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Old 06-16-2021, 12:18 AM
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Default Curious if anyone has health weirdness

I went to the doctor today because I haven't been feeling well, and long story short, turns out I have a soft tissue infection again. This is my fourth one is the last few years and I have no idea how I get them, there is never a break in the skin like you would think with a regular infection, but I get them. This on is on the back of my leg just up from my knee which sucks because it hurts to touch, ie sit on, wear clothes, etc.

On top of that, apparently I have an ear infection as well, so I am double whammied. Weird thing is my neck hurts, but not my ears or throat which one would think would hurt with an ear infection, not the neck. I told the doctor my neck hurt, but my ears only itch a little. She says she is not surprised because I am atypical, ie. weird.

This weirdness is inherited from my father and starts with a low body temp and goes all the way to the point that things aren't always where they are supposed to be in my body. For instance, my thyroid was under my collar bone and my cervix used to be tilted sideways.

I also tend to have strange reactions to things as well, for instance, I don't dissolve dissolvable stitches. They will move through my body until they find a way to come up and out. I get a sore that starts to fester and then the stitch will pop out. It is disgusting to say the least.

So after my visit to the doctor and what she said about me being atypical, it got me to thinking, surely I can't be the only one who has stuff like this happen or has parts in the wrong place, right?

So if you are weird like me, I want to hear about it so I feel less like a freak of nature. LOL
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Old 06-16-2021, 01:42 AM
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I have lots of little things that need addressing, but nothing out of the box. I too have a low body temperature amongst a host of other things, but I think it all relates to my thyroid. Maybe consider checking your gut health. Probiotics etc could be helpful? I've never heard of anyone who can't dissolve stitches.
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Old 06-16-2021, 07:48 AM
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My mom always says she is a freak... lots of things that leave doctors saying, "I don't know..." My grandma's heart was backwards... and I take after her a lot in physical stuff... I often wonder if mine is too - but no doctor will check because I don't have heart issues.

My knee cap slides sideways... two of my wisdom teeth are missing (my mom didn't have wisdom teeth, but they found bone chips in different parts of her body that they are assuming was her wisdom teeth).
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Old 06-16-2021, 10:13 AM
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The longer I am out in the world (aka, the older I get and the more people I interact with), the more I realize there is no "normal." There may be "typical," but that word just means "this has been recognized more often--or more voraciously--by others."

Having said that, I too have a low temp! So, according to this thread, 3 out of 4 of us have a low temp...which would make us the Typical Temps. Take that, Medical Establishment! lol
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Old 06-16-2021, 10:25 AM
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I have lots of little things that need addressing, but nothing out of the box. I too have a low body temperature amongst a host of other things, but I think it all relates to my thyroid. Maybe consider checking your gut health. Probiotics etc could be helpful? I've never heard of anyone who can't dissolve stitches.
Thyroid issues are the pits (thyroid cancer survivor) and I don't think people realize how much it impacts, so it is smart to get that stuff checked.

That is another one, I didn't mention. My thyroid did not uptake iodine like it was supposed to so the radiation I had went to my spine instead. Didn't see that one coming, but I had to go through a lot of physical therapy to stand and walk again and I lost over an inch in height because of it.

I do take stuff for my gut health because once I hit fifty things stopped working like they should.

As to the stitches, nope, can't dissolve them at all. Like I said, weird.
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Old 06-16-2021, 10:28 AM
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My mom always says she is a freak... lots of things that leave doctors saying, "I don't know..." My grandma's heart was backwards... and I take after her a lot in physical stuff... I often wonder if mine is too - but no doctor will check because I don't have heart issues.

My knee cap slides sideways... two of my wisdom teeth are missing (my mom didn't have wisdom teeth, but they found bone chips in different parts of her body that they are assuming was her wisdom teeth).
Wow, a backward heart has to be some serious stuff. I hope it did not impact her as much as I am thinking it would have.

Does it hurt when the kneecap slides? If they find bone chips in you, then we will know you took after your mom, halfway at least. LOL That is really interesting to know they were there, just not the way they were supposed to be there.
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Old 06-16-2021, 10:29 AM
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Originally Posted by Tree City View Post
The longer I am out in the world (aka, the older I get and the more people I interact with), the more I realize there is no "normal." There may be "typical," but that word just means "this has been recognized more often--or more voraciously--by others."

