Chronic Pain

Hey, all! Thank you for your concern. I've actually been suffering from extreme fatigue these past few days. I can't keep my eyes open for long, so I use what precious little energy I can to do laundry (clean undies is a good thing! lol), and feed the puppies. I try to take my walks around the block, sometimes I can only make it around once.

How's everyone else been doing?

Harley Honey

Thank you so much for coming to let us know how your doing. I'm sorry for the extreme fatigue. Have you had a diagnosis of chronic fatigue along with your pain??
I have FM in addition to chronic severe spinal pain, so I understand how badly this type of fatigue can really bring you down. I've had it bad enough that I've not had the energy to reach the remote and chage the channel on the tv, so I know what your going through.

I'm glad to hear your working on a daily walk though and if all you can do is one time around the block, then so be it. Your trying and that's all that matters. Getting out for a short walk and a little fresh air, can help us clear our thoughts, fresh air, it's good for your emotions/mental state too.

My own walks are not all that productive for physical fitness or anything like that, but they get me out of the house and out of this recliner and up, walking, etc.

I hope you'll have some new ideas to hopefully get you some additional medical help dear.
You take Care and please know that we're all here for you. Any time you wanna talk, just let us know.

Gentel hugs dear
Betty

Hey, Betty! I'm so glad I have a place to come and chat with people who can honestly say they know what I'm going through!

I haven't had ANY diagnosis with ANY of my issues. One doctors says this while another says that, and then others still say "everything seems normal" (which I don't get, how is it "normal" to be in pain everyday and completely drained of energy?). Ugh, I think if I had the energy to do so, I'd apply for medical school myself! lol.

Anyways, goodnight, my friend! Keep warm and comfy!

Harley

Hello again Harley

How ya been girl friend?
Sometimes I think it's a nightmare to get a diagnosis in the world of chronic pain. For some reason, It feels like no doctor wants to commit themselves to what your pain condition is. I've had a bit of trouble with this situation too.
Do you keep any type of diary for your pain/fatigue condition? I know of a couple different types. One you can get from the APF and you print the pages out and then fill in the questions, pain levels, etc.
The one I use and like the very best is an online pain diary that has physician graphs & reports of your diary info. you just fill the info in and before you go to see your doctor, you click on reports and it generates really professional reports & graphs for your doctor to look over and see how bad your pain is and how it interferes with your life. It was not till I began my diary and taking a current copy of my records in to my doc that I finally began getting some headway with our communication and finally got a confirmed diagnosis too. Just something for you to think about.

I know what it feels like to see doctor after doctor and have them run some standard tests and they come back normal. Doctors need to have some solid evedence to view to get a handle on our pain. If we show up and just say we hurt all the time, they don't really take us seriously. So I highly recomend the diary for some type of consistent record with personalized notes to give your doc some solid information to view.
Let me know if you want me to get you the links and I'll post them for you to check the diary's out.
You take care and I'll talk to ya soon.
Stay calm and get some rest. We can talk about more ideas to get you some additional help anytime you want.
Gentle Hugs doll
Betty

Hey, Betty!

Life's been okay for the past few days. The pain has been behaiving itself (somewhat) and I've taken advantage of it by having my friend, Jeffrey, over for the weekend. We didn't do much, but it was still nice to have him around. The weather seems to be warming up and soon I'll be able to go sit on a warm beach with the doggies instead of the house.

How have you been?

~Harley

PS: I'd love to have the links to the online pain journal! I'm going to be switching doctors because the one who was treating me left his practice. Now I have a doctor that's basically straight out of medical school. She's nice, but I don't think she has the experience to really help me. I need someone who specializes in chronic pain. Thank you so much!

Hello again Ms. Harley

It's good to hear from you hon!
How wonderful that you were able to have your friend over for the weekend and your pain was manageable. Yeah! Some social activities.
I bet it was really nice.

You live in California don't you? Near a beach and guess. I love the beach, but we've not been since last summer in Hawaii. We don't get to the Oregon coast as much as we used too, we use our weekend trips to go see our son in Seattle now.

