Opioids Induced...

Opiod induced hyperalgesia:
Pain that you would not normally feel such as painful bowel movements or painful esophagus when drinking something cold. I asked my primary care physician about this pain and she called it hyperalgesia. She didn't tell me it was a side effect from Oxycotin.  When it got to the point that I was doubled over with abdominal pain within a half hour of taking Oxycotin, I realized that it was a side effect from the Oxycotin. I don't take that anymore. I do take oxycodone though without as much hyperalgesia.  I have to take the Oxycodone twice per day though but it provides the relief I need.

Opioid induced constipation:
Well we all know what this is about, right? I'm just glad there are effective medicines out there to take care of this. I take a combination of Linzess, OTC Correctal, and Relistor (see next paragraph) two to three times per week for this.

One medicine that helps with both hyperalgesia and constipation is Relistor. It may not be prescribed as much for chronic pain patients as it was marketed for cancer patients and is not known to be effective for constipation for longer than three months. I found that it helps for hyperalgesia more than constipation now that I've been on it a while. I use the injectables because they act faster than pill. That's important for me due to my slow digestion issues.

This subject is just another note in my constant struggle to have somewhat of a productive life. Those struggling with chronic pain will relate. I hope this information is helpful.

Becoming dependant

Early in my life I learned that I could not rely on anyone to be there for me. I spent most of my adult life proving to myself that I was independent and could conquer anything I set my mind to.

I still felt this way when I married my current husband. For the first few years of our marriage I had a career and I was an adjunct professor at a local university. I felt like I had it all: a husband, family, career.

As my pain slowly took over I denied that I was losing control. I continued doing everything through the pain. Until my body finally won the battle and I gave in to the pain. I left my work. I left teaching. I even left being a mother and a wife in spirit. I slowly went into a black hole (mentally) and I just dealt with the pain. As time went on, I became more dependant on my husband to be there for me; to help me get through the pain; to help me get things done around the house; to help me get out to see people and do the few things I can still do.

He did it again this week. He took me out of town to my cousins funeral. She was 41 and had a husband and four children that she left behind. She died from complications caused by cancer treatment. This has been a very sad time for me and for all who knew her. I wouldn't have been able to go or handle it if he weren't with me.

As I write this blog post, I realize how privileged I am to have a wonderful husband who cares enough about me to take me to the important things in life so that I don't miss out. He puts up with a lot and my illness has caused him to miss out on a lot. I think what he misses most is not being able to take off and go fishing like he used to. I try to encourage that he do so but his spirit has taken a blow too and he just doesn't have the interest he used to.

But, all in all, we have been humbled and we have each other. We appreciate each other. And although in my younger years I vowed to never depend on a man, I'm so glad I have this man to depend on.

I love you D ❤

Bells Palsy/Trigeminal Neuralgia

I went to an event a week ago and that evening I was quickly and violently brought back into a Trigeminal Neuralgia episode. The muscles on the right side of my face quivvered, the nerves throughout that side of my face sent debilitating shock waves. I realized it was because I did my best to smile and converse with people for several hours. I drugged myself Lorazepam, Lyrica, and Oxycodone. Things finally calmed down.

Since then my facial muscles are in a Bells Palsy mode, my eye on that side feels dry and sticky, and my face has continuing nerve pain when it's touched. I believe that pain is called allydonia.

This got me thinking about my atypical facial pain diagnosis and looking up information on Bells Palsy.

I believe now that I have Bells Palsy with Trigeminal Neuralgia initiated by facial trauma that happened in two phases. First, when I initially had a root canal and the tooth root was broken delivering the bleach solution into my facial tissue causing extensive facial swelling and pain. Second, when that tooth had the second root canal and my mouth was opened too wide for a prolonged period of time damaging the Trigeminal nerve and facial muscles. Had I known that would happen, I would have had the tooth pulled instead of trying to keep it.  I wish I could go back in time and change that decision. I eventually had that tooth pulled to see if it would help but the damage had already been done.

I guess I need to go back to one of my chiropractors that worked on my face to get it to calm down. Once it's calmed down I may try some facial retraining exercises given to Bells Palsy patients to see if I can try to strengthen my facial muscles slowly so I'm not slammed with another episode from trying to smile and enjoy some company.