Having said that, I too have a low temp! So, according to this thread, 3 out of 4 of us have a low temp...which would make us the Typical Temps. Take that, Medical Establishment! lol
Good point, Sara! LOL I think the low body temp is common which makes me think that the standard may be wrong. I mean, Pluto is not longer a planet, so anything is possible, right? LOL
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Old 06-16-2021, 12:57 PM
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I have a lot of "not normal" stuff, but thankfully like stated above, we are all unique and there is no "normal" especially since all of our bodies are vastly different. I'm just thankful our doctors are able to treat all of our differences without overlooking (for the most part) any symptoms/signs.

One thing that comes to mind is that I have an extra rib/bone that goes up and in to my clavicle, which makes it hard for doctors to check the glands around that area because there is a bone sticking out. Up until recently we thought it was just on one side of my body, but apparently last year they discovered I have the same thing on my other side, just not as pronounced as the other.

I do not have a lower body temperature, but I do have low blood pressure to the point that 120/60 feels like I am going to die. Normal for me is somewhere in the 90's....my eldest's is lower than mine, which is really scary combined with her other medical issues.
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Old 06-16-2021, 06:09 PM
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My hubby is "weird". He's got organs that aren't in the "proper" place and low body temp too.

I don't have anything that I can think of off hand right now
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Old 06-16-2021, 06:58 PM
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I have a weird one- Chronic Idiopathic Urticaria(CIU)/dermatographia- basically means I break out in hives for no reason. SUPER fun! It flares up every few years where it starts with my hands, feet & scalp getting itchy and then whatever is tight on my skin (bra, socks, waistbands, etc) will break out in hives. I'm then a human chalkboard- you can literally scratch on my arm a word & it'll hive up. It is possibly THE WORST form of torture- to be itchy, unable to scratch (they get MUCH worse when scratched) and very very little to do to help. I often wake up at night scratching or rubbing my hands together - so then they swell all up. It's tortuous. When it flares, it never fails to be while I'm on vacation, or a holiday weekend so I end up at an urgent care and usually on high dose of Prednisone (the worst drug ever!) I've done crazy amounts of allergy testing (I'm allergic to everything) and never have we been able to pinpoint an exact source/cause of the hives. My body is just weird is hyper-reacts to everything... :/

My current regimen of antihistamines is:
24hr Allegra, (2) in the am, (2) in the pm
Famotidine (2ndary antihistamine) (1) am, (1) pm
Singular/Montelukast (1)am
Nasacort (1) spray am, (1) spray pm

So far it's been a bit since my last flare up- but **knocking on wood** I feel like I'm on a pretty stable regimen considering my normal seasonal allergies have been okay during a crazy high pollen season.
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Old 06-16-2021, 07:26 PM
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Originally Posted by LJSDesigns View Post
Good point, Sara! LOL I think the low body temp is common which makes me think that the standard may be wrong. I mean, Pluto is not longer a planet, so anything is possible, right? LOL
And I now see the earth has a fifth ocean.
I don't register any blood pressure when I'm super sick. Like I'm dead! My mom was that way too.
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Old 06-16-2021, 10:02 PM
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Originally Posted by Neverland Scraps View Post
I have a lot of "not normal" stuff, but thankfully like stated above, we are all unique and there is no "normal" especially since all of our bodies are vastly different. I'm just thankful our doctors are able to treat all of our differences without overlooking (for the most part) any symptoms/signs.

One thing that comes to mind is that I have an extra rib/bone that goes up and in to my clavicle, which makes it hard for doctors to check the glands around that area because there is a bone sticking out. Up until recently we thought it was just on one side of my body, but apparently last year they discovered I have the same thing on my other side, just not as pronounced as the other.

I do not have a lower body temperature, but I do have low blood pressure to the point that 120/60 feels like I am going to die. Normal for me is somewhere in the 90's....my eldest's is lower than mine, which is really scary combined with her other medical issues.
I think the not normal thing is why my doctor always says I'm atypical. LOL

I've heard of extra ribs before, but am trying to picture it sticking up into your clavical. What I picture hurts, but I am sure I am not seeing it for what it really is. It doesn't poke out at all, does it?

I am starting the think the lower body temp is pretty typical after all.
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Old 06-16-2021, 10:03 PM
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My hubby is "weird". He's got organs that aren't in the "proper" place and low body temp too.