The online Pain Diary is at reliefinsite.com and the one you print out is at http://www.painfoundation.org/page.asp?file=Publications/Index.htm This is the page with all kinds of great publications that you can print out and use or study to learn more about pain. Scroll down the page to Target Chronic Pain Overview, then click on the PDF of the Pain Notebook, the Full Card & Pocket Card are also good to print out too. I think you'll see the rest of the publications that are free for you to save on your PC or print out and put into 3 ring binders. I have all the publications printed in binders and have read them all. I use the binders as I was not able to sit up to the Pc and read them while online. I probably could now that I have my laptop though.
Be sure you look both types of diary over to decide which ones better for you. The best diar for each person is the diary you will be inclines to fill out and keep an ongoing printed or written account of your pain. The frequency of your diary entries is entirely up to you. I like to make a daily entry when I have a doctors apt coming up in a couple of weeks and then I make entries a two or three times a week in the mean time. Some people only make entries twice to three times a week year round. just figure out what's best for you and not let it be too often that you become obcessed with making and tracking your pain. Each person is different and so is there own pain, so just do it how is comfortable & convient for your self. I hope that makes sense.
If your going to be seeing a young or new doctor, you may want to get a start on your diary, so that they will have some real substantial account of your pain and can better evaluate the type of meds they feel will work best for your own pain.

Let me know if you need any more information to help you with your doctors visits. A pain patients appointments running smooth and getting as much information through to our docs in the limited short time that we have their attention is very important in their ability to understand how much and how often we are in pain. I really cannot stress this enough for every new pain patient or every pain patient that is trying to figure out how to get theri doctors to listen understand what their life is like and how badly they are suffering.

When I was excepted as a new patient at the pain clinic I go to. All new patients are required to take the clinics 10 week course in Pain Management. If you don't go, you don't get treatment. So most of what I share with people, is what I have been instructed by the doctors & staff at my clinic to do. At first I thought, geesh I dont want to spend so much time fiddling with this stupid pain, what a bunch of crap. I really fought them on the diary and educating myself on the pain sites they recomended in our notebook, they kind of treated me with the same amount of seriousness as I tried in my time. Once I got going on this diary and tracking my pain and actully sincerely following their instrctions, was when they began treating me better and also giving me more of their time too.
I guess what I'm trying to say, is your doctors will pay more attention to your needs in regards to pain management, if your willing to provide them with the information they need to know how to treat you.

I hope this works out for you hon. I know your really needing for someone to take you seriously and someone to say, "I'm going to help you feel better!" Those were the sweetest words I ever heard come out of my Pain docs mouth.
I wish every pain patient would get the proper treatment that they all deserve.

thank you hon for continueing to let me know what's going on with you. We all care here and really want what's best for you.
Take Care & Gentle Hugs
Betty

Thank you so much, Betty! I'm going to start filling them out every other day or so. Maybe that'll help the doctors understand that it's not as simple as cram some pills and get back to work! I swear they've never taken percocet or vicodin because they seem to be clueless about the fact that those medications make you so completely out of it, a shower could be dangerous! gaaah!

How are you doing over there? Seeing any sunshine yet?

Much luv,
Harley

Hey Harley
I musta missed your notification that you posted again.
I'm really happy that your going to begin your diary, it will really help your doctors to see your pain in a better prospective, other than you just having to try and remember the correct answers to their questions & such.
I happen to be in a great deal of pain by the time I get dressed & ready to head to the doctors apt, and the car ride is another triggr for pain and by the time I get there, I'm in too much pain to give them the best answers they need at the time. I always type up a life summary the night before my apt too, then I type up my questions on another page too. So when I arrive, I have my diary printed out for the past few weeks, lists of my meds, doctors I've seen, test run & results, my life summary for the past few months since I've been seen and then my list of questions. I normally leave my diary with them so they can look it over better after I'm gone or later when they have time. Iknow for some it seems like over kill, but I went though months of doctors apt, pain, pain & more pain. My life was falling apart, I could barely get myself out of the recliner and my activity was crawling from bedroom, to bathroom, to recliner and then doing the same all over again.
After I listened to some helpful people at the APF and took my chronci pain classes. I followed a routine of what these professionals told me and all of a sudden all my doctors were listening to me and ready to help. So all I can say, it sounds nuts and a patient should not have to go through all of this, but it worked for me and my doctors have grown to appreciate my paperwork and now seem to expect me to provide them with a full report of every activity, med, test, etc that I do and what my pain levels are on any given day of the calendar.

