimulator. I've also been reading your posts about the pump. I've thought about going back to Oxycontin as it was much better on my mood. I guess the upshot I'm getting from my doc (and other docs over years) seems to be that I have to get off the pain meds soon or my life is going to be unnaturally short. Is that true? It seems from reading these boards that there are others who live with CP and need meds as a part of living. I'm tired of walking around with fear. I know I have to get back to exercize, and diet. But I fear this isn't going to be enough to get rid of my pain. Then what?

Someone here (I think it was Shoreline) said that there is so little research on long term use of these meds. I so agree. What are you supposed to do when you need to take them to have a life, and some dr's tell you that if you don't get off them you won't have a life? There seem to be so many contradictory opinions out there. I am tired of feeling fear and guilt every time I swallow my meds. Help! :confused:

Thank you so much in advance for any responses! :)