I don't have anything that I can think of off hand right now
Ah, those wandering organs. They can be just about anywhere once they get loose.
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Old 06-16-2021, 10:05 PM
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Originally Posted by AmieN1 View Post
I have a weird one- Chronic Idiopathic Urticaria(CIU)/dermatographia- basically means I break out in hives for no reason. SUPER fun! It flares up every few years where it starts with my hands, feet & scalp getting itchy and then whatever is tight on my skin (bra, socks, waistbands, etc) will break out in hives. I'm then a human chalkboard- you can literally scratch on my arm a word & it'll hive up. It is possibly THE WORST form of torture- to be itchy, unable to scratch (they get MUCH worse when scratched) and very very little to do to help. I often wake up at night scratching or rubbing my hands together - so then they swell all up. It's tortuous. When it flares, it never fails to be while I'm on vacation, or a holiday weekend so I end up at an urgent care and usually on high dose of Prednisone (the worst drug ever!) I've done crazy amounts of allergy testing (I'm allergic to everything) and never have we been able to pinpoint an exact source/cause of the hives. My body is just weird is hyper-reacts to everything... :/

My current regimen of antihistamines is:
24hr Allegra, (2) in the am, (2) in the pm
Famotidine (2ndary antihistamine) (1) am, (1) pm
Singular/Montelukast (1)am
Nasacort (1) spray am, (1) spray pm

So far it's been a bit since my last flare up- but **knocking on wood** I feel like I'm on a pretty stable regimen considering my normal seasonal allergies have been okay during a crazy high pollen season.
Sounds like your hives are like my soft tissue infections as in there is no good reason for it to happen, it just does. I totally understand what you are saying about the hives though, because I get them too. Today, I was itching like crazy and ended up taking some benedryl to help. I am lucky cause that usually does it for me, so I am no where near what you are going through. You totally have my sympathy on that one.
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Old 06-16-2021, 10:08 PM
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And I now see the earth has a fifth ocean.
I don't register any blood pressure when I'm super sick. Like I'm dead! My mom was that way too.
I am not sure which statement is more surprising, a fifth ocean, which I have not heard about, or no blood pressure. That has to freak people out for sure. Do you have really thin arms? Maybe they just can't get the pressure they need in the cuff for the test? Just guessing here.
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Old 06-16-2021, 10:47 PM
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Here's the fifth ocean article:
https://www.nationalgeographic.com/e...southern-ocean


A paramedic told me once that he couldn't get a reading on me, so I assume it happens when I'm super sick because it happened to my mom when she got really ill.
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Old 06-16-2021, 11:48 PM
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I'm curious what people are considering a low body temperature. I've read that body temperatures have been going down, in general. I'm consistently at 97.7F (36.5C) taken orally, which is pretty typical. The most accurate method is rectally, which I know isn't a common way to measure, lol. Everyone I know is always super low with temporal measurements.
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Old 06-17-2021, 12:04 AM
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I'm curious what people are considering a low body temperature. I've read that body temperatures have been going down, in general. I'm consistently at 97.7F (36.5C) taken orally, which is pretty typical. The most accurate method is rectally, which I know isn't a common way to measure, lol. Everyone I know is always super low with temporal measurements.
I have to take mine every day at work before I start and it is usually 95.4 taken with the scan gun thingy, which I am sure is probably off a bit, but the highest it has even been when I feel fine is 96.8. It is interesting that the temps have been going down. Wonder what is causing that. My son told me the other day that the sperm count in men is also on a downward trend. I wonder how many other "body" things are changing too.
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Old 06-17-2021, 12:13 AM
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Here's the fifth ocean article:
https://www.nationalgeographic.com/e...southern-ocean


A paramedic told me once that he couldn't get a reading on me, so I assume it happens when I'm super sick because it happened to my mom when she got really ill.
Thanks for sharing the article; very interesting.

Genetics is so much fun, isn't it. I get all my weirdness from my Dad. He was atypical as well and had a very rare disease. Thankfully I did not get that from him. When I was doing genealogy, I traced his mother's and father's lines back and found that both descended from the same family; a brother and sister from the early 1600's. The line did not reconnect until my grandparents and I believe the recessive gene that the siblings carried and my grandparents carried was what caused my dad's illness. This has played out further for me because my uncle has the same illness, which is prevalent in males. Finally, my grandfather's niece married my grandmother's brother and they have children with the same rare, genetic disease. Because of this history, I have always been fascinated by genetics.
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Old 06-17-2021, 06:23 PM
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I think the not normal thing is why my doctor always says I'm atypical. LOL

I've heard of extra ribs before, but am trying to picture it sticking up into your clavical. What I picture hurts, but I am sure I am not seeing it for what it really is. It doesn't poke out at all, does it?