I really want to see you get help honey and I don't want you to just suffer alone. You deserve better than that.
We all care about you and all want to help you in any way we can.
Hope you had a nice weekend
Take care dear heart
Betty

Hey, Betty!

I've officially started filling those little thing-a-ma-doo's out, and they are really helping me realize how much meds I'm taking and how much they aren't helping! WOW! I didn't realize exactly how many pills I take during the day and still hurt - and that the mornings seem to be worse because I take the Norco at 10p and nothing until 10a the next day. I think I need to investigate into something that's a wee bit longer lasting than 4-6hrs - maybe something like OxyContin.. but, I don't want to end up hooked on that. Oh, well.

How's life been for you? Is it warming up? Out here it's bright, sunny, and almost near the point of "summer". LOL. My doggie, Cookie Monster, has taken to going swimming everyday in the swamp-water at the bottom of our pool. The dog smells like Florida now. LOL.

Anyways, I hope life's being kind to you these days! *hugs*

Harley

Hello again Ms. Harley

I see your getting your info filled in and seeing some patterns and coming to some conclusions too.
After you've filled out your diary for a few days, then just for fun, run a report and see the graphs & such you can create & print for your doctor to look at. You can even send him an invite to view your diary online if you want him too. I've also invited family to take a look and they have been surprised at the amount of pain I'm in.
You sound good and I hope the warmer weather helps you some. Try and spend some time in the sunshine. The uV rays help to increase the bodies natural release of a substance that helps with pain, so be sure and get out and soalk up some rays, you'll be amazed at the relief it gives.
Swamp smelling dogs makes me laugh! I'd have to shut my kids off from the pool, they would love to play in the water and boy would that stink up my bed. NO WAY!

You take it easy dear and I hope your able to get some more relief.

Hugs
Betty

Hey there, Betty!

Yea, I am starting to see some patterns. It seems the pain seems to be way worse in the morning (probably due to the fact that I'm just waking up and don't have pain meds in my system), and at night around dinnertime (not sure why because I usually take more pills around 4.30p).. but, I am seeing patterns..

Now, I get to be on bedrest until Tuesday. I managed to get bronchitus, pnemonia (of the "walking" variety), ear infections, strept throat, and a version of the flu that isn't covered by the shot I had gotten back in October. Yea, I'm talented like that! lol.. but, the sun's shining and the doggies are playing in the pool (the little one is SOAKED and on my sofa - how lovely?! lol). Hope the weather is doing better for you. The warmer weather feels great on the aching bod..

Much Luv,
Harley

Hey Harley girl

I think your assesment of your times of higher pain levels is really acurate and actually a very popular time for those of us with pain to experience higher levels of pain.

The morning pain is normally referred to as end of dose pain. your thoughts on it being over the time for you to of taken something for pain is exactly right. You may want to talk to your doc about an extended release med and this may help you better through the night and through the day as well. When I got to my pain clinic in the beginning, I was on the pain rollercoaster because the faster acting meds that your on, only last up to about 6 hours and depending on your pain, mine were only lasting me about 2 hours, so she switched me to a longer 12 hour med and it's made a huge difference.
I want to send you a link to a site for you to look over some information that may help you when your talking with your doctor.
http://web.archive.org/web/20051017025738/painreliefnet...ted_or_informed.html
This is a page to let you know and consider some better options in talking to your doctors and some key things you really should avoid. I thought maybe it would help you out. At your age, I'm sure it's hard enough to get treatment and I just would like you to get treatment, so you can take your life back and get back to school and the things people your age are doing.
The site is very informative in many areas and it's also into pain advocacy too.

I'm really sorry your down with the bug's & infections. gosh if it's not one thing it's another. Get plenty of rest, chicken soup and hopefully you'll get all healed up soon.

One other thing to think about for your afternoon pain, it's normally the time of day right after we've been active, whether your up doing things around the house or if you've been down, it's normally when a ill person will get up and bathe, dress, etc. These activities can make your pain ramp up, so if your waiting till it's already climbing to take your meds and then you carry on through with what ever your doing, it some times does not give the meds a chance to get control over the pain, if you push on through, so I would also recomend that when it's time to take your afternoon meds, take them on a schedule and either lay down or recline for at least 45 minutes to let them begin working and then get up to do what ever you wanted to do.

