Health and when you know something is wrong..

[tdbates78]

But nobody can figure out what it is. Sigh. Anyone else in a similar position? My health started going downhill almost 2 years ago. It started with use of antibiotics for an ear infection, and the antibiotics gave me SIBO. From there its been one thing after another. I've seen multiple GI doctors, a functional medicine Dr and a neurologist and of course my primary GP. Now I'm waiting on a referral for an integrative rheumatologist although at this point I feel like its going to be more tests that lead to no answers. I feel defeated and destined to just live with the pain and discomfort. Its depressing.

 

Sorry for being a downer. Sometimes it helps to just vent.

Edited June 7, 2017 by tdbates78

[Guest]

Yes, I hear you. I'm heading into year three of no answers.

 

I'm sorry :(

[gardenmom5]

yes - btdt, both for me and 1ds.  me - twice.  once a very serious chemical imbalance (the dr I went to at that time treated my like a hypochondriac - while I proceeded to just get worse), and another time thyroid, and my son had a pinched nerve in his spine.

 

antibiotics kill off all the good gut bacteria too - that can cause a lot of issues.  GI drs generally look at more structure and miss it.  have you ever done a long regime of good probiotcs aimed at restoring your good gut bacteria health?

[creekland]

Vent away.  BTDT and equally as frustrated, esp since in my situation there seems to be (via google) something relatively likely that they will not test for. I have not figured out why.  (They tell me it's because I don't have enough symptoms, totally ignoring that my family line rarely gets typical symptoms so we HAVE to go off a few that match.)  I guess it's a power struggle of sorts, but in those, we minions lose out.

 

I gave up.  I'll admit to wishing they had to live with what I live with, esp on bad days.  I have words too, but not fit to put on a public family board.

 

And if I'm honest, I don't really blame the doctors.  What I'm dealing with isn't super common and they've likely never seen it before.  They're super busy and don't have time to look into things outside the box.  This has made me wish I could take charge - get tests done, get results, and then take those results to whoever they need to go to and say "this, fix this!"  I can put up with 100 "not this" results to find the "this is it" one.  They've checked for two common things and said "enough is enough."  I suspect they've also put a "hypochondriac" label on my chart. (sigh)

 

So I'm done.  I'll either live long enough that middle son can graduate from med school and find me contacts to overcome that hurdle or I won't - either via whatever "it" is or "it" driving me crazy.  Time will tell.

 

And yes, it's incredibly frustrating.  You can sympathize here.

[bethben]

Some antibiotics can cause some long term issues with joints and nerve damage besides just having gut issues.  I would google the antibiotic you used.

[cjzimmer1]

Vent away.  BTDT and equally as frustrated, esp since in my situation there seems to be (via google) something relatively likely that they will not test for. I have not figured out why.  (They tell me it's because I don't have enough symptoms, totally ignoring that my family line rarely gets typical symptoms so we HAVE to go off a few that match.)  I guess it's a power struggle of sorts, but in those, we minions lose out.

 

I gave up.  I'll admit to wishing they had to live with what I live with, esp on bad days.  I have words too, but not fit to put on a public family board.

 

And if I'm honest, I don't really blame the doctors.  What I'm dealing with isn't super common and they've likely never seen it before.  They're super busy and don't have time to look into things outside the box.  This has made me wish I could take charge - get tests done, get results, and then take those results to whoever they need to go to and say "this, fix this!"  I can put up with 100 "not this" results to find the "this is it" one.  They've checked for two common things and said "enough is enough."  I suspect they've also put a "hypochondriac" label on my chart. (sigh)

 

So I'm done.  I'll either live long enough that middle son can graduate from med school and find me contacts to overcome that hurdle or I won't - either via whatever "it" is or "it" driving me crazy.  Time will tell.

 

And yes, it's incredibly frustrating.  You can sympathize here.

I don't know what kind of test you are looking at but there are quite a few available from the labs online places.  We've done that when we wanted something tested and the doctor wouldn't order it.  In our case it was some hormones but there is a pretty extensive list of things that can be done.  I would google something like online blood tests.  There are quite a few companies that offer this.

[tdbates78]

Thanks ladies! It sounds like a common occurrence, unfortunately. You start to wonder if you are going crazy!

 

I can't take probiotics. They make the SIBO worse. I've had chronic constipation since I was a young child and have been diagnosed with IBS-C for 20+ years. I think the antibiotics just set of a chain reaction. I'm convinced I have some sort of autoimmune issue but we can't figure out what as so many symptoms overlap. So my GP told me it must be fibro and gave me Elevil, probably because he didn't know what else to do. I do *not* have widespread body pain (more localized to my lower spine/hips/legs) and I'm not convinced it's fibro. The Elevil made me so incredibly loopy, and wasn't helping, so I stopped taking it awhile back. I do appreciate his willingness to try to help. I think he is just at a loss as well. 

 

My functional MD ran a full blood panel, stool test and the DUTCH dried urine test. Those gave us some answers, but nothing definitive. And his visits are entirely out of pocket so I had to stop going. He was sure it was hypothyroid, but even by his standards my thyroid results were "optimal", in his words. 

 

So sorry for everyone in the same boat. It's exhausting. Prior to this I just assumed that a) you don't feel well, b) you go to the doctor and within a short period of time c) results. I've kind of lost all faith at this point. Of course googling just drives me nuts but it's a sad obsession of mine in my constant quest to figure out what is going on. 

 

Hugs to you all!

Edited June 7, 2017 by tdbates78

[gardenmom5]

can you eat pickled and fermented foods?

fresh veggies with the peel on them? (there's "good bacteria" in good garden soil that is supposed to come in on our food.)

 

and for your thyroid, define "optimal"?

for the thyroid itself, the rec'd labs are:

free t3

free t4

reverse t3

 

- tsh is a pituitary hormone,, not a thyroid hormone. (but that's the only thing more drs will run.   totals are completely worthless - which is what my dr ran after repeatedly nagging her to run my frees.  I found a new dr.)

here's the long and pathetic list of thyroid symptoms put together by thyroid patients;

https://stopthethyroidmadness.com/symptoms/

anything sound famliar?

suggested labs are:

https://stopthethyroidmadness.com/recommended-labwork/

 

 

[tdbates78]

can you eat pickled and fermented foods?

fresh veggies with the peel on them? (there's "good bacteria" in good garden soil that is supposed to come in on our food.)

 

and for your thyroid, define "optimal"?

for the thyroid itself, the rec'd labs are:

free t3

free t4

reverse t3

 

- tsh is a pituitary hormone,, not a thyroid hormone. (but that's the only thing more drs will run.   totals are completely worthless - which is what my dr ran after repeatedly nagging her to run my frees.  I found a new dr.)

here's the long and pathetic list of thyroid symptoms put together by thyroid patients;

https://stopthethyroidmadness.com/symptoms/

anything sound famliar?

suggested labs are:

https://stopthethyroidmadness.com/recommended-labwork/

 

I try to eat fermented and pickled foods when I can. I make my own pickled cucumbers. I tried Prescript Assist, a probiotic made with soil, but that was awhile back. Maybe I should try it again.

 

I am out of my element with these thyroid numbers so I will just give them to you, if that's okay, because I'm not entirely sure what they mean. This was taken last May, so just over a year ago. I will put the reference range in parenthesis 

 

TSH - 1.14 

T4 Total - 6.3 (4.5 - 12.0)

Free T4 Index - 2.1 (1.4 - 3.8)

T4, Free - 1.3 (0.8 - 1.8)

T3, Free - 3.3 (2.3 - 4.2)

T3, Total - 100 (76-181)

T3 Uptake - 34 (22-34%)

T3 Reverse - 15 (8-25)

Thyroglobulin Antibodies - <1

 

I did have low ferritin and vitamin B and D levels, so the doctor had me on supplements for those. In looking at the list of symptoms, I would say I have easily 50% or more of them. Not across all areas, but in many of them. I can't respond about the menstruating portion because I've been on an IUD since my girls have been born and haven't had a period since before pregnancy. 

