Daily Life with Chronic Pain

Social Security letter

2011-08-25T12:12:00.002-05:00

Last week I finally received a letter from Social Security telling me what the decision was in my SSDI hearing. They denied me again. This is the third time. That was a really rough day. I was feeling pretty depressed and hopeless about this whole process, but as I rolled over in bed and read the latest tattoo that I'd gotten, I told myself that I'm not giving up and this is not going to get the best of me.

About 2 1/2 weeks ago I got the word "persevere" tattooed on my right arm where I could easily read it. It was a word that I've been wanting to get tattooed for a while now and it's already helped me during a time when I was emotionally distraught.

I've called my attorney to tell him to go ahead with the appeal process. I'm gonna get disability. I'm not gonna let this long legal process get the best of me. God knows I'm familiar with all the bull you have to go through with the legal system after the car accident lawsuit I had gone through.

I hope you're all feeling well today and that you won't let the pain or others get the best of you either. You're not alone. Take care :)

Still No News...

2011-08-12T17:22:00.003-05:00

Still no news from Social Security. It's really getting irritating so I'm going to call my attorney's office on Monday to see if they've heard anything regarding my case.

Yesterday I had had plans to hang out with a friend and get outside. When I was putting my make-up on a really sharp pain started to throb in my side, nearly bringing me to the floor. I started to shake, sweat, and I thought I was gonna throw up. I was fine one minute, and the next a pain flare-up hit out of nowhere. This is what makes Fibromyalgia so unpredictable and make working a real job with a schedule, nearly impossible.

Today, I woke up with some back pain and feeling rather tired. About an hour after being up I began to get more achy and felt like rain was coming. I thought I'd do a little experiment and text a Fibro friend of mine and ask her if she felt like it was gonna rain. She felt the same way I did: achy and tired. So I went to weather.com and checked what was in store and sure enough, rain, rain, and more rain. We're little human barometers, we are. Fun party trick, eh? Not really.

On days like today, when the humidity gets worse and rain is coming, it's really important for people with Fibromyalgia to pace themselves. Don't overwork yourself with household chores and such, it could cause you to flare-up rather quickly. Be aware of how your body's feeling temperature wise and dress accordingly. Our bodies have a hard enough time maintaining a stable temperature and when the weather changes it can make our systems go haywire.

Take care of yourselves and know you're not alone :)

P.S.

2011-07-20T16:53:00.003-05:00

Social Security....right...last topic. I'm still waiting. I had my hearing on Jan. 24th of this year and was sent to see a mental health doc on June 24th, to make sure the pain's not in my head I suppose (like many experts and non-experts like to assume). Still no word on getting disability...I hope I hear soon.

Gone Away

2011-07-20T16:39:00.002-05:00

I was asked why I hadn't kept up with my pain blog and I don't really have an answer. The best I could come up with was that my life's been turned upside down over the past I don't know how many months...and a year or so apparently, and I lost it. But I'm back and I've never lost the need to help my fellow Fibromyalgics out. And sadly, I'm learning that there are more and more of us out there every day. It's kindof scary. Chronic pain seems to be sprouting up everywhere lately and those who are newly diagnosed should never have to navigate through this overwhelming experience alone. That's why I started this blog and that's why I will continue it. It's also why I'm very serious about writing a book about all of this. Most texts out there are medical and we all need more of a personal look at what the day to day really looks like and how it impacts us, the people we love, and those who care about us. You guys are not alone. All questions are welcome and I will do my best to help you out to the best of my ability.

I hope you have a relatively pain-free day with people who make you happy :) ((gentle hugs))

SSDI Attorney

2010-03-02T13:34:00.002-06:00

Hey everyone! I know it's been forever since I've posted and I do have a few updates.

I met with a Social Security Disability attorney and he took my case. I wouldn't get much each month, but it's something. The only thing is that the waiting list for a trial is 18-24 months. So basically, I met with him and when the meeting was over he said, "Talk to you in 18 months!". In the meantime, I'm keeping a daily pain journal for him for more concrete evidence of my day to day experience. That way, when the trial actually happens I have a written log of events and don't have to try to remember...it doesn't look good.