I always have to recline in the am & in the afternoon to let my meds take hold, then I can get up and do something more.
I hope this all makes sense to you and I'll be thinking of you this weekend.

Take Care, I'm really happy your getting some things figured out
Hugs
Betty

Dude! I've made note of several doctors who look at me funny when I know about my medications, and all the other options as far as pain meds go. Even in the emergency rooms around here I've been labeled as "opiate-dependant" simply because of my past history of having to take these pills. I try my best to explain to them that yes, I likely do have an issue with being "attached" to these meds, but I do not fiend for them. I do not take anybody else's medications - for any reason. I typically do not double my medications unless in extreme situations - like now because of all the other illnesses I'm suffering at the moment, but it's only been for the past 2 days and only every 6hrs, as directed. It's not even the percocet, it's the norco - the lowest dose possible was written and I asked if I could double it (annonymously called the pharmacy) and was told it would be "okay for a few days". So, it's not like I'm going banannas asking for prescriptions to be refilled. I do call and ask the week I'm going to run completely out of things, though, but, like the article says, it's the same deal as with diabetics (my mom is a type 2).

The one doctor I had on my side and would refill my pain meds just left his practice in December. His replacement is nice, but fresh out of medical school. He trained her and told her my background story. Even still, she doesn't "feel comfortable" with refilling my pain meds, she left me high and dry last weekend! I luckily had a refill on the norco (which is all I'm taking now), which I got filled after fighting with pain, with absolutely no meds, for the entire weekend. I did my best to distract myself with a trip to Long Beach, but that only did so much. I'm currently searching for a new doctor - one who deals specifically with pain management.

I can't believe that a list like that even exists! Seriously! Anybody who walks in off the street with a broken foot can get vicodin, but someone who comes in repeatedly with chronic pain and fatigue gets no treatment at all! I'm not stupid. I'm a scientist. All my life I've been taught that if someone can't give you an answer or an answer that satisfies your curiosity, you go find the answer yourself. That's what I've done. I didn't just wake up one morning and decide that I have Lupus. I don't want that. I'd rather face cancer because, with cancer, you get better or you die from it. There is no limbo. You don't suffer with pain and sickness for years on end (in most cases). Doctors don't think you're faking it with cancer, but gawd help you if you end up with something like Lupus or Fibromyalsia. Diseases that don't show up on paper very well, if they even show up at all. I've done my research on both of them. I've ruled out Fibromyalsia on my own simply because the pain is there, but you don't end up sick like I do, as per my research, everything matches Lupus. When you can go down the list of known symptoms and check off 9 out of 10 things without any other explaination, it pretty much gives you a good direction to go in. Several Lupus Foundations have stated that Lupus does NOT show up on paper. Sometimes the ANA will come back as "high-abnormal" (which I've had happen), and then come back as "normal" within a week later. The symptoms themselves are confusing. They say it's a matter of disqualifying everything else before a diagnosis of Lupus is given. I understand that. But, to be labeled a faker because I know this information (easily found on the internet through reputable sites such as WebMD) is ridiculous. I find it odd and insulting when the medical community supposedly wants you to be an "informed patient" and active in your care, but when you actually do your homework, they assume that because you've looked things up, you know the symptoms to "fake". WTF?!

Anyways, thank you very much for that information. There isn't much I can do to change my intelligence level, or the fact that I actually read the pamphlets that come with my prescriptions. I can check off so many of those things, as can any person that's taken any pain meds for any reason. Oh, well. I'm going to stop ranting to you about this. LOL. Have a wonderful (and hopefully comfortable) evening. I'm going to go rest. I did my cooking last night and this morning - homemade Potato Salad and Cheesecake!! If you'd like recipes, let me know!

Much Luv,
Harley

i wish i could walk that far before being struck down to my knees and feel like throwing up from the pain.

what's a matter, nun?? talk to harley - she's fairly aware of the nonsense that comes your way when you're sick, hurt, and young.. it's just not fair - for anyone..

hugs,
harley