 

 

 

 

Edited June 7, 2017 by tdbates78

[gardenmom5]

I try to eat fermented and pickled foods when I can. I make my own pickled cucumbers. I tried Prescript Assist, a probiotic made with soil, but that was awhile back. Maybe I should try it again.

 

I am out of my element with these thyroid numbers so I will just give them to you, if that's okay, because I'm not entirely sure what they mean. This was taken last May, so just over a year ago. I will put the reference range in parenthesis 

 

TSH - 1.14 

T4 Total - 6.3 (4.5 - 12.0)

Free T4 Index - 2.1 (1.4 - 3.8)

T4, Free - 1.3 (0.8 - 1.8)

T3, Free - 3.3 (2.3 - 4.2)

T3, Total - 100 (76-181)

T3 Uptake - 34 (22-34%)

T3 Reverse - 15 (8-25)

Thyroglobulin Antibodies - <1

 

I did have low ferritin and vitamin B and D levels, so the doctor had me on supplements for those. In looking at the list of symptoms, I would say I have easily 50% or more of them. Not across all areas, but in many of them. I can't respond about the menstruating portion because I've been on an IUD since my girls have been born and haven't had a period since before pregnancy. 

 

starting with the thyroid:

there are quite a few that aren't useful.  and yes - you are hypo.

your free t3 is not optimal  (should be minimum of 3.7 - preferably a little bit higher than that.)

your reverse t3 is on the high side.  do NOT take synthroid/levo/other synthetic t4.  it will drive the rt3 even higher - and that is a bad thing  and make you feel even more hypo.

t3 is what your body actually uses

t4 (most common thyroid rx) is a storage hormone that is supposed to convert to t3 as needed.  if there are issues converting (*very* common  in hypothyroid patients) - it will drive up your reverse t3.

https://www.excelmale.com/attachment.php?attachmentid=1254&d=1427001686

 

 

 

 

there are four iron labs.

here are the other rec'd labs - including the four iron labs, and why they rec all four - and not just ferritin.  low iron can cause absorption/conversion problems and lead to a higher rt3.

https://www.stopthethyroidmadness.com/images/STTM-graphic-Labs-which-thyroid-patients-found-invaluable-1.png

https://www.stopthethyroidmadness.com/images/STTM-Graphic-Recommended-Labwork-A.png

 

 

there are two vitamin d3 numbers. (joy. . . )

you want a MINIMUM of 50 on the standard d3 numbers. (it used to be 30 - when the usrda came out - it was even lower, which is why the usrda of d3 is STILL only 400ius when they thought it was only linked to strong bones and teeth - which is a d3 level of 7.)  the NDs we see, prefer 70 - 80.

 

and unless your insurance is paying for the rx of d3 (or giving you a heck of a discount) - you can easily buy it over the counter.  the quality of the oil used as a suspension will affect how easily it is absorbed.  the most easily absorbed is in olive oil/similar - and contains k2, in drop form.  next is gel-tabs.  (I use now 5,000ius) do not bother with a tablet.  waste of money.

 

2dd (pharmd) and I discussed this (came up in one of her classes) - d3 is undergoing reclassification as a hormone because of how many systems rely upon it to function even at a basic level, let alone optimal level.

 

do not take d2.  (there are still some drs who rx it, but it won't raise your numbers long-term.  and any dr who does prescribe it - should be fired as it is now so standard to only do d3 - but again, there are drs who will use d2 so I'm throwing it out there.)

[Spryte]

Lots of sympathy here. I went years and years without answers. It is so hard to keep trying, but don't give up!

[tdbates78]

starting with the thyroid:

there are quite a few that aren't useful.  and yes - you are hypo.

your free t3 is not optimal  (should be minimum of 3.7 - preferably a little bit higher than that.)

your reverse t3 is on the high side.  do NOT take synthroid/levo/other synthetic t4.  it will drive the rt3 even higher - and that is a bad thing  and make you feel even more hypo.

t3 is what your body actually uses

t4 (most common thyroid rx) is a storage hormone that is supposed to convert to t3 as needed.  if there are issues converting (*very* common  in hypothyroid patients) - it will drive up your reverse t3.

https://www.excelmale.com/attachment.php?attachmentid=1254&d=1427001686

 

 

 

 

there are four iron labs.

here are the other rec'd labs - including the four iron labs, and why they rec all four - and not just ferritin.  low iron can cause absorption/conversion problems and lead to a higher rt3.

https://www.stopthethyroidmadness.com/images/STTM-graphic-Labs-which-thyroid-patients-found-invaluable-1.png

https://www.stopthethyroidmadness.com/images/STTM-Graphic-Recommended-Labwork-A.png

 

 

there are two vitamin d3 numbers. (joy. . . )

you want a MINIMUM of 50 on the standard d3 numbers. (it used to be 30 - when the usrda came out - it was even lower, which is why the usrda of d3 is STILL only 400ius when they thought it was only linked to strong bones and teeth - which is a d3 level of 7.)  the NDs we see, prefer 70 - 80.

 

and unless your insurance is paying for the rx of d3 (or giving you a heck of a discount) - you can easily buy it over the counter.  the quality of the oil used as a suspension will affect how easily it is absorbed.  the most easily absorbed is in olive oil/similar - and contains k2, in drop form.  next is gel-tabs.  (I use now 5,000ius) do not bother with a tablet.  waste of money.

 

2dd (pharmd) and I discussed this (came up in one of her classes) - d3 is undergoing reclassification as a hormone because of how many systems rely upon it to function even at a basic level, let alone optimal level.

 

do not take d2.  (there are still some drs who rx it, but it won't raise your numbers long-term.  and any dr who does prescribe it - should be fired as it is now so standard to only do d3 - but again, there are drs who will use d2 so I'm throwing it out there.)

Wow. Thank you for taking the time to respond. You've given me more information on my thyroid numbers than any of the doctors I've tried talking to about it. My Vit D, 25-OH, Total, was 40 which my FMD agreed was functionally low. 

 

I'm not sure what to do now? If I go back to my regular GP for another test (this one is over a year old) he probably won't do the full test and will focus only on the TSH (btdt with him). It looks like I can order the tests myself. If the results still show hypo is there something I can take OTC or should I find another FMD to work with that will treat? 

 

Many of my symptoms (stiffness and pain in my lower back , buttocks, pelvic area, legs and sometimes feet, which gets better with some movement and will get worse overnight and in the morning. lumps and pitted nails on my thumbs, neuropathy in my hands and sometimes my feet) seem to fall in line with some arthritic conditions (ankylosing spondylitis, RA and/or psoriatic arthritis, although I do not have psoriasis of the skin) which is why I'm going to see a rheumatologist. 

[Tiramisu]

Did you take any of these antibiotics?

 

ciprofloxacin (Cipro), gemifloxacin (Factive), levofloxacin (Levaquin), moxifloxacin (Avelox) and norfloxacin (Noroxin).

 

Flagyl can also cause nerve damage. I had to take it for a very long time and was afraid of this side effect.

 

I had pain for a few years and it wound up being allergies.

Edited June 7, 2017 by Tiramisu

[Jean in Newcastle]

I do not take Elavil for my fibro.  It gave me heart problems.  I take gapapentin which helps with neuropathy and pain in general.  I also take low-dose-naltrexone which helps the immune system.

 

Have you been checked for celiac disease?  Just asking because that blindsided us.  You don't have to have diarrhea to have celiac. 

[Jennay]

I can't take probiotics. They make the SIBO worse.

https://chriskresser.com/treating-sibo-cold-thermogenisis-and-when-to-take-probiotics/

 

I found this transcript that tells why some probiotics are bad for SIBO and which ones are better.

