What I’ve Learned…Chapter 1

    • Anonymous
      January 19, 2011 at 12:39 pm

      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! 🙂


    • Anonymous
      January 19, 2011 at 3:23 pm

      Elmo, you have hit the nail on the head…I have come to this same conclusion, but what makes it hard is that when you have multiple issues, how to coordinate everything? Each doctor specializes in his/her own specialty and has boxes to put you in. What if there are multiple causes or overlaps? They don’t address this. They just refer you to another specialist. They need a multidisciplinary approach and need to think outside of their boxes, which I have found most if not all of them unwilling to do. I have brought up other ideas/theories and they won’t address them.

      Anyway, I wanted to let you know about a CFS/Fibro clinic in Miami, FLA, [url]http://www.cfsclinic.com/[/url]. It is run by Dr. Nancy Klimas, an expert in this area, and you may want to google and research. A fellow vaccine sufferer is treating there and has reported others who have had positive results. Dr. Klimas understands the root causes of these issues and attempts to address them. I am planning to go there when I can save up some money because they don’t accept insurance and you have to pay out of pocket. I spoke with a CFS researcher in Chicago, looking for resources here, and he said that “noone else has the skills that she has.” Just wanted to pass on this potential resource for you.

    • Anonymous
      January 19, 2011 at 3:54 pm

      Thanks, Jessicah…but I’m on the waiting list for a doctor here in SLC that is considered one of the top three in the world on this matter…Dr. Lucinda Bateman. If you do much research on CFS/Fibromyalgia, you’ll start seeing her name very quickly.

      It is very interesting to me how 350,000 people will be diagnosed with CFS this year, in the US alone. Compare that to about 250,000 that will be diagnosed with Breast Cancer, and then compare the support. They are on the verge of something with this discovery of the XMRV, a retrovirus that they have found common among CFS patients, while only 3% of the general population carries it. I was also a little shocked last month when it was determined that I, as well as anyone else who has ever been diagnosed with CFS, cannot donate blood…ever. The American Red Cross has issued new standards, and refusing blood from CFS patients is one of them.

      As to the multi-standard physicians…I’ve been told that’s what “Internists” are best at. Another option is to find a “Physiatrist” that will “ride herd” on your conditions and treatments. I actually didn’t know what an Internist’s specialty was, until recently. I was told, by an Internist, that their specialty is “Adult Medicine”. You have your “Pediatricians” for kids, “Family Practice” for general stuff, and “Internists” for those illnesses that come on in adulthood. The stuff you learn when you’re sick!!:rolleyes:



      Oh, and a “P.S.”…most of what I said in my original post isn’t “just my opinion”…it’s accepted opinion of many, many doctors, researchers, etc. If anyone would like, I can offer many, many, MANY links, resources, and quote “sources”.

    • Anonymous
      January 19, 2011 at 7:13 pm

      Sometimes you feel as IF YOU are the domino that starts some giant cascading elaborate pattern.
      At times? Docs in one specialty simply ‘don’t know’ about impacts of one aspect of their specialty on other ‘specialties’. Worse yet? Once they graduate from med school, ‘keeping up’ with new developments in research, diagnosis and treatments are waay behind where the need is and should be.
      We are either fortunate or not in what medical physicians we have access to where we live to get to the quick or roots of our problems.
      And, further, YES! The odds? They are phenomenal when we encounter not only one but more auto-immune issues. Our bodies tend to try and ‘compensate’ for problems they really cannot compensate for without help. And we usually aren’t able to get that help until a lot of damage is done.
      Finding the causes isn’t that easy, tho you mite be able to figure out what started the dominoes to fall? The body is complex and can change it’s mind as to how to deal with it’s problems. Some are fixable either thru various meds and treatments, or surgeries? Others not so likely.
      More important is to get help that enables you to NOT go crazy with pain!
      Even then, choices are rather limited so far.
      Yes, you are close to target, but key here? IS what does THAT get for you?
      THAT is the most important thing for you – to get that right treatment you need…if it can be gotten. I truly hope and more that you find your help and soon. No one person should endure what we often do, with few options and no cures. Hugs always! – homeagain

    • Anonymous
      January 20, 2011 at 7:26 pm

      Today I was looking for long term cure rates of IVIG on CIDP when I found this-

      “2008 Feb;47(2):208-11. Division of Rheumatology, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA

      A subset of fibromyalgia patients have findings suggestive of chronic inflammatory demyelinating polyneuropathy and appear to respond to IVIg.”