My husband and I also joined a gym, Bally's! I was so excited and since we've been going I've loved it so much more than I thought I would. I was a bit nervous about what my pain doctor would think, but when I had my last appointment with him and told him about the gym, he was really excited about it. He said that exercise is like medicine for people who have Fibromyalgia. The only carido machine that doesn't hurt me is the recumbent bicycle. The elliptical machines are nice too, but it actually makes my neck tighten up more. I've also been doing some of the weight machines for my legs...and just a couple for my arms. I really limit my upper body stuff b/c my neck muscles are so bad. But it's been so great and it's nice to have the extra activity to do with my husband.

I'm also happy to report that I took the advice of my dear friend, Sarah, and have begun writing her "aunt", who also has Fibro. We've been chatting for a week or so now and it's been so great to have some steady contact with someone who understands what I'm going through. We already feel really close and it's been a wonderful gift. Kathy is a very kind and strong woman and I hope our friendship continues to grow.

2009-12-18T13:53:00.001-06:00

Jace Wayland - Shadowhunter by Silentrageleon on Polyvore.com

I love The Mortal Instruments series of books: City of Bones, City of Ashes, City of Glass, and eventually, City of Fallen Angels.

Denied

2009-11-02T12:57:00.002-06:00

I was denied the first time I filed for Social Security. I called a contact at the office and she advised that the next best thing for me to do is to file a "Reconsideration" instead of an appeal. Apparently there's a difference. I don't understand all of it, but I'm still waiting to hear about being accepted or denied this time. I'll keep fighting for it even if I have to go to court.

I haven't updated in a long time because I had really gotten into my craft work and was working on getting a decent amount of merchandise together for my first craft fair, which was on October 10, 2009. It went alright. I sold 8 items. The women around me who were regular craft fair sellers told me not to feel discouraged because this fair was one where most people looked and didn't buy. I was told every fair is different and that I should keep on trying. I plan on doing more. I'm trying to figure out how to make my stuff stand out more from other jewelry makers.

Since I've last posted I've had some medication changes. I've stopped taking Fluoxetine and am now taking Cymbalta. I think it's been helping a little bit. I'm still on 4 Hydrocodone a day to help with controlling my pain. I've also been prescribed Clonazepam by 2 of my docs for 2 different reasons. So it's nice to work on 2 things with one med. My family doc prescribed it as needed for anxiety (I'll explain that one in a second) and my pain doc prescribed it as needed for my Restless Leg Syndrome that I get in my arms.

The anxiety happens to me a lot especially in traffic situations where I'm a passenger in the car. But, every few months my pain gets so intense I start to feel like I could be dying. It's not a "I've been shot and I know I'm dying" anxiety, it's more of an afterthought in the back of my head while being in so much pain that I wonder if I'll wake up in the morning. Those are really bad nights for me. The pain and anxiety gets so bad it gets harder to breathe and it's all very intense. It's the worst feeling in the world. Sometimes when it happens I'll get scared even more because I don't want to die....other times I feel a bit content knowing that at least if I'm going to go that I'm lying next to the one I love. To be in a state of mind where you feel like you could be dying in horrible....it's a terrible thing to consider death and life like that once every few months. I can't even describe it to you well.

Now that winter's coming, My body is more achy than ever. I've been wearing long underwear or leggings for months already. It's cold out here in Wisconsin! My poor cousin who's used to California weather is now going to school in Chicago....he thinks it's cold now.....just wait....hah. Poor guy. I'm excited that he's close now though, it'll give us more chances to hang out and get to know each other better.

I hope my site helps others. I've learned of 2 other girls back home, who're my age, who have been diagnosed with Fibromyalgia or similar ailments and I hope that I've been able to help them out some. It feels like there are so few of us to get this disease at a younger age. Mine was triggered in a car accident 2 months before my 20th birthday.

As for my crafts, I want to get to the point where I can sell off of my blog http://leelabean.blogspot.com , but I need to figure all that stuff out. Hopefully a friend of mine who works in web design can help me out with that.

All of you who have Fibro or a similar ailment, I hope you have or soon find a hobby or something that you can be passionate about to keep your going on your difficult days. Fibromyalgia can be a very lonely experience and we need to have our "go to" activities to keep us going through some days. Take care everyone!

Social Security Disability

2009-05-06T22:06:00.001-05:00

I just finished filling out a packet for my claim for Social Security Disability. It’s like the lawsuit I went through….having to detail how much life has changed and become so much more difficult. I hear that they deny nearly everyone the first time. It’s so sad and irritating how people fake their injuries and make it more difficult for those who really are suffering. It’s very hard to think about and not begin to cry. Maybe I need to consider some serious writing to a representative or even Mr. Obama. Something has to be done who help those suffering from chronic pain every day in their lives. It’s a challenging existence. I just thank God that I have such a supportive and loving family.