Also S. Boulardii is a beneficial yeast that I think can be helpful.

[SparklyUnicorn]

Currently dealing with crazy GI issues too.  It's frustrating.

 

Big hugs...

[heartlikealion]

Have you only seen mainstream doctors? I would consider a Naturopath.

[bethben]

Here is an article on some side effects of some antibiotics.  https://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/?_r=0

[Carol in Cal.]

Ack, Cipro really did a number on me, too.  Not this bad, though, but tendon pain that was very severe, and I'm glad I stopped taking it because from what I understand finishing the course could very well have caused permanent damage.  FWIW, I'm prone to outer ear infections, which was what this was prescribed for.  To prevent them, I never wear earplugs anymore.  I clip my hair back behind my ears most of the time to avoid creating that moist, warm environment that bacteria seem to love so much inside.  I pour straight alcohol into each ear every time I wash my hair--90% strength or higher (be sure to check--the idea is to get rid of water, so 70% alcohol which is 30% water is counterproductive).  I take 60mg of 'real' pseudafed every 4-6 hours during the day if I get ear pain anyway.  And I keep oflaxacin drops around, and treat my ear with them for 3 days when an infection gets past me--that hasn't happened in several years though.  I used to get them all the darned time.  But I will NEVER take Cipro again.

 

Re. probiotics--I have been following this issue for a while, because I have ocular rosacea and every once in a while must take antibiotics for two weeks to prevent repeated corneal erosions.  Of course, fecal transplants are starting to be studied, and I imagine that eventually they will be the standard of care after antibiotics.  But the other thing I have noticed is an increasing amount of question about whether probiotics actually get to your gut with any kind of reliability or serious dose.  The thinking is that the stomach environment is too acidic for them to survive in any reasonable quantity.  I don't know if I entirely believe that, as I know people who swear by them.  But anyway, an alternative is to eat a lot of raw veggies that are good substrates for bacterial growth and that are not digested into soup in the stomach.  That means high fiber things like celery, and I think cabbage, both raw.  So I have started to focus on eating a lot of those just in general, but especially after I have taken antibiotics.

 

For vitamin D I would suggest sun exposure--it's the season now when you can get a lot of D formation in North America.  There is a strong theory that D used to be stored in quantity in the body in the middle of the year, and then reserves would see people through the darker winters.  I don't know how practical it is to figure on that, but I personally have made it my goal to get a lot more sun this year than I normally do, specifically for that reason.

 

The other thing I would say is, once a set of syndrome issues get entrenched, like yours seem to have done, it can take a lot of time and patience to unlayer them.  There are NPs who will do a lot of tests and get you an overview of exactly what is functionally going on in your body, and recommend supplements or dietary or lifestyle changes to address them.  That's very useful information, although I don't think you can necessarily trust their remedies to work for you.  A lot of times people have to break that into stages, and go at the changes very slowly.  But I think that crowdsourcing information, like you're doing here, is also extremely helpful, especially since it sounds like you have some convoluting stuff going on. 

 

I'm sorry it's so complex and frustrating.

Edited June 8, 2017 by Carol in Cal.

[tdbates78]

Have you only seen mainstream doctors? I would consider a Naturopath.

I've seen a functional medicine Dr, which is an alternative medicine Dr. Mine is also a homeopathic chiropractor. I'm in all sorts of herbal supplements (oil of oregano, berberine, garlic with Allison, turmeric, digestive enzymes...). He is great but I spent close to a small fortune out-of-pocket so I stopped going.

[tdbates78]

I do not take Elavil for my fibro. It gave me heart problems. I take gapapentin which helps with neuropathy and pain in general. I also take low-dose-naltrexone which helps the immune system.

 

Have you been checked for celiac disease? Just asking because that blindsided us. You don't have to have diarrhea to have celiac.

I've had both a blood test and upper endoscopy come back negative. I choose not to eat gluten, but celiac was one of my first thoughts when everything went haywire.

[The Girls' Mom]

Not me personally, but my husband is going on year ten of some unknown chronic illness.  It is progressive, causes him to live in constant pain, makes him have sleep problems, fuzzy thinking, blurred vision, and he's had other "random" things like ruptured discs, a ruptured colon, a muscle tear, joint problems, bone spurs, and more.  He's an old man at 43.  We've seen countless doctors in two states, and no one has a clue.

 

It is frustrating and depressing.  I'm sorry you are going through this.  

[tdbates78]

Yikes the antibiotic stories are scary! I wish I remember what I took! I'm allergic to penicillin so I know it wouldn't have been in that family.

 

The diet issue is touchy. Due to IBS and SIBO I eat mostly low FODMAP, which means raw veggies and a lot of veggies for that matter are out. I ate some blackberries this evening, not realizing they are high FODMAP, and looked 6 months pregnant immediately afterwards. And due to the SIBO, and whatever else is going on, I have a ridiculous list of foods I no longer tolerate. No dairy, most grains and resistant starches, legumes, gluten, rice. These foods trigger bloating, spasms, back pain and sometimes rashes and flushes, so I'm thinking I have histamine issues as well. Yep, I'm loads of fun at a party!

 

My FMD did a stool test and put me on Ther-Biotic Complete, a probiotic, based on the good bacteria I am lacking, but I did not see much relief until I stopped taking them. I've also tried Align and VSL#3 with bad results.

[tdbates78]

Thank you all for responding. Its so incredibly frustrating and I appreciate being able to just let it out.

 

My symptoms are all over the place. From the GI issues I mentioned above, fatigue, brain fog, irritability, neuropathy (my hand keeps going numb just from typing this), joint and muscle aches, flushing and rashes, I lose my voice or it goes hoarse all the time, Raynaud's in my fingers...the list goes on. I've been tests for celiac, diabetes, thyroid, lupus, MS, carpal tunnel and who knows what else. I'm on my heating pad (sadly I refer to it as my BFF!) now because any kind of workout I do (I refuse to give in to this mess so I continue to work out 4-5 days a week) leaves me in pain, although I'm also in pain if I lay around too much, because my lower back is so stiff.

 

Anyways, thank you so much for listening to my sob story! For you all that posted that you, or a loved one, are going through a similar situation I understand and wish you the best of luck!

[Tiramisu]

Not me personally, but my husband is going on year ten of some unknown chronic illness. It is progressive, causes him to live in constant pain, makes him have sleep problems, fuzzy thinking, blurred vision, and he's had other "random" things like ruptured discs, a ruptured colon, a muscle tear, joint problems, bone spurs, and more. He's an old man at 43. We've seen countless doctors in two states, and no one has a clue.

 

It is frustrating and depressing. I'm sorry you are going through this.

This really sounds like Ehlers Danlos Syndrome.

 

There's a saying people use when talking about EDS: If you can't connect this issues, think connective tissues.

[Tiramisu]

Yikes the antibiotic stories are scary! I wish I remember what I took! I'm allergic to penicillin so I know it wouldn't have been in that family.

 

The diet issue is touchy. Due to IBS and SIBO I eat mostly low FODMAP, which means raw veggies and a lot of veggies for that matter are out. I ate some blackberries this evening, not realizing they are high FODMAP, and looked 6 months pregnant immediately afterwards. And due to the SIBO, and whatever else is going on, I have a ridiculous list of foods I no longer tolerate. No dairy, most grains and resistant starches, legumes, gluten, rice. These foods trigger bloating, spasms, back pain and sometimes rashes and flushes, so I'm thinking I have histamine issues as well. Yep, I'm loads of fun at a party!

 

My FMD did a stool test and put me on Ther-Biotic Complete, a probiotic, based on the good bacteria I am lacking, but I did not see much relief until I stopped taking them. I've also tried Align and VSL#3 with bad results.

 

The antibiotics that can cause these problems are not in the penicillin family and are prescribed to people who can't take penicillin or need a wide-spectrum antibiotic.

 

Flagyl is used for GI infections.

