New to board - looking for any suggestions please - Thanks!!

[mainecoon66]

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. 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!

Thank you so much in advance for any responses!

[ARANGER]

Hey Maine,

Sorry to hear about your pain issues. I know it can be frustrating and finding good docs can sometimes take years. Too many docs have different ideas on how to treat pain. Some docs are opiodphobic. Others only push one treatment plan, while others use a mulidisciplinary approach.

I know what you mean about getting the mixed messages. Before my current pain doc, my last one made you feel guilty for taking pain meds. The sad but true part all of this is, some people will have to take pain meds for life. Others may only have acute pain, or fixed later by surgery, etc. But the fact is, many people will be on meds for life. Its kind of a two-fold process. One, if you have to take pain meds for life, then you have to come to accept it and work with the side effects and realize that even with the meds, you'll never be 100% pain free. Two, finding a doc that also realizes this and is willing to treat you.

Treating pain in my opinion is a very difficult process. But I think trying as many different types of treatments (PT, injections, massage, etc) is sometimes the way to go. Because I have spoke with several people that just take meds and become depressed, don't leave the house, have social problems, etc. If you are one that will be taking meds for a long time, then even just a membership at a gym or something to get out of the house and socialize, use a spa, or whatever can help tremendously.

As far as pain meds and long term, it depends. Obviously certain meds (Percocet, Vicodin) have Tylenol in them and long term use of Tylenol is not recommended. But these meds by themselves (Oxycodone, Hydrocodone, Morphine) so far do not seem to have long term problems. However, one thing to keep in mind is, LA meds up until just a 5-10 years ago were not used as common as they are now. So there are not as many studies to see what happens after 10-20 years on meds.

The stimulator and pump are options that you should look into. If you have tried everything out there, it is definantely an option. I know that Shoreline has a pump and seems to get good relief from it and you are able to lower your oral intake. Maybe he could give you some advise on the pump. Do some research and discuss it with your doc.

Treating pain is a continuing issue. You have to accept the fact that you may have pain life and try and accomodate for it. It may mean that your life changes, but its not over. Achieving a better quality of life is the goal. It may not be that same as when you were 20, but if you have a positive outlook on life and do what you can with what you are given, then you can at least live a better life. I know that is easier said then done, but face it, we can't go back in life, we can only move forward. So try to focus on what you and your docs can do to improve your quality of life now

Like you mentioned, sometimes changing meds helps out also. It can take a long time to find out what works and what does not. Morphine is more sedating than Oxycodone. Its something to explore and speak with your doc about.

Keep your head up. I know sometimes it gets so frustrating, especially when you have to convince a doc of your pain. But there is light at the end of the tunnel. Sometimes it just takes a while to get there

Hope you start feeling better soon. Take Care

[mainecoon66]

Arranger, thanks for your kind and encouraging response. You make a lot of sense. I didn't realize till I started writing how much I needed to vent, so thanks also for your patience!

As you so intuitively zoned in on, one of the biggest challenges for me has been acceptance. I guess it really is at the center of many of the things I've been struggling with. Acceptance of where I am now, regardless of how things used to be. Acceptance of the unknown in terms of long-term use of the meds. This has even played into finding the line between tolerating pain and accepting the side effects of the meds, and being at peace with that decision. I've finally realized that while I might like one, there is no absolute measure for this - in the end it is a personal decision that others can only guide you in. I guess I may end up looking at this as one of the 'benefits' of my illness...I know I used to hold life too tightly and this has forced me to learn to go more with the flow!

It's funny you mentioned a gym membership...my husband and I just started looking into one this weekend! Leaving the house has definitely become an issue for me. A few years ago I changed jobs to pursue my dream of being an artist, and used to volunteer and take art classes. I ended up temporarily quitting both because my health was too unpredictable and I didn't want to be unreliable. But they are definitely things I want to get back to.

I have many good supports in my life and am lucky and thankful for that. My husband is unbelievable. I think I also finally have good docs who are compassionate and knowledgable.

Anyway, I'm going to talk to my doc about switching to Oxycontin (or other options), and look into the stimulator and pump. I think the sedation of morphine is affecting my mood and life in general more than I think...need to find a better balance between pain control and being able to function.

Thanks again for your response. My new mantra....ACCEPTANCE Take care.

[mpvt]

Hi Mainecoon:

Have you looked into methadone??It is an exellent drug for chronic pain and for someone who has a high tolerance to most opiates.Long term use of methadone has shown no adverse effects on any of the major organs.I rarely suggest methadone to people because I think it should be used after all else has failed and the patient needs to be on a pain killer for the rest of their life.I was on everything from propoxyphene to morphine for 22 years.The whole time getting a toleerance sometimes within weeks of taking the drug.When I first started methadone over 3 years ago I was taking 3 000mgs of ms contin a day with little effect and a deep depression to boot.Methadone gives me enough releif that I can go back to work,mind you it's only part time but hey I'm working.Also it completely reversed my depression within days of taking it.I take 330mgs a day and I exercise regularily and eat well.Also I don't take any benzo's or drink as they are a very bad mix with methadone.Methadone is for life for most people so do your research before you decide.Good luck on whatever path you choose......Dave

[Fabrashamx]

Hi Maine and welcome to the pain boards! Please do not ever feel the need to apologize for a long post, most of our stories are complex and have gone on for many years, we are here as a community to share our expieriences and offer one another hope when we can and support when we can't. I have learned so much here and been helped so many times. We have a lot in common, I am a 43 year old woman who had a ruptured disc in my neck 12 years ago, followed by a fusion, pain, nerve damage, loss of my livelyhood, weight gain, depression, and chronic pain. I have DDD and a faucet dysfunction in my lower back. First of all, there is a reason some doctors specialize in pain care, they learn about things like addiction vs.dependence (there are millions of practicing doctors who do not recognize this distiction!) and tolerence issues. Your pain doctor is on the right path, don't ever feel you shouldn't be on medication that is giving you relief, no matter who tells you otherwise! Some of us don't even tell family members what we take because of the unfair opiate phobia in this country. Medically, I will leave the suggestions to Shoreline, my elder and better in those matters, but support wise, I want to welcome you to our 'family' and tell you that you are not alone. Our lives have and will continue to change in many ways, but we can have hope and friendship with people who truly do understand on these boards. I look forward to hearing from you again! Your Friend, Fabby