Uncovering Chronic Pain

Posted on November 26, 2011 by queenofoptimism

As more days pass with taking 2.5mg of Prednisone, after 9 months of taking 10-15mg, the worse my leg muscles are feeling. This is my reminder for why I took Prednisone is the first place -

I have a myopathy or myelopathy of unknown origin. Prednisone seemed to be the only thing that helped. It gave me the ability to walk. The ability to lift my arms. And, therefore, the ability to work (and keep) a FT job.   Why?? Because it reduces pain from muscle tightness.

Now, I’m back to being crunched up in pain. I thought my docs and I had a solid pain management pain. But then, I screwed up. I’m not

 

sure what happened. But, I know I now wish I would have said, Yes – let’s go a dose higher. Because I am suffering in pain and that’s what my Doc says he doesn’t want me to do – suffer. It’s just so hard to wrap my head around that pain pills and patches are the answer until the cause of my myopathy is uncovered. While I’m not only suffering in physical pain today, I am also suffering emotionally. I feel worthless. I have held my family back from enjoying the Thanksgiving weekend. I am fatigued and in crushing pain that negatively impacts my ability to walk around a crowded house or walk upstairs to use the restroom.

I have one more day off from work and do not see how I can improve enough to walk around the office and think through the fatigue. In the past, these would be the times when I’d up the Prednisone, at least temporarily. That’s not an option I am giving myself. What will happen come Monday?

I have been reading Medical Mojave‘s blog including the post Self Care for Steroid Withdrawal or Adrenal Suppression     There is some great information in the post and related ones.  I’m not sure how applicable some of the suggestions are for me because I do not have an adrenal problem.  However, the post really clicked with me.  No wonder I am using my albuterol inhaler more.  No wonder my skin and scalp are so dry.  Prednisone was wonderful for keeping my asthma and psoriasis/eczema in check.

A message to doctors, other medical professionals, relatives, co-workers, loved ones, neighbors, friends, and people who are frustrated by us:

What do people with chronic pain  really want?

We want to feel in control.  We want to feel strong.  definitely strong.  In our bodies and our minds.

Do you agree?  What do you think people with chronic  pain (illness, disability, etc.) really want?

Many thanks for reading.

Wishing you the best,

-Q

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Prednisone Withdrawal: a description of what you may also expect

Posted on November 24, 2011 by queenofoptimism

Based on the timing of this post (thanksgiving Eve), it would be quite appropriate for me to write graciously. But I’m not. I’m optimisitic but not cheerful.

Instead, I am starting my “What to expect” series for Prednisone Withdrawal.

Why stop the long-term use of Prednisone?
The prompt for me was that I’m still no better, still have no answers, and keep dealing with negative side effects of Prednisone. I’ve been off and on Pred for a couple of years and now solid treatment daily for approximately 9 months. I asked my doc if there were other choices. We talked about other options to help with pain that then help me walk more.

Then two major things happened. 1) my husband told me he is scared every day because I am on Prednisone. He never told me this before. 2) My 45 year-old sister received a diagnosis of MCCune Albright Syndrome due to excessive use of Prednisone, particularly for treatment of her Crohn’s Disease and multiple other problems – some of which are unexplained but not similar to mine.

What happens when you reduce your long-term Prednisone prescription?
Now, I am full swing in decreasing the Prednisone and accepting and living the life of a person labelled with the “chronic pain” diagnosis. I’ve been at 2.5mg Prednisone for over 2 weeks. I take duragesic and break-through medication. My face is puffier and uglier today then it has ever been. My feet have been swollen for 6 days. All through my Prednisone treatment, my doc would check for feet swelling and I never had the problem. Instead, I have it as I go down so low. The swelling is not only ugly but also painful. The top of my foot has swollen over my toes so I can’t lift my toes at all, therefore, I have a hard time walking.

I have been prescribed a “water pill” called Lasix - a potent diuretic (water pill) that is used to eliminate water and salt from the body. In the kidneys, salt (composed of sodium and chloride), water, and other small molecules normally are filtered out of the blood and into the tubules of the kidney.

I am so scared of this medication. I don’t know what I’m scared of but I know I wish I wasn’t on it and wish the swelling was all gone. In addition to swelling, I am finding myself pretty depressed. Whether this is a direct response to Prednisone Withdrawal, I’m not sure. It’s a wait and see right now.

Do you know what else to expect? For how long?

Thanks for reading. Happy happy day.
-Q

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Withdrawals from Prednisone

Posted on November 21, 2011 by queenofoptimism

Can withdrawing from Prednisone cause swelling in my feet?

I’m wondering because the swelling has worsened and is equal bilaterally. Without my cane, I’m not sure how I would have gotten around today. The swelling means I can’t move my toes or ankle so I can’t walk heel to toe. I was pretty shocked by the tightness in my right calve – it was equal to what I experience at my worst with my left leg.

What to do?