I am starting the think the lower body temp is pretty typical after all.
Sometimes it hurts and feels like bone on bone rubbing, especially if I move my arms around a lot or doing heavy lifting. The bones don't poke out, but if I were to lose an ideal amount of weight it would be noticeable to people that my neck/clavicle area doesn't look like other people
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Old 06-17-2021, 11:05 PM
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oh wow, yeah low temp here too. When I feel like I have a fever I am at 99 because I am usually at 96. LOL!!!
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Old 06-17-2021, 11:18 PM
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oh wow, yeah low temp here too. When I feel like I have a fever I am at 99 because I am usually at 96. LOL!!!
Totally! LOL My dad was deathly ill at 101. I don't think I am as low as he was though, but if I get over 100 I feel like I am burning up.

If this thread proves one thing, it's that the standard temp is not that standard. LOL
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Old 06-18-2021, 10:39 AM
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I went to the doctor today because I haven't been feeling well, and long story short, turns out I have a soft tissue infection again. This is my fourth one is the last few years and I have no idea how I get them, there is never a break in the skin like you would think with a regular infection, but I get them. This on is on the back of my leg just up from my knee which sucks because it hurts to touch, ie sit on, wear clothes, etc.

On top of that, apparently I have an ear infection as well, so I am double whammied. Weird thing is my neck hurts, but not my ears or throat which one would think would hurt with an ear infection, not the neck. I told the doctor my neck hurt, but my ears only itch a little. She says she is not surprised because I am atypical, ie. weird.

This weirdness is inherited from my father and starts with a low body temp and goes all the way to the point that things aren't always where they are supposed to be in my body. For instance, my thyroid was under my collar bone and my cervix used to be tilted sideways.

I also tend to have strange reactions to things as well, for instance, I don't dissolve dissolvable stitches. They will move through my body until they find a way to come up and out. I get a sore that starts to fester and then the stitch will pop out. It is disgusting to say the least.

So after my visit to the doctor and what she said about me being atypical, it got me to thinking, surely I can't be the only one who has stuff like this happen or has parts in the wrong place, right?

So if you are weird like me, I want to hear about it so I feel less like a freak of nature. LOL
There is no ugliness in you. It just has its own peculiarities, which, unfortunately, sometimes cause inconvenience. If you judge so, each of us has our own problems. I have now been diagnosed with autoimmune thyroiditis. So there was a reason for my increased fatigue, slow metabolism and excess weight. Now I have to undergo lifelong hormone therapy. But you can live with it.
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Old 06-18-2021, 11:32 AM
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This is so interesting to me. I'm missing a chromosone that makes me wake up from certain anestesia. We found this out when I took 45 minutes to wake up from getting my tonsils out when I was in college; they made me wear a med alert bracelet after that because it was so dangerous. Fortunately, I've never had any issues with it since, but the doctor said if I was exposed to that drug again, I might not wake up!
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Old 06-18-2021, 09:14 PM
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I have naturally low blood pressure. When I am at a healthier weight, it's low enough to make me get light-headed and dizzy often. There's also some extra bone on the inside bottom of my mouth. It makes dental work more difficult but doesn't affect me normally. The dentist mentioned to me recently that if I have to get dentures, they would have to cut that bone out! I will never get dentures apparently cause no way. I am also prone to infections after getting a bad one in 6th grade; ear, nasal, bronchitis, kidney, UTIs, mainly. I had surgery on my right ankle three years ago and he cut a nerve during it that did not heal so the top of my 4th toe and half of each next to it have no feeling. I think that's all. Nothing too weird I don't think. lol
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Old 06-19-2021, 03:13 PM
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I have now been diagnosed with autoimmune thyroiditis. So there was a reason for my increased fatigue, slow metabolism and excess weight. Now I have to undergo lifelong hormone therapy. But you can live with it.
I am glad you got our diagnosis because that is the first step to feeling better.

Thyroid stuff is hard because of how much it impacts, but fortunately most thyroid things can be treated and you can live with it. May sounds a little nuts, but I am thankful I had thyroid cancer and not something else. Even if my treatment did not goes as it should since I did not uptake the radioactive iodine, I have been living a good life with it for the last 19 years. Sure there are struggles, weight being one, but we all have our struggles, right?

