Embracing life with chronic pain and illnesses.

Posts tagged ‘pain management’

Hope

It feels like an eternity since I have written a health update!

Again, I must express my gratitude for my pain pump!  It is the reason that my Pain Specialist has been able to determine that I have Sciatica (both left and right side)…. Sacroiliac (right side)…and now Piriformis Syndrome.

A week from Monday, I will receive another injection to calm the Piriformis.  We are working towards improved function of my right leg.  I am sure many of you have dealt with the Sciatic nerve(s) acting up: burning, numbness, tingling, throbbing, stabbing, muscle spasms, etc.  My right leg from buttock to the tip of my big toe has been experiencing these symptoms along with being unresponsive at times –foot will drag or leg will not move when I tell it to.

The issues with my right leg have been a big problem for years now.  I had come to accept this as just one more thing to learn to live with…yet now more layers to my medical conditions have been uncovered.  There should actually be improvement to movement!

Backwards

Chronic conditions take such a toll…stretching us to our breaking point…like a tennis ball on an elastic cord…we are tossed about without rhyme or reason.

We are bombarded by new or worsening symptoms…as we start a medication, deal with interactions between medications, struggle with adjustments to our prescription(s).

Add new diagnoses that further complicate our all ready complex situations…we truly push our medical teams…as they are thrust into the unknown.

The inevitable “Flares” that strike…some we know are coming due to choices we make (like going out to lunch with a friend…attending Parent Night to meet our son’s teachers…a simple short ride in the rig)…others strike for no apparent reason…forcing us to cancel plans…to retreat to the safety of our homes.

It is no wonder that we often feel that we are going backwards…despite our best efforts.

Yet I caught a glimpse of something precious when I paused with my eyes closed…in that short time, I took time to review the past few weeks…months…and saw progress!

I am speaking of those little changes…sitting through a rented movie –actually being able to focus and watch it…no recent falls…sleeping in a four hour block at night.

Take heart! Even when we feel like we are going backwards rather than forwards, we are progressing.

Symptoms — Just Try to Explain

As I attempt to write my thoughts, I am overwhelmed with the myriad of symptoms my mind and body are experiencing! The shooting pain in my legs*, the burning and stabbing in my thighs*, the burning and stabbing in my back*, the ice picks stabbing my feet, the stabbing and searing in my arms/wrists/hands/fingers, the burning and deep aching in my right arm, the burning and pressure in my hips*, heavy brain fog (or Fibro Fog) are the primary symptoms that come to mind…to distract and scatter my thoughts further from each other. (*Exaggerated on the right side.)

For those of us with chronic illnesses/conditions, our brains can stall out while we trying to express what our body is going through when asked this “routine” question by our doctor.  (Using doctor visit as example because that is the one place that we do our best to be as completely honest and open as possible! If you are like me, you do your best to hide the truth from those around you.)

The answer to this “routine” question is further complicated by the combination of our illnesses/conditions and the medication(s) we are taking. I looked up the most common (10 or fewer) symptoms of the following for quick reference:

Fibromyalgia: Pain, Sensitivity to Touch, Environmental Sensitivity, Muscle and Joint Stiffness, Muscle Spasms, Exhaustion, Trouble Concentrating (Fibro Fog), Chronic Headaches, Bowel Troubles, Depression (http://www.fibrotoday.com/10-common-symptoms-fibromyalgia10/)

Polyarthralgia: Pain, Joint Tenderness, Stiffness, Redness, Fatigue, Tingling or Unusual Sensations, Burning Sensation at Joints (http://www.healthline.com/health/polyarthralgia#overview1)

Neuralgia: Severe Pain, Burning, Stabbing — usually due to an irritated or damaged nerve, so it is localized (http://www.healthline.com/health/neuralgia#overview1)

IBS (Irritable Bowel Syndrome): Abdominal Pain and Cramping, Diarrhea, Constipation, Alternating Diarrhea and Constipation, Changes in Bowel Movement, Gas and Bloating, Food Intolerance, Fatigue and Difficulty Sleeping, Anxiety and Depression (http://www.healthline.com/nutrition/9-signs-and-symptoms-of-ibs)

I then looked up the 10 most common side effects of medications that I have used. (My experience is limited due to the extreme hypersensitivity of my system.)