Left a desperate message with Dr. PCP front desk (they are so kind) and got a call back at 8:10pm. PCP believes it’s Prednisone withdrawal and that I need BLANK Rx. I forget though it sounds familiar from a previous conversation.

Reading about tapering from Prednisone is scary. Totally freaking me out. Hoping to learn more. Hoping the swelling stops. Hoping the Rx is a magic one. Hoping nothing else freaky happens with my body. At least for now. For now.

I think I’d feel slightly better if I could find a web article describing what I’m going through. …no such luck.

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At this moment

Posted on November 19, 2011 by queenofoptimism

I’m in my dark, quiet room reflecting on how much love I feel.

My son is an amazing little guy who likes so many things and so many people. I can’t squeeze and hug him enough.

My husband supports me and I can’t get enough affection. Our life is not easy but loving each other comes easily.

My dog is never stingy with her love and affection. She’s a cavalier king charles spaniel who lets all of us know we’re loved.

Sending you wishes for pleasant dreams,
-Q

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Swell

Posted on November 19, 2011 by queenofoptimism

I didn’t notice until I was removing my tights – swelling of my right foot and some swelling in my left foot.

What happened? It’s mildly painful and I can’t move my right toes. It has not gotten any better today – it’s slightly worse. There is some redness and bluish like coloring. I didn’t fall. I dont remember twisting my ankle and I have not been overdoing it. But I think any one other than me would have a hard time believing that it is not an injury or the result of stress.

My hopes are not high but perhaps a treatable cause will be identified.

My hopes also include a reduction in this fatigue. Yikes! I fall asleep any time- I can’t stop it.

Best
-Q

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Make it stop

Posted on November 15, 2011 by queenofoptimism

I attempt to relax in bed and do something: blog, work read, write a note, watch tv, meditate, work on my blog, read some of my favorite blogs.

But each night this week, I fall asleep instead. So, here I go again. Feeling guilty I have a lovable clean bed while many other people of this world sleep in les than well conditions.

In Monroe, we could do so much but I’m too dptired. I’m still thinking about what I can do for en easy win. Change management – .

“she tried to take her life.”
I’m stunned but not really because I know she gets sad, I just didn’t know she could be so deliberate about it.

The workplace and my family of origin need me.

I’ll give as much as I can ang hang in until the next weekend day when I have off

I’m hoping for good next few dys and hoping to get over this period of sad for so manny. It’s all done. It will b ok. As long as I can stay awake.

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Barriers to Blogging Everyday

Posted on November 13, 2011 by queenofoptimism

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Chronic Pain as a Diagnosis

Posted on November 9, 2011 by queenofoptimism

Until today, I would arrive at every specialist’s office specially prepared.

I’d bring a color-coded pocket folder full of reports in chronological order.  A few CDs of CT, MRI or Xray images.  Not today.

Today, I was late for the appointment and forgot my pre-mailed paperwork.  As i sat filling out the paperwork, I felt it.  A pessimism.   A disappointment for all the previous appointments.  The fear of being passed off or worse – accused of being something less than the forthcoming, ill person I am.

I had no reason to be especially upset with this doc.  Dr. PCP recommended him.  but as I told the nurse practitioner my history, my story – there was a clear lack of energy from me.  It’s been so long since I went over my history that I was telling things out of order.  I forgot major pieces of my medical history.  I expected that the Doc would treat me badly  – in one way or another.  Especially because the NP kept asking – so you’re not under the care of a neurologist right now?

So I met him.  Mr. Pain Doc.  Nice smile.  “Queen, I’m glad you’re here.  You’re quite an enigma.”  Me: “Yes, unfortunately.  But I try really heard.  I work really hard.  No one seems to think they can help me – besides Dr. PCP.   I just want to feel well enough to work.  Enjoy myself from time to time.  Walk.  I also want to reduce Prednisone as much as possible if not completely.  I don’t know why it is helping my pain.  If something else can in its place, I welcome it.”

Mr. Pain Doc:  “We don’t diagnose various diseases here.  You clearly have a neurological process that is causing a myopathy and chronic pain.  If it’s eventually MS or something else related to the Upper Motor Neuron, we don’t know.  But why are we going to have you suffer until will find out?  You have important  things to do in your life.  Chronic Pain is a medical problem that needs to be treated.  The good news is we can treat it.  You’re doing great with medication that has very few side effects compared with Prednisone.  Let’s see what we can do.”

After a nice discussion, Pain Doc shared that he felt my current direction with using a low dose narcotic pain patch was a good direction.  “You need to change your thinking.  You are suffering from chronic pain and we can treat that.here is a cause for the pain but we just don’t know the exact reason yet.  For now, you are  a person with real, chronic pain.”

In the end, Pain Doc suggested that I increase the dosage and that I do use a medication for breakthrough pain.  I was trying really hard to avoid the breakthrough meds.  I’m starting to realize that it doesn’t make sense.  When my body is feeling the full effects of the chronic pain, I am crunched up.  My arms are across my chest.  I have more trouble walking. I move less.   I engage less.  I suffer.

