Hey there Ken_PA.
I was off to check out something I thought about but actually came across something else you may already know about. I was going over my labs again. There is a component called "immature platelet fraction" and one called "immature granulocyte absolute". Mine are off but my other blood results look normal.
Do you know about these components?
I have been told that some numbers really only matter when others are off, but I don't know if these components fall into that category.
* did take "note" though ... not "not" phhh
I am sure you figured that out.
Gotcha. Prob irrelevant.
"AFAIK, POTS from CFS can be particularly intransigent." ??? LOL
Anyway, you are probably right about the connective tissue disorder and I will come back and tell you what I think nails it in a bit, after I double check some info.
Was pain free for 2 days! Praises! But it's back, the shooting pain in the left side & upper quad. Like someone is stabbing me. Kinda funny walking through the grocery store (from others' point of view I am sure)/
I thought my relief may have been coming from being on the abx, and perhaps it still is, as the "punched in the stomach" feeling is still gone. Praises, again!
I did take not though, yes, the breathing issue surfaced very briefly as these sharp pains did also...what was that connection?
I also noted:
1) I had left my vitamins and mineral supplements out for a couple days (during the time I was pain free),
2) I bought and started a jug of Kefir to ward off any yeast infections, last night (sharp pain returned last night)
and
3) my hormones are changing for the month (which seems to correlate with the intensification of the ab issue for the last 2 months, this being month 3.
Just thought I'd share that change. Interesting.
Like I said I will return when I look at another detail that may be of connection to this, pun intended :)
total volume, I'd guess
I'd have to say that I really don't know
OK, I will have to check back w/ Medhelp tomorrow BUT....
"Maybe that's because people with CFS tend to urinate a lot. A very lot, so they can't build up circulatory volume to counteract the POTS."
Does this mean in frequency? Volume per trip? Or both or either?
AFAIK, POTS from CFS can be particularly intransigent. Maybe that's because people with CFS tend to urinate a lot. A very lot, so they can't build up circulatory volume to counteract the POTS.
Fludra is a corticosteroid with strong mineralacorticoid properties yet not so srtong glucocorticoid properties, so AFAIK that's why it's the drug chosen for POTS.
The salt thing actually works, don't know about the others, will have to explore...THANK YOU AGAIN!
Fun tid bit: I stayed awake for my hernia surgery. I didn't like the sounds of anesthesia. So the surgeon agreed to a saddle block and told me jokes through the surgery. Very interesting experience.
Yes to POTS!... hate it. No, had not thought of EDS but am still trying to understand that :) Yes, to joints (I swear people are going to think all the wrong things about my posts). Yes, to Reynauds symptoms. My surgery when I was a teen, this issue I had remembering back to age 11 was a hernia, inguinal, commonly occurs in males....and disappears if one is lying down...so docs overlooked it and would not believe me when I said I have a "big lump". Had to read medical encyclopedias to figure it out and bring my findings many docs, finally to a female doc who didn't believe me so I asked to see the male doc of the practice and he made me cough (ha ha) and he said, "well, I'll be ". I said "oh man!" He said, "what?" I said, "I was right wasn't I? and now I have to have surgery." But at least it was fixed :) ...have always considered I might have connective tissue issue :) Gonna change my name to "tissue issue"
Not so sure it's solved BUT you sure have made some head way!
scratch "eventration" which is a hole/window opened through the diaphragm, and would have shown on a scan --- but maybe the underlying process is related to adhesion formation
Does a connective tissue disorder fit with your early surgery?
Well now, "buzzed", what if I said that after hearing about the cysts, I went to looking at a syndrome which I'd heard about as relating to mystery immune system conditions (such as Chronic Fatigue Syndrome) and even lack of balance, and on looking at a certain web page about it I suddenly see: "Vibration sensation is normal".
Is the case solved? Have you ever been evaluated for Ehlers Danlos Syndrome? Or other connective tissue disease?
http://www.ncbi.nlm.nih.gov/books/NBK127n9/
If you have very mobile joints, that is a big clue. But that's not even necessary, since there are some types without it.
Associated are also the cysts, GI disturbances, diaphragm (https://www.***********/groups/ehlers-danlos-national-foundation/discussion/weak-diaphragm/)
Do you have orthostatic intolerance and/or POTS?