Cymbalta: Nausea, Dry Mouth, Constipation, Fatigue, Tired Feeling, Drowsiness, Difficulty Sleeping, Loss of Appetite, Dizziness (http://www.healthline.com/nutrition/9-signs-and-symptoms-of-ibs)

Nucynta: Nausea, Constipation, Fatigue, Dizziness, Drowsiness, Itching, Runny or Stuffy Nose, Increased Sweating, Dry Mouth, Sleepiness (http://www.rxlist.com/nucynta-side-effects-drug-center.htm)

These abbreviated lists demonstrate our conundrum. Our illness/conditions have a huge laundry list of potential symptoms a number of which overlap, each of us is unique in how they manifest –from minor inconvenience to full-fledged disability. Making it all the more confusing for all those we interact with.

Our conditions are complex (we have multiple illnesses/conditions)…the medications prescribed for us add another level of complexity as the side effects can further exacerbate our conditions while providing some level of relief. So please do not take my long pause prior to answering out of context, I must temporarily “check out” to conduct an inventory list….that will be promptly jumbled by my “Fibro Fog”…and result in a bleak attempt to put into words the way I feel.

Breathtaking 

It Is On! – Pain Pump Trial

For anyone following or reading my past blogs, you know the tremendous disappointment that I have been through in trying to get a pain pump trial approved. Thanks to a very dedicated pain specialist and his staff, I will finally have this opportunity!

This coming Tuesday, April 25, I will have the pain pump trial! My pain specialist will inject the medication he has selected into my spine to see if it will help! The good news is that I have been told that I will know right away if it will make a difference or not.

Prep is the usual request…no eating or drinking after midnight the night before. I will be allowed to take one of my pain meds in the morning to ease my discomfort for the trip as we will have to travel about an hour to the location of the procedure.

Once the injection is done, we will remain for about 3-4 hours for observation. Then I will be released to come home, where I am to have someone with me for the next 24 hours.

I have been told that the injection can last from a few hours to a couple of days. Of course, each person reacts differently. Again, I am excited that it should be easy to tell if it is going to work or not.

So far my body has cooperated…I have not had any infections, no head colds…any of which would have forced us to reschedule.

I will write more about the procedure and its results next week!

Psychological Review and Pain Pump

I received the written report from the Clinical Psychologist I had seen. She did such a great job in summarizing and clearly demonstrating the impact my conditions. She also officially provided another important diagnosis…I have been diagnosed with Somatic Symptom Disorder with predominant pain, persistent, severe. This is a huge step in moving forward with the pain pump trial!

I was able to forward a copy of the report via fax to my advocate who has all ready submitted it to Social Security Disability. My pain specialist has all ready submitted to insurance with the request to authorize the trial. Most importantly, it has been approved!!! By Tuesday of next week, I should have all the final instructions…the procedure is penciled in for Thursday, February 24.

I am excited to again be on track! This will be a huge step…to see if a pain pump will be an option for me.

If you find yourself in the position of having psychological testing, remember that you do not have to take the long test on the computer. Those of us dealing with conditions that affect the use of our hands would benefit greatly from the “written” test. Be sure to stand up for yourself! I don’t want anyone else to go through the five day flare that the computer testing caused me. (I did advise my doctor of this; and, she was going to review with staff that there is an alternate format for the long test.)

Opioid Effects

We have all seen the commercials on TV…those commercials for medication to combat opioid induced constipation. We know that opioids as well as any type of medication (prescription or over the counter)…even the simple Tylenol can cause constipation.

My system is extremely sensitive…which has really limited what medications I can take. I have also had to modify my diet to a Low FODMAPs diet for my IBS-D.

My husband and I had been very hopeful for the opioid that I could tolerate. After all, it is helping me to get some sleep and helps take the edge off my pain. I have been eating dried prunes (they are not Low FODMAPs but I have determined what I can safely get away with), sipping warm water, and occasionally using Milk of Magnesia.

For the first few months, this was working great! Yet now, I am faced with the reality that my body is “on to me”. My husband noticed my swollen belly…around my stoma. Yes…the worry that had been at the back of my mind…is making itself blatantly apparent!

I will have to revert to what my surgeon had me do when I was recovering after my colostomy…I will start taking one tablespoon of Milk of Magnesia every day…along with as much fruit as my system will tolerate…in hopes that my system will respond so that I can continue taking the opioids.

Thankfully, my pain specialist and the maker of the pain pump are working with my new insurance to get the pain pump trial underway. My underlying hope is that I will have a successful trial and be able to go that route…forfeiting the opioids all together….only time will tell!

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