Chronic Pain

A 49 year old female living and dealing with lumbar back pain and fibromyalgia. Sharing things I do for relief, reduce stress and control weight gain.

Tuesday, April 1, 2014

Where do I start?

2 week pictures
Spring pictures of A
Where do I start?  I'm not doing to well and it shows in keeping up with my blog.  I've come to realize when I'm feeling better I tend to "want" to blog.  I've really had a tough time through this hard winter we had this year.   I think about it a lot, and feel like all I will do is complain and who wants to hear that. 

I was reading something in a book about dealing with chronic pain and the writer mentioned to not be afraid to let your friends and family know and help them understand how your feeling.  If you don't, they won't understand your behavior at times.  What happens to "you" is you shut yourself off from everyone.  I watched it happen to me  multiple times even though I've been in therapy for 3 years now.  This blog was meant for reaching people who deal with chronic pain and/or have a SCS.  it was meant to be a pain journal so to speak.  Someplace I could feel comfortable talking about how I feel and how I'm dealing with it.   So here I am back to complain.  I really should continue to do more of it here.  As I get through some tough days I'm angry by the time I arrive home.  Depressed or angry.  I don't know how to stay in the middle.  As I've said many times my husband ends up take the brunt of my release.  

My latest ailments outside of the everyday trials are a flare up of my gastritis/reflux and the bursitis.  In my last post I was feeling so positive that the bursitis was almost gone.  I was feeling very little and was continuing to do the stretches even though I'd been released from OT.  Within weeks it was much better but unfortunately it just moved areas.  I woke up during the night soon after with my upper arm on same side hurting.  The pain was all the way from top of shoulder to my elbow on the back side of the arm.  (tricep area)  Over the last month it has increased to the point I can't lift my arm straight out or past shoulder area.  I decided to just deal with it because I had an appointment coming up with my rheumatologist.  My OT had already told me the PT would be the person to help me with anything above the elbow.  I know Dr. C could give the recommendations and stretches I needed.  I preferred to wait for his advise.  

Meanwhile, during the same time I was waking up every morning with a burning sensation in my stomach.  I was also very nauseous to the point I didn't want to eat anything.  I put up with it for two weeks then decided to go ahead and schedule with my gastroenterologist.  I figured they'd be sending me a card soon since it had been a year since I'd seen him and my Nexium was about to be out of refills.  It just so happened the appointment that was available was the same day as my rheumatologist.  The times worked out perfect.  I really love getting two over with in one day instead of going back to town on another day.  

I saw the gastro doctor first.   He said some people build up a tolerance to reflux medication just like a pain reliever so first thing he wanted me to try something new for the reflux.  Secondly, and sadly, he wants to do another scope to compare the changes to the gastritis.  He was not comfortable with he amount of ibuprofen I'm taking.  I told him I really don't have a choice.  I refuse to increase my pain medication.  I may have a change of heart if my scope shows a big difference but I'm praying it's his first thought. Maybe the Nexium isn't working any longer.  My husband has been taking Nexium for years and never had to change.  His symptoms haven't returned though.  

After leaving there I went straight to see my favorite doctor of all of them.  He is the nicest person in the health care field I have ever seen.  Believe me when I say I've seen a lot.  He always sits and talks with me first.  Then he always does an exam.  How many of your doctors examine you?  Maybe your GP?  My PM doctor or my previous orthopedic doctor who did my fusion never once examined my back.  They all rely on notes and x rays.  Focus, back to topic...he cares about everything else going on, not just my Fibromyalgia.  When we discussed my appointment with gastroenterologist he told me he liked the medication he wanted me to try.  ( I really appreciation his opinions whether I ask or not ) He was really concerned about that issue for me and asked me to come back 3 months instead of 6 so I could update him on the scope results and my decision about the Fibromyalgia medication I'm taking.

During his exam he had me do all kinds of things with my arm.  He conclusion was the bursitis was in my rotator cuff not my arm.  The arm is just where the pain refers to.  The good news, it's in place you just have some bursitis there.  Seriously?  So it just left one area of the arm to another.  I really just thought it was fibromyalgia pain.  He reminded me that for most people the pain level is one number but when you have fibromyalgia it amplifies.  He spent quite some time showing me what stretches to do and gave me a print out with instructions.  We decided I could do this on my own at home instead of returning to PT.

