What Does Your Pain Medication Hide?

Last weekend I was a total idiot and forgot to change my pain patch for so long my RA was causing me agony. But I also felt pain in other places that I did not expect. My RA pain was definitely the worst of all.

What this little spurt of idiocy tells me that my pain meds, especially my pain patch, are working and do take care of my pain. This is a very nice thing to know. I am not living in pain (most of the time) because of them.

But then what concerns me is what are my pains caused by. Okay, I am no idiot but I do know that what I felt in my hands and feet is caused by my RA. But then I have pain in other places that I didn't expect. These now need to be explored (not here) but with my doctors to see what causes them - in other words, are they something to worry about.

Pain is your body telling you something is wrong. I just need to know what's wrong and hiding behind my pain medication. Damn.

Why Did I Feel So Bad?

I have good days and bad days. Little changes, like a poor night's sleep, can cause me problems for a few days. I realize that. Forgetting medication can really mess me up. Last winter I had a horrible cold and forgot to take my Lyrica for a few days. Then I started feeling even worse - the Lyrica hangover.... But then I figured it out and went back on it and felt better instantly.

I have been feeling bad off and on all week but mostly with in reason. Until yesterday. I woke up achy and sore. I didn't sleep well because I couldn't get comfortable. I had a throbbing headache. My hands were really sore on Friday - I couldn't knit because they hurt so much. By 9am yesterday, I decided I was spending the day in bed.

Then I found out my brother, his girlfriend and dog were coming for the weekend so I had to motivate. My brother has a standing invitation to come visit any time with or without kids, dog, girlfriend. Our guest room, a/k/a our finished basement is where people stay with a dog free overflow upstairs in a guestroom and the pull out couch in the livingroom. Before that text message, the basement was a disaster. All my knitting and weaving stuff was everywhere in piles, being sorted, finished, etc. So I had to motivate.

While motivating and cleaning, I realized that all my problems were pain. My pain is primarily controlled by a 7 day pain patch that I change weekly. I realized I had no idea when I had last changed my pain patch which probably means it was more than a week. I never remember what day to change it. I try to change it on the same day I fill our 7 day pill boxes but when I change filling our pill boxes because of some scheduling issue, that screws it up.

And I have no brain. I can't remember anything....

All I know is that I had so much pain yesterday that even after I put my patch on it took several hours to recover. The power of one little pain patch.

What did surprise me is the level of pain that I had.... I definitely need to talk to my doctors about that one.

Am I or Will I Get Better?

I get asked often, am I getting better? Have any of my doctors found a miraculous treatment for me?

The answers are and always will be a big fat 'no'.

There are different kinds of ailments out there. They are (in my non medical terminology):

• Acute - an ailment which happens and gets better. Think a cut, the flu, appendicitis, Lyme disease.
• Chronic - an ailment which occurs and lasts and lasts and lasts. Think things like arthritis, fibromyalgia, degenerating disks, etc.
• Terminal - an ailment which will kill you. "Terminal illnesses or infections are considered incurable when there are no conservative therapies available which will eliminate it from the body." Think cancer*, untreatable MRSA infections, etc. 

My medical history includes several chronic ailments that have no cures to date but are treated to minimize deformations and relieve pain. These are: rheumatoid arthritis, degenerating disk disease, and fibromyalgia. Then I get to add a couple of cancers on top of that as well as significant injuries which are not repairable (think bad knees). Every so often I get an acute ailment like the flu to add to the fun.

My treatments all focus on making me feel better. But nothing will cure all of me. So no, I will not get better. But thanks for asking.

*Cancer gets the asterisk here because sometimes cancers are treated as chronic after standard treated. You can never be sure you got all the cancer out of your body. 

The Difference With A Good Doctor

This morning I had a wonderful experience having injections in my spine around T8 and T9 where I have a couple of desiccated discs. (Apparently I did something to my back in the previous years - my money is on the time I knocked the wind out of myself in front of the upper ski lodge with a deck full of skiers.) Desiccated discs are common in older adults (70+). Once again I am proving I am less healthy than most people 20 years old than me.