On a positive note, I am very happy to report that Nate and I picked up our dachshund puppy, Cooper. He’s a joy (and a little irritating at night with all the crying, but he’s just a baby….hah). We’re crazy about him and he’s been good for me.

Is he not the cutest thing you’ve ever seen?! Such a doll!

It Comes Out of Nowhere...

2009-04-11T23:49:00.002-05:00

The majority of today was a great day and I got a lot done with my husband. We cleaned up our old apartment and nearly finished moving all of our junk to the new house. My job was to wipe down dusty stuff and vacuum...Nate did all the more difficult work. I knew the physical work would catch up to me sometime tonight. It hit me when I was munching on some cereal. It sneaks up on me sometimes...actually, a lot of the time. One moment, I'm generally ok, and the next, my body is tingly and numb, I get dizzy, and I feel like I'm going to be throwing up. I guess I'd describe it as being sober one second, and the next, being sickly drunk....poisoned. Not good. It feels horrible and there's nothing you can do. Usually, I can feel my pain flare-ups coming on and am able to lay down and slow them down. But sometimes, it just hits....like an unexpected dip in a rollercoaster. All the worst symptoms of having the stomach flu and then some. Your entire body is screaming at you and the slightest movement feels like a violent push/shove. Horrible.

This type of flare-up and pain is just one of the many combinations of symptoms I can get. Another type I can think of to describe is the slow throbbing type. It's like feeling a slow bass beat throughout your body while you have flu-like aches. *bum* *bum* *bum* Other pains throughout the body are like pin-pricks that migrate from ankle, to shoulderblade, to knuckle, to rib.....all over. Some are stabbing that can double you over. They hit like a flash of lightning and as you find yourself bent over from the pain you wonder what just happened. Still other pain can be a constant dull companion that keeps whispering in your ear that it's there. There's a pain that I get pretty regularly around my rib cage and when it happen it feels like there are small thorns on my ribs and as I breathe, the muscles surrounding my rib cage get caught and drag against them as my ribcage expands. Another pain is like a charlie-horse, but you can get it anywhere....even your neck. Sometimes it feels literally like your muscle will tear....even though it hasn't. The "fibro fog" that is a symptom of fibromyalgia, makes my head feel clouded, dizzy, light, distant. I forget things, space out, bump into things.

And now, as my insomnia and restless leg syndrome meds kick in I know that it's time to get to bed. I know that when my meds kick in, that all discussions of anything that need to be remembered (such as a to-do item for the next day) should not be had....because, chances are, I won't remember it.

Busy Bee

2009-04-09T23:36:00.002-05:00

It's been a long time since my last post and a lot has happened. My husband, Nate, and I have bought our first house! It's small, but it's ours and we're very excited. I pushed my luck the day of the move and the next couple days and overworked myself. I was just too excited and couldn't stand to sit there and look around and all that needed to be done. So, needless to say, I've been paying for it. I've been in a lot of pain the past several days. I spent most of Monday in bed. I've also managed to catch a cold. As long as it's gone before we pick up our puppy I'll be good. Yes, I said PUPPY. Nate and I are picking up a dachshund puppy we've named Cooper, on May 2nd. He was born on March 7. I am so excited about this little guy I could never verbally express it. (Nate still thinks that the main reason I wanted this house was because there is a doggie door in the back. hahaha)

I've also been working at setting up a group on Facebook for my artwork and crafts, as well as a blog for them. I wish I knew more about the internet and web design. Thank God for free web templates and layouts!

It's been a long time since I've seen any of my doctors due to the move and stress and pain. I see my pain management doc on Monday, though, which is good and overdue. I took a nap for what ended up to be 2 1/2 hours today. I know docs say that folks with insomnia should avoid taking naps, and yet I take one nearly every day. I can't help it. I love my naps. They save me. I take the largest dose of Ambien CR as well as Requip at night which should knock me out, but it's still always "if-ee" if I'll actually sleep ok or not. Hoping for an "ok" night sleep is pushing it. When you've tried as many pain meds as I have, they tend not to affect you as much as they do the "every day" person. I'm even taking 3 Vicodin a day for pain control. This is like taking Tylenol or Aleve for other folks. When I say that I'm in pain, I'm not exaggerating.

