managing pain

Managing pain can be an overwhelming feat. Family and friends don't understand how bad the pain can get. The numbness, burning and fatigue all make for a difficult way to live.

So, how do we manage pain and other symptoms of autoimmune diseases and fibromyalgia and still have a life?

That is the question, isn't it? After all, we don't want to be laid up or freaking out (as I tend to do when the bad gets to the intolerable point). There is a certain amount of stress that comes with chronic pain. And we all probably have bouts with depression when we're constantly in pain and can't do what we want to (or think we have to). In fact, sometimes we have to do things even when we're suffering terribly. Those of us with children, for example. Or, as I have, my mother living with us.

I wish I had the answers. I had to leave a career I loved because the pain was so intense every single day that try as I might, it showed on my face as well as in my body language. I thought the diversion of going back to work would be a good distraction, since I love teaching so much.

I guess what we need to do is have (flexible) plans in place when severe pain strikes. Like taking a hot bath then resting with heating pads and a cup of tea. Or, as the pain is coming on, mindfulness meditation helps quite a bit. It is a type of meditation that deals with pain, stress and other related problems and is worth checking into. I found a great collection of meditations on Itunes.

Besides rapid onset pain which comes on too quick to try meditation first, forms of relaxation help ease the pain by reducing the stress and relaxing the muscles that get so tight.

I'm not against pain medication. I believe we're given it for a reason and when the pain gets to the point where I'm unable to do anything such as move comfortably, I do take something for pain then try the relaxation techniques. The two together generally lower the pain to a functioning level.

Of course, we shouldn't be lifting things or doing hard labor. We should be exercising as prescribed and eating well, excluding the foods that make pain worse. So exchange diet soda for tea or water, because sugar substitutes add to pain. Caffeine is another no no if we are trying to lower everyday pain. There are also certain vegetables and the like. Just look up diets for Fibromyalgia and you'll get plenty of info.

We should also rest. Getting a good night's sleep is imperative. If you're one with sleeping problems, like I am, a nap during the day helps.

Seeking alternative means of pain relief is an option, though they can be costly even with insurance. I'm trying acupuncture and I have my second treatment tomorrow. I'm willing to try whatever I can to even reduce the pain. It also is said to relieve stress, and boy do we have stress if we're in pain all the time!

I have a high level of pain daily. I don't have great answers about minimizing the pain. I'm just sharing what I'm trying and how it effects me and those around me.

I hope I offered some solutions, or at the very least, some things to consider.

peace and love,

sunee

pain and fatigued days

Some days are better than others when it comes to chronic pain. Today has been a very bad day. I'm sitting with heating pads trying to relax and ease the pain. No matter what I've tried, be it medications (and I take plenty) and now I'm having acupuncture. I exercise. I don't eat certain foods. Yet nothing seems to stop the bad flare ups and everyday pain. All of it at times unbearable.

On days like today I need to let go of my list of imaginary must do items and take care of myself. I need to change my old way of thinking that I must do, do, do and go, go, go.

The new way I'm trying to think is to rest when I'm tired, limit what I do, including go up and down my stairs too many times, and listen to my body. And I did rest today. I had to.

Since I don't want to just sit and moan about my pain to my family I need to find outlets to express how I feel. That fatigue is making me feel like cement, that I hurt in so many places I lost count and that the level of pain is increasing as the day wears on. We don't want to become a strain on our families, or have it be an oh well she's in pain again thing. It's hard to balance pain and family.

I also need to refocus my mind on ways to relax and to cope. I practice mindfulness meditation, but not every day like I should. I read. I blog. I take long, hot baths and picture my pain slipping away. I picture sandy white tropical beaches. I play word games (as I've mentioned before, I'm sure!).

I guess for all of us with fibro or chronic pain conditions, this is life. It's up to us to take care of ourselves and deal with the bad days.

I hope you're having a pain-free, good day.

peace and love,

sunee

no time for self-pity

Some days I feel a little sorry for myself. I'm sure my psychiatrist would say that's normal due to the depression that goes with fibromyalgia and my other disease. But we all know what isn't normal is living in that poor me state of mind.

Today my upper and lower back have burning, deep pain, my left arm is tingling and throbbing, my wrist hurts more than I can express, my knees are sore making it hard to take the stairs and the list goes on...

I just wasted so much of our time going over that. Not that we shouldn't release the pent up feelings associated with chronic pain, but enough is enough.

We need to live and enjoy and relax and just breathe. All this listing and worrying leads to more pain, and then- Guess what? More self-pity.

I started to feel a little pity creeping in because I feel so bad today, but just expressing it made me feel so much better.

My advice is to find someone who doesn't live your pain constantly to vent to, or grab your journal, or blog like I do.

We need to keep our spirits up and our minds free and clear of pity. We deserve to enjoy our lives just like everyone else.

peace and love,

sunee

acupuncture

I've been looking for ways to relieve pain other than taking pain pill after pain pill. I'm assuming there are many in the same boat.

I avoid foods that are said to cause pain, from caffeine, nightshade vegetables, sugars (well, I'm not that good at that), sugar substitutes and sandwich meats because they have nitrates. I practice yoga, rest often, try to avoid stress (try being the operative word). And the list goes on...

So, when all else fails we venture out into things that might feel awkward or even scare us. I was terrified of acupuncture for years. I heard many people rave about the results. I heard professionals speak of its benefits. I read about it.

So, now I'm trying it. I began a once a week treatment plan. The goal is to lower my pain level enough to reduce the number of medications I take.