[tdbates78]

I'm not sure if I've ever taken Flagl. I took Xifaxin when I was first diagnosed with SIBO but that was a complete waste of time. I've managed to kick the SIBO several times by using herbal antibiotics but unfortunately it has upwards of a 90% recurrence rate. All of my other symptoms started around the same time that I developed the SIBO which is why I think they are at least partially connected.

[countrygal]

I don't have much time to type, but have you thought of taking your IUD out? That's where the pain is - in your pelvic area. I had constant pain (didn't change with my period) when I had a copper IUD - just generalized burning, aching in my lower back, hips, pelvis and it ran down my legs. Maybe your body decided to have an allergic or hypersensitive reaction to it for some reason. I just sort of felt sick and not right all over either. Mine took a few months to go away.

 

I, too, have had many frustrations with mainstream medical doctors. Most don't have answers :( Don't give up hope. I hope you can find out what's bothering you.

[creekland]

I don't know what kind of test you are looking at but there are quite a few available from the labs online places.  We've done that when we wanted something tested and the doctor wouldn't order it.  In our case it was some hormones but there is a pretty extensive list of things that can be done.  I would google something like online blood tests.  There are quite a few companies that offer this.

 

I wish I could figure things out just with blood tests as I can get those.  Mine is more of a mechanical nature though.  Just in case I do the multi-phasic blood tests our community hospitals offer super inexpensively twice per year - and everything tests out fine aside from higher cholesterol and total bilirubin.   Neither of those are super high, but high enough to be flagged.

 

My #1 guess is vascular (not cardiac) and that comes from hearing my pulse.  Google tells me if one hears their pulse it's either an ear issue (cyst, etc), tumor, or vascular.  The first two have been checked and ruled out (well, I have a tumor, but not one causing that issue).  So, silly me thinks they should move on and check out the third most common cause.  However, I'm told it can't be vascular because I don't get tired.  Case closed as far as they are concerned.  Fine.  So what's causing me to hear my pulse?  Sorry, can't explain that.  It must be due to the radiation you had (for that tumor).  Radiation docs say it's not.  Other docs say they are wrong.  I ask for vascular tests anyway to rule that out and get told no.  My thoughts don't count.

 

I think all other issues could be explained if there's a vascular cause - though I'm not sure TBH.  That's further outside the box, but again, could be checked by a test or two.  I have painful lumps under my left armpit that only came a year ago Nov.  Scans show nothing amiss, but people can FEEL these - not just me.  They must have always been there and are fatty tissue I'm told.  They weren't always there - ask hubby if you don't believe me - and they're painful - sometimes very painful.  Fatty tissue?  I don't buy it.  Perhaps, since it doesn't show up in scans, blood vessels have some play in it - esp since I have known blood vessel unusual issues in my hands that also hurt when they appeared out of the blue...  Those can't be related I'm told.  End of conversation.

 

I never get hungry.  Aren't you lucky(!) docs say.  Well yes.  Truthfully I like that, but I keep getting a nagging feeling that that's not right either.  My memory is going (could be old age, but...seems worse than my peers... and has been progressive). Ditto that with eyesight. Bladder control has its times.  Swallowing has been an issue at times.  Left trigiminal nerve is always numb (like after a dentist appt) and that often affects the upper jaw too.  Chest pains are variable - sometimes absolutely none - other times hubby (or the cat) can't even lightly touch places on either my chest or back opposite the chest area - then there are inbetween times too.  Parts of my neck around my throat have times where they hurt - not a sore throat - outside of that.  Back pain, numbness/tingling from not moving (like when asleep, sitting, or standing) are all normal for me at this point.

 

Lots of stuff.  Lucky me.  Maybe it's all old age (I turn 50 in a couple of months), but I'd rather see if there is a treatable cause first, esp for the painful things, and fall back on old age if nothing comes from the tests.  However, that choice isn't mine to make.

 

Thank you all for responding. Its so incredibly frustrating and I appreciate being able to just let it out.

 

I totally understand - different issues - same aggravation.  At least you have doctors willing to work with you.  Mine is all radiation or "stress."  I was told to eliminate stress.  I did.  I stopped the doctor appts.  Now if only the symptoms would go away or at least stop progressing.   :glare:

[tdbates78]

I wish I could figure things out just with blood tests as I can get those. Mine is more of a mechanical nature though. Just in case I do the multi-phasic blood tests our community hospitals offer super inexpensively twice per year - and everything tests out fine aside from higher cholesterol and total bilirubin. Neither of those are super high, but high enough to be flagged.

 

My #1 guess is vascular (not cardiac) and that comes from hearing my pulse. Google tells me if one hears their pulse it's either an ear issue (cyst, etc), tumor, or vascular. The first two have been checked and ruled out (well, I have a tumor, but not one causing that issue). So, silly me thinks they should move on and check out the third most common cause. However, I'm told it can't be vascular because I don't get tired. Case closed as far as they are concerned. Fine. So what's causing me to hear my pulse? Sorry, can't explain that. It must be due to the radiation you had (for that tumor). Radiation docs say it's not. Other docs say they are wrong. I ask for vascular tests anyway to rule that out and get told no. My thoughts don't count.

 

I think all other issues could be explained if there's a vascular cause - though I'm not sure TBH. That's further outside the box, but again, could be checked by a test or two. I have painful lumps under my left armpit that only came a year ago Nov. Scans show nothing amiss, but people can FEEL these - not just me. They must have always been there and are fatty tissue I'm told. They weren't always there - ask hubby if you don't believe me - and they're painful - sometimes very painful. Fatty tissue? I don't buy it. Perhaps, since it doesn't show up in scans, blood vessels have some play in it - esp since I have known blood vessel unusual issues in my hands that also hurt when they appeared out of the blue... Those can't be related I'm told. End of conversation.

 

I never get hungry. Aren't you lucky(!) docs say. Well yes. Truthfully I like that, but I keep getting a nagging feeling that that's not right either. My memory is going (could be old age, but...seems worse than my peers... and has been progressive). Ditto that with eyesight. Bladder control has its times. Swallowing has been an issue at times. Left trigiminal nerve is always numb (like after a dentist appt) and that often affects the upper jaw too. Chest pains are variable - sometimes absolutely none - other times hubby (or the cat) can't even lightly touch places on either my chest or back opposite the chest area - then there are inbetween times too. Parts of my neck around my throat have times where they hurt - not a sore throat - outside of that. Back pain, numbness/tingling from not moving (like when asleep, sitting, or standing) are all normal for me at this point.

 

Lots of stuff. Lucky me. Maybe it's all old age (I turn 50 in a couple of months), but I'd rather see if there is a treatable cause first, esp for the painful things, and fall back on old age if nothing comes from the tests. However, that choice isn't mine to make.

 

 

I totally understand - different issues - same aggravation. At least you have doctors willing to work with you. Mine is all radiation or "stress." I was told to eliminate stress. I did. I stopped the doctor appts. Now if only the symptoms would go away or at least stop progressing. :glare:

Seriously, do doctors realize how much they, themselves, stress us out? I am so sorry. That sounds miserable! It almost makes you just want to lie (yeah, sure, Im tired!) just to get the tests. I dont understand why rhey are so hesitant? Mine are the opposite, sending me for expensive test after expensive test, each with high out-of-pocket despite having good insurance, because they have no clue.

 

I did have a rather large lump removed under my right armpit in my early 20s. It actually ended up being breast tissue and Im glad I had it removed as it grew in size quite a bit before it was removed. Im surprised nobody is taking it seriously.

[tdbates78]

I don't have much time to type, but have you thought of taking your IUD out? That's where the pain is - in your pelvic area. I had constant pain (didn't change with my period) when I had a copper IUD - just generalized burning, aching in my lower back, hips, pelvis and it ran down my legs. Maybe your body decided to have an allergic or hypersensitive reaction to it for some reason. I just sort of felt sick and not right all over either. Mine took a few months to go away.

