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.

PC3 Positional cervical spinal cord abutment

I've been watching videos from "offerutah" on YouTube. They are an advocacy group for fibromyalgia and chronic fatigue syndrome. There is a lot of good information on the videos by doctors who have been specializing in this area. A couple of the videos discuss positional spinal cord abutment. This is a situation where discs or other spinal components bump your spinal cord as you move your neck around. When your spinal cord is touched, it sends a message to your brain stem which sets off your fight or flight response. This raises blood pressure and temperature and causes severe flushing of entire body. It's very uncomfortable and heightens your pain.

This is what I have been experiencing since my neck injury while getting a root canal on December 29, 2011. This did not show on an MRI or CT Scan because those tests have you lay in a stable position and nothing is wrong when your neck is perfectly aligned.

The video I watched from Offerutah discussed a functional MRI where your head is flexed and extended so they can see this abutment. The doctor on the video, Dr. Andrew Holman, said that this abutment diagnosis can only be fixed with surgery.

There is one MRI in the St. Louis area that has this flex/extension capability. I'm working on getting an appointment to verify that I have this condition.  Then, if I can get this one thing fixed, then I'll know what's left to deal with.

Absent of this diagnosis, this doctor advocates using Mirapex for pain that is set off by autonomic nervous system disregulation. He says that this medication was beneficial if the patient does not have spinal cord abutment or sleep apnea.

I am not the expert here but his discussions make a lot of sense. If you think any of these issues apply to you, watch his two videos. The first is "Fibromyalgia: A Unifying Theory".  The second is "Treatment Pearls: Fibromyalgia".

Myofasial Pain Syndrome

I've been doing some research on Myofasial Pain Syndrome and at first was elated that I had finally found a diagnosis that explained a lot of my pain. Then was deflated as I learned that there's not much that can be done about it.  The greatest relief though is knowledge and now I am less afraid of my situation.

In a nut shell, this syndrome has to do with trigger points that send referred pain. They can be anywhere in your body. For instance, I  found one in my cheek muscle that most likely is the cause of my trigeminal neuralgia. These trigger points flare up when irritated and that is why practically any exertion sets them off. There's no medication that is completely effective for relieving their pain, although some take the edge off. In particular, narcotics. I take Percocet.

This syndrome goes hand in hand with fibromyalgia so it's very difficult to distinguish between the two when you are in a heightened state of pain. What I've learned about myself is that I have trigger points in muscles where I have had injuries. This is why it seems as though my injuries never heal. Otherwise I have a very heightened sense of pain so even the most gentle touch is extremely painful. This is part of the fibromyalgia.  The SNRIs, like Cymbalta used to calm the heightened sense of pain but since my head and face got involved with trigger point pain those SNRIs set off the pain in my head and face. I don't really know why.

My doctor put me on Clonazapam but it is weakening my muscles and causing excruciating pain in the morning when I get up so I'm switching back to lorazepam at night to help me sleep. It's the same type of med as the other but doesn't stay in my system as long.  So hopefully that pain will get better.

Chronic pain really leads to a hopeless existence. If it weren't for my children and husband I wouldn't be in this world anymore. I don't advocate suicide at all, but I also don't wish this suffering on anybody, including myself. I read that suicide is prevalent among chronic pain sufferers. I'm just saying I understand.

Insane Insomnia, relationships, etc.

Fibromyalgia and insomnia go hand in hand. Sometimes I can get to sleep right away but most of the time I get back up after a few hours of laying in bed. My body needs the restorative sleep but my mind won't shut up long enough for me to doze off.

Tonight in my insomnia mind frenzy I've been thinking about a good friend that I lost because of my illness. I turned her away when she wanted to help me with natural remedies. I know she meant well but I was in such a heightened state of pain that I didn't want anyone but my doctors to work with me. Hind sight now, I probably should have let her help me anyway.

A year or two before my health situation escalated, my friend was diagnosed and treated for ovarian cancer. It was a very traumatic time for her and a lot of people came to her aid, including me. Slowly she improved and was able to return to work. I never really talked with her though on an emotional level about what she was going through. I guess I couldn't handle it, so I probably wasn't as good a friend to her as I could have been.