The needles don't really hurt going in. I felt a tingle or a pinch. While I laid there with many needles in me I had a few muscles spasms and tingly feelings all over. I was actually very relaxed while I had the needles in me. I almost fell asleep.

I'm in it for the long haul. I felt funky after the treatment today. Tired and woozy. I was told the pain might move to another spot and it did. I had a pretty high pain level for hours after. But after some rest I feel okay.

I'm excited about finding a way to live with less pain. I'll keep you posted on my progress.

peace and love,

sunee

fibromyalgia and identity

So I have fibromyalgia and Sjogren's Syndrome. What now? I can longer work because of the pain, so I'm no longer a teacher. My children are almost grown, so I'm not needed quite as much.

Who I am I now? A sick woman in pain?

It's time to reinvent myself. Not completely. I have many qualities I want to hang on to and even develop more.

For many people staying home is pleasant and relaxing. For the most part, it is for me. Pain decreased as soon as my days allowed for rest and relaxation. But my mind needs a little bit more.

I write. I have since as far back as I can remember. I have poems I wrote at 10 years old. I've written for college papers and I write short stories and plays. In fact, I thought of a career as a playwright before I landed my first teaching job. I'm even attempting a novel.

We need something- writing, crafting, sewing- whatever our bodies allow, to keep our minds active. Reading is helpful for that, too. Maybe someday you'll be reading my work :)

My point is that we still have an identity aside from our illnesses. We don't necessarily need to actually reinvent ourselves, but we need to have a clear sense of who we are aside from pain.

If you're able to work, you understand the satisfaction of getting a job done, especially if you love your career as much as I loved teaching. Those of us who can no longer work deserve that satisfaction, too.

So, whether it's reinventing ourselves or renewing and old hobby, the time is now. We don't want to identify ourselves by illness only. We deserve more than that.

Enjoy yourself :)

peace and love,

sunee

Don't overdo it

If you're like me you might make a mental list (or a real one) of all of things you want to accomplish each day. It's a very organized way to live, but not necessarily the right one for those of us with Fibromyalgia and other chronic pain disorders.

We can only do what we can do. Maybe the laundry won't get done or the dusting won't get done. I'm always going on about prioritizing, but let's be honest- sometimes we just can't do any of it. Trying to do it all when we're not even up to the simple tasks will only lead to more pain. In fact, it may lay us up longer and than nothing gets done for quite some time.

It's ok to take the day off when you need it. It's ok for me to take the day off when I need it. It's not ok to suffer through chores like a martyr. No one wants to be around that, and, truly, do we want to be that person? Thinking of how I sound when I'm in martyr mode brings a feeling of embarrassment to me and reminds me not to be one.

I guess I'm writing this as much for me as I am for anyone who reads it. No matter what our conditions or life situations, sometimes we need to slow down and just be.

Overdoing it might be in our nature, but we don't have to follow through on it. It leads to crankiness, horrible pain and exhaustion. (And much more than I'm listing.)

I believe no one likes a cranky martyr. People around us appreciate when we have to take care of ourselves and are happy to see us feeling better. No family member wants to hear complaining about how much we did and the painful results.

It's our responsibility to take care of ourselves. Take time off. Rest when you need to. Delegate a few chores. I plan to as well.

peace and love,

sunee

Fibromyalgia complicates things

It isn't news to anyone with Fibromyalgia that it complicates every aspect of our lives.

Fibromyalgia limits us and what we want to do. It puts a strain on marriages and families. It is a financial drain, with prescriptions, co-pays, and for those of us looking for outside relief, acupuncture, massage and any other treatments.

Unfortunately, these are things that can add to depression that many of us struggle with already.

How can we deal with such things on top of often severe pain, and, if you're like me, the complications and additional pain of an autoimmune disease?

One thing that has always worked for me is the triage system. Much like at the hospital where they take the worst cases first, I try to figure out what is essential for me to deal with. I prioritize based on how I'm feeling how truly important each thing is. I make lists.

Maybe it's a very bad day, with excessive pain and fatigue. I don't handle emotional things on these days because I'm prone to anxiety and I increase my pain by getting upset. Kindly ask the family member if you can deal with the issue at a later date, if possible. If not, just try to keep breathing and don't let pain dictate what you say. This is a huge struggle for me.

On bad days I do what I can. That might mean the laundry doesn't get done. Or maybe I cannot do anything but rest that day. I need to communicate with my family and set boundaries. When I do that, there are fewer expectations and a better flow with everyone. Without communicating our needs, no one knows and might expect of us things we cannot do at that time.

As far as the financial strain, I try to budget in every way possible to keep costs down. I'm even considering mail order prescriptions to say some money. Disability is often hard to get, but we need to investigate every avenue and fight for what we deserve. Severe pain is disabling. If you're able to work, all the better. But health comes first.

I rest enough so that I can have quality time with my husband when possible and also with the rest of my family. We don't want to become that person who always complains and makes everyone uncomfortable if we want to keep our families strong and together. That doesn't mean keeping quiet about our pain and ailments, it means being more than that. Talking to them about them. Being a loved one, not a needy one can be difficult. But I think it's essential to having good family life. This is another struggle of mine I work on daily.

It isn't easy. I'm not working and it's hard to juggle all of life's difficulties without getting stressed out, but we can't afford to feel sorry for ourselves and create negative energy that leads to more pain.

We all have to find a way to balance our lives and make things a little easier on ourselves. We need to give ourselves a break.

I have no real answers. I'm like the millions of sufferers looking for ways to improve my life.

I hope this gives you some helpful ideas and finds you pain free.

peace and love,

sunee