I do believe that there generally is a huge amount of hype about vit D, but then maybe for people with EDS it's not hype. Well, here is one that mentions the word puzzle: "Her vitamin D is 39.8. Obviously, that is much, MUCH better than the 6.1 that she was at in September and better than the 25.9 level in November. But, it is still not high enough and she seemed to make more progress in the first 2 months of vitamin D supplementation than she has in the last 5 months. Is it the whole cause of her fatigue? In light of the other blood work, I rather doubt it but it is likely an important piece of the puzzle." http://slingsandarrowsofoutrageousfortune.wordpress.com/2013/04/24/blood-work-results/
Maybe taking a lot of D resulted in your case with fibrous tissue and adhesions being created in the diaphragm, "eventration"
( http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1553023/ )
Now, this just talking of a wide ranging 'syndrome' with lots of non-specific symptoms and so isn't conclusive, but AFAIK there are conclusive genetic tests. You'd also maybe see a family pattern, which even includes Raynaud's syndrome (possibly autoimmune)
So, have you thought of EDS? This story is suspenseful now :)
Thanks for the laugh! Yes, you are very right about the docs willingness (or lack thereof) to really try to solve mysteries...and I understand they only have so much time. But, man! The specialist will gladly run one through the ringer of special (EXPENSIVE) tests that wind up showing no thing.
As for vit. D-- I didn't intentionally avoid the sun. I actually lived on an island for 3 years that 'should' have been very sunny, enter the adjacent active volcano creating a VOG (volcano smog) which frequently fell on our atmosphere and blocked the sun from shining on us :( and when the sun did get through then of course we are told to slather on the sunscreen. I am not really a milk drinker so I didn't get it there either and I paid too much attention to the over reactive warnings about overdosing on vitamin D, so I didn't supplement. LESSON learned.
It is very possible that all this is nerve related as I also have another crazy condition that docs like to say should be asymptomatic, that is the Tarlov cysts down my spinal cord. I have one very large one at the base of my cord, which I know IS symptomatic and has been for years. And recently found out there are several more in my cervical spine along with some other pretty gnarly damage. So, at very least I am sure they don't help matters much.
I don't recall a very bad cold . Yes, I do have pain in my ears as well as a much annoying crackling, often. But the ENT said my ears looked fine and he couldn't understand why I was hearing crackling, LOL. (crazy lady who hears things in the chair!) He was the one who explained the balance issue thing to me and encouraged me to have my back looked at, hence the cervical spine findings.
"Do periods of the diaphragm pain correlate with that breathing feeling?"
I will now be paying very close attention to this to try to answer that because I am not sure.
I have dealt with odd neuropathies for many years in addition to joint pain and started suspecting Lyme (b/c for a time I was room mates w/ my adult son who was an arborist who brought home deer ticks--not on purpose--, also spend time at my dad's who practically lives in the woods--now deerstalker caps!).
I refused to listen to docs who would say "possible MS" (mostly b/c I didn't trust anyone to stick a needle in my spine). Brain MRI came up no lesions (or as I like to joke "showed nothing in there").
AND, you know what? I was soooo joking before but...True story: since my surfing episode has returned I really have NOT been in abdominal pain. Maybe my cysts are taking turns inflating and deflating and just wreaking havoc on which ever nerves are there.
All kidding aside, I think God is trying to tell me just to trust him on this, but my mind doesn't like to give up on solving a mystery. What can I say?
Okay, then deerstalker caps all around :) Most docs more or less try to assign things to known categories, but don't have the time (or inclination) to try and figure out mystery conditions logically.
Had you mostly been avoiding the sun? Are you vegan? In other words why did you have the vit D deficiency...
Looking back, did your problems start wit a very bad cold? (post-viral syndrome) Do you sometirnes get pain the ear canals?
Do periods of the diaphragm pain correlate with that breathing feeling?
I think that the seesaw thing you talk about might be key.
Or everything might relate to that condition at 11.
I guess I didn't see it as flippant because I also view this as a great detective story, LOL. (myabe sometime I will share a story about how I had to self diagnose beginning at age 11 and it took me almost 5 years of reading medical books and going to doctors, to finally get my surgery at I needed at age 16) It really is like solving a mystery. And I love a good puzzle, just would rather they be in some other medium rather than my body :) I am actually thrilled that someone "out there" views it that way. And YES I have had some breathing issues, varied...sometimes almost feeling like asthma (that is if I had to guess what asthma feels like) and at other times I have just had this strange little thing that only happens when I exhale, almost like the air is escaping to somewhere else momentarily. Hard to describe. I tried to tell that to a doc one time a couple years ago and she looked at me like I was Keeerazy, but I fired her because she thought I was drug seeking and didn't listen to most of what I was saying to her. That was before I found out about the D deficiency and was also experiencing a lot of MS like neuro symptoms (most of which have gone away w/ vit D increase). That was back when I very first experienced the breathing issue. it was very mild and it went away for a long time for no real explained reason. It has returned off and on since I have been experience the digestive issues. I have also considered the leaky gut thing, surely. But honestly it's as though the healthier my choices have become is when I have become sicker. I told a friend not long ago that it seems I have made myself sick by trying to be healthy.
