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.

Gastroperisis from Gallbladder Removal or Head/Neck Trauma?

Since my gallbladder was removed, I have felt like my stomach is stapled.  I feel full after just a few bites, I have a hard time swallowing water/liquids, and I have referred pain to my back every time I eat.  I went back to the surgeon a couple weeks after the surgery and she did a test to see if I had a bile leak.  I did not so she sent me on my way telling me it was phantom gallbladder attacks that would/might eventually go away.  I wasn't her problem any more. 

I bought that theory for a while until I re-read a comment from one of my blog posts.  This person recommended that I look into problems with the Vagus nerve.  So I did and that brought me to a possible diagnosis of Gastroperisis.  Basically, the stomach doesn't contract to digest the food.  It is paralyzed.  I read the associated symptoms and decided that this IS what is going on with me, not phantom gallbladder.  I made an appointment with my GI doctor and he said that sometimes after the gallbladder is removed the bile cannot move through the system fast enough and backs up into the stomach causing this condition.  He prescribed a medication that will take up to one month to work but said it should help.  If this doesn't help then it may be that I have damage to the Vagus nerve which probably won't be reversible.  The damage to this nerve could have been done during the gallbladder surgery.  I think it might also have been damaged when my neck was hurt in 2011, but the symptoms are just more significant/apparent now that I'm not having other symptoms from my diseased gallbladder.

In the meantime, I'm back on the narcotics because I have to eat and eating causes me excruciating pain.  I found that very small meals with no bulk (raw vegetables, fruit, whole wheat), no dairy, and no fat is tolerated the best. Yum, right?  I've been drinking Ensure's twice a day to help get the vitamins and nutrition I need. 

I've lost a total of 45 pounds since my head/face pain started in January, 2012.  I lost 20 of those pounds during the year of 2012 and have lost 25 more pounds in the last 6 months. I'm continuing to lose 2-3 pounds per week because I can't eat.  This isn't a problem yet, because I am overweight and can stand to lose about 30 more pounds, so this may be a blessing in disguise.  I just need to make sure that I get enough nutrition.

Herniated Discs in the Cervical Spine

After my gallbladder was removed, I noticed that my arms were falling asleep when I layed on my back.  I'm normally a side-sleeper but while the incisions were healing I had to lay on my back.  I mentioned my arms falling asleep to my chiropractor and he ordered an MRI of my cervical spine.  I have two herniated discs in my neck.  This could be causing a lot of my problems with "right sided" pain, head and neck pain, and back pain.  My chiropractor wants to do a regimin of decompression therapy along with some exercises and traction-like poses with a support device.  He says that the decompression will allow the discs to rejuvinate with fluid and move the herniation back into the center, thus "healing" the situation.  I was very excited until he told me the program would cost $5500. Of which I was promptly approved for credit through Care Credit.  While I want to be "healed", I'm skeptical of the treatment program and cost.  He reassured me that there would be before and after x-rays, etc. and that he guarantees improvement.  I just can't afford another monthly payment.  I already owe way more than I can afford in doctor bills.

I asked my primary care physician about all of this and she suggested that I talk with my pain management doctor about it.  I did, and he recommends an epidural steriod injection into the discs.  At least this is covered by insurance.  I'm not clear on what to expect from this treatment and I know results vary from patient to patient so I'm going to go ahead and give it a try to see if I can get any relief from any of my symptoms.  At least this is a "firm" diagnosis that has specific treatments which may lead to surgery.  I have a feeling that I have other herniated discs along my spine that no doctor has considered.  I guess I'll just start on my neck and see what happens from there. 

Wouldn't it be great if I actually got to feeling well enough to go back to work?  Who knows.  I'll keep you posted.

Wake up and get off the narcotics!

I've been doing some more research on alternative treatments to help with my Fibromyalgia pain since I can no longer take the SNRI's like Cymbalta or Savella.  I've been on a trial of low dose Naltrexone (4.5 mg) per day.  It acts by blocking opiod receptors and reducing cytokines that cause Fibromyalgia-like symptoms according to the President of Alabama Society of Rheumatic Diseases, David McLain, M.D. as quoted in the Fibromyalgia Network article Sublte Signs of Immune System Breakdown in Fibro.  The on-label use for Naltrexone is to assist people getting off of narcotic or alcohol addiction so people taking this drug cannot take narcotics or drink alcohol.  So for me, although not addicted, I needed to quit taking narcotic pain meds for seven days prior to taking the Naltrexone and haven't taken them since. 

After being on Naltrexone for one month, I did not feel any significant improvement in my pain symptoms, however, I have been more alert and feeling alive since I'm off of the narcotics.  I didn't realize what a zombie I was and how regularly I was using the narcotics until I went off of them.  It was enlightening but when I have my severe pain episodes it's really hard not to reach for the Oxycodone.  Instead I've been using ice or heat, taking a hot jacuzzi bath, or just resting until the pain subsides.  It's difficult to get through.  I still take OTC pain meds such as Ibuprofen and Acetaminophen.

I visited my doctor last week and discussed all of this with her.  She doubled the dose of the Naltrexone to see if a higher dose would be more beneficial with the pain.  Unfortunately, the side effects of the higher dose of medication kicked off my scalp sensitivity and the pain behind my ears and temples just like the SNRIs did.  I quit taking the Naltrexone for a few days and am now back on the 4.5mg dose until my doctor instructs me otherwise.  A medium dose of 6mg may be beneficial to try.  This dosage will need to be compounded at the pharmacy so I'll have to make a special trip to the hospital pharmacy to pick it up. 

If the Naltrexone 6mg is not an option or does not work, then my next suggestion to my doctor is Plaquenil which is also a drug that tempers immune activation and my help with pain.  I'll keep you posted.