Today my new pain management doctor did the procedure. He was nice and talked to me first. Then he asked me during the procedure if I could feel anything and he would add more pain meds. He asked me how I was doing. He told me if I felt pressure, he would add more pain meds. Afterwards he told me it would take a few days for I to feel any improvement. And he repeated his instructions to me about changing my other medication levels.

What a difference.

My old pain management doctor never asked how I was doing. He never offered to give me more pain meds while doing injections. He would shove in the pain meds and they would BURN! Then he would push in the steroids which would cause a lot of pressure in the area. And he never talked to me about anything else.

I am very impressed with my new pain management doctor. This really show the difference between a good doctor and a bad doctor.

• A good doctor asks how you are doing during procedures
• A good doctor talks to his patients to make sure they are doing okay.
• A good doctor is concerned if his patient is uncomfortable.

When you find a good doctor, keep them.

The Wrong Doctor

Synopsis of a very sad story: A man with horrible pain issues was cut off of pain meds by his doctor and as a result took his own life.

The details: The man's pain issues were treated by his PCP who was concerned about potential opioid abuse and cut him off of medication. His PCP was concerned about losing his own license as a result of tightening laws regarding opioid medications due to the current abuse epidemic. His pain, when untreated was so bad, caused him to commit suicide.

I think my big problem is that the man was not treated by a specialist who would have a better understanding of options for treating his pain. There is a reason there are specialists. After specializing in their training, they also spend time researching new medications and treatment protocols. Let's see, would you have your primary care doctor take out your gall bladder? Probably not. You see my point.

Personally I want a specialist for pretty much any chronic condition. Something that isn't going away ever requires a specialist.

There is a lesson to be learned here for everyone. If you do not get the treatment you need from one doctor, find a new one. I do not mean doctor shopping to see who is going to give you a prescription for something for you to abuse or distribute.

A doctor should want to work with you and help you with your problems. They should be open to discussion and share decision making. If your doctor cuts you off, find a new one. Don't suffer.

Again, it is such a sad story that this man was in such pain that he took his own life. My sympathies to his family. And to his PCP who cut him off? Thumbs down to you!

Making The Change

Okay, I am going to do it. I have been pondering changing my pain management doctor and I have decided today (I am finally going to remember to) make the call. While I personally like my old pain management doctor and think he is a decent guy, I question the care I have been receiving.

I don't necessarily think it has been bad care. But I really want a new set of eyes on my pain management treatment. I want a new doctor to look at what I have and what hurts and then I want a new set of recommendations.

After nearly seven years with the same pain management doctor, I feel he just adds more and more meds and doesn't necessarily take anything away. One time he did take me off Lyrica (and later put me back on it), he told me I could just stop taking it and switch to something else (that I can no longer remember). That was probably the worst two weeks of my life. I was later told that I should have been told to cut down on Lyrica over a three week period and then start the new medication. He was later surprised that I had any issues with the transition and basically brushed it off.

He has also been a bit skeptical of any of my requests for new scans more than five years after the original one.

Today I will say good bye to him and schedule a new appointment with a new pain management doctor. To help with this transition, the pain management department has added a new doctor which gives me more options.

I am not a big fan of doctor flipping but realize sometimes it is in my best interests to do so.

Thoughts on Coping

I was talking with a friend today. She is having a nudgy little problem that is driving her crazy. She doesn't like nudgy little problems that drive her crazy. She asked me how I do it and cope with everything.

My reply after that, with some deep thought, is:

• Exercise
• Whining
• Prescriptions
• Bitching
• Ice packs
• Complaining
• Chocolate (preferably dark with cashews or pecans)
• Over eating
• Heating pads
• Under eating
• Substance abuse (just kidding)

I admit I haven't had the best week but I'm still here. Monday I was exhausted and in pain. Tuesday I was in pain. Wednesday I was okay but sore after PT. Thursday, its still morning but I feel okay, so far. 