As my illness progressed I started missing a lot of work and felt that I was being put into a situation where I needed to leave the company. Instead of being coached on going out on disability I was encouraged to leave. My friend and I had worked together so when I left we didn't get together as much. Then, as I said before, when I turned down her help that ended what little was left of our friendship. After not seeing her for about a year I invited her to dinner thinking we could patch things up, but I guess it was too late and the damage had been done. I think I was too self centered at the time and uncomfortable talking about what she needed. So I didn't hear from her again. I wish I would have been more open minded to her needs.

But I am not alone. A lot of people with invisible illnesses lose their friends because the friends don't understand what we are going through or know what to do. It's hard to empathize or sympathize with someone when you don't see their symptoms. And speaking from experience it's very hard to explain and after awhile nobody wants to hear about it anyway. So there are a lot of isolated, invisible illness people out there.

I feel guilty but I've become envious of people with visible illnesses. Even cancer. Is that sick or what. At least with cancer you have a diagnosis, treatment plan, and prognosis with a hope of recovery. I, on the other hand, am staring down a long road of misery with no hope for improvement. I can't even manage my pain enough to try and live a halfway normal life. I am a prisoner to it.

I no longer can work. I cannot volunteer. Honestly I no longer have the desire to do either. I drag myself out of bed in the morning to get my daughter off to school and walk the dogs. I dread the looming laundry and housework because I know the pain that will take me down half way through those chores. I can no longer cook dinner because pain finds me in that chore as well. Most days I sit in silence waiting for the day to pass. For the most part I have no interest in doing anything. I try to put my happy face on when my daughter and husband come home so I can just get through the night. Is depressing I know, but in every attempt I've made to reinvent myself the pain wins out and I'm done again.

I guess I'm just rambling at this point. After all it's 1:30am and I can't go to sleep.

The main take away here I guess is that I miss my previous life. I miss my friend. I miss being the wife and mother that I used to be. I miss the will to live and strive. I used to plan and work toward a PhD so I could become a full time professor. Now, at the young age of 54, I just wonder how long I'll be here in this world. For some reason earlier tonight I was thinking that I probably wouldn't make it past sixty. We'll see.

Getting Better?

Last week I went to my chiropractor, and today I went to my pain doctor.  Both mentioned that I was doing much better than when they first saw me a couple of years ago.  So I must be looking better than I have in a while. I do believe I am doing better, but not because I have been cured of any of the multiple problems that cause my pain, I believe its because I have accepted the fact that I am a chronic pain sufferer and that I cannot be fixed.  With that acceptance, a giant weight has been lifted off my shoulders and I have been able to mentally give up on my professional and academic careers. I know now that my main job is to constantly monitor my body for signs of pain, because even the minutest amount of pain can lead to a widespread pain attack if it's not dealt with immediately.  So to manage my pain day in and day out I:

• Take my medications regularly.
• Supplement with narcotics at the first sign of pain to prevent it from escalating.
• Go to the chiropractor regularly for my neck and back issues.
• Go to the pain management doctor regularly for evaluation and cortisone injections as needed.
• Try not to eat foods that will cause digestion issues because that too will set off a widespread pain attack.
• Try to get a good nights worth of restorative sleep. 

So am I getting better? From a pain and physical perspective, maybe a little. From a pain management perspective, yes, definitely.  From a joyful, fulfilling life perspective, it's starting to look better. I attribute my improving quality of life to the following:

• I have overcome my fear of pain.  For the most part, I know when it's coming and I treat it both proactively and acutely (as needed).  
• Now that my fear is down, I'm starting to regain some joy in my life and I'm going back to church.  
• I'm attempting to re-establish my relationship with God and trying to understand or learn from Him what plan he has for my life instead of going after what I thought I was supposed to do with my life.
• I've also greatly reduced my locus of control (the amount of control one feels they have over their life). I accept that I can only control a few things in my life, so now I can let the rest go and give those things up to God.  My husband has a saying "Worry is worthless, Prayer is priceless".  So I try to give up worrying and pray each day that God guide me through all circumstances and give me patience to prevail. 
• I'm starting to feel like maybe, in some small way, I can start to think about how I can make a positive contribution to the society without putting myself into a situation that will cause pain.  I have a feeling that my opportunities will be few, but at least I'm starting to think about it and will ask for God's guidance as I continue to look for these opportunities.
• Lastly, but most importantly, I no longer feel guilty about not working and bringing in more income for my family.  That being said though, I do miss having my brain challenged with work tasks and miss intellectual/business discussions with my co-workers. I also miss helping students to  learn how to better function in their organization for the betterment of themselves, their work teams, and their organization.

For those who have provided me with support and have been here for me during the past couple of years, I am eternally grateful.  For those people I have lost because of their lack of understanding or otherwise, I understand and forgive.  Because chronic pain is an invisible disease, it is hard for people to look at me and understand that I'm disabled, can't work, need a handicapped parking place, etc.  It's ok.

When it's all said and done, I hope that I was able to help/counsel other people with chronic pain as well as their families and friends.  I'm just not sure I'm ready to try to tackle that yet or if that is in God's plan for me.

Anyway, for me, life goes on, minute by minute, and I will take each one as it comes and deal with it.

Getting By

I haven't written for a while. I guess that means that I've been pretty content. I've learned how to better manage the different types of pain I experience.  My overall widespread nerve pain is mostly kept under control with low dose Lyrica. The nerve pain in my face is helped by Lyrica as well but I always feel a numbness or swelling/tight sendation on the left side of my face. I can usually tolerate it but if it gets too sensitive or radiates down my right shoulder front and back, I usually apply ice or a cold pack. Sometimes I use Biofreeze. When all else fails I take a Percocet.

When my back starts to hurt from over-exersion' the only recourse I have is Percocet. If I know I'm going to have a busy day, I'll try ibuprofen and/or Tylenol to help keep the pain from escalating but it seldom works. I usually have to stop what I'm doing and apply ice or take a Percocet so I can keep on the task at hand.

When my pain escalates and the Percocet isn't enough, I have to remove myself from the situation and take a hot bath or take a Lorazapam and lay down.

I credit the current regimen of medicine I'm on for the consistent relief I've been having. In particular I credit Relistor for relieving my generalized gut pain and Lyrica for my generalized nerve pain. Nortriptyline for keeping my mood stabilized and Lorazapam for helping me sleep.

I'm starting to work with a neuromuscular doctor at Washington university who specializes in small fiber neuropathy. This is a condition that is fairly new but can be positively diagnosed, unlike Fibtomyalgia. With new tests and diagnosis, maybe new treatments will evolve. My hopes are
not high, but I figure that I owe it to myself and others who suffer with chronic pain to lend myself to the research. I'll keep you posted.

New Drugs, New Hope

I have been on two new meds for my gastroperisis. Relistor injections and Domperidone. The Relistor is to promote bowel movement (i.e. lower gi); the Domperidone is to promote stomach movement (i.e. upper gi).  I'm getting some relief and can eat better, but I still get into a pain situation if I eat too much.  At least I can eat a little more than before without setting off my pain. The Domperidone gives me lots of gas which can also set off the pain, i will bring that up with my gi doctor when I go back in a couple weeks. The Relistor gives me some energy and helps a lot with my general widespread pain. This is good news because I haven't felt this much relief from my Fibro pain since I got off of Cymbalta. The problem is, it doesn't really help in the bowel movement category like it's supposed to. So I need to bring that up to my gi doctor too. Relistor is not known to be effective after about four months use. What I wonder is, will it still be effective on m my widespread pain after four months? We'll see. Because it is so effective on my pain I want to keep taking it even if it's not helping with the lower gi issues.

Oh well, I know this post has TMI, but I wanted to document it anyway so I can come back and review at a later date. I'll post an update after I follow up with my Gi Dr.