All in all, life is good. Days can be long and difficult, but I have my art, crafts, family, friends, and critters to get me through it. Fibromyalgia has also given me a different perspective on life. It definately makes you set your priorities. I've learned that if I have to seem a bit rude or standoffish to better care for myself, than I need to do that and not feel so horrible about it. I try not to be rude though. Just because I'm in pain all the time doesn't give me the right to be mean to people. The one thing that I still desperately need to work on is fitness. I've been given a home exercise program and I haven't been doing it. It's hard to push myself to do even 15 minutes on the bike when I'm hurting and so dang tired. But I need to convince myself that the effort will be worth it...and I'm going to be hurting no matter what....so I might as well take better care of myself physically. When we get Cooper, I'm definately going to be taking several walks a week which will be great. Maybe I should try to get back into Wii Fit. I did really enjoy that while I did it. It just got a bit old after a while. "Stop making excuses, Linz, and move your butt!"

Goodnight everyone! I hope you're already having sweet dreams or are on your way there.

Home Exercise Program

2009-02-16T17:22:00.003-06:00

Today I finally got a customized home exercise program from one of the physical therapists that I've worked with in the past couple months. I was getting frustrated with physical therapy. I've been doing it off and on for over 6 years and nothing has been very benificial. The last couple months I was supposed to go three times a week. At appointments, they'd do some massage, TENS, and apply heating pads. I can do most of that at home, except for the TENS. I wanted to know what I need to be doing activity wise to maintain better physical health. For regular people, 30 minutes of aerobic activity is suggested each day. For someone who has Fibromyalgia, I was told to do 15-20 minutes of low-impact aerobic activity every other day. I was told to never exercise on consecutive days, to only exercise every other day. The physical therapist told me that stationary bikes can be better for fibromyalgics than treadmilss b/c the bikes take some pressure off the spine. We have a recumbent bike, which has an actual seat like a chair, which is even more supportive. Then, he looked at where I most commonly have pain, in my neck and back, and showed me stretches that would be most beneficial for me. He also suggested getting a swedish exercise ball. I do have one, but it's not big enough. The physical therapist suggested one that is 65 cm around. You want to be able to sit on it and have your legs comfortably at a 90 degree angle. He said that most of their patients who have a home exercise program have swedish exercise balls. They're good for stretching out and for sitting on. The PT suggested that I use the swedish ball mostly for relaxation while watching tv. I can use it to stretch my back out, take pressure off my spine, roll around on (slowly and with control), and strengthen my core with. Strengthening my core will help take pressure off of my back muscles. All in all, I was very happy with my appointment today and found out the answers to my questions. When you have fibromyalgia, you'll have spurts of day when you're feeling like you can work out each day, and then weeks when you don't feel like you can do much of anything. The key is balance. Even on days when I'm not feeling well, if it's scheduled as a day when I need to do some aerobic and stretching activities, then I can sit my butt on the bike and slowly pedal for 15 minutes, to help maintain my muslces. This is very important and I look forward to seeing what kinds of benefits that this will have for me.

Bringing new energy...

2009-02-15T17:46:00.002-06:00

I recently began to sell some of the arts and crafts that I make on etsy.com. I had always been curious to see if I could actually sell my work and now I'm finally giving it a go. Art has always been such a huge part of my life. I've always enjoyed doodling and playing with various types of media. I remember when I was little and my mom would clear off the table and lay out huge sheets of paper for my little brother and I to fingerpaint on. It was great!! Now, I paint, draw, sew, make collages, play with photographs, and making alterations to various items throughout my home. Art has always been a great way for me to cope for my day to day stresses, and now, my day to day pain and exhaustion. When I begin working on a new project my energy is renewed for a while and I get excited about sharing my art with others. It's a kind of thrill that I think perhaps only other artists could understand, whatever media they might use, including writing. Just creating something. It's truly rewarding. If you're interested in looking at the things that I've posted online the link for my art and crafts is: www.leelabean.etsy.com

What do you do to help with cope with your day to day pain?