Pain is no fun and its been way too popular this week. One of my many doctor appointments on Monday changed around some of my pain meds. But its still too early to see if that is helping me. So I will refer to my list of options above on how I will cope. But in the meantime, I might need an ice pack and/or a pain pill. 

The Props In My Life

How do I handle my life with its medical disasters? I have all sorts of little props to help me out.

• I have a high chair in my kitchen. I can sit when I cook so I don't get as tired. Its new. My husband bought it for me when we moved.
• I have a folding shopping cart for when I go to farmer's markets or any place where I need to carry anything. That way I can actually go places and do some shopping by myself.

• I have cushions all over the house so I can get comfy when I sit down and can put my feet up.
• I have a power bed so I can raise the head and feet and get comfy when I lie down.
• We moved to a raised ranch so I don't have to deal with stairs. It makes my life so much easier. The bedroom isn't upstairs, its just down the hall.
• I have Butrans pain patches that allow me to function as a human being and not be in pain. These are the only things that allow me to get through my daily life without collapsing or being in so horrible pain. 

Actually the single most important thing that helps me cope are my marvelous, wonderful Butrans pain patches. If you are in chronic pain, try them. Without them I would not be able to function.

The Non-Opioid Abusers

Those of us who live with chronic pain take pain medication, including opioids. There has been quite a bit in the news about the growing opioid epidemic which is killing thousands of Americans. Most of those who die are abusers who overdose. The resulting laws trying to restrict access to opioids causes difficulties for those of us who actually live in chronic pain and need the opioids to function.

Could you imagine needing to go back to your doctor's office to pick up a paper prescription to bring to your pharmacy to refill it? That is what happens now. Yes really. Can you imagine being in total pain and having to drive or ride a bus just to get that little piece of paper?

The new laws designed to restrict access by drug users have the unintentional effect of making it harder on the people who need them to function. For someone in chronic pain, who has to limit their efforts and make deliberate choices on how to spend their time and efforts, any extra trips are avoided at all costs.

So what do we do? We cope. We look for alternate therapies that make life easier for us. I am on opioids but mine come in patch that I apply weekly that gives me a controlled dose of pain medication that is essential for my daily activities. I hope more manufacturers step up and come up with more alternative delivery methods which allow pain relief for those in need but does not allow easy access by abusers.

Is that pain only in your brain?

I have been pondering this question for a couple of days. Some one posted a comment on my blog the other day and asked about this:

"How do you know when some of these pains are not in your head? I have mistook mental discomfort for physical problems."

I have often pondered this question for myself. Is what I feel real pain or is my brain making it up? How can I tell all my pains are real? Am I over treating my ailments? How can I have so much pain? I sometimes run little experiments with myself (don't tell my doctors!) to see how my medications are working and how my pain levels really are. Sometimes I just forget a medication and I often quickly find out what is real and how much somethings hurt. Other times I will delay taking my next pills and see how I am feeling.

I thought about this, hard. I know if someone has a limb amputated they often may have 'phantom' pains. The missing leg still produces feeling of pain even after it is gone. I know there are treatments for this as well.

But I also feel strongly that doctors should never ignore patient's statements on having pains. For years, male doctors often dismissed women's complaints on menstrual cramps. They were proven wrong. But if a patient complains of pains often and a doctor does nothing, you need a new doctor. 

However if its the other way around and the confusion is as the commenter noted above - mental discomfort being mistaken for physical pains - that is a different problem all together. In quickly asking the all-knowing Dr. Google, you can find that it is a recognized emotional issue that causes significant anguish.

In my non-medical opinion, if there is a question as to whether the pain is real or in your head, you would really need to do some personal and medical research, working with a good medical professional who meets your needs. Because even if the pain isn't real, there is still an issue that needs to be treated.

Physical therapy

This morning I finally will start physical therapy for my knee, nearly four weeks after falling. I have opted to have my PT at the gym instead of through the hospital. There are several reasons for this.