    • Anonymous
      January 27, 2011 at 5:01 pm

      I have had sinus and chest infections for so long I can’t even remember when it started. I have had immune issues for a very long time also. Now I have been diagnosed with CIDP as of last year and I have a great Neurologist. But….. He only deals with the nerves and when I have an infection he tells me to get an antibiotic. Well, he doesn’t want to start dealing with that end of it because as far as he is concerned I am getting better with the infusions, cellcept, steroids, etc…But I still have immune issues. So when I got to a regular doctor they want to send me to many specialist, get xrays, etc… I already know if I am sick I need an antibiotic to kill it, but they do not like to give antibiotics because it could just be a virus. Well my neurologist says if I have an infection I need an antibiotic because its dangerous. Regular doctors do not understand CIDP and so I feel like I am stuck with a disease that no-one understands. I have a pain management doc who is great when it comes to my back pain. It is hard to find someone to deal with the rest of it. When I tell doctors I don’t need another x ray or another visit with a sinus specialist they think I am being snotty, no I can’t afford to keep getting tested and have it show nothing. Anybody else?

    • Anonymous
      January 28, 2011 at 10:20 am

      I have experienced the same misunderstandings with my family practice clinic and my Ear, Nose, and Throat doctor. I even brought information about CIDP to my family practice clinic. Yes, I suffer from chronic bronchitis and chronic bouts with sinusitis. I have always had allergy problems, but never had chronic bronchitis/asthma until 2006. In fact, I rarely had a cold. Now I get bronchitis every time I get a cold. It is terrible!!! The hardest thing to clear is my sinus problem. It takes forever to get rid of it. And I probably keep some infection there between the obvious bouts of upper respiratory infection. The doctors think that it is not necessary to give me antibiotics when I am not running fever (I rarely do) and my white cell count does not change even if I have an infection. Both of these diagnostic methods are not necessarily good indicators of infection on people like us with weird immune systems.

    • Anonymous
      January 28, 2011 at 10:59 am

      Very interesting…the frequency of sinus problems and CIDP, or just by themselves.

      I, too, have horrible sinus problems. I’ve had two surgeries in the past 5 years: the first included cleaning/scraping out my ethmoid sinuses, reducing the size of my turbinates, and a septum correction. It had a large “spur” on it that was creating a problem. The second time, which was in the spring of ’09, consisted of re-doing my ethmoid sinuses, another septum repair, and, surprisingly, the removal of “dozens” of polyps from my sinuses. I was reassured that Nasal Polyps are not like colon polyps, and they rarely progress into cancers, but they DO interfere with your breathing. I have 3-4 sinus infections per year, typically, and they are hard to fully control.

      I’ve also been diagnosed with Meniere’s Disease, about ten years ago, which causes severe vertigo, hearing loss, etc.

      The interesting thing about all of this is that about a year ago, I had another bout of what I thought was a sinus infection. Went to my GP, and after about three or four rounds of antibiotics, went to my ENT for further examination. He looked around, “scoped” me, did a CT scan, and an audiology test, and flabbergasted me with his prognosis: He said that it was his opinion that I never had Meniere’s Disease. He said that while he could see a lot of inflammation and swelling, signs of mild infection, etc., there was no “cause” that he could see. No blockages, etc.

      He told me that it was his opinion that I have a “Paranasal Neuropathy”, an extension of the neurologic symptoms throughout the rest of my body, and that the symptoms I started having ten years ago were probably the start of this entire process. WOW! He said my audiology results weren’t at all typical for a Meniere’s type hearing loss.

      I mentioned this to a “big-wig” neurologist, and his haughty response was, “Para-Nasal Neuropathy?? I’ve NEVER EVEN HEARD of such of thing!!”. And he’s one of the “best” in the state????? I wanted to tell him to check out the website of his alma mater, Mayo, because they have a page about it… :rolleyes:

      So, again, like I said in the original post of this thread…I guess it could be related, or it could be its’ own problem; I’ll probably never know. They way things are going for me now, the best bet I have for knowing what’s really wrong with me will be to die and hope they discover it during an autopsy. Course, by then, I won’t really care anymore, will I??:p