Thoracic Spine Treatment

We moved to a new house in January. The packing, carrying boxes, etc.  have me in screaming pain from my middle back and I have been on around the clock narcotics. Last week I went to Dr. Bottros, pain management and got an injection. I told him I needed more permanent relief. The next step is nerve ablation for the nerves that are trapped between the vertebrae where my disc has eroded. The ablation went very well with my knee so I'm somewhat hopeful that this may provide some relief for my back. I'm supposed to call him when my steroid injections where's off.

Polymyalgia Rhuematica

I saw a Rhuematologist a couple of weeks ago and she mentioned that I might have Polymyalgia Rhuematica. I looked it up and  it makes sense. I have all the symptoms including giant cell arthritis. Steroid treatment is the only route. I've been on prednisone and am feeling much better. I'll write more about it later. I'm kinda tired right now.

Update:
I couldn't tolerate the prednisone. It made me a psychotic. I'm on piroxicam now. It's not as effective for pain as prednisone but better than nothing.

Updates for Review with my PCP 081815

Dr. Sommerville neuro/muscular research doesnt believe in FM, deconditioning cause of weakness.

Dr. Bottros, right knee nerve block, ablasion, I mentioned my middle back pain being out of control. He prescribed core physical therapy because I asked for spinal cord stimulator, wants me to try naltrexone 4.5mg again.

Barnes St. Peters Physical therapy prescribed by Dr. Bottros. Identified extreme weakness right side, poor balance/stability. Cannot do exercizes that require laying down due to increased heart rate/headache. They are requesting continued therapy.

Dr. Weinstock, SIBO positive, antibiotics did not improve any symptoms, gastroperisis Cisapride fda protocol to replace Domperidone, had blood work and endoscopy done, pelvic floor dysfunction evaluation, wants me to try naltrexone 4.5mg then maybe linzess for IBS with constipation after off of narcotics for a while.

Off of amitriptyline because it conflicts with cissipride. I cannot get to sleep or stay asleep. Up and down all night.

If naltrexone doesnt help after two months, I'd like to return to oxycodone up to twice per day or longer term oxycotin.

Dr. Lavign, new chiropractor, practices neurologic relief manipulation, helping with heat flashes and better alignment, decreased muscle spasms but damage is done and now I have trigger points inside and outside of left hip. Too painful to sleep. Last bursitis injections were only moderately helpful.

Back and neck are breaking out, trying progesterone cream with phytoestrogens to see if caused by continued lowering hormones.

Exercise: A Catch 22

I saw my neuromuscular doctor this week and told him my concern about increasing weakness, peripheral nerve pain, and dropping things. He told me the following:

• You know, Fibromyalgia is a "wastebasket" diagnosis.
• You have all the symptoms of small fiber neuropathy but since your tests were negative for that and everything else I checked last year, I don't know what to tell you. 
• You are not getting weaker, you're just fatigued from lack of exercise. 
• You are deconditioned and need to exercise. 
• Dropping things is the most non symptom symptom I hear about on a regular basis. It doesn't mean anything.

So I left there very discouraged. He does think of me as an interesting puzzle and wants to keep track of me so I'll go back in nine months to hear all of his non belief rhetoric again.

I believe that in addition to the fibromyalgia and myofacial pain syndrome I may also be in the early stages of Parkinson's or some type of myositis. I'm also probably about five years out from one of those diagnosis. So I'll keep seeing this guy every 9 months or so until he doesn't want to see me any more or until he diagnoses me.

In the mean time, I'm going to see a doctor who specializes in integrative women's care. He concentrates on hormone levels, thyroid levels, systemic inflammatory conditions, etc.  His practice also offers acupuncture, massage, natural hormone replacement, and supplements based on actual personal needs.

I need to mention that this is not covered by insurance so it will cost me to do this but I feel that traditional medicine has failed me and this is my last chance at feeling better.

Now, back to the exercise thing. ANY exertion causes me extreme widespread pain. Weakness causes pain. I can't feel better until I get more conditioned but the process of getting conditioned will kill me. Ugh.  There's my catch 22. I'm going to try going to our community fitness center and take a senior fitness class and see if I can handle it. I'll try walking (other than walking the dogs). I hope I can handle it. I'll keep you posted.