Something that I am asked a lot about is the connection between my two illnesses- Lyme disease and Reflex Sympathetic Dystrophy (RSD).
Did one cause the other? Which came first? Are the two even related at all…or were you just unlucky enough to develop both?
Because May is Lyme disease awareness month I thought it was a good time to try and begin to explain a little bit more about these two very complex medical issues and how they relate to one another.
As anyone who has been a patient with any type of long-term illness knows, you tend to become an ‘expert’ of sorts in your condition. There are just certain things that cannot be learned through a textbook… but are instead, earned, the hard way, through experience.
These past years of being in and out of doctors offices and hospitals has given me the privilege of meeting and sharing stories with a lot of others who are facing some of the same health challenges as I am.
It seems that the big difference between my case and theirs is that my RSD did not begin after an injury. Both times it began with an infection.
Through having this blog, several others have reached out to us, sharing that they too have been suffering from RSD after an infection—especially Mono and interestingly, many have also tested positive for Lyme at some point in their lives.
By most doctors, RSD is considered a “trauma disease”— It is usually a physical injury such as a sprain, fracture, or surgical procedure that causes it. Usually after an injury the nervous system shuts down within minutes to hours, but for some reason, in RSD patients, the nervous system malfunctions and continues to send constant pain signals to the brain... Kind of like a car engine that continues running even though the ignition is off.
It's unknown why some people develop this condition after seemingly minor injuries or otherwise benign infections.
However, it is well known that both viral and bacterial infections (like shingles, Epstein-Barr, CMV, herpes simplex, HIV, leprosy, syphilis, lyme, etc) can trigger a strong pro-inflammatory immune response causing a wide range of neurological problems.
These infectious illnesses can also cause widespread indirect nerve damage by provoking an autoimmune disorder, in which the immune system attacks the body's own myelin sheath (the insulating covering that protects the nerves)—think of it as trying run electricity through an extension cord that is missing the protective covering. The result is diffuse, searing neuropathic pain. I was treated with high doses of IVIG for nearly 1 year to try to reverse this process known as demeylination.
In this case, it is the immune system that never ‘shuts off’ and the infection which provides the fuel for this process to develop and persist.
The immune cells continue interacting with the peripheral nervous system, releasing pain producing chemicals and you begin to develop heightened activation of the pain pathways.
Because every peripheral nerve has a special function in our bodies, many symptoms can occur when these nerves malfunction. Some may experience numbness, tingling, and pricking sensations, sensitivity to touch, or muscle weakness. Others have more extreme symptoms, like burning pain, muscle atrophy, fainting spells, paralysis, ulcerative skin lesions, or internal organ dysfunction. In the most severe cases, you may become unable to digest food, maintain stable levels of blood pressure, or even regulate your body temperature. The end result is total dysfunction of all of these components, resulting in hyper-arousal of the nervous system, making any type of normal stimulus (like touch, light, sound, vibrations, etc) painful and intolerable.
It is difficult to say exactly which of these symptoms can be directly and solely ascribed to either Lyme or RSD... and which are more complex in origin.
There have been several papers recently discussing the possible role of previous infections (particularly Epstein-Barr virus (EBV) in the development of autoimmune disorders.
Is it possible that this has some significance in the development of an autoimmune component leading to RSD?
Are certain people more genetically predisposed to develop symptoms of RSD post- infection than others?
And, could this account for the degree of severity of the condition in a sub-group of RSD patients, like myself?
It seems reasonable to believe that the connection between these illnesses is not as rare of an occurrence as most might think.
People are like jigsaw puzzles. Take a piece out and you no longer have the whole picture…
It goes without saying that this is not a medical opinion :) but just my 2 cents worth. This is a topic I think about a lot as I continue to recover and gain back what these illnesses have taken away from me. I know I have a God who is bigger than any illness and that He has blessed me with doctors who are curious and open-minded enough to make the connection between these illnesses in my case.
…There is definitely more to come on this…
The Lyme documentary “Under Our Skin” will be airing on PBS WLIW channel 21 in New York this Saturday, May 21st @ 3pm! Set your DVR's!
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15 comments:
Dear Jessica, So many things were going through my head as I read your post... Many thanks to our Great God for bringing you through the darkness to where you are today, where you can enlighten us with a thought-provoking medical explanation of RSD and Lyme. Only someone like you, who has gone through it the way you have, can ask the right questions that can lead to real breakthroughs in treatment and, hopefully someday, prevention. Your intelligence and articulation shine forth in your explanations, especially when you take complicated concepts and apply real-life examples to them and make them understandable for others (like me!) I am so thankful for how far you've come, and will continue to pray for you, your mom (hi Gina!) and your amazing family. Love always, Angel xoxoxoxo
Excellent post! Very informative! This same virus may be responsible for fibro and CFS as well. Some doctors believe these are overlapping illnesses all affecting the nervous system.
