Hey! Chronic Pain Patients- Fight Back!

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My little-ole story really isn’t much.  There’s lots of pain patients just like me!

What matters is that my quality of life has improved thanks to a combo of meds & procedures. and I’m not alone! Our meds are working!  None of us expects to be pain-free. But managing is power!

Since I was recently asked my personal story- I’ll do my best not to bore you’all and share it here too.

I’m a lupus patient with multiple nerve entrapments from inflammed blood vessels and nerves-which leads to recurring uveitis, scleritis (painful eye issues), trigeminal neuralgia (cranial neuropathy), multiple peripheral neuropathies (ulnar, radial, medial & pereanol) that flare up..also degenerative discs, narrowed cervical spine issues, a slipped vertebrae at S1 L2 that causes sacroillitis, severe plantar fasciitis, extreme photosensitivity from lupus (UV causes hives and rashes-the sun is not my friend) osteoarthritis, tons of mouth sores & nose sores from lupus, and I’m sure I’m forgetting a few.

Oh yeah, brain fog too from cns issues from lupus, but nothing major. Like my father used to tell me, “Well how is everything ELSE?” LOL- “Fine” I’d say! Actually I’d have to say my achilles heel is actually my heel- I’ve had 3 nerve surgeries and a toe amputation to try and stop the horrid pain in my right foot- feels like someone is lighting a match under my toe (not a neuroma-but a pereanal nerve entrapment-who knew! lol) and like someone is cracking me on top of the foot with a ruler. Relentlessly. Sometimes for days. Only relief is strong pain medication and hot water beating down on it.

That all said (and it was a whopper, I know) you get the gist of it. I am not afraid to tell anyone that I take 23 meds a day (mostly for lupus) but that it includes the max of tramadol (2 50mg every 4 hours-8 daily) and that it pretty much works in the background-(I don’t even know it’s there!) and I take opiates 4 times a day for short term pain. I’d like to add that I have taken this same medication, same dosages for almost TWENTY years without an increase or a need for one & that I worked a full time job THANKS TO THE MEDS for most of those years.

I’ve worked with many doctors, and felt the sting of the stigma that comes with being a chronic pain patient. Unruly, judgemental pharmacists & techs who have stamped VOID on my prescriptions to pain docs that welcomed me to their office by saying, “if you’re here to get something to feel good you might as well walk out that office door right now”.

I’ve signed pain contracts, unsigned pain contracts, had surgeries and procedures and I completely understand if you are going through a hard time finding a pain management doctor who truly understands you!  You gotta kiss a lot of doctor frogs before you find a prince!  Don’t be afraid to find one that you have the right fit with!

My honest opinion- pain doctors are like night and day. Some are sympathetic, some empathetic, some not so much and some down right mean spirited and can treat you like a criminal or addict looking for a fix.

Lucky for me though I’ve had an anesthesiologist pain doc who gives me epidurals, radio-frequency ablations, cortisone shots and has prescribed me the pain meds that work for me for over TEN YEARS now!  He’s given me quality of life and I am grateful for his expertise.  He’s offered me procedures I didn’t even know existed!  Thanks to him I am mobile.  I had plantar fasciitis so severe I couldn’t walk without sleeping in an orthotic PF boot all night just to get a few hours to be able to be on my feet., and low and behold my favorite doc who was treating me for cervical spine issues said, “Hey, I can FIX THAT!”  WHAT?  And he DID!  Regular cortisone shots right into the connective tissue on the bottom of my feet was a miracle cure!  NO kidding!  Goes to show that you never know what one doctor knows that another one doesn’t!

A good doctor can make all the difference. I can’t say that enough to people who ask me. If you aren’t getting results with your physician, talk to him or her and if that doesn’t work- FIRE THEM and find another.

Chronic pain patients who are able to function thanks to medications aren’t who the DEA and FDA should be worried about. (why make the honest ones suffer?).. go out and catch the drug dealers of the illegal drugs and make sure teens are informed about the danger of taking drugs. Leave the chronic pain patients alone, especially the ones who are functioning thanks to the medications that give them quality in their lives. Most studies I’ve read say that true chronic pain patients do not become addicted.

Kudos to all you do to get our voices heard!

If you want to help out-here’s a petition shared with me from JGF Advocacy Project: CHRONIC PAIN PETITION-SIGN HERE!

And here’s a link to JGF Advocacy Group on fb:  Pain Is Not Addiction FB Site!

Sincerely, JJ

WHAT’S YOUR STORY?  Plz share in comments!