 

I, too, have had many frustrations with mainstream medical doctors. Most don't have answers :( Don't give up hope. I hope you can find out what's bothering you.

Funny you mentioned the mirena because I have plans to talk to my OB about having it removed at my annual exam tomorrow. Im not sure if it is any of the cause, but at least I could rule it out. I've read about some of the side effects others have had online and decided its time to go.

[Butter]

I started being really sick, after being a sickly kid, around 13.  My parents took me to lots of doctors over the years.  I had so many tests.  Some were very invasive.  End result?  It was all in my head.  Yup, I just "know my body too well" and notice things that other's wouldn't.  In other words, hypochondria.  My parents didn't believe it, but the internet was new so no Dr. Google yet and no doctor could help.  I could function.  I just didn't feel good.

 

Fast forward to my daughter getting really sick, after being a sickly kid, at about the same age.  A couple doctors tried the "in your head" thing, but I kept pressing and talking with people on-line who recognized symptoms and following every lead.  We got the first diagnosis for her in January of 2015 (Celiac).  Turns out I have Celiac and so does my father (and youngest son who is lucky that he'll be gluten free from a much, much, much younger age).  That helped, but not enough.  We finally got more diagnoses in March.  She's got POTS, Ehlers-Danlos, and Fibromyalgia.  I have mild Ehlers-Danlos which explains a whole lot.  And I'm lactose intolerant and sensitive to, of all things, red onions.  Those along with the previous Celiac diagnosis explains every problem I've ever had.  So it took about 26 years to figure out what was wrong with me and most of that was saying to the doctor "My daughter was just diagnosed with x" and the doctor testing me and saying "we know where she got it from."

 

So, yeah, I definitely know how it is to know something is wrong and no one being able to figure out what it is.  I also know all too well how horrible it is to be told you are crazy and there is actually nothing wrong with you simply because the doctor can't figure it out so it must be your fault, not theirs.

[creekland]

Seriously, do doctors realize how much they, themselves, stress us out? I am so sorry. That sounds miserable! It almost makes you just want to lie (yeah, sure, Im tired!) just to get the tests. I dont understand why rhey are so hesitant? Mine are the opposite, sending me for expensive test after expensive test, each with high out-of-pocket despite having good insurance, because they have no clue.

 

I did have a rather large lump removed under my right armpit in my early 20s. It actually ended up being breast tissue and Im glad I had it removed as it grew in size quite a bit before it was removed. Im surprised nobody is taking it seriously.

 

Lying (and/or crying) is what I've been "coached" to do by others (friends, etc) to be taken seriously.  I refuse.  I have standards I won't cross.  I'll ask, but I won't shrivel up and beg.  Life is not worth that.

 

One of my friend/co-workers is a breast cancer survivor.  Her doctor outright told her he sent her to get various tests at the drop of a hat, not because he thought there were other issues, but so she'd have a piece of mind knowing nothing else was wrong (and once, there was - it got fixed).  She checked to see if  I could get in with him, but without cancer, no.  Can't say I want cancer to be able to go that option TBH, but the attitude sure would be nice.  One would think a brain tumor and radiation would be enough to qualify for wanting piece of mind, but apparently not.  They just provide a nice "solution" to blame everything on (no test needed!) - even the radiation docs saying "no" doesn't stop that solution.

 

And yes, the underarm stuff really was my last straw.  If they won't fix things they can feel, how in the world am I going to get them to take my word on things they can't feel or see?   They're convinced those aren't there - that I'm a good storyteller or crave attention or who knows what.  Money isn't the issue.

 

The "good" thing is if I'm right and it's vascular, most of those aren't deadly - just annoying.  For those that are deadly - fine - that would at least solve my problems.  And who knows?  If these are vascular issues caused by radiation (possible - except a few of the symptoms predated radiation), then maybe my body will fix itself given more time.  I keep getting exercise (in spite of having breathing issues with some of that now  :glare: ).  I try to eat relatively healthy foods.  I continue on with life.  When I can't do that anymore, life ends.  Problem solved.

 

It could be worse.  I don't have joint pain (except after being still too long akin to what most folks get after driving too long or similar - just much more quickly).  When I was taking iron, I got introduced to that one.  UGH!  (So if that's one you or others have - you have my sympathy!)  I'm glad that one is gone now.  Ditto with getting tired.  I got that with taking iron.  It's gone now.  Both got better once I stopped the iron.  I'm thankful.  I was considerably concerned that things were taking a quick turn for the worse rather than the slow progression that is more normal.  It's quite nice being wrong once in a while.  ;)

[MaeFlowers]

But nobody can figure out what it is. Sigh. Anyone else in a similar position? My health started going downhill almost 2 years ago. It started with use of antibiotics for an ear infection, and the antibiotics gave me SIBO. From there its been one thing after another. I've seen multiple GI doctors, a functional medicine Dr and a neurologist and of course my primary GP. Now I'm waiting on a referral for an integrative rheumatologist although at this point I feel like its going to be more tests that lead to no answers. I feel defeated and destined to just live with the pain and discomfort. Its depressing.

 

Sorry for being a downer. Sometimes it helps to just vent.

 

:grouphug:  I am sorry you are going through this. At the very least, it sounds like your dr is listening and is willing to order bloodwork. (My last dr wouldn't even order TSH.) Hopefully, the wonderful ladies here can offer you some insight. It's quite sad that we can't even trust our drs.

 

Lots of sympathy here. I went years and years without answers. It is so hard to keep trying, but don't give up!

 

I've been thinking about you all week, Spryte. I hope you are feeling better!

 

I wish I could figure things out just with blood tests as I can get those.  Mine is more of a mechanical nature though.  Just in case I do the multi-phasic blood tests our community hospitals offer super inexpensively twice per year - and everything tests out fine aside from higher cholesterol and total bilirubin.   Neither of those are super high, but high enough to be flagged.

 

My #1 guess is vascular (not cardiac) and that comes from hearing my pulse.  Google tells me if one hears their pulse it's either an ear issue (cyst, etc), tumor, or vascular.  The first two have been checked and ruled out (well, I have a tumor, but not one causing that issue).  So, silly me thinks they should move on and check out the third most common cause.  However, I'm told it can't be vascular because I don't get tired.  Case closed as far as they are concerned.  Fine.  So what's causing me to hear my pulse?  Sorry, can't explain that.  It must be due to the radiation you had (for that tumor).  Radiation docs say it's not.  Other docs say they are wrong.  I ask for vascular tests anyway to rule that out and get told no.  My thoughts don't count.

 

I think all other issues could be explained if there's a vascular cause - though I'm not sure TBH.  That's further outside the box, but again, could be checked by a test or two.  I have painful lumps under my left armpit that only came a year ago Nov.  Scans show nothing amiss, but people can FEEL these - not just me.  They must have always been there and are fatty tissue I'm told.  They weren't always there - ask hubby if you don't believe me - and they're painful - sometimes very painful.  Fatty tissue?  I don't buy it.  Perhaps, since it doesn't show up in scans, blood vessels have some play in it - esp since I have known blood vessel unusual issues in my hands that also hurt when they appeared out of the blue...  Those can't be related I'm told.  End of conversation.

 

I never get hungry.  Aren't you lucky(!) docs say.  Well yes.  Truthfully I like that, but I keep getting a nagging feeling that that's not right either.  My memory is going (could be old age, but...seems worse than my peers... and has been progressive). Ditto that with eyesight. Bladder control has its times.  Swallowing has been an issue at times.  Left trigiminal nerve is always numb (like after a dentist appt) and that often affects the upper jaw too.  Chest pains are variable - sometimes absolutely none - other times hubby (or the cat) can't even lightly touch places on either my chest or back opposite the chest area - then there are inbetween times too.  Parts of my neck around my throat have times where they hurt - not a sore throat - outside of that.  Back pain, numbness/tingling from not moving (like when asleep, sitting, or standing) are all normal for me at this point.