Oddly enough most pain syndromes affect more women then men (these also include MS and Lupus). It seems to affect women of child bearing age then the numbers drop in women AFTER menopause.
This is far bigger than we realize. Much research is needed and is being done.
God is greater and we trust we will help us find the way.
With love and prayers,
The Turners
Dear Jessica,
Thank you. We ask that God bless you and keep you strong in mind, body and spirit. You amaze us with your attitude and thirst for knowledge. It is only through the asking of these questions that we can begin to seek answers. You have taught your doctors more than any book or lecture. Thank you for being a voice for those who cannot find the words to speak for themselves. You are clearly here for a reason; this much we know.
Much love,
Rosemary and John
Right on! There are too many overlaps with the immune deficiencies diseases. Just watched a program on YouTube where the doctor was explaining when pain becomes a disease and how much information is still needed. As he pointed out.. we are treating the symptoms but not the underlying problem. I have noticed that many who end up with one disease, often begin to collect them. Be a good research study... it is coming for sure!
http://chronicfatigue.about.com/od/overlappingconditions/p/fibromyalgia2.htm
Central sensitivity syndromes
Muhammad B. Yunus, MD, a pioneer FM researcher, believes that there is a large group of illnesses with overlapping features that he calls "Central Sensitivity Syndromes." What they all have in common is a sensitization of the central nervous system. Under this broad CSS category, he lists disorders such as FM, CFS, migraines, irritable bowel syndrome, TMJ, multiple chemical sensitivities, restless legs syndrome, myofascial pain syndrome, and others. All of these illnesses have some symptoms that overlap one another.
What a wonderful testament to your parents, doctors, medicines, etc.; all of whom are under the skillful guidance of the greatest healer of all - our Lord Jesus.
I am thrilled and inspired by your progress.
Isaiah 26:3
3 You will keep in perfect peace
him whose mind is steadfast,
because he trusts in you.
My 10 year old son was just diagnosed with lyme disease and Crsp in his foot and ankle. So far nothing has touched the pain and physical therapy has been so hard. I am glad you are doing better and found the information you posted very informative. Thank you!
Lyme is certainly very complex. It’s good to know that you’ve become ‘sort of an expert’ towards your condition. Being well-informed about this disease is the best armor you could use against this illness. In most cases, the lack of awareness on both ends can cause Lyme patients to be misdiagnosed or diagnosed too late. Thanks for sharing these information, and I wish you all the best!
Sabrina Craig @ Law Firm of Joseph M. Lichtenstein P.C.
Thank you for sharing! I have had CRPS fir almost 7 years. I agree, we are the experts! No one else is more invested in our own bodies than we are! I learned about a year ago that I also have Lyme. I have tried to trace it. It looks like it may have been due to a spider bite over 10 years ago. I went to the ER, but was belittled and dismissed. Hindsight! I Advocate for hundreds of thousands of people all over the world. The number of people that have both CRPS and Lyme seem too large to be coincidental. I'm not a doctor. But all of my doctors seem to agree that it was the uh nnderlying lyme that encouraged my body to develop the CRPS after surgery that day.
It's something to think about.
Fascinating discussion about Lyme disease and CRPS. I do not have Lyme that I am aware of but suffer from CRPS. This all truly is a mystery that needs unraveling and a CURE! Stay strong everyone and let's stay on a mission for research and cures.
Hi- my nine year old son is currently experiencing the same thing. Severe pain in his foot and nothing seems to be working. He's been diagnosed with CRSP as well (investigating Lyme). Please tell me something eventually worked for the pain?!?! Any insight you have would be greatly appreciated!!
I have both Lyme Disease and CRPS, and life has been torturous. This is the first time I have found someone who has both. I am wondering, you did not say how the IVIG treatment worked? Was it effective? I have found that anything I take to kill my Lyme infections (I have many) makes my CRPS worse, and when I do what I know to treat CRPS it makes my Lyme worse. At the end of the day it doesn't matter if they are the same thing or connected (for me they obviously are), I just need to find something or my days are numbered. Anyway. You sound like someone I would like to speak to and wonder if you are open to that. I have a web site called Pain Maps (dot com) with tons of research for CRPS and a blog and other stuff, a radio series on pain, lots of stuff there. Please contact me at sensorybeing [at] gmail [dot] com if you are open to talking. Thanks!
One big difference. RSD is 'crippling' pain.
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