This is an important part of my acceptance of having a chronic illness / disability.  I need to erase everything I’ve thought about pain medication (for acute use and abuse) and begin understanding the realities of chronic pain.  I am hopeful that I can begin to develop a great er acceptance.  I am confident that this new Doc, who is supportive, can help me develop the comfort level I need to improve my relationship with my husband.  I no longer feel as though I’m not doing enough to “get better”.  I’m working on a serious problem and it’s something that can be treated.  I need to commit to treating it.  This means no more cutting pills into quarters because I am afraid to take the full dose prescribed by my doctor.

This is a lot to think about.  for now, I will hold my husband’s hand as I go to sleep.  I’m suffering through pain without breakthrough medication – 10 minutes after I dropped of my prescriptions, the electrical power went out at my Pharmacy – the whole block actually.  So, i will continue to look forward to proper management of one of my illnesses, Chronic Pain.

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Make this world a better place, if you can

Posted on November 8, 2011 by queenofoptimism

 I’ve grown somewhat comfortable with being alone  during times when others would be crowded with support. I go to most doctor’s appointments alone.  There are few people I talk to about the content of appointments.  Few people who are interested. 

I suppose that’s one of many reasons that I blog about all of this.

Being alone does not always equal loneliness.  But I do become lonely when I want someone to talk to about whatever challenge I’m facing or joy I am celebrating.  Loneliness is especially frequent for me as it relates to living with an undiagnosed disease and  disabilities.  When there are few people who get it and few people trying to get it, it seems that the natural path is some degree of loneliness.

So, last week, I asked myself this question:  “What can I do to turn down the noise in my mind and maintain joyful thoughts and a positive outlook?”

I found the answer – Listen.  Accept help.  And believe that the kind help you receive will have a positive impact.

I thought the timing of  finding this answer was too late to impact a complicated matter at

No doubt - you can make the world a better place - it's in your hands. It's your choice.

work.  I was wrong.  I don’t yet have the right words to describe what someone did for me.  She decided she wanted to help me through a tough situation by confronting some tough subjects and people who are tough to deal with.  She did it.  She stuck out her neck for me.  For my benefit.  I know it wasn’t easy for her to go through – this was a majorly challenging situation.  But she did it and it is helping me more than I can properly express.  What did I do to deserve such kindness and sacrifice?

And then there is this blog.  Something I started nearly 4 years ago as one small way for me to find peace during a challenging time.  As I join the blog-each-day challenges, I am being reached by more and more people.  People who have been following my story for years.  Others who are new to me and desperately want to help.  I have friends from this blog who I truly care about and reach out to because I want them to be doing better than last time we connected.  I want them to know I am thinking of them.  This contact makes me feel less lonely.  Perhaps it makes me feel abundant – full of people who get it and who are there when I need them.  Hopefully I can be there when they need me.

I can’t help but think this recent series of people reaching out to me is somehow related to my father.  My father is quite ill.  I took for granted that he’s the one person I go to regularly to ask for candid advice.  he’s always been a great advice giver – very realistic in how to deal with difficult situations.  Recently, he told me that the difficult situations I was experiencing just weren’t that difficult.

That if I looked for peace in my life (and enjoyed some ice cream) everything would be okay.  A good place to start was looking for peaceful times with my family, including going out for inc cream

I’ve been working on the peace and sadly have not been for ice cream – but will!

I will continue reflecting on my inner peace.  I will continue reflecting on ways I can let others know how grateful I am for adding to my joy and peace of mind.

Are you in a place where you can reflect on the joys and inner peace in your life?

I hope so.

Best,

-Q

Filed under: Health, Hopes and Dreams, In search of happiness, NaBloPoMo, NHBPM | Tagged: , , , , | 1 Comment »

Can I find a Cure?

Posted on November 7, 2011 by queenofoptimism

Some recent reader comments  have been making me think deeply about a subject of health I tend to avoid.

Anything that deviates from the traditional.

So. Queen, how are traditional medical approaches working for you?

The answer is not too well – other than some progress I have recently made in managing pain with what seems to be a conservative pharmaceutical approach.
I think it is time to thoroughly evaluate and try some or at least one of the following ideas.  I welcome your input.

  • Anti-inflammatory diet
  • Monitoring pH levels (suggested by Kyle)
  • Convergence Medicine at the Anatara Group with Dr. Ahvie
  • Biomarkers
  • Natural thyroid recovery
  • Doctors who cure chronic problems

Use the poll below to share your input and perhaps your responses will help me take the leap into trying something new.  Thanks for caring enough to respond!  PS I welcome any and all suggestions not listed here.  Thanks!

Filed under: Health, NaBloPoMo, NHBPM, Physical Health | Tagged: , , , | 1 Comment »

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