I hope your therapy helps you feel better soon. I think I said it before, but chronic illness are not fun, but with the right treatment they are totally doable.
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Old 06-19-2021, 03:20 PM
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This is so interesting to me. I'm missing a chromosone that makes me wake up from certain anestesia. We found this out when I took 45 minutes to wake up from getting my tonsils out when I was in college; they made me wear a med alert bracelet after that because it was so dangerous. Fortunately, I've never had any issues with it since, but the doctor said if I was exposed to that drug again, I might not wake up!
Okay, that not waking up from anestesia is really scary! I wake up from it puking, first time right on my poor sister, but I wake up pretty fast. After that first time, they started putting something in my IV to help with that, so it is not a huge problem, but that first time. Man, it was intense. Like I said, my poor sister. Still feel bad about that and it was over 20 years ago.

It's amazing what we don't know about ourselves until something like surgery or an accident happens. Besides not knowing about the puking or the dissolvable stitches, I found out I was allergic to adhesives then too. They put a strong adhesive bandage over the surgery scar on my neck and it was killing me. When they took it off to see what the issue was, they took off layers of skin with it. I ended up with a bigger issue with that then the scar, it was so bad.

Shoot, after writing that, it is really apparent how atypical I am. I am also allergic to latex. LOL
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Old 06-19-2021, 03:26 PM
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Originally Posted by lovely1m View Post
I have naturally low blood pressure. When I am at a healthier weight, it's low enough to make me get light-headed and dizzy often. There's also some extra bone on the inside bottom of my mouth. It makes dental work more difficult but doesn't affect me normally. The dentist mentioned to me recently that if I have to get dentures, they would have to cut that bone out! I will never get dentures apparently cause no way. I am also prone to infections after getting a bad one in 6th grade; ear, nasal, bronchitis, kidney, UTIs, mainly. I had surgery on my right ankle three years ago and he cut a nerve during it that did not heal so the top of my 4th toe and half of each next to it have no feeling. I think that's all. Nothing too weird I don't think. lol
Wow on the extra bone! I would definitely avoid the denture route too! Just the thought of cutting out a bone gives me the willies.

The infection thing is the same for me and was for my mom. She almost died of septis from a UTI and after that, any infection she got hit her hard and made her crazy. No lie, she would get outta her head with it and get violent. When she was in full blown dementia it could get ugly. At the end, she thought I was her mom, so I usually got her to calm down, but she gave me some bumps and bruises on the way. Dementia is so horrible.

Does the toe bother you much? I know when my feet fall asleep, if I try to stand up, I am going to fall on my face. That is probably an extreme version other than a toe and half of two others, but balance is balance.
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Old 06-19-2021, 03:48 PM
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Wow on the extra bone! I would definitely avoid the denture route too! Just the thought of cutting out a bone gives me the willies.

The infection thing is the same for me and was for my mom. She almost died of septis from a UTI and after that, any infection she got hit her hard and made her crazy. No lie, she would get outta her head with it and get violent. When she was in full blown dementia it could get ugly. At the end, she thought I was her mom, so I usually got her to calm down, but she gave me some bumps and bruises on the way. Dementia is so horrible.

Does the toe bother you much? I know when my feet fall asleep, if I try to stand up, I am going to fall on my face. That is probably an extreme version other than a toe and half of two others, but balance is balance.
My grandma passed last summer after a few years of dealing with dementia. It really is horrible. My brother-in-law works in a nursing home and said there is some sort of connection with dementia and UTIs. I've had lots of bad infections, but three years ago I wound up in the ER when a severe kidney infection hit me with no warning. I had to be taken from work in an ambulance and was given fentanyl. It was intense.

The toe bothered me a lot at first. Every single thing that touched it was so painful, the sheets on the bed killed me. Now the nerve pain isn't nearly as bad as all, more irritating than anything.
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Old 06-19-2021, 07:44 PM
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As far as I know, slightly lower than average temperature seems to be it for me. We sure are all unique, aren't we! Everything else but the temperature, I blame on weight and back issues and a foot I really badly broke in my 40's.
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Old 06-19-2021, 11:36 PM
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My grandma passed last summer after a few years of dealing with dementia. It really is horrible. My brother-in-law works in a nursing home and said there is some sort of connection with dementia and UTIs. I've had lots of bad infections, but three years ago I wound up in the ER when a severe kidney infection hit me with no warning. I had to be taken from work in an ambulance and was given fentanyl. It was intense.

The toe bothered me a lot at first. Every single thing that touched it was so painful, the sheets on the bed killed me. Now the nerve pain isn't nearly as bad as all, more irritating than anything.
I am sorry about your grandma. UTI's definitely made the dementia worse in my mom's case, so I would believe there is a connection. I believe an infection can happen that fast, with no warning, and it can be painful and scary. Is a kidney infection as bad as a kidney stone? Kidney stones suck.