Fibromyalgia and Chronic Myofascail Pain

2008-12-09T21:46:00.003-06:00

I have finally been diagnosed and the diagnoses are: Fibromyalgia, Chronic Myofascial Pain, TMJ, and Restless Leg Syndrome (in my arms). I have started physical therapy twice a week for the TMJ and once a week for my back. Today, I had an EMG taken of my arms and learned that my nerves are good to go. Some of the docotrs I had seen in the past were concerned that I may have nerve damage. My doctor told me that my nerves were fine and that there's no evidence of carpal tunnel or anything either. Last night was a pretty bad night for me. I didn't sleep at all having been out of my Ambien CR. Because I was out of the Ambien, I had taken a generic sleep aid with Diphenhydramine (Benadryl) in it. My arms went crazy and the creepy crawly feeling in them got really bad. I also felt it a bit in my left leg. Needless to say, I didn't get much sleep...maybe two hours.

My doctor had suggested a book for me to read "Fibromyalgia and Chronic Myofascial Pain: A Survival Manual" and I am currently on the chapter on medications. Diphenhydramine had been listed in the chapter and the book stated that in about 20% of people, Benadryl acts as a stimulant instead of making them sleepy. I decided to do some research online on "Benadryl + Restless Leg Syndrome", and sure enough, I found a lot of information on how Benadryl can trigger nasty reactions in RLS. So I learned that Diphenhydramine and RLS do not mix. For those of you who have RLS, be very careful with antihystamines.

I'm so relieved to finally have a diagnosis after 6 years of wondering what was going on with me. I now have a direction in which I can go in terms of treatment.

Yoga to the Rescue

2008-10-29T12:57:00.002-05:00

Today I tried a new yoga DVD that my mom had gotten for me. It's called "Yoga to the Rescue: Feel Good from Head to Toe with Desiree Rumbaugh". I tried about the first half of the workout and the stretches were great. They focus on strengthening the neck, back, and shoulders which is great. The workout portion is actually set up in single segments for each pose/stretch so you don't have to do them all as a series if you wouldn't like to or if it's uncomfortable. So if some of the poses are bothersome, while others feel good, you can pick and choose which benefit you the most. Always check with your doctor to see if they feel that this dvd is something good for you to be doing. I think this dvd is something that could be good for me to keep active and maintain strength. I can see this as being a very relaxing activity as well...the music is soothing and is filmed in a beautiful studio. I feel like this dvd can be emotionally and physically healing and plan on using it at least once a week.

Is there a specific activity or exercise that you use to maintain muscle tone and flexibility? What have you found that works and doesn't work?

A Great Doctor's Appointment

2008-10-28T15:02:00.003-05:00

My doctor's appointment went so great with the new doctor. He understood everything that I was talking about. He checked the trigger points in my body and head/face and I learned that I'm a jaw clencer, which I was never aware of doing. He had a systematic way how he went about checking me and it was clear to me he was knowledgable about pain. He grabbed one of his books which had illistrations of the trigger points and where the pain radiates to if you have problems with them. It was illustrating the paths of my pain. He told me that I have a lot going on and mentioned fibromyalgia, chronic myofascial pain, and restless leg syndrome (in my arms). I set up another appointment in which we're going to discuss diagnoses and medication further. He's going to look at all my records, MRIs, and CT scans. I've also been scheduled for an EMG on my arms. I would describe my symptoms and they actually made sense to him. He suggested a book for me to read: "Fibromyalgia and Chronic Myofascial Pain: A Survival Manual". He checked with me about sleeping, anxiety, he looked at the whole picture. For the first time in a very long time I feel like I might be able to treat some of the pain medically. It was the best feeling...I actually began to cry during the appointment and he asked me what I was thinking about. I was thinking it's been 6 years until I've felt a physician really understood what I was going through and could help me out, I've been nervous about work because bosses hadn't believed me or were unfair, and that it's been hard. I'm getting closer to actually being diagnosed and finding new ways to help cope with the pain and I'm really excited.

Pain Managment appointment

2008-10-20T21:18:00.002-05:00

I have a doctor's appointment at a pain managment clinic on the 27th. I'm really looking forward to this appointment b/c I haven't seen a doctor regarding my pain for quite some time. I plan on working on the insomnia and headaches. I hope that I will be able to treat these problems more successfully than the chronic pain, itself.

I am also planning on starting to work out regularly again. I go through spurts of working out and then being lazy. My goal is to work out at least 3 times a week. Those 3 days I need to at least be doing 30 minutes of cardio. Then I will lift light weights on the days that I feel able to do so.