 

Lots of stuff.  Lucky me.  Maybe it's all old age (I turn 50 in a couple of months), but I'd rather see if there is a treatable cause first, esp for the painful things, and fall back on old age if nothing comes from the tests.  However, that choice isn't mine to make.

 

 

I totally understand - different issues - same aggravation.  At least you have doctors willing to work with you.  Mine is all radiation or "stress."  I was told to eliminate stress.  I did.  I stopped the doctor appts.  Now if only the symptoms would go away or at least stop progressing.   :glare:

 

Some of your symptoms sound like chiropractic issues, specifically in the neck. If you haven't seen a chiropractor, I would consider it. Actually, I would only recommend an upper cervical specialist. I don't like chiro but these guys work differently and I've seen some amazing things.

[Lizzie in Ma]

:grouphug: :grouphug:

[creekland]

 

Some of your symptoms sound like chiropractic issues, specifically in the neck. If you haven't seen a chiropractor, I would consider it. Actually, I would only recommend an upper cervical specialist. I don't like chiro but these guys work differently and I've seen some amazing things.

 

Some do, but vascular fits better for most symptoms - even some I've forgotten to mention like verbal issues of putting the wrong word into sentences way too often - often enough for hubby to gently ask me if I'm aware of how often it's occurring and mention it's getting worse. (sigh)

 

I have contemplated a chiropractor, but I keep hearing way too many IRL horror stories and I'm more worried about making things worse.  I can live with the way things are.  It's annoying, esp on bad days (mental or physical) but I've gotten used to these and can still live my life without most others knowing anything is wrong - only the shortness of breath is something I can't hide and that requires others walking or working with me to see.  If it gets worse, I'm not so sure. 

[tdbates78]

Lying (and/or crying) is what I've been "coached" to do by others (friends, etc) to be taken seriously.  I refuse.  I have standards I won't cross.  I'll ask, but I won't shrivel up and beg.  Life is not worth that.

 

Agreed. I wouldn't do it either, as tempting as it is. It's ridiculous. You shouldn't have to even think about having to lie just to get results. I've been tempted to lie myself but my dignity and morals won't allow it. 

 

Fortunately my issues aren't life threatening either, even if they affect my quality of life. Sadly I've learned to live with a certain amount of pain and discomfort. HUGS to you!!!

[scrapbookbuzz]

I will certainly be praying for you! I know what it's like to wonder what's going on, and keep wondering, and freaking out a bit

because you have all these scenarios running through your head about what MIGHT be going on, but no definite answers.

I also know the relief that comes from finding a doctor willing to really listen to you, do any and every test necessary to get to the 

answers, and to finally have that answer. Sounds like you've been doing just about everything you can do and the doctors have let you

down or have wreaked havoc on your pocketbook. On the herbal side, you can do a lot of that research yourself, rather inexpensively.

Here are three of my personal favorites when it comes to describing herbs and symptoms, how they go together and how they can help you:

 

Healing Spices by Bharat B. Aggarwal, PhD   This book is AMAZING! Describes how the herbs in your kitchen pantry can help all aspects of your health,

how to use them in your cooking, and where to purchase them. Definitely check out the section on Black Cumin Seed (which is not the same as the cumin

found in Mexican food).

 

Rosemary Gladstar's Medicinal Herbs A Beginner's Guide  Probably the BEST beginner's guide to herbs I've seen. Show's you how to identify them and great

descriptions for what they do.

 

Rosemary Gladstar's Herbal Recipes for Vibrant Health  Goes more in depth on herbal recipes and concoctions that really DO "do the body good." The only advice in her books

I would avoid is about the Flower Essences. Other than that, there is some GREAT advice in here and the recipes are fairly simple, as well.

 

Feel free to PM me with any questions on those. I really do hope you find the help you need!

[creekland]

Agreed. I wouldn't do it either, as tempting as it is. It's ridiculous. You shouldn't have to even think about having to lie just to get results. I've been tempted to lie myself but my dignity and morals won't allow it. 

 

Fortunately my issues aren't life threatening either, even if they affect my quality of life. Sadly I've learned to live with a certain amount of pain and discomfort. HUGS to you!!!

 

Quite honestly, it is nice knowing others out there are going through similar things.  Misery loves company?

 

Well... it's not nice knowing others have to put up with issues, of course... but not being alone has its comforts.

[Greta]

But nobody can figure out what it is. 

 

 

:grouphug:  I had this weird situation several years ago now, where I felt light-headed, like on the verge of fainting, almost constantly.  It was a weird dizzy, brain-fog, "buzzed" kind of feeling, almost like I'd had too much too drink.  Over the course of ten months, I saw my regular GP, a doctor at urgent care, a neurologist (who did an MRI), and an ENT, and none of them had the first clue what was going on, because all the tests they performed (to the tune of a couple thousand dollars out of pocket, plus what our insurance covered) showed nothing wrong.  The last doc I saw, the ENT, referred me to a cardiologist, thinking maybe it was a circulation issue.  I'd had enough by that point, and I didn't go.  Despite the fact that all of those doctors said it couldn't have anything to do with the IUD that I'd gotten a few weeks before the symptoms started, with the help of Google I found out I was not actually the only woman to have that happen with an IUD.  It's rare.  So rare that it's not listed among the official side effects, apparently, but it does happen.  I had the IUD removed, and the symptoms were gone within a week.

 

On the one hand, I felt really stupid for spending all that money and having all those tests for nothing.  But on the other hand, if medical professionals couldn't figure it out, I guess I shouldn't beat myself up too bad for not figuring it out sooner.

 

Now I'm having some weird symptoms that sound like possible thyroid issues.  But my doctor insists that because my TSH is normal it can't possibly be thyroid.  I have an appointment with him later this morning, and I'm going to have to fight for more tests or a referral.  I'm dreading it.  Medical issues just suck.  I'm so sorry that you're going through this.

[Carol in Cal.]

Some do, but vascular fits better for most symptoms - even some I've forgotten to mention like verbal issues of putting the wrong word into sentences way too often - often enough for hubby to gently ask me if I'm aware of how often it's occurring and mention it's getting worse. (sigh)

 

I have contemplated a chiropractor, but I keep hearing way too many IRL horror stories and I'm more worried about making things worse.  I can live with the way things are.  It's annoying, esp on bad days (mental or physical) but I've gotten used to these and can still live my life without most others knowing anything is wrong - only the shortness of breath is something I can't hide and that requires others walking or working with me to see.  If it gets worse, I'm not so sure. 

If you can find a Directional NonForce chiropractor, I think you'd avoid the horror story issues.  These are EXTREMELY gentle, but not woowoo either.

[Jean in Newcastle]

I have been seeking answers for 30 years now.  I do have some answers.  I don't necessarily like the  answers since most of them are in the incurable, "we don't really know what causes it so we just try to manage it" category but it is what it is.  In 30 years I've given myself a medical degree (not really but I really should get credit for this) in my personal issues.  I have a team of doctors - six of them and was just told to add a seventh.  The reason for so many is because of specialties.  I don't see all of them all the time and hopefully some of them I won't see for years at a time.  There are three who keep very close tabs on me.  I go to the doctor every three months whether I have anything new going on or not.  And it's a good thing because that is what keeps me out of the ER and the hospital.  Before keeping such close tabs my kids had an ER routine, if that tells you how often I had to legitimately go to the ER for things.  Just yesterday I was at my 3 month visit and it was very well timed because I am having acute symptoms that needed immediate medical care.  Because things were already set up, it was easy to get me some pre-visit meds and to then address things at my appointment.  I'm still in distress but at least it's being addressed.