I talked to him about my medication not helping any longer.  He gave me the option of stopping.  Sometime when you have so many other things going on you think something isn't working but if you stop it you can tell it is helping.  He doesn't doubt it's not, but he suggests I get off and see how much different I feel.  The other option is to bump up to two and see if that helps.  Before I could get it out, (my concern of weight gain), he reminded me it put some more weight on me.  Yes, I know.  It already has.  Even though I've continued to stay on WW's it still creeped on.  I'm back to where I was when I started WW's. I had lost 8 pounds when I started the medication.  I can't imagine if I wouldn't have been following a diet where I'd be.  I like that he gives me options and he's truly honest with me on how "he" feels about it.  

I have a close friend who has dealt with elbow and shoulder pain.  I know she really understands where I'm coming from.  If I try and find the good in having the bursitis not leave but move to a different area it is that if I don't use my arm it doesn't hurt.  I wish it was that way with my back.  In some ways I think they are all tied together.  

On to some good things.   This makes week four of watching two of my grandchildren one day a week.  Even though we've never been very far apart life just keeps everyone busy.  For me, if I'm not busy, I'm recovering.  It's been nice to see them on a regular basis.  When P was born I tried really hard in the beginning to see him as often as possible.  I was still working at the time and it seemed to get harder and harder to get it done.  My daughter brought him to see us plenty of the time.  I can remember so many week ends longing to be with him but just couldn't pull myself out of bed to get in the car to go.  

Not only do I love spending the day with them it also makes me very happy to be helping my daughter and son in law.  It's so hard for mom's to go back to work at any age of their children's life.  I believe it's especially hard when you have to leave an infant or even a toddler especially if its not with family.  It's a long day for me, but worth every minute of it.
AJ is smiling at her big brother and he loves her so.  If I'm not sure where something is he can help me out for sure.

Hanging out with sista

2 week old angel


Five more days until my mom and I set sail for our caribbean getaway.  The closer it gets the more excited I am.  I usually get really nervous about leaving town any method of traveling.  One or two nights before I start thinking of all the reasons I shouldn't go or what could happen while I'm gone.  I've always been anxious about being away from my children.  Now I have my grandchildren I think about and miss. And then there is my baby at home, Dallas.  Of course I will worry about him.  We have a follow up appointment at the vet on Friday so at least I will have an update before I leave.

My mom and I have been off on a short trip together and a longer one with more of the family but never for this length of time just her and I.  We will have plenty of time to catch up, enjoy some great food, entertainment, soak up some sunshine and most importantly just relax. 

Weekend before last A was here for a visit.  She spent Friday night and Saturday with Poppa and Nonna.  On Saturday afternoon I brought her to have some spring pictures taken.  She loves to get dressed up.  After she was done she couldn't wait for her daddy to get there and see her in her beautiful dress and she didn't want to take it off to make sure Aunt B could see "how pretty" (her words) she was.  And I agree.  Take a look for yourself.

I hope to check back in before leaving on Sunday.  If for some reason I don't I will be around soon after to show off some pictures from our trip!  Enjoy the rest of the week.  We will return on the following Sunday.

Until we chat again....remember to have HOPE-Hold on Pain ends

Sunday, February 23, 2014

Come on Spring

We've had a tease of spring weather this past week.  The high in the 70's several days in a row.   Last week end D pressure washed the deck to prepare for sealing.  Between watching him work outside around the pool and the weather it really gave me pool fever.  I can't wait until we can open so I can get back to doing some walking.  We'll see about the lap swimming.  I have every intention to go back to it, but I'm slightly concerned that it may have caused the bursitis.  Last year when we opened the pool I had to wait 3 more weeks because my incision was still healing from my battery change and reposition.  Not this time.  I'm in as soon as it's open!

D and I are both hopeful that we will open 3-4 weeks earlier than last year with the help of the thermal cover we purchased last fall.  We were able to close a month later than usual.
We do need some sunshine for that to work and we haven't seen much of it lately.   I'm hopeful!  

On to how all my ailments are.  

My aching back: Same old story.  I mentioned last post I was actually looking forward to my visit with my PM doctor.  I'm never looking forward to any appointment but I know I needed some advise on my medications.  I have to say for as long as I've been on the same narcotic it's worked relatively well for me.  We talked last year on my pre surgery visit about changing because it had got to the point it was only taking the edge off and hardly reducing the pain scale number.  I was, and currently getting about an hour to hour and a half max relief from it.  He prescribes TID (three times a day) but I rarely take that way.  As you know, if you've taken narcotics for chronic pain for any period, the longer you take them the more you need to get relief.  You body becomes accustom to the schedule of taking it.  