Today, I spent most of my time looking for jobs online. I found one, maybe two, counseling positions that I can apply for and a few regular jobs I can apply for. I hope to do part-time work while I put ideas together for starting a nonprofit organization. I'm nervous, but I'm also excited. It's time for me to organize my stuff and get my working life in order. After graduating, I'm definately ready to begin the working phase of my life.

Developing a Wellness Toolbox

2008-10-06T21:14:00.003-05:00

**Side Note** A "wellness toolbox" is a concept that I've become familiar with in the counseling field. Most of the information I've seen on it on the web is geared towards the topic of depression. I've changed this a bit for the topic of chronic pain.

The ides of a wellness toolbox can be helpful as you anticipate flare-ups in pain. For your wellness toolbox come up with a list of things that you can do, or have done in the past, to help relieve your pain and emotional distress or to keep you feeling well when you are good. Include any strategies, activities, or skills you can use for pain relief and/or a mood boost. The more "tools" you have for coping with chronic pain, the better. Try and use some of these ideas each day, even when you're feeling good. You don't want these things to be associated only with bad times...they're there for you to help you feel better, not remind you that you're not feeling well.

These lists and items can be placed in a special box, container, or drawer. You can decorate this area with soothing colors and pictures if you'd like. Feel free to get creative.

Here are some wellness toolbox ideas for coping with chronic pain:
1. Talk to a supportive friend or family member. (I like having pictures of these people. You
even ask these people to write a short, supportive note on the back of the picture to remind
you that they're truly there for support when you need it.)
2. List what you like/appreciate about yourself and/or your life.
3. Write in your journal.
4. Read a good book or watch a good movie/tv show
5. Take a long, hot bath or shower.
6. Listen to music.
7. Get a massage.
8. Do something nice for someone else.
9. Stretch. (Ask a physical therapist which stretches would be most beneficial for different
aches and pains).
10. Spend time with a loved pet.
11. Meditate and/or pray.
12. Schedule a time for bed that you follow each night.
13. Meet with a counselor.
14. Attend a support group.
15. Do something that makes you laugh.
16. List of things to avoid when you're not feeling well. (i.e., alochol, sugar, caffeine, certain
people, staying out late, etc.)
17. Complete a small task. It feels good to get even a little task done during the day.
18. Take a short nap (maximum of 30 minutes, you don't want to negatively affect your sleep
cycle.)

You can also place items in the box that you can use to help relax...like an eye mask, earplugs (for short naps), a hot and/or cold pack, a special scented candle you light, massager, etc.

Fall is Coming

2008-09-29T21:54:00.002-05:00

The weather has been getting cooler and the wind has been picking up. That equals greater chances for pain each day. As the seasons change, I can feel it in my muscles and in my bones. The cooler weather tightens up the muscles. This also means that it's easier to pull and strain muscles while doing daily activities. I think it's really important to develop a plan for ways to ease pain when the weather gets worse. This often times involves heat. A hot shower and letting the pressure from the water massage your neck can be a lifesaver. Wearing appropriate clothing for the weather and temperature is important as well is being prepared for weather changes. I almost always have a sweater in the car, just in case I get cold. Cold = increased pain. Which reminds me, I was going to post about making a "Wellness Toolbox" directed towards those who suffer from chronic pain. Look for that information in my next post.

Pain Assessment Tool

2008-09-21T11:07:00.002-05:00

This is the scale that I use to rate my pain. I try to do this daily and keep a log of it, but that's tiring also, which is a bad excuse. This morning my neck is at a 7 and my headache is at a 6. After doing some stretches my upper back has gone from a 6 to a 5. If you use the same scale regularly than it is easier to follow pain levels more reliably. If you switch how you rate pain, there isn't much of a point to recording it if they don't correspond to one another.

From yesterday to today, there has been about a 10 degree drop in temperature. Could that be the reason my body is so tight and sore today? Maybe. Could it be because I painted yesterday? Maybe. I also did some cleaning yesterday...so maybe that's what caused it. My best guess is that it was a combination of everything.

Keeping a pain journal is very useful for tracking pain day to day to try to find patterns and reasons for why you're hurting. When you're in pain, the days can blend together and it's easy to forget what you've done and what you haven't done. Keeping note of it and weather conditions can help you better understand your pain triggers. The journal is also an excellent outlet for recording how you're feeling during these difficult times.

