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Anonymous (reply to lesley seymour)

Living with pain is very tough Lesley. As for the reason she can't get pain mgmt help Lesley because of "fragile organs", I've never heard that one yet. It has to be a first. Think of it this way, how many cancer patients and others far worse than us are being treated w/pain meds. That is a crock and sounds like drs. worrying too much about their malpractice ins.&reputation or simply just don't want to fill out Fed.Gov.forms. But seriously Lesley,Your friend has two strikes against her right in the front door with almost any dr..She is a woman and looks okay, and is in need of a time release narcotic. 2 strikes right there. Now here is the kicker Lesley, if she asks for pain meds, shows any emotions of needing it because she can't live like this anymore...well some of these docs signal her as a "drug seeking" patient. Now you might think no way is this happening. It does, & if she was a man the tables would most likely be turned at least 70% in "his" favor of getting help. I hear this story everyday and it happened to me more than once in my life dealing with all of this. One dr.told my husb.Ijust needed a second job instead of laying around home! I was raising 4 kids, homeschooling & working 30hrs outside the house & running a horse farm & he felt I needed a second job to deal with the pain. What I needed was to lighten my load and get some serious new medical care. I found it to be a long journey until I found someone I could have a positive and good working relationship with. Sadly almost 6 years! My best advice to anyone is keep searching until you find an excellent pain specialist. A regular dr.,neurologist or rheumatologist cannot treat this type of pain! If you have neuropathy we see a neurologist, heart issues we go to our cardiologist, and so on. Which is part of Sjogren's patient's problems, too many different doctors. We suffer with chronic and debilitating pain we then see a PainSpecialist this is the way to go & fight to get a team effort in place too w/all her treating docs. They don't communicate like they should & living w/Sjogrens & it's many gifts we have so many specialists. Medical Dr., Rheumatologist, Neurologist, Cardiologist, Dermatologist,Lung Specialist, GI dr, eye, dentist... things go nuts. I made a binder and sections where I keep all med.records w/me for 6mths-1yr @ every dr.appt.Blood tests, Medical tests,surgeries, notes, and journals of my days. Surgeries I never remove nor do I remove important tests or cardiac care or medication list(whch I keep copies for docs instead of having to write them out). It sure helps with our brain fog too. Even my tests I get CD/DVD copies of them all when avail. If you ask at the time of the test stating you need it for your many doctors treating you, they will make you one up right then. The more we have with us @ ea. appt. the better. Plus it helps from repeating tests. I'll go to one dr. who wants a bunch of bloodwork. Another dr. a week later wants to order some & I show him what has been done in the last so many days/wks to avoid repeats. We are allowed one free copy of all our tests, etc. at N/C. I get mine @ ea.visit. In fact even healthy persons should do this. At 1st it took dr.s some getting use to, some hated it & those I fired & replaced with docs who were willing to work with it. Now it is the first thing they ask for and say they absolutely love it. No break down of communications anymore, plus I keep paper in it to jot notes of the appt because I too forget a lto! HOW DOES ALL THIS HELP SOMEONE LIVING W/CHRONIC PAIN? It gives us back some control of our lives. A mind is a powerful thing in not allowing us to handle pain. If we give up control of our lives to others we begin to feel worthless, dependent, and loose our identity only being known as the person w/sjogrens dealing w/pain. It also then allows the pain to also control us. Gaining back that control is such a wonderful sense of freedom I can't express it. It won't ever be perfect, nor pain-free, but it sounds like it can be better. Knowledge is a powerful thing and if she lets the drs. tell her what she can or can't do to treat her disease, she is allowing them to take over her own body and control. That is a powerful thing, I never realized. We can't do it alone though! With a good combination of meds,learning to work w/ourselves, having support,it really does help. Every once in a while I bring supports to drs. I'll bring my husband usually so he is there for questions and trust me when given the chance doctors will talk to them over you. They want to know how you "really" are doing. They can see many of the real pictures through those close to us. They also see we are not coming in there just to come in, they see it is all real, our lives the way they are. So about every 3 mths my husband tags along to dr. day. That is another thing that will drive you nuts too is dr. appts. It took me years to stand up to the bunch of them but when I did, wow, releif. I don't allow appts. to be scattered all over the month anymore, I am sick afterall and running all the time, well it only made the pain more unmanageable. I am very careful on my scheduling & refuse to spend more than 2 days per week for drs unless something is up. Also if she doesn't do this yet, she is going to have to learn to just give it up and give in to her body and lounge all day on those real bad days and sometimes weeks. Sometimes you just have to give in & let your body win so your mind can rest. But please know There are meds out there now that really help w/o a lot of the side effects. For me,I have tried it all, the worst are any mindaltering drugs or antidepresents. They never worked for my pain and made me feel terrible. Many drs. like to throw out elavil, and other antidepressents believing it helps w/pain. But even my pain specialist made a comment to me: "it helps with pain and helps with your depression". I wasn't depressed, maybe I get ticked sometimes dealing with this stuff, but not depressed yet because I have a disease drs.state "women" tend to deal with depression and need treated w/meds. NO! most of us don't. Now some do, but for living w/something like this no. The side effects can be devastating for us. Dry eyes and mouth get so much worse. Some woman mistakenly think the pain meds is what is making them sick and it is the antidepressants. For me I found oxycontinER 20mg three tmes a day seems to do the trick. You can't take it 2xday, it won't work! I was on OpanaER for a year but I just did not get the results I rec.on Oxycontin ER. My activity level dropped 50% on OpanaER. I know others on it and say the same. It takes about a month, but a month well worth the effort. For me, I use 20mg and won't go higher as I am only 48 & don't want to grow tolerance too fast. Started at 10mg worked to 20mg TID before I received some results. I've been active in a pain study for how longterm drugs work & seriously found this one to be best. The short release drugs only touch the tip and cause sooo many more issues than they help, including organ failure issues. Fetenyl(?),hated it! Methadone my pain went out of control and I had heart problems on it. This is a very dangerous Chronic pain med. It accumilates in your body over time. Can be lethal yet some doctors still use the junk. She has to remember that no matter what she takes, how she takes it and how much she takes, It doesn't ever take the pain 100% away, nothing will, but it cuts the edge off it enough so you can at least live again and somewhat concentrate on things & think. If it gets so bad and out of control, you just can't think, your mood is all over, it sucks Lesley. I have found in my experience, no matter what, keep your mind busy to help you through the worst times, even if it is a good lifetime move! lol But remember it takes teamwork, lots of it, and your pharmacist should be as important as the docs. For pain my complete regimen is neurotin TID, oxycontin TID, methotrexate&plaquenil for inflam,etc. For break thru pain that slips through the Oxycontin time I'll use percocet but to be honest, I rarely do because I hate the side effects. The new pain meds out there really manage the pain, lesser side effects, no euphorias or ups and downs with pain like we dealt with in using stuff like darvocets, percocets,etc. You can live a normal,well somewhat normal life. I don't think our lives can ever be normal but then again who's is. The other thing my pain dr. has taught me is to be prepared. Like when I shared about the airport. It takes work to set trips up,but having the right medical documents and stuff really helps things go easier. Not perfect,but much easier.