It is incredible how much sheets can hurt. I have a bone spur on my heel that I can't allow to touch the sheets because of the pain. I sleep with my leg bent and crossed over the other one so that heel never touches the sheets. The dang spur is wrapped around my Achilles tendon so I would need major surgery to get rid of it, so I just deal and sleep like a pretzel. But Tracey M is right, since I have lost weight the bone spur does not hurt as much. Except at night on the sheets. LOL
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Old 06-19-2021, 11:38 PM
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As far as I know, slightly lower than average temperature seems to be it for me. We sure are all unique, aren't we! Everything else but the temperature, I blame on weight and back issues and a foot I really badly broke in my 40's.
Weight is a big contributor to a lot of my aches and pains too. Since I've lost some, my back does not hurt as much, which is great. I think back pain is the worst.

We are all definitely unique and that is what makes it fun and interesting.
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Old 06-21-2021, 04:04 PM
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I am sorry about your grandma. UTI's definitely made the dementia worse in my mom's case, so I would believe there is a connection. I believe an infection can happen that fast, with no warning, and it can be painful and scary. Is a kidney infection as bad as a kidney stone? Kidney stones suck.

It is incredible how much sheets can hurt. I have a bone spur on my heel that I can't allow to touch the sheets because of the pain. I sleep with my leg bent and crossed over the other one so that heel never touches the sheets. The dang spur is wrapped around my Achilles tendon so I would need major surgery to get rid of it, so I just deal and sleep like a pretzel. But Tracey M is right, since I have lost weight the bone spur does not hurt as much. Except at night on the sheets. LOL
My husband just got done dealing with kidney stones for the last month. It was terrible. We brought him to the ER 3 times, he had 3 surgeries, and he spent 3 overnight in the hospital. I would say the pain was probably equal to my kidney infection, but the difference was, I could fix mine with just a couple of rounds of strong antibiotics. I didn't need all the other stuff my husband needed and dealt with.

I sleep a little weird now, too. I cannot make that ankle go straight, so I tend to just bend at the hip. Not quite as pretzel as you, but not the way I used it. The not bending properly affects me the worse when doing yoga though. I cannot do some moves anymore and it's frustrating, but the surgery was still worth it.
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Old 06-22-2021, 09:18 AM
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I sleep a little weird now, too. I cannot make that ankle go straight, so I tend to just bend at the hip. Not quite as pretzel as you, but not the way I used it. The not bending properly affects me the worse when doing yoga though. I cannot do some moves anymore and it's frustrating, but the surgery was still worth it.
Life is totally about adapting to the new things, both good and bad, isn't it? Luckily the human race is really good at adapting.
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Old 07-06-2021, 07:07 PM
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Oh boy do I have a plethora to share lol. Most of my issues may not seem strange in the "atypical" sense, but to have all these issues at once and at my age (I'm not even 35 yet and I've had these issues since I was 25, or starting around that time) something unusual has to be going on.

So first of all, pre-dating all the other issues, I was diagnosed with TMJD (temporomandibular joint disorder) in 2008. Essentially it's arthritis in the jaw bone, although there is more to it than that that's the best way to describe it. There's little cushioning left where my jaw bone meets my skull (up near the ear, which is why it can sometimes present like an ear infection) I can no longer eat certain things like steak because of how hard it is to chew, I can no longer chew gum or certain types of candy (I haven't had a Starburst or any kind of taffy for over 10 years, blah). What truly sucks is that it totally changes your eating habits, and it's made me self-conscious about HOW I eat, so I don't like to eat in sit-down restaurants anymore. For example, I don't like to open my jaw wide anymore, so the result is eating things like burgers with a fork (or tearing off pieces). Pizza, burritos, even Subway sandwiches too. People don't understand that it hurts and that it's a condition, so the strange and honestly judgmental looks from people aren't worth it, so we stick with takeout or I eat at places with items that people won't judge me for using a fork (buffets are great - you know, once the plague is over lol).

Also, somewhere along the way I was diagnosed with agoraphobia and severe anxiety disorder with associated panic disorder (I have panic attacks).

Then around 2013 I started having my "health crisis". I have a laundry list of symptoms. I started having tremors, my hands were constantly shaking when I felt normal. I noticed it when I would knit, crochet, and cross stitch (which relax me, so why would it be my anxiety to blame). I started feeling weak, feeling like I'd literally run a 10K when all I did was put a load of laundry in - out of breath, shaky, cold and clammy with sweat