Here are a couple other pieces for you if you'd like: I have been dizzy w/ vertigo and balance issues for just over two years. I say "dizzy w/ vertigo and balance issues" because when you read about each of those they all have their own characteristics and I have them all. BUT wait. They ALL temporarily subsided when the abdominal thing came on. It literally made me consider that I may have had some kind of blockage somewhere that moved. Today, my dizzy vertigo balance issue returned, while at work of course. Maybe my digestive issues will stop now, LOL...(I SWARE I am not making any of this up!) But I am now sitting here laughing at myself! I think am amused at my own story! Oh well, we must keep a sense of humor, otherwise what?
Well, you are having the medical problems including the pain and I was seeing it as an interesting detective story to figure out... that might have come across as being flippant.
You know, leaky gut is known to lead to "brain fog". I believe there is also such a thing as increased permeability in the lungs, which of course are next to the diaphragm. Have you had any breathing problems?
Could be my brain has permeability too (I prob shouldn't joke about that)... you lost me on the "flippant"... and which "story", but of course I also need to be sleeping, lol which can't help. Thanks again for all the input, valuable...flippant or not :)
Sorry, I didn't mean to be flippant. What I'd meant is that there is a good possibility of figuring things out.
It'd be good to have kefir while taking the abx.
Speaking of gut dysbiosis, you hopefully know that when a person has increased intestinal permeability, they can in effect be allergic to most foods.
This is an interesting story :)
Reading this article on inflammation of the diaphragm. FASCINATING! Trying to grasp it and understand the nerve relation as my cervical column AND roots are pretty messed up, when I say messed up, I MEAN messed up....maybe a connection. Or maybe not, LOL. Either way...THANK you for such a fascinating find!
Wow, interesting stuff. Thanks, will be reading on this. It totally felt like the D was related somehow but hard to tell. And I have learned that the vit. D def effects immunity. So many possibilities. Cat Scratch possible in past too. Just came back from woman's wellness, P.A. totally open to the possibility of overlooked infection. Antibiotics start tonight. As for milk I did get rid of it for more than 3 days. I don't usually drink it and being that this all happened (also) after I had discovered kefir I certainly considered a sensitivity developed. Heck maybe my body just couldn't take so many things different at one time. I had changed a lot of things in a short period there: D levels, added kefir to diet, increased protein (to prevent muscle loss), etc. I had even added some grass fed organic ground beef that week and considered perhaps I had undercooked it, but the stools tests seem to have come back normal. Oh, I need to call about the final test now before they close. But there's the most current up date. I love the doc I just went to, she was VERY attentive and seemed to really be willing to try to help me figure things out. Will update on how the antibiotics do and any new 411.
Thanks TONS again for input!!!!!
Maybe you had cat scratch fever in that node in times past.
I assume you've eliminated dairy for 3 days or so, as a shot in the dark.
Here's one from 1930 in diaphragm inflammation:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2452729/?page=1
Maybe the vit D acted as an anti-inflammatory, which actually weakened immunity. there's a researcher named Trevor Marshall, MD who has that theory, anyway.
Hi and THANKS for your input! I am renting a room in a large house where cats live in the basement, I am allergic to cats so I generally don't come into contact with them, unless one is especially cute and friendly and then wash up real fast. But I haven't touched these cats or any for a few years now. I did have outdoor cats that I LOVED when I was on an island for missionary work...4 years ago though.
Anyway, What you offer here makes a ton of sense! It is amazing what some thoughts and ideas from the "outside" can do when one is trying so hard to figure things out. Of course creating more stress for myself while contemplating all the possible causes does me no good! But it is very difficult to go through pain regularly, knowing that something internally has CLEARLY changed and stayed that way for more than 2 months with no diagnosis or help.
Interestingly enough all this stuff came on right after I got my vitamin levels back up to normal and was still suffering from some head, neck sinus congestion. Someone suggested I give myself some light lymph messages to try to eliminate the congestion which sounded great to me so I did it and BAM!
But of course there were other things going on as well. I had increased my protein intake pretty dramatically and was drinking a great deal of Kefir when all this happened, and can't say my stress level was low either. But to leave me with this amount of pain, inflammation, did I say pain, and irregularity for so long ???
I almost feel like I have an obstruction (whatever that feels like, lol) higher up, or a hernia (that I do know the feeling of since I had an inguinal hernia long ago) all the way across the diaphragm area. Anyway, guess that is for another message board :)
I do think it's a lymph node b/c it is just like one is described vs what my lipoma was like. and very well did get irritated from my messing with it. I have left it alone.
Thank you so much for your input, all sounds sensible to me.
Big blessings!
I won't mention just yet the downside, which is that CFS/ME and EDS (or something similar) are not well understood and so it's not exactly automatic to know what to do about them. But still, many many people have spent years getting to the diagnosis (told along the way that it's all in their head) and they feel tremendously relieved to finally know what is wrong. Besides... it's easier to know what *not* to do, like overexerting yourself - which can dig a much deeper hole.
Interesting about the surgery, your will and attitude will naturally enough be a big asset for you.
re POTS: have you tried lots of salt? Fludrocortisone? Graduated compression stockings?