Also to all who deal with a chronic illness. One valuable piece of advice one of my doctors shared with me I'd love to pass on. "Always remember we are just wearing a white coat and yours is just a different color. We are still the same, I know more about hearts and you I am sure know more about a lot of other things. But mostly, you know about you and what you live with everyday. Don't let anyone intimidate you because they wear this coat. We are no different than our patients. We bath, we sleep, we eat and all go to bed without our shoes. If you are not happy, ask. If you still are not happy, sit me down and confront me. If I still don't answer you or help you, don't put up with it. I would expect the same service as you expect, don't expect any less of me." He then said sometimes doctors need to be reminded that many of us went to school, just studied different things, and they need a reality check. They are not God and sadly can't cure us. Many patients put so much faith in drs. they give up when they get no results. I found over time pain therapy also had to come from within myself. I had to help my mind take some control of my life and body. So I took control. Something many of us loose when we are so sick. Journaling helped me for a long time.

Let me recommend 2 books to you & your friend. It helped me so much. It also helped my husband to understand more. One: Where Is God When It Hurts,By Philip Yancey and second: When we Hurt also by PhilipYancey. Michael W.Smith also has a small book out about living with pain & getting through it with the help of prayer and God. I think it is called Healing Rain. I'd have to double check. Anyways, Yancey's books are excellent. They are not all about God and do this and do that, it is about his experiences dealing with those living with devastating pain & illness and honestly it helped me look at things so differently. It did really help in a diffent way. Yancey's books would be a great gift for her.

My prayers are with you and your friends and know this Lesley, you are being such a good friend being your friends voice. I wished I had someone like you in my life when I couldn't stand alone. Our husbands are too close to the situation and emotions become a hindrance at times.

Lots of blessings.

April 8, 2009 - 11:35pm


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