What I’ve Learned…Chapter 1

I’ve been coming here for almost two years now, I think. Not so much in recent months, as I was told that I didn’t have CIDP, but I’ve been reading a lot of the threads, and trying to keep up. As with many here, I’ve struggled with obtaining a diagnosis, and even though I have several diagnoses currently, still question whether or not the “root” cause has been established. Because of that, I’ve been doing a LOT of research and reading, talking to counselors, and contemplating my own journey. I’d like to offer some of what I’ve learned, as I think it may be helpful to others, like me, who came here thinking CIDP is/was a possibility, whether a formal diagnosis has been offered or not.

What I’ve learned would take hours and hours, if not days or months, to share. So, I’ve decided to offer a few different ideas, in seperate posts, over an unspecified time period. If anyone feels I have no business being here, or offering what I will, please don’t hesitate to tell me, either publicly or via private message.

My first installment, or “Chapter 1”, is titled: “It’s Probably NOT just “ONE” Thing”.

I can’t count the number of posts/threads I’ve read that question whether or not certain symptoms are usual CIDP symptoms. It’s the same with posts questioning diagnoses made by physicians that we disagree with. I think a majority of those personal stories that I’ve become familiar with have several common links…one being the early diagnosis of Fibromyalgia and Chronic Fatigue Syndrome. Usually, when people share that background, it’s almost as if they want to spit those words out, with an apparent disgust towards doctors that “got it wrong” in the beginning.

I’d like to offer an opinion: it’s quite possible that those doctors/diagnoses, at least in some of the cases, were not “wrong”; they just weren’t “complete”.

I’ve been diagnosed, at this point, with the following: Degenerative Disc Disease, which has caused 9 herniated discs of varying degree; Spinal Facet Arthritis; Myofascial Pain Syndrome; Peripheral Neuropathy; Fibromyalgia; Chronic Fatigue Syndrome; Meniere’s Disease; Depression; and, most recently, both Rheumatoid AND Inflammatory Osteo Arthritis.

At first, I thought…”This is bullsh!t…they’re just guessing, or giving me “dummy” diagnoses to try and make me go away!”. But what I’ve learned over the past year makes me think that they’re all probably “right” to an extent, and all these different diagnoses are but pieces in a much larger, yet undefined, puzzle.

Consider this: As it was brilliantly explained to me, finally…I had a Spinal Compression Injury in 2000. Everything else started AFTER that. I was in fairly constant pain from that injury, and it caused a severe loss of range of motion in my neck. That injury, with its’ symptoms, caused MORE injury to my system, which placed my body in a constant state of stress. Stress from both physical pain, and emotional stress from the effects of the pain and suffering.

Did you know that every time the human body is exposed to stress…ANY stress…there are over 15 HUNDRED biological reactions in your body?!?!? FIFTEEN HUNDRED!!! And, if that stress is not dealt with properly, it continues, and those reactions continue…constantly. Pretty soon, your body adjusts to the presence of the result of these reactions…you get used to having elevated levels of adrenaline, norepinephrine, dopamine, etc., etc., etc. Your body becomes addicted to these levels, and therefore, needs to keep producing more and more and more of them to satisfy itself. Pretty soon, if not relieved, your body starts failing, because it no longer has any more to give. It’s called “Adrenal Fatigue”, and it’s one of the major causes of Chronic Fatigue Syndrome.

What I’m suggesting you consider is this: when you were diagnosed, if you were, with Fibromyalgia and or CFS, it may not have been the “root cause”, but you may very well have been suffering from it, and may still be, to this day. Once your body becomes ill, it enters a state of stress, which causes all sorts of other problems that aren’t necessarily “related” to your primary or initial cause. Make sense? If you have CIDP, and are in pain on a regular basis, or are stressed about work, family, relationships, etc., etc., etc., as I know most of you are, it’s very likely that you have both of these illnesses.

To continue the story of how it was explained to me: I had my initial “acute” injury; that caused physical and emotional stress; the physical aspects helped bring about more injuries, because of improper situations within my body; the constant pain caused a “re-writing” of my nervous system, which now allows my body to “amplify” pain signals and send messages of severe pain to the brain, for situations that some others may only perceive as “minor”. I’m not saying, nor do the doctors or books I’ve read, that people are making things up…don’t take it that way. What I am saying is there was something “primarily” wrong, but after time, it’s possible that other things develop, simply because of the conditions brought about by your “original” illness.

Which brings me to a final point for this post: I’ve also learned that I have to accept that there isn’t any “one cause” for things. I have to stop wasting energy looking for something to blame. I always thought…”I’m in all this pain…SOMETHING has to be causing it!!!”. Well, something IS causing it…IT’S CAUSING ITSELF! Chronic Pain is very often the result of the nervous system becoming damaged during an “acute” or “initial” injury; at that point, “Chronic Pain” is no longer related to your initial injury, and can’t be blamed on anything else…it has become its’ own illness, of its’ own making, and it has to be treated as such. So many, including myself, have gone through so many tests, trying to satisfy our need to know, our need to blame something, when, in fact, there’s nothing really to find. Your body has stopped working as it should, and unfortunately, that can’t really be shown on a CT/MRI/X-Ray. While you have CIDP, you may also need to be treated for Chronic Pain, which is different, and has its’ own set of symptoms. You may also develop, or have developed along the way, Fibromyalgia or Chronic Fatigue, which also bring their own set of symptoms and treatments. There are probably other “related” illnesses that come along…Irritable Bowel Syndrome, Anxiety, Blood Pressure, etc.; that doesn’t mean that their symptoms should be looked at as part of the CIDP, it doesn’t mean your CIDP treatments will help them, and most importantly, it doesn’t mean that the doctors don’t know what they’re talking about. There is no ONE THING that is to blame, and you, nor the doctors, can try and make it so.

I’m not saying this is the case for all, but it’s fairly common. I’m not trying to replace anyone’s doctors or therapists…I’m just trying to share what I’ve learned and read. If anyone feels I’m going too far with this, or that it’s not helpful, PLEASE let me know. I just know how much relief I got when someone, or several someone’s, finally explained all this in a way that it finally “clicked”. Now I can look at my list of diagnoses and accept that all those doctors weren’t necessarily wrong; they were “right” at that point in my life, and may still be. That doesn’t mean that there isn’t, as I said, some “yet to be named, all-encompassing diagnoses”, but there probably isn’t, and I’m okay with that. Rather than continue to stress and get frustrated, I choose to look at my situation as an opportunity to learn, and actually, to help doctors learn…because, as we all know, despite how many of them present themselves…they DON’T know everything! 🙂

Elmo