Do you keep a pain journal? Has it helped you notice any patterns in behavior and your pain levels?

Sleeping positions

2008-09-19T22:38:00.005-05:00

When your body hurts, sleeping can be difficult, to say the least. A way to help take pressure off of your spine is by placing pillows under and between your knees, or under your hips when you're sleeping on your stomach. Sleeping on your stomach is thought to be the worst position for your back because it makes your spine bend and press down. Here are some pictures to illistrate what I'm talking about.

Placing a pillow in these ways help aline your spine in it's natural position, taking pressure off of the spine, and helping to ease pain. Just today, I went to lay down due to neck and back pain and put a blanket between my knees while I laid on my side. I don't like to sleep on my back much unless I absolutely have to b/c of pain. The blanket took pressure off of my spine and hips, making it easier for me to fall asleep.

There are pillows that are manufactured specifically for these purposes, but you can save yourself the money by using a regular pillow or a blanket.

Other treatments to ease pain

2008-09-15T21:08:00.010-05:00

I realized today that I had forgotten a few other things that I do to try to ease pain. Another suggestion that doctors and physical therapists give, if you have a neck injury, is to wear a cervical collar for a given period of time to rest your neck from the weight of your head. When your head feels too heavy for your neck to support...it's a dreadful feeling. Wearing a cervical collar can take the pressure off of your neck for a while. I find that if I wear it for too long, though, my neck gets stiff and can sometimes hurt more. For this reason, I sewed my own cervical collar. At the time, I wanted something to wrap around my neck that wouldn't limit my range of motion. I got some fleece that I had in my fabric box (I just began sewing about 2 years ago) and traced the shape from my "Bean Yoga" neck wrap (I'll post a pic later in this post). When I made this it was when I was desperate for some pain relief so needless to say, I didn't have any stuffing that I had bought for this project. I looked around the house and found some cotton spider webbing from last halloween and put that inside. I sewed the wrap closed, added on an elastic strip with velcro on it...and placed the other velcro end on the other side. This allowed me to fasten it so that I wouldn't have to hold the wrap in place and was also loose enough that it wasn't constricting on my neck. I really like this thing. This is the "Bean Yoga" heated neck wrap that I traced for my neck pillow. I got it from my parents for my birthday a few years ago and it works pretty well. You just pop it in the microwave and strap it around your neck. You can order this and other wraps at http://www.beanproducts.com/ .

I also love, love, LOVE my tempurpedic pillow. I got this for Christmas about 5 years ago and I don't go anywhere without it! It took a few nights to get used to and I felt discouraged about using it at first. Once I had broken it in, it felt so good on my neck. Something I found a bit odd, if you leave your pillow in an area that is pretty cold, it begins to harden/freeze. So when I travel in the winter, I make sure to take it inside if I can. I definately recommend trying this or a similar pillow if you have neck or back pain.

This last product is more relaxation involved. I bought a lavender/vanilla pillow mist at Bath and Body works that is said to help you sleep better. The scent is supposed to be relaxing. If anything, it smells nice when you lay your head down to sleep. Anything you can do to help sleep a little better is worth it. It's something I can do as part of my routine to relax and get ready for bed.

Finally, I came across this while searching for the "Bean Yoga" neck wrap picture... I found it at www.want2care.com/elasto_gel_products.html . This wrap can be heated or cooled and I may check into getting it. I just thought some of you may be interested in trying it. If I get it I'll let you know what I think about it.

New to blogging

2008-09-15T16:42:00.004-05:00

I just added some advertisement options for my page. I thought it was pretty cool b/c you can customize what topics and ads are on the page through keywords. You can also choose specific websites to get information from...naturally, I added websites that I've gotten some valuable information from. I know ads can be annoying, but hopefully the ones that are on here will apply to chronic pain issues and can lead you to useful information. I'm just trying this out so we'll see how it goes.

Pain levels the last several days have been 6-8, not good. I believe this is due to the cooler and damper weather. My body has been very sensitive to temperture changes, rain, snow, humidity, etc. How does the weather affect your pain? Can you tell that the weather may be changing due to pain you're experiencing in your body?