Where Fibromyalgia and Chronic Fatigue Syndrome Part Ways (and Where They Don’t)

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Shared from ProHealth.com by Cort Johnson

Lately we’ve seen what appears to be a great deal of similarity in muscle issues in Chronic Fatigue Syndrome and Fibromyalgia. We know that Dr. Bateman and others believe ME/CFS and Fibromyalgia occur on a fatigue-pain continuum – that they are similar disorders that differ in the amount of fatigue and pain present. They both predominantly affect women, and similar medications are used in both.

Both Dr. Natelson and the Lights, however, have found differences in ME/CFS + FM vs ME/CFS patients alone, and Natelson argues that they’re quite different disorders.

Now a recent study demonstrates an important way that this is so.

Reduced levels of BDNF – described as a nerve repair agent – were recently found in Chronic Fatigue Syndrome and multiple sclerosis. The levels found – less 25% of normal – were stunningly low, and this suggested that neuron functioning was taking a real hit in both these disorders. Given the nerve damage found in MS, that result was expected for MS – but not in ME/CFS.

A recent Fibromyalgia BDNF study seems to portray a very different disorder. It examined BDNF and a marker of central sensitization (S100B) in the blood of fifty-six FM patients and then determined if this correlated with pain pressure thresholds (the threshold at which pressure starts producing pain). The lower the pain threshold, the more pain a person is in. The study did not involve healthy controls and thus did not, strictly speaking, determine if BDNF levels were higher or lower than normal in FM.

Microglia Activation and Central Sensitization

Before we get to the findings, let’s look at S100B. S100B is such an intriguing factor that it’s surprising it hasn’t been studied before in FM or in any other pain disorders. S100B upregulates two key cytokines, IL-1b and TNF-a, both of which may be involved in FM and ME/CFS. It also activates the nuclear transcription factor which Maes proposes underlies the inflammatory milieu in ME/CFS and depression. It is also considered a surrogate for microglial activation.

Study Findings

This study found that increased BDNF and S100B levels were associated with increased pain sensitivity in FM. Other studies have found increased BDNF levels in FM as well. These FM findings contrast sharply with the decreased BDNF levels found in ME/CFS.

With regards to BDNF, ME/CFS looks more like multiple sclerosis than it does Fibromyalgia.

High Levels of Excitation vs Low Levels of Nerve Repair?

While high levels of BDNF in FM look like they’re enhancing the activity of excitatory pain pathways in FM, low levels of BDNF in ME/CFS look like they may be impeding neuron repair and slowing down nerve transmission. Could FM be a disorder of brain excitation while ME/CFS is a disorder of brain loss and slowed functioning? Could it be that simple?

A quick look at the research findings in ME/CFS and Fibromyalgia indicate more overlaps than dissimilarities. Both are characterized by sympathetic nervous system activation, reduced aerobic capacity, increased lactate levels (in one place or another), reduced brain blood flow, decreased cortisol, and decreased grey matter in the brainstem.

Similarities between the ME/CFS and Fibromyalgia

Differences between the ME/CFS and Fibromyalgia

Central Sensitization – the Key?

It’s intriguing that the two major differences between the two disorders, increased substance P and BDNF in FM, are associated with central nervous system activation.

Given the high amount of pain and problems with stimulus overload, we’ve assumed ME/CFS is also a central sensitization disorder. Yet two markers associated with central sensitization that are elevated in FM, BDNF and substance P, are not elevated–or are actually lowered–in ME/CFS.

The excitatory neurotransmitter glutamate is also clearly increased in some parts of FM patients’ brains, but a CDC gene expression study suggested decreased glutamate uptake may be present in ME/CFS. At the Stanford Symposium Dr. Zinn described an ME/CFS brain characterized by substantial ‘slowing’. It was a brain that seemed to be more asleep than awake.

On the other hand, Jason has proposed that limbic kindling produces a kind of ‘seizure activity’ in parts of the brain in ME/CFS, and high levels of neuropeptide Y and reduced heart rate variability indicate the sympathetic nervous system is activated in both disorders. Klonopin (clonazepam), a nervous system inhibitor, is used in treating both disorders.

In the end it may be that, like the immune system in ME/CFS, parts of the brain are over- and under-activated in both disorders.

Conclusion

Increased levels of BDNF and S100B levels are associated with increased pain sensitivity in Fibromyalgia. They join a variety of other markers of central sensitization markers found in FM.

Differing levels of BDNF and substance P in Chronic Fatigue Syndrome and Fibromyalgia suggest that the two disorders differ in important ways. However, the two disorders share many more commonalities than differences. The central nervous system could be, however, where the two disorders diverge.

Pain is common in ME/CFS, but it appears that the pain is, at least in part, being produced in different ways than it is in Fibromyalgia.

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About the Author:  Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.

http://www.prohealth.com/library/showarticle.cfm?libid=19177