This past winter has been the worst ever.  My PM doctor stated he couldn't tell me how many complaints over the last few weeks he'd heard the same thing.  I told him all my bones hurt and he smiled only because he said he was waiting for that next.  Something else he has heard a lot.  So we did make the change at this visit.  We have a good relationship and he knows what my pain tolerance is.  He trusts if I tell him I've had to take as prescribed lately to get any relief that I'm at my worst.  He knows I understand the longer I hold off the more relief I get down the road.  Not to say it's always easy.  Trust me, if it's a day that will be hard I take every alley I can.  My stimulator runs 24/7, pain medicine and patch or cream.  

The lateral epicondylitis: After 4 months of OT I was very impatient with it and sought advice from an orthopedic in January.   He confirmed what we already knew.  No arthritis, just a bone spur on the elbow.  Good old tennis elbow.  Takes time, he says.  Yep, I've heard.  Funny thing is about two weeks after I saw him I started getting some relief with it.  I was so glad to get a break from the brace.  I left it off and when ever it started bothering me I'd put it back on.  I saw my OT on Friday and we did a review and release consult after my treatment.  She was great. Always encouraging me that it would get better.  It's not completely gone.  I'm still doing the stretches and careful not to over do it.  I'd say it's 80% better.  

The mean Fibromyalgia: This goes hand in hand with my weight control.  Shortly after I started the medication my rheumatologist started me on I reached a plateau.  I've been up and down by 2 pounds since December.  I can't seem to reach my goal weight for nothing.  It's ok though.  I'm happy I'm controlling the side effects of the medications.  If I wasn't still following a plan I promise you I'd have gained at least 10 pounds by now.  I really think I need to increase dose or take additional dose in the morning but I'm so scared of the side effects.  I see my rheumatologist next month so I can wait until then to get his advice on that decision. It can be brutal some days.  What already hurts intensifies, and areas that have never bothered you and have no reasons to hurt can be extremely painful.  

Dr. Oz had a segment on Fibromyalgia this past week.  I wish he would have committed more than 10-15 minutes to it.  He had an audience member who had symptoms come up and a specialist went over the "trigger points" that are very tender to someone dealing with FM as opposed to someone who isn't.  Why are they important?  Because so many women and men are written of as having some other diagnosis because it is very hard determine if you have FM or not.  For instance, most patients experience fatigue.  Fatigue for long periods of time for some patients.  That is a symptom of a lot of ailments.  It could be from any number of things.  Headaches are another example.  I could name more.  He made a point that made me feel better about something.  He said, some women are actually relieved to get the diagnosis because then they know that people don't think they are crazy.  There actually is something wrong.  I felt a little that way.  So many of my doctors said it was just a stem of my back pain.  I knew better.  I'd done to much research on my own about the illness.  I actually agreed when my rheumatologist started mentioning it.  When he officially put it down as my diagnosis it was disturbing none the less and a relief to know at the same time.

It's Sunday morning, raining and I don't have a place that is not hurting.  Every area is tender to touch.   I can remember seeing the commercial years ago for FM thinking how can that be?  Surely they can figure out what is causing it. 

When I was still working we had several patients diagnosed with FM and I was particularly close with one.  The last two years I was there I couldn't believe the change I saw in her.  Before I knew it she changed before my eyes.  Looking much older and frail, I had so much empathy for her in my heart knowing the "ideas" people have when you tell them what's wrong.  Including my own employer.  I believe she was fighting it years, before knowing what was going on for sure.   That was different for me.  I started out with the attitude that no one but my family needs to know about what they "think" I have.  I will however do everything I am supposed to do to keep yourself going.  Exercise, watching my weight, keeping my bi annual appointments with my rheumatologist.  A lot of people who aren't getting the answers they need stop seeking treatment.  I stuck with him even though for 4-5 years he had no for sure answers for me but he always had plenty information.  Ideas and suggestions for supplements.  He is my favorite of all my doctors, and I have plenty! 

Which brings me to....
My weight:  I just said it to my husband this am.  What is worse, to tough out the pain or gain a little weight? As much as I'm hurting this morning I'm really scared of the weight gain.  It's already put 20 pounds on me once before.   I've continued to follow my WW's program.  My husband and daughter both will tell you that I don't play around with something I pay for.  I'm not going to "estimate" or say to myself, well I've eaten good the last few days so it won't hurt to eat out and guess at it.  I'm sort of OCD about it.  If I can't figure out the points or it's not a chain in the app to know the points I'm going to pass.  With all that said my point is the medication is trying to win.  I'm on a low dose and feel like I could really use a stronger one.   He wrote for BID (two times a day) so I'd have if I needed it.  Hopeful though that a nighttime dose could keep me comfortable.  Most of the time it does.   I'd say out of a month I might do an am dose 5 times.  Today was a day I needed that.  I'm actually waiting for it to kick in right now.  