 

I have learned to choose my doctors carefully.  When I first met my new primary doctor (who I switched to about 7 years ago) he asked me what I wanted in a doctor.  I told him that I wanted someone to see me as part of the team.  I trust his training and expertise but I needed a doctor to understand that I have an even greater vested interest in what was going on with my own health.  I also told him that I wanted a bull dog - someone who wasn't afraid to admit when he didn't know the answers (since most of my problems are not immediately diagnosable) and to keep looking for answers until we found them.  He has not disappointed me.  We don't always agree but we respect each other.  On a couple of occasions I've placed wagers with him - if he would humor me and would agree to such oddities like  natural thyroid meds (vs. synthroid) for a period, we would do lab work and if it worked like I said it would, he would continue to prescribe it.  I won the wager. 

 

As far as dealing with the whole frustration of chronic illness thing, I have a two pronged approach.  I research a lot.  I don't trust "this cures everything including the kitchen sink" woo (though in desperation I've unsuccessfully tried a few of those "remedies" over the years) but I do look at both alternative and allopathic treatments and research.  I also believe that God has a plan for me that includes a chronic illness journey.  This will not be understood by someone who doesn't share my faith but it is part of my own personal approach to how I handle things.  I do believe that God has taught me a lot over the years through my particular journey and is continuing to teach me.  (I'm not looking to debate this.) 

 

In thirty years I've learned that doctors of any stripe or specialty still have an awful lot to learn about the human body.  There is a lot that we don't know.  And there are a lot of conditions that don't have cures.  Many times this is because they haven't figured out yet what definitively causes the problem and it's hard to find cures if you don't know the cause.  As frustrating as that is, I have learned to not blame the doctors for not knowing everything.  We do what we can to cure what we can and to manage what we can't cure.  Managing chronic illness for me personally means having to accept that there is a lot that I can't eat or do that "normal" people can eat or do.  It truly sucks but as I said before, it is what it is.  That may seem fatalistic but it is reality for those of us in the chronic illness community.  And it is a community - I've learned a lot from message boards that are specific to my health problems.  I don't ever post on them (unlike this forum ;) ) but I do read the btdt advice of people in my same boat and I take comfort from knowing that I'm not the only one facing these things and appreciate some of the tips that I've learned from them.  I also really like and take comfort from some of the dark humor memes found on chronic illness boards on Pinterest.  It helps to know that you are not alone and that others face the same struggles but refuse to give up. 

[Cindy in FL.]

I see a chiro that does Advanced Orthogonal techniques for upper cervical issues. He has a machine that uses sound waves to move vertebrae back into position. I didn't have high hopes at first, as it seemed a bit unbelievable to me, but it gives me immediate relief for the nerve related headaches I get. If I could just learn to manage my stress so that my muscles don't keep pulling my neck out of alignment, I'd be way better off.

 

Some do, but vascular fits better for most symptoms - even some I've forgotten to mention like verbal issues of putting the wrong word into sentences way too often - often enough for hubby to gently ask me if I'm aware of how often it's occurring and mention it's getting worse. (sigh)

 

I have contemplated a chiropractor, but I keep hearing way too many IRL horror stories and I'm more worried about making things worse. I can live with the way things are. It's annoying, esp on bad days (mental or physical) but I've gotten used to these and can still live my life without most others knowing anything is wrong - only the shortness of breath is something I can't hide and that requires others walking or working with me to see. If it gets worse, I'm not so sure.

[MaeFlowers]

Some do, but vascular fits better for most symptoms - even some I've forgotten to mention like verbal issues of putting the wrong word into sentences way too often - often enough for hubby to gently ask me if I'm aware of how often it's occurring and mention it's getting worse. (sigh)

 

I have contemplated a chiropractor, but I keep hearing way too many IRL horror stories and I'm more worried about making things worse. I can live with the way things are. It's annoying, esp on bad days (mental or physical) but I've gotten used to these and can still live my life without most others knowing anything is wrong - only the shortness of breath is something I can't hide and that requires others walking or working with me to see. If it gets worse, I'm not so sure.

I understand. FWIW, I am not a fan of chiropractic in general. I was raised that they were essentially con artists. The only reason I agreed to go was because people I was close to had major issues resolved (by this particular Dr.) It was helpful for me to a point. I dont believe it will fix everything, but the numbness/tingling sounds like something than can be helped.

[creekland]

I have been seeking answers for 30 years now.  I do have some answers.  I don't necessarily like the  answers since most of them are in the incurable, "we don't really know what causes it so we just try to manage it" category but it is what it is.

 

...

 

I don't ever post on them (unlike this forum ;) ) but I do read the btdt advice of people in my same boat and I take comfort from knowing that I'm not the only one facing these things and appreciate some of the tips that I've learned from them.  I also really like and take comfort from some of the dark humor memes found on chronic illness boards on Pinterest.  It helps to know that you are not alone and that others face the same struggles but refuse to give up. 

 

FWIW Jean, you're one of my inspirations.  

 

You have a lot more tolerance than I do with dr appts and tenacity to stick with it.  I get frustrated with the control issues.  I've been in charge of my life since birth (ok, since about age 11 when my parents got divorced).  I work well in teams, but not when it's my body and others opt to quit before it seems realistic to me.  I'm also not used to folks questioning what I say.  Clarification, sure, but total dismissal?  That leaves me steaming.  It would in any situation, but it just doesn't happen anywhere else in my life.

 

I've come to realize that (dismissal about what we say we're experiencing) seems to run in my family with my mom's situation.  (sigh)  As long as my end result isn't like hers. ("Oh wow, your "stress" is a rare terminal cancer - sorry about that!")  That thought has crossed my mind (undoubtedly due to her situation), but I remain hopeful it's just vascular.  I did ask her cancer doc if her cancer (esophageal) was genetic and was told no.  How she got it without being male, a smoker, or a drinker still eludes everyone though.  Lucky her.   :confused:

 

I understand. FWIW, I am not a fan of chiropractic in general. I was raised that they were essentially con artists. The only reason I agreed to go was because people I was close to had major issues resolved (by this particular Dr.) It was helpful for me to a point. I dont believe it will fix everything, but the numbness/tingling sounds like something than can be helped.

 

Perhaps, but that's honestly one of the easiest things to live with now since it's been there for 3+ years (predates radiation).  My body has literally gotten used to it and ignores it.  It's only super annoying when I wake up in the morning and it's at its worst due to the length of time I've been still.  It's bothering me now - feet to knees and higher - sitting here on the computer, but I didn't even think about it until writing this response.  One of the pluses to it all is our bodies seem to be able to adapt to "new normals," at least, as long as we're not in bad moods.  Then all bets are off.

 

The newer things bother me more - probably because they are newer and I'm not used to them yet.

[Jean in Newcastle]

FWIW Jean, you're one of my inspirations.  

 

You have a lot more tolerance than I do with dr appts and tenacity to stick with it.  I get frustrated with the control issues.  I've been in charge of my life since birth (ok, since about age 11 when my parents got divorced).  I work well in teams, but not when it's my body and others opt to quit before it seems realistic to me.  I'm also not used to folks questioning what I say.  Clarification, sure, but total dismissal?  That leaves me steaming.  It would in any situation, but it just doesn't happen anywhere else in my life.

 

I've come to realize that (dismissal about what we say we're experiencing) seems to run in my family with my mom's situation.  (sigh)  As long as my end result isn't like hers. ("Oh wow, your "stress" is a rare terminal cancer - sorry about that!")  That thought has crossed my mind (undoubtedly due to her situation), but I remain hopeful it's just vascular.  I did ask her cancer doc if her cancer (esophageal) was genetic and was told no.  How she got it without being male, a smoker, or a drinker still eludes everyone though.  Lucky her.   :confused:

 

 

Perhaps, but that's honestly one of the easiest things to live with now since it's been there for 3+ years (predates radiation).  My body has literally gotten used to it and ignores it.  It's only super annoying when I wake up in the morning and it's at its worst due to the length of time I've been still.  It's bothering me now - feet to knees and higher - sitting here on the computer, but I didn't even think about it until writing this response.  One of the pluses to it all is our bodies seem to be able to adapt to "new normals," at least, as long as we're not in bad moods.  Then all bets are off.