First of all, after my initial appointment, I can do my PT on my own instead of having to juggle three more appointments each week. I just don't have the patience for that. When I have PT, I do my exercises every day. Most physical therapists have told me many patients only do their exercises at their sessions.

Second of all, its free. I won't get three sessions each week for free but I will get a session every week or two, and free advice when I want. Yes I have health insurance but I can save the copays, and save my insurance company their share. This makes it a win-win (I hate that term) situation as far as I am concerned.

Last of all, I have had PT for my knees several times so I am aware of what to expect. I know my biggest problem won't be which exercises to do but which ones I am able to do. Between my back issues and hip bursitis, I physically can't do many of the exercises.

So much fun, more than I deserve.

Blocking out life

Sometimes I feel I need to ignore life and the rest of the world and focus on my ever growing list of ailments. Its not that I want to, its that sometimes my body insists on being the focus. Like the past few days. And probably the next few days.

I have many other things I would like to do but I have to focus on my health. I will fit in other 'stuff' around my health crap. And it really is crap right now.

I have a feeling I did some damage to my knee, how much I will learn more on Wednesday. It hasn't been contributing basic things like flexibility and stability to the rest of my body for the past few days. This means I can't go to the gym. Actually I don't dare go to the gym. But I really want to go. I think exercise will help me deal with stress. And I have blood work this week as well as two other doctor appointments. Right now I am getting blood work done every two weeks.

I also broke down and succumbed to pressure from my new therapist to try the new fibromyalgia support group. I did point out that I do have multiple ailments and fibromyalgia is one of the less challenging ones to me at this point. I mean its there. It causes me pain, fatigue, and, my favorite, insomnia. It isn't progressively causing damage to my body or lurking in the background, threatening to recur like some of the others.

I was told that the fibromyalgia group should help provide 'coping' strategies. I agreed to go once to see if these 'coping' strategies are really covered and potentially show any benefit for me. But my cynical self doubts that.

I am just stressed, anxious, in pain, tired, and a few other things so life isn't as much fun right now. Call me a cranky cynic right now.

Palliative care

Palliative care is not hospice care. It can be part of hospice care but in itself is separate. Now there is some research that palliative care should start at the point of an advanced stage cancer diagnosis and not later. The study focused on both the patient and the caregivers. Both of who handled everything better with it. Palliative care is pain and symptom relief - isn't that really important?

Personally I think palliative care should be part of any major medical diagnosis. I have been through too many medical issues not to appreciate the importance of it. I sometimes my consider my pain management doctor one of the most important people in my medical team. See Hollye's diagnosis story here where she talks about this more.

"Palliative care, a team-based approach in which a group of professionals – including doctors, nurses, social workers, psychiatrists, dieticians, and chaplains – focus on relieving the pain, anxiety, and stress that cancer can cause, can help control pain and improve quality of life in many situations."

At my breast cancer diagnosis, a social worker was involved in the initial team and was part of my care all during active treatment and somewhat afterwards. As I grew stronger, I was able to find support elsewhere that was more convenient and didn't require  yet another drive to the (damn) hospital.

"...your plan might include ways to manage pain, fatigue, loss of appetite, nausea, and insomnia. Your team also can provide help and resources for dealing with emotional, practical, and spiritual concerns."

Pain management is essential in well being. If you are in any kind of pain, whether post surgical or other causes, keeping it under control offers the patient an important respite - the ability to rest, eat, and move more easily.

While I might not need more palliative care right now, I will be sure to find it when I do.

Pain management

Last week I went to the pain management doctor - yes I have one of those. I had a plan, a very well thought out plan, for that visit. I knew what I wanted and it worked out. I had a series of trigger point injections which are wonderful for fibromyalgia points. And I am scheduled for a Radio Frequency (RF) treatment on my lumbar spine which won't happen until the beginning of April (darn).

