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 Skinnytaste.com 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)
Theresa

Fibromyalgia - a controversial silent disease

I will apologize right away for the length of this blog.  I've been coming back to the draft for days trying to cut out things but everything is important to "me".

Since my post in September where I open myself to ridicule of telling how saddened I am to have it confirmed I have Fibromyalgia(FM) I've done a lot of research. More intense research than when he first starting talking to me about it years ago.  Then, I was reading all medical sites like WebMD, The MayoClinic, Wikipedia and Ask.com.  There were more but these are the ones you would recognize.  Since September I've been on a different search.  Reading from patients mouths, hearts and minds.

Never in all my years of dealing with my numerous aches and pains; back, muscles and joints have I felt so vindicated by strangers. Every blog or article I read was exactly how I've felt and feel. FM patients are good at hiding their pain for fear of ridicule. As I mentioned over a year ago even a doctor I worked for thought FM patients are just crazy and that's the title the doctor gives them because they can't find anything else to diagnose.  That is so far from the truth.  Our pain is real.

You don't walk into your rheumatologists office and have them diagnose you with FM in one visit or even one year. I write this post to share with you a few bits and pieces that were important to me.  Important because it validates everything I have tried to understand over the past years.  Why do I hurt everywhere?  Why am I so tired all the time?  Why can't I sleep? Why is it so much worse when I first get up in the morning?  All this time I've been looking to my doctors for answers when others who feel just like me had all the answers.

I remember searching to see if someone with a Spinal cord Stimulator had a blog. I found a few.  Reading them inspired me to write, even if no one read.  It made me fill like I would get things off my chest.  Now I am searching through so many more Fibromyalgia blogs than I ever thought I'd see.  I believe I read 1 in 20 people have FM.  Every definition down to the detail is how I am feeling and felt for a long time.  To some, it would have made them more depressed. For me it has been encouraging.  This blog world is my support.  Not to say my family and friends are not, but your still tend to doubt even if the people you love understand.  

I can be fine one day and another I can do something that is simple for most people.  After I am done I really to tired to do anything else.  My husband struggles with this.  When I say I am so tired he wants to know why?    

One thing I read in common was how no matter how much pain or how bad of a day a blogger was having they made their self exercise if they could possibly do it. I've read walking and swimming are two of the best exercises for FM.  A plus since they are great for my back also.  The problem is I'm doing very little walking these days but not because I don't want to.  For some reason when I'm hurting I can tolerate my recumbent bike much better.  If I stop moving I will become so stiff the end result will be bad.  

Exercise is very important for anyone, but especially if your dealing with chronic pain.  Chronic pain = depression + FM = depression + exercise = accomplishment. On the other side of that coin I'm learning to say no, to go lay down if I need to and not let the undone things bother me so much. 

At my OT appointment on Tuesday the PT did some dry needling for me on my triceps and the muscle where it meets the tendon near elbow.  It wasn't that bad compared to procedures I've been through previously.  It was by no means comfortable though.  It's to soon to tell how much it has helped.  The swelling is down to an inch now so that is definite improvement.  I go back Friday and she will re evaluate everything and write my notes for my rheumatologist on our progress.  I can't help but wonder if the FM has exacerbated the whole experience.  

Below are some pieces I mentioned in the beginning.  If you have FM you know all about it.  If you don't, you may know someone who does and it will help you have a better understanding what their day to day life is like.  I think we all want empathy not sympathy. 

From Scope- an award winning medical blog


I can’t imagine anyone relishing the idea of being tired, in pain, or suffering from “brain fog” for one day, let alone for months or years. If you have fibromyalgia, this is what you experience on a regular basis. Yet there are people who believe that fibromyalgia doesn’t exist – that it’s a made-up disease with the purpose of appeasing patients, giving their complaints a name.

Incidences of muscle pains characteristic of modern-day fibromyalgia have been documented for centuries, but only in the 1970s did the disease begin receiving serious attention as physicians began to better identify trigger points, inflammation, and fibromyalgia-associated issues such as sleep disorders and irritable bowel. And only in 1987 did the American Medical Association recognize fibromyalgia as “an emerging condition.” But saying it’s a disease and convincing non-believers are two different things.

I’ve been asked what it’s like to have fibromyalgia and, just as it’s difficult to diagnose, it’s difficult to explain. Although I was only diagnosed a few years ago, I can trace the symptoms to my teens. I often experienced unexplained bouts of exhaustion and pain. I never slept well. I had other fibromyalgia-related physical issues, but no one could figure out what was wrong. After a while, I began to believe that it was all in my head. I knew I felt the pain, but there was no explanation. I knew I was exhausted, but everyone is tired – why would I be any different? The other symptoms? I was overplaying them, complaining too much, imagining them, looking for attention, wasn’t I?

My family and close friends were (and still are) wonderful. They never made me believe that I shouldn’t be feeling what I was experiencing. They tolerated my quirks, such as the hypersensitivity that results in a very strong startle reflex and not being able to stand the feel of certain things against my skin. (It wouldn’t surprise me if the princess in fairy tale The Princess and the Pea had fibromyalgia!) My husband, my children, my friends, all helped me when the pain was bad and the exhaustion overwhelming. But feeling so different and not knowing why take a toll on a person.