 

The newer things bother me more - probably because they are newer and I'm not used to them yet.

 

I've been at this for a very very long time.  I seriously have gone through all the stages of grief:  denial, anger, bargaining, depression, acceptance. I'm now in acceptance but I can go back to the beginning of the stages (or to an intermediate one) at any time.  To go back to something I alluded to in my previous post - my faith informs a lot of how I ultimately handle this.  There is a lot out of my control.  (I think this is true for many people in many different circumstances but I don't even have the allusion of control as far as big chunks of my life).  I can't control my body but I can control my attitude and I can control how I respond to the circumstances which God has allowed in my life.  I can also control certain lifestyle decisions :  diet, exercise (even when it's tough), even stress reducing activities.  So I control what I can. 

 

As far as doctors go, I have run into dismissal over the years.  I think that I'm in a much more urban environment than some but I fire doctors who dismiss me out of hand.  In a couple of situations where I could not dismiss them and had a critical need for help, I actually left the appointment, got my husband and went back.  It kills me to say this but in both of those situations they listened to my husband.  In both of those situations I was dealing with extreme pain which was taken as hysteria :glare:

 

In another example of controlling what I can, I take control of what I can of the medical environment.  I ask "how can we get this done"?  "What is the procedure/ protocol"? and other questions.  I just got off the phone for setting up a CT scan that was critical to get done but seemed to be falling into some kind of a black hole.  I called up the doctor's office, asked them to check on it's status, asked them to tell me the procedure for getting things expedited, got the required phone numbers, codes etc. and made it happen.  I'm not exactly chomping at the bit to get this done.  It is a gigantic pain in the you-know-what and will take time that I'd rather give to other things.  But I know that by controlling the situation I will have it done on my terms and I can get it over with and hopefully I will be that much closer to being able to do some more of the things I want to do.  I am judicious in how I do this.  I have at times purposefully dragged my feet on some appointments while I was busy trying some lifestyle things first.  I didn't want to waste my time going into an appointment to be told to do something that I could have just done on my own.  Then when/ if I went in I could tell them what I had already tried and what the results were.  What i don't do is to do nothing.  Doing nothing has never solved anything for me.   (Though obviously if someone has the flu or something you can do nothing and it will run it's course without any intervention.) 

 

Edited June 8, 2017 by Jean in Newcastle

[Carol in Cal.]

)  As long as my end result isn't like hers. ("Oh wow, your "stress" is a rare terminal cancer - sorry about that!")  That thought has crossed my mind (undoubtedly due to her situation), but I remain hopeful it's just vascular.  I did ask her cancer doc if her cancer (esophageal) was genetic and was told no.  How she got it without being male, a smoker, or a drinker still eludes everyone though.  Lucky her.   :confused:

 

 

GERD/reflux.  There are precancerous indications of this that can be viewed with a throat scope.  I have had GERD for years and that has never been suggested to me.  I've never pushed it either, maybe I should.

 

[Jean in Newcastle]

GERD/reflux. There are precancerous indications of this that can be viewed with a throat scope. I have had GERD for years and that has never been suggested to me. I've never pushed it either, maybe I should.

 

I believe it is called Barrett's esophagus. I have been checked - with a scope and a live x-ray that watches you swallow barium in real time.

[Tiramisu]

Is esophageal cancer not genetically influenced? Maybe there are different types?

 

I have a neighbor whose father had esophageal cancer and she got it, too, in her forties. And I believe a teacher we once used had to have regular checks because her father had it.

 

Not to scare anyone...

[creekland]

I've been at this for a very very long time.  I seriously have gone through all the stages of grief:  denial, anger, bargaining, depression, acceptance. I'm now in acceptance but I can go back to the beginning of the stages (or to an intermediate one) at any time.  To go back to something I alluded to in my previous post - my faith informs a lot of how I ultimately handle this.  There is a lot out of my control.  (I think this is true for many people in many different circumstances but I don't even have the allusion of control as far as big chunks of my life).  I can't control my body but I can control my attitude and I can control how I respond to the circumstances which God has allowed in my life.  I can also control certain lifestyle decisions :  diet, exercise (even when it's tough), even stress reducing activities.  So I control what I can. 

 

...

 

In a couple of situations where I could not dismiss them and had a critical need for help, I actually left the appointment, got my husband and went back.  It kills me to say this but in both of those situations they listened to my husband.  

 

...

 

What i don't do is to do nothing.  Doing nothing has never solved anything for me.   

 

My mood on it all totally depends upon the day and hour.  When things are going (relatively) well, it's more or less easy to forget things or even to talk sanely about them.  When things (physically) aren't, it's impossible to ignore them.  I pull into my cave and wait things out.  My mind can head to dark places TBH.  When I'm mentally frustrated (can be better, bad, or ugly days) I get angry (or sometimes situationally depressed).  That part is pretty predictable.  On my more sane days I try to work out plans to deal with the other two knowing they will return.  I suppose that's where I'm at control-wise.

 

There's no way I'm going to get hubby involved.  To his credit, he's offered.  That's just not "me" either.  It would make me super livid to see them listen to him when they wouldn't listen to me.

 

And I'm not really doing nothing.  Mostly now though I'm waiting for middle son to progress far enough into med school to have decent contacts.  I don't have to convince him to believe me.  I keep him updated on most things - he's curious - we ponder thoughts together - the "whys," etc.  I don't blame the doctors I've seen for not knowing.  I'm miffed that they won't follow the obvious (to me) to keep looking, but I realize it's unusual stuff and they're busy.  Middle son and I talk about that too.  It could end up being a good experience for him.

 

GERD/reflux.  

 

True, this is a known cause, but it's one my mom never had.  She's a Type II diabetic who was on daily insulin injections.  She had chronic bladder infection problems. She also had her gall bladder out a decade or so ago. Aside from those, just a broken bone once or twice (at least once with her wrist) and some torn cartilage here and there - all from her active days (ice skating, biking, mountain hiking, badminton, tennis, etc) and cataracts that were taken care of, not much went on - nothing that's listed on any "causes of esophageal cancer" pages.

 

Is esophageal cancer not genetically influenced? Maybe there are different types?

 

I have a neighbor whose father had esophageal cancer and she got it, too, in her forties. And I believe a teacher we once used had to have regular checks because her father had it.

 

Not to scare anyone...

 

Her (specialist) doctor said no and I haven't seen it listed as genetic on google.  In addition to that, she's the first person on her side of the family to have cancer of any sort.  Of course, not much was known generations back, but neither of her parents, their siblings, nor her siblings had anything - not even minor types.  Short of accidents, they lived long healthy lives.  She'll be the first of the siblings to pass away unless something quick happens to any of the (5) others.

 

My grandmother on my dad's side had breast cancer, but that's only a relationship via marriage for her.

 

I've inherited quite a few of my mom's medical traits - the weird parts anyway - but this one seems rather unlikely.  I'd also say I have no symptoms, but then again, neither did she...  Not of this.  She had classic heart symptoms - the type found on any "beware" list.  Those were dismissed as stress or a muscle - except she was persistent so later a stress test was done and a stent was placed into a 99% blocked artery.  Then afterward she had bleeding (from the cancer and blood thinners).  Symptoms of that were dismissed as stress - several times - until her hemoglobin count was down to 6.something and she could barely move.  Her doctor gave in to her request to be tested for Lyme disease... accidentally finding the low blood count and eventually leading to her diagnosis.  Her (primary care) doctor I can't stand.  Classic symptoms - misdiagnosed - scoffing.  Any I've seen wouldn't have missed those.  They've checked common things.  It's the jump to go beyond common where we diverge in thoughts.