When I started the FM medication I was two pounds away from my goal weight.  There is no doubt I'd have hit it for sure.  It's been a struggle though.  It constantly fluctuates between 2-3 numbers but never have I dipped past that number I was at when starting the medication.  I've hit it again a few times but mostly stay 2 to 3 pounds above that.  There is no doubt if I wouldn't continue to follow a plan I'd quickly gain enough to not fit any of my clothes.  I've always worried about controlling my weight because of my back pain and the challenge of exercising.  

My Stimulator:  Even though I've been frustrated with my coverage and my lack of support ( I feel ) from my St. Jude rep who I've loved and bragged about many times, I seem to always have it on and thankful to have it.   I don't know if he is just so busy now he can't keep up with his number of patients requests.  My last time reaching him it was quite disturbing waiting to hear back from him.  He's told me in the past, "bug me".  Well, I did.  On the day we were supposed to meet he set me up with someone else because something came up for him.  I've seen her before but not for adjustments.  She was with him for several of my visits because she was training.  We did ok with our meet, but I ran into a problem a couple of days later.  I text and called her.  Guess when I got a return call?  Four days later.  I had figured it out on my own by then, thank goodness.  My stimulator was not making connection with the battery.  I've experienced this before.  One of the reasons I had to have the reposition surgery last year. By the time I heard back from her it was just so disappointing that she even called at that point.  Like it was ok?  Her message gave a reason why I it took so long and it was not even a good reason.  I have to get over it because her and Mr. R are my only options for adjustments.  I'm at their mercy. 

To let you know how much I'm using it reflects in how often I'm needing to charge now  I charged my batter yesterday and it had only been two weeks.  It took 2 hours and 10 minutes.  I used to go a month. sometime longer before charging and at most it was an hour.   I've had it running 24/7 the last few months in this awful damp cold we've had.  I've found if I turn down pretty low and leave running I seem to not be as uncomfortable when moving around in my sleep.  I have 13 programs right now and can only use 2.  I'm thankful for them, but even they could use tweaking.  To have at the level I need I get the zaps into my side and stomach.  I  will soon just bite the bullet and reach out to Mr. R again.  I need to do it before I loose placement with the 2 I have because it could be days before I get something set up with him.  

Dallas:  He has started a medication to help reduce swelling of the tumor in his bladder.  He has good and bad days.  Some days except for his bleeding you wouldn't think anything was wrong.  Some days he is just so lazy and laying around looking pitiful.  Our vet said at some point we will need to put him on some pain medication.  He's still up for his afternoon walk and eating all of his food every evening and she said that is a really good sign.  We are very hopeful that this medication will shrink the tumor enough to keep him comfortable and still active a little longer.  

Sweet AJ and P:  Things are going great for them.  AJ nursing well and P is such a great big brother.  Always checking and asking questions about his "baby sister".  B had two week pictures of her and they are absolutely beautiful.  Can't wait to share, but I have to wait until B sends out her announcements.  They are on their way.  She did share one of P and AJ together so I can share that one with you.  

Makes my heart melt <3

If you are on WW's and always looking for a low point snack like me I'll share a couple I've been having.  I have discovered Wasa multigrain crispbread.  They are only 1 point a piece and I pile on a wedge of laughing cow cheese, also 1 point.  It is a filling snack.  Have a piece of fruit with it and a full glass of water and I promise you it will help curve your appetite until your next meal.  

Wasa crispbread with laughing cow cheese

After my medicine kicked in and I felt a little better this morning I decided to use up my over ripe bananas.   I usually make breakfast muffins with them.  This recipe was a 3 ingredient and I followed exactly.  I already know a few changes I willtry next time.  So simple and  15 minutes from start to oven.  If you are on weight watchers they are 1 point a piece.  I'll probably eat 3 with some fruit.  A good way for me to get some oatmeal because I do not like it in bowl.   I used a measuring tablespoon to make sure I made 16 which is what recipe called for it to make.  That's not as important if your not following WW's.  If you are it is because the points will not be correct if you add anything or make quantity different serving size.  If you want to make them head on over to to get complete directions.  They are called "Healthy cookies"  1 cup of Quick oats, 2 ripe bananas and 1/4 cup of walnuts.  I really like blueberries with oatmeal but these are small so fruit really doesn't do to well.  I'm anxious to finish these and use cranberries or mini chocolate chips next.  

Healthy cookies

Another of my favorites is a pizza on flat bread or a bread that is called flatout fold it.  I love the Rosemary & Olive Oil flavor.  They can be hard to find sometime.  Great for hamburgers or chicken sandwich too.  It is made by same company as the flat out.  Each kind is 2 points but the tortilla I used is only 1pt.  I mentioned it in an earlier post.  I use it to make a wrap sandwich and also toast to crisp and cut into strips to dip in my soup or chili.  Today it worked awesome for my pizza since I was out of the flatout flat bread.  