I did what many with fibromyalgia do. I withdrew into myself. By withdrawing, you minimize your chances of being criticized or attacked by those who don’t understand your “nonexistent” illness. But at the same time, because you are internalizing everything, your symptoms become worse. Your mind plays more games. And the cycle continues.


I cried when my rheumatologist told me I had fibromyalgia. I told him I wasn’t crying because I had it, I was crying because I finally had validation – that this was real. My pain was real. My illness was real. He told me that many patients react the same way. How sad.

A year ago, I began a project called 101 Questions About Fibromyalgia. I asked friends and colleagues for questions, either from the point of view of having fibromyalgia or loving someone who does. I received some great questions but I also received a long e-mail from an editor whom I had never met. Her angry e-mail outlined exactly why fibromyalgia doesn’t exist, point for point, but she also told me that if having a name for my illness made me feel better about myself, then it was OK with her.

This is why many people with fibromyalgia don’t speak out. There is no such anger against people who say they have diabetes or cancer or Crohn’s disease – but it’s acceptable to brush off, deny, or criticize a claim that you have fibromyalgia.

Living with any invisible illness can be difficult. Living with one that still is not accepted by many is so much harder.

Marijke Vroomen Durning, RN, is a health writer based in Montreal, Canada. She is a contributor at Forbes.com, HealthDay News, and other outlets. Find her on Twitter @MarijkeD.


Fibromyalgia is a common syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, sleep problems, headaches, depression, and anxiety. (National Library of Medicine)

COPING:

Fibromyalgia is a persistent condition for which there is no cure. It is common for symptoms of fibromyalgia to wax and wane; they may be more severe at certain times of the day, month, or year and they may remit for an extended period of time only to reappear later either for no apparent reason or following a traumatic event such as an automobile accident. But there are ways of coping with fibromyalgia symptoms and preventing exacerbation of pain. Here are some tips:

• Prioritize sleep – it is important for people with fibromyalgia to maintain a regular sleep schedule and to get treatment for sleep disorders if necessary.
• Create a quiet environment –chronic pain has been known to intensify in the presence of sound stress.
• Exercise – regular exercise is known to improve symptoms in some patients. For people with fibromyalgia, low-impact activities such as walking, yoga or swimming are the best choice.
• Medication – work with a physician to develop an effective medication regime.
• Massage – gentle massage, deep breathing, and relaxation techniques are all generally considered beneficial with respect to chronic pain management.

SYMPTOMS:

Fibromyalgia usually includes a broad range of symptoms including some combination of the following:

• widespread pain
• sleep disturbances
• chronic daytime fatigue
• morning stiffness in the joints and muscles
• migraine headaches
• irritable bowel syndrome
• painful menstrual periods
• numbness or tingling of the extremities
• restless legs syndrome
• temperature sensitivity
• dizziness and balance problems
• cognitive and memory problems
• mood disturbance such as depression and anxiety

Out of these 13 symptoms I have experienced 10 of them.  2 were in the past and much better but I still wonder? (irritable bowel syndrome and painful menstrual periods) The others are just like the COPING definition.  As bad as I hated having Dr. C tell me this news it feels good to understand what is happening to my body.  A lot of these symptoms I have never shared fearing people will just think I'm crazy.   Temperature sensitivity...oh I definitely deal with that.  Off the scale.  Ask my husband or my daughter.  The last one has been chronic for some time now,(especially the anxiety), but I've convinced myself it was due to my back pain.  My doctors agree, except for Dr. C.  My pain management doctor is the one who had me try two different medications that are commonly used for patients with FM. (Cymbalta and Savalla) Unfortunately neither worked. He never used the title he was just responding to my complaints of hurting everywhere.  

When Marijke spoke of not being able to stand certain things against her skin I almost jumped out of mine.  I never discuss that with anyone.  My husband has heard it a lot but even he gives me the strangest looks.  There are times that I can't be in the same bed with him because he has PLM and if his leg is moving I'm so sensitive to it I have to move!

The last I'd like to say, you know I mean for today, is that my mom has Fibromyalgia and Restless Leg Syndrome. The National Sleep foundation has written that there may be an association between FM and RLS. It's most common (RLS) in patients with FM and those with Rheumatoid Arthritis and she has both.  So what am I crying about?  The NSF also states that FM seems to run in the family though not knowing if genetic or environmental.  I have and continue to pray for both of my children that they don't start experiencing symptoms.  One of the hardest things of dealing with it is getting answers.  

To my friends and family, thank you for putting up with me.  I know you often wonder why I back out or just don't feel like it so many times. Your no need to know attitude has carried me far.
I have the greatest husband any one could ask for.  Even he struggles to live with the depression and anxiety with me.  You see I'm really good at acting.  When I do go out, I fall apart when I come home and he catches me every time.  

Lots of genuine hugs and H.O.P.E. to everyone dealing with this invisible illness.  Theresa


HOPE looks for the good in people instead of harping on the worst in them.

HOPE opens doors where despair closes them.

HOPE discovers what can be done instead of grumbling about what cannot be done.

HOPE "lights a candle" instead of "cursing the darkness"

HOPE regards problems, small or large, as opportunities.

HOPE cherishes no illusions, nor does it yield to cynicism.

Author unknown