I lost the battle with my insurance company for RF of my right sacroiliac(SI) joint so I am moving on to the next options.The doctor thinks the lumbar RF might also help with my SI pain so we are proceeding with that option next.

This is the doctor who also gives me Tramadol for breakthrough pain. And Butrans pain patches for continual pain relief. (I know this post will get hit by spammers between the title and mentioning those names.) So in addition to signing a release for the trigger point injections, I also had to sign a statement, and check numerous boxes showing that I agreed with each one, on how I agreed not to abuse pain medicine and that I wasn't doctor shopping, hiding, sharing, or stocking up on prescriptions, and several other topics. Apparently this is part of a new law focusing on reducing abuse of pain medicine.

Studies have shown that abuse of pain killers leads to heroin use - which is a much more serious problem. To put it in perspective:

"...accidental prescription drug overdose is now the leading cause of acute preventable death for Americans. Someone dies in this manner every 19 minutes. That is more deaths than from car accidents." 

I had no idea this problem was so prevalent. We have a new governor who successfully ran on a stop pain killer abuse platform.

I am careful with my medications. I don't share them with anyone. I keep them all hidden away in a closet out of sight so that if anyone is in our home, they can't easily see them. I also prefer being on a pain patch than taking regular pain pills. It is a controlled dose that keeps my pain in control. But I also have pills for breakthrough pain - when I have a very bad day.

I do not want to unknowingly contribute to this problem. I have enough pain issues without being part of the problem. I want to focus on managing my pain.

Pain control vs opiate management

I am a huge fan of opiates and other pain relief medications. I never used to be. I am also concerned about addiction issues. And if someone got hold of my personal (legal) stash, I would be seriously concerned. My pain meds include several with 'street value'. I would not want to be someone who unknowingly contributed to the local substance abuse problem.

There is a new invention out there for those of us with chronic pain. These are transdermal pain patches which contain varying doses of an opiate - Butrans patches. They have worked very well for me. I started a few years ago about when they first came out at 5mcg/hour and then eventually went up to 10 mcg/hour. You change the patch every seven days and in the meantime, lots of pain relief.

I know people who it has worked for, but also I know some who couldn't tolerate side effects. Like all medications, it is not for all. The best part for me is my feeble brain doesn't need to remember to take a pill to stay ahead of the majority of my pain.

But I digress. There is a real problem with opiate addiction in the US. As a result, the government has cracked down on their availability and has created databases to confirm patients aren't doctor shopping to get multiple prescriptions. This is why I can only get a month's supply of patches with each prescription. Each monthly prescription costs $105. If I could get the 3 month supply, as in the past, the price would be $105 for three months, not one.

This is an example of the problem has been created by more restrictions to the accessibility of these drugs to prevent abuse by the few. Which creates hurdles for those in pain to get the relief they need.

I'll call this progress but the advocacy groups, the regulators, doctors, and the pharmaceutical manufacturers need to continue to work together to help curb the abusers while allowing those in need to get the treatment they require.

My poor feet

My feet hurt these days courtesy of RA. I used to wear a size 7.5 wide. That is not the case any more. I have a bunion on my right foot which means I need to wear an 8 wide. I have to put orthotics in my shoes so I even wear at 8.5 wide.... Banana feet!

RA often affects the small bones of your hands and feet first. And yes it did get me there. My feet hurt often. I do exercises, wear inserts in my shoes. But I still hobble when I first get out of bed every day. The cat can beat me downstairs when I am having a bad day.

I think we are at the time, where I will need to talk to my rheumatologist about treatment options. I am on the ultra cheap, around for decades methotrexate. I can't take a lot of the new ones like Enbrel and Humira because they are not recommended for people who have had breast cancer (cancer the gift that keeps on giving). Those are the ones with the fancy commercials showing professional golfers saying they have RA but their Humira keeps it under control. No, I could get the newer, fancier, and more expensive Xeljanz.

So do I let my feet hurt or start paying a lot more? The real problem is the pain in my feet reflects joint damage there which needs to be stopped before it gets worse.