7 point pizza
You know what I love about making my own pizza?  You can put a lot of 0 point items you like on there to make it yummy.  I used Paul Newman marinara Sauce 1 pt , turkey pepperonis (serving size) 2 pts, mozzarella chesse (serving size) 2 points and the tortilla is 1pt.  It is even better with the flatout flat bread because it's a little thicker and more filling. It also makes the pizza 8 pts vs 7 because bread is 2 pts not 1.  My extras were onions, bell pepper and banana peppers.  So tasty.  

For the first time in I don't know when I don't have any doctor or therapy appointments this coming week.  I won't know what to do with myself.  Really I'll be caring for Dallas.  He's becoming a handful right now.  

I've enjoyed watching the Olympics.  D and I've enjoyed watching together.  They're aren't many shows we watch together.   A few shows that D and I watch together will start coming on again this week so we're looking forward to that. 

Good night everyone.  Have a nice peaceful and pain free week.
Filled with H.O.P. E. (hold on pain ends)

Thursday, February 13, 2014

FDA Acetaminophen mandate

My husband picked up my refill on my pain medication for me last week.  The pharmacist wanted to make sure he made me aware that the acetaminophen level had been lowered from 500 to 325.  I had read about this so I wasn't surprised.  I could tell you all about what I read but I'll just share the link for those who are interested.

There is a need for concern.  I've heard on the news all the concerns of the effects on your liver.  I always stick to the recommended dosage.  Not to say that I don't need 500, but I trust the FDA is looking out for patients who really need to take it on a regular basis.  I've been pumping my stomach with NSAIDs for 10+ years.  Since my back surgery it's been on a scheduled daily dosage without missing.  Like a baby takes a bottle.  One reason is it helps me keep the pain medication level down which helps it continue to work.  I get an hour or two relief so I plan accordingly.  If I took it more often I believe it will help even less.  

I start out with the ibuprofen, 2 hours later the main medicine, 2 hours later more ibuprofen then depending on what I have to accomplish that day I sweat it out, stretch, lye on the heating pad and try to make it to the next pain medication dose.  If I just can't make it I take some motrin in between the two kinds.  Approximately 4 out of 7 nights I have to take a 3rd dose of pain medicine before going to bed.  If I don't let it get out of control I can skip it and just take another dose of ibuprofen if it has been long enough.  Once I'm off my feet, not sitting or standing I get about 70% relief. ( in my back )

You know the commercial that advertises why take 4-6 of this pain medicine when you could take 2 for all day?  It humors me every time.  I take 4 of the liquid ibuprofen.   Two used to work years ago.  Then I needed 3, now it's four.  When they first came out with that commercial I decided to try Aleve again.  It never worked for me in the past.  I tried it twice and then gave the full bottle to my son for his back pain.   It did nothing for me.  I've even tried Rx naproxen.  Somethings just don't work for some people.  

So remember when I said above there is a need for concern?  For me, that's why.  There have been times that I had my pain level get so high that an hour later I took another half I was so desperate for just a little relief.  That would put me at 750 of the acetaminophen.   If I were to need to do that now even two an hour apart in that type of situation would only put me at 625.  If this were to happen in the morning I could still have my second and/or third dose.  In a 24hour period you should not have more than 4000mg so I am in very safe levels.

A big concern for people who take acetaminophen everyday is reading labels.  There are so many other medications (cold and flu) that contain acetaminophen.  Another increased risk is certain individuals who drink alcohol on a regular basis and take acetaminophen.  If you have any concerns there is plenty of information on great medical web sites to answer your questions.  Of course you can always discuss with your doctor also. 

Still waiting on the call from the veterinarian office on answers from LSU.  I'm also waiting on some warm weather.  Oh, have I already mentioned that?  I'll take above 50 for a full week and be thrilled.  Oh yeah, and some sunshine regularly.  Guess I'm trying to play God now.

AJ is doing great.  She had her two week check up and is now up to 9lbs and 14ozs.  
I've skipped physical and occupational therapy for the third week.  I did see my social worker last Thursday because it was a much needed visit.  On my next post I will fill you in on my elbow, my stimulator and handling the fibromyalgia.  I have my 3 month check up with my PM doctor on Monday and I'm actually looking forward to it. 

Until then I hope your days are pain free.  Theresa

For I can do everything with the help of Christ who gives me the strength I need.
Philippians 4:13 

Look at those fingers

This is called grab and snap!

A with AJ