Coping strategies for "bad days"

2008-09-10T20:58:00.003-05:00

When I'm having a bad day, the medications I try are IBuprofen or Vicodin. Vicodin is highly addictive and try to use that as a last resort. These are the other things that I try to feel better:

1. Heat pad
2. Cold pack
3. Massage pad (heated Shiatsu massage)
4. Shower
5. Funny movie
6. Crossword puzzles (this may sound odd, but anything that can occupy your mind can be
helpful). I had taken a couple trauma courses in graduate school and they talked about how
activities like crossword puzzles are therapeutic.
7. Calling supportive family and friends
8. Stretching
9. Breathing exercises
10. Listen to music
11. Nap/lay down
12. Meditation and/or praying
13. Paint or draw (if I can manage to do so...and it occupies my mind enough from the pain)
14. Play with or watch our guinea pigs
15. Journal or write

Those are the main things that I try doing to ease pain on bad days. Do you have chronic pain? What kinds of things do you try to do/use? Do you know someone who suffers from pain? Which of these activities could be helpful for them?

Minute by minute, hour by hour, and day by day know you are not alone.
Lindsay

Today is a bad day.

2008-09-10T16:39:00.002-05:00

I hurt all day yesterday, even with the vicodin. I didn't get much good sleep last night and today is full of pain as well. I use a pain rating scale from 1-10 (1 not being bothersome and 10 being the "worst pain imaginable". My neck has been at a 7-8, my headache at a 6, and back pain has ranged from a 6-7. I laid down for a couple hours didn't feel any better and didn't sleep. My neck is very tight, cracking, and throbbing in pain. The headache is dull, but constant. The back pain comes and goes. It's been very difficult to think and I've teared up more than once today. And this isn't even a bad BAD day. It makes me wonder just how much I can put up with. This is what makes pain so difficult to gage from day to day and person to person. I've been in pain to some extent every day for over 6 years. My 1 or "not bothersome" may be a 3 to someone else. I often wonder if I was in no pain and then felt what I felt now...how much I would actually be hurting. When you're used to pain, it's hard to say exactly what you're feeling. So, needless to say, I've been more depressed and sad today. I try to distract myself with funny movies or projects (I love art), but it doesn't always help...especially when the pain is constant and overwhelming. The pains getting worse...I need to try something else, but I have no idea what. Usually all I can do is sit or lie down and wait.

Treatments I've tried for chronic pain

2008-09-06T22:13:00.009-05:00

Treatments tried for chronic pain, insomnia, and headaches:

1. Physical Therapy - Deep tissue massage - Ultrasound - Cervical Traction (seen below)
- Cervical traction: parts of the spinal column are “pulled” in opposite directions in order to stabilize or change damaged aspects of the spine (http://www.spineuniverse.com/ineuniverse.com/ww.spineuniverse.com/ ). This process sometimes felt good and sometimes really hurt. It can also give you vertigo, making you dizzy and nauseous.
- Stretches and other exercises (with and without elastic bands)

2. Medications
- Neurontin (Gabapentin): nerve pain
- Cyclobenzaprine: muscle relaxant
- Noritriptyline: muscle relaxant
- Amitriptyline: muscle relaxant
- Topamax: headaches
- Tramadol: headaches
- Depakote: headaches
- Ambien: insomnia
- Ambien CR: insomnia
- Lunesta: insomnia
- Ibuprofen 800mg: as needed for pain
- Hydrocodone (Vicodin): as needed for pain
3. Acupuncture: done on the head, neck, and back
4. Injection therapy: injections were done from the middle of my head down to my lower back.
- Prolotherapy: A sugar solution or other irritating substance is injected into trigger points (areas where pain is felt) in the fibrous tissue that covers bones. This is believed to trigger inflammation, which causes fibrous tissue growth that can strengthen the area.
- Cortizone shots
- Trigger point injections: Anesthetic is injected directly into areas of the body where pain is present.
- Lidocaine injections: to numb area of pain
- Procaine injections: to numb area of pain
5. Lidocaine patches: to numb area of pain
6. Scapular taping: taping the shoulder blades back into the position they should be in
7. Massage
8. Diagnostic tests:
- X-rays
- CT scan
- MRI
9. Types of experts and doctors seen: family physician, sports medicine specialist, neurologists, pain management doctors, alternative pain medicine, trauma therapist, physical therapists, pain psychologist.

That is everything that I can remember at the moment and I think I got it all. As far as I’ve been told by several physicians, I’ve tried most of the treatment options available. All options except for surgery…shoulder restabalization surgery, and that it wasn’t “guaranteed to work”. So that was that.