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.

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.