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.

Diseased Gallbladder Wrecks Havvoc

I had my gallbladder out on February 25, 2013.  After taking two trips to the ER in January and having all tests come back normal, I finally saw my GI doctor on February 13th.  I told him when they injected the nuclear medicine it set off my headaches and all my "right sided" gut and back pain.  He said that was enough to warrant taking out the gallbladder and sent me to a surgeon.  The surgeon said I was a "million dollar test" patient because when all the tests come back normal they have to go on symptoms, so she took out my gallbladder and I feel much better. My chronic daily headaches are gone.  My gut and back pain from eating are gone.  I'm still having my normal chronic back pain and I had a real bad widespread pain episode last Friday night after trying to do yoga earlier in the day, but I think all in all I'm doing better.

The pain behind my ears and in my temples I have found to be associated with high blood pressure and that is under control for the most part.  Caffeine, chocolate, and seratonin related drugs, and cold medicines aggravate it.  The problem is that those seratonin drugs used to really help with my chronic back pain so my back pain is out of control.  So basically I am treating the greater of the two evils, the headache. I did get some trigger point injections in my back on February 14th, but they haven't been very effective.

When my widespread pain hit last Friday I took one Oxycodone, then a few hours later took two more and got in a hot bath.  When that didn't help and I was still going out of my mind in pain, I took a Lyrica.  That did help calm things down and I was able to go to sleep.  My pain had resided by the time I woke up but I felt hung over and my body was limp, like a wet noodle.  I continued to take Lyrica for several evenings but found that I cannot wake up in the morning when my alarm goes off.  My daughter was late for school yesterday and today we just totally blew it off.  I did not take the Lyrica before bed last night and I woke up at 2am and as of now, 4am, I am still awake.  I can't win for losing.  Oh well, at least I'm not in pain right now.  I can live with a little lack of sleep if it's not caused by pain.

A Little of This and a Little of That

I know I said I wasn't going to enter any more posts for this blog but I've had some time now since I saw the last neurologist and I'm doing some experimenting/self evaluation to try to find relief from some of my symptoms.  I have determined the following:

1. The pain behind my ears, in my temples, and causing general scalp tenderness seems to be lessened substantially when I go off of all drugs that have to do with Seratonin.  I was taking 90mg of Cymbalta, a Seratonin Norepinephrin Reuptake Inhibitor (SNRI) for Fibromyalgia.  I slowly reduced the dose and those symptoms mentioned above improved.  I stopped Cymbalta all together and those symptoms all but went away.  I believe these symptoms are now due to a condition called Seratonin Syndrome, which, by the way, can be FATAL.  While off of Cymbalta, my Fibromyalgia pain (primarily in my back) came back with a vengence, so I talked with my doctor about switching to Savella.  It is also an SNRI but has a threefold affect on Norepinephrine to Seratonin so I thought it might be able to address the Fibromyalgia without terribly affecting my head.  Unfortunately that is not the case.  The head pain is back and the Seratonin affect on the Fibromyalgia is not significant enough to help.  So now I am up tonight with head pain, back pain, and my trigeminal nerve is also acting up. I've taken Oxycodone, Tylenol, and Tizanidine (muscle relaxer), and Ambien.  Hopefully I'll be able to fall asleep soon and feel better in the morning.  I need to make an appointment with my primary care doctor and talk about what other options I have for treating Fibromyalgia without using Seratonin altering drugs.
2. Menopause/hormone imbalance.  I have been having hot flashes gallour and then am chilled episodes.  I keep telling my husband and daughter that my thermostat is broken.  I've been using Progesterone cream to help with the hot flashes, but it doesn't seem to do much. With the Progesterone cream, I do have a little more energy though and labido is returning.  My husband is happy about that :).   When the hot flashes occur it sets off the Trigeminal Nerve pain and the overall head tenderness and pain behind my ears.  Ice packs seem to help if it gets too bad.  I also need to ask my doctor to see if she can test my hormone levels and make any recommendations for treatment.  I've tried natural supplements for increasing Estrogen and that makes my head symptoms really bad, so that's why I tried the Progesterone.  I was reading that even if Estrogen levels are lowering, if there's no Progesterone (as is what happens when you stop ovulating), Estrogen dominance occurs causing the head aches, etc. so you need to supplement the Progesterone vs. the Estrogen.  I hope my cousin was right when she said hormone imbalance calms down around 56 or 57.  Only 4 or so years to go.
3. I'm starting some supplement therapy with a general whole food multivitamin for women (but it doesn't contain soy so it doesn't cause headaches), and another supplement that is supposed to be good for relieving inflamation.  I'm not sure if they are helping, but I know they are not hurting me, so I'm going to complete the 30 day supply and see if I feel any general health/well being improvements.
4. Physical fitness.  After the first of the year I'm going to start looking for a Tai Chi program.  I need to strengthen my core without setting off the Fibromyalgia everytime I work out.  From what I've read, Tai Chi is the best exercise program for that. 

So for the next year, I hope to strengthen my core muscles, increase my intake of nutrients via supplements and eating a more nutrient dense diet, go off of Seratonin altering drugs and find other options for treating my Fibromyalgia.  As for the head pain and trigeminal nerve pain there's not much I can do about that other than take opiod pain relievers and muscle relaxants.  I'm just praying that I can be more functional and a little happier to be around for my family's sake.  After all, who wants a Debbie Downer around all the time.  If there's anything I have learned from all this, it's to try to enjoy life through the pain because if I keep waiting for it to go away, I'm going to waste my life away and be a burden to my family.