Embracing life with chronic pain.

Posts tagged ‘pain management’

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.

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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!

Work

Here is an interesting question….is “work” a four letter word?  LOL

I can hear so many different responses in my mind…both positive and negative.

My sister and I always blamed our Dad for our work ethic…the fact that we only knew how to give 110 percent or more…every day…that we gave no heed to confining our work day to the typical 8 hours.

We were very proud of learning this vital lesson from our Dad…and, I am sure our brothers would attest to the same.

Having been forced out of the workplace due to my Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/etc., I can now see how that same “ethic” flows into every aspect of my life.  It was also the hardest part of me to learn how to “control”.

My conditions have forced me to no longer approach life like I used to…yes…no longer approaching life “full throttle”!

To go from “full throttle” to barely charged was a HUGE shift in paradigm.  Anyone with chronic health illness(es)/condition(s) and those close to them know this all too well.  It is a major transformation that can, and should, be thought of as a “death” of one’s old self.

There is a grieving period that we go through, while trying to take in all the other changes…EVERY single aspect of our life has been changed.  And, this change typically does not come on gradually, but is like a massive explosion…

I am thankful for all those years that I was able to work…for the friendships that were made during that time.

If you are able to work, I hope that you can take a step back and appreciate it!  Remember that by working, you are providing not only an income stream for yourself and your family… you are building relationships with coworkers, clients, customers, managers, sales reps, etc.

Decisions

Having diagnoses of Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, IBS-D, Pelvic Floor Syndrome and probably undiagnosed Chronic Fatigue Syndrome and Restless Leg Syndrome, pose daily conscious decisions.

I must consider what may be happening on any given day to determine if I should expend the energy to take a shower…or to simply wet my hair in order to save the energy for a ride to town with my hubby and son.

The feeling of my skin dictates what I am able to wear. After all, wearing a long sleeve shirt vs. a short sleeve with loose sweater/sweatshirt, will either further irritate my overly sensitive chest area and/or increase the stabbing and burning in my arms.

The idea of shoes that have to be tied are, for the most part, out of the question.  I must choose slip on sandals or boots. The combination of having to use my fingers to tie and the effort/energy to put on tennis shoes is too much!

There are many other decisions that we must make each and every day in order to manage our symptoms. (Believe me, I am using the word “manage” VERY loosely!)

The even harder decisions are those that we make with our health care provider(s).  Deciding what type or combinations of medications we will use to try to reign in symptoms. We also must continue to monitor how these medications are doing. We must speak up and talk with our health care provider(s) when we need to increase dosages or to let them know that something is not working for us.  We also have to discuss new symptoms and the changes in current symptoms.

With all this “thinking” we are also dealing with the brain fog that disorients us…makes remembering simple things, like brushing our teeth, to important things like taking our medication(s) a challenge on its own!

We must rely upon whatever “tool or tools” work best for each of us.  Some find sticky notes helpful, some use lists….for me, I have a great Fibro App on my phone that tracks my meds, sleep patterns, symptoms…..and I also use a Note App to jot down questions for my doctor.

I also truly appreciate the fact that my hubby does his best to schedule work around my doctor appointments. He asks the questions that I forget…he interjects and comments on his view of the medications…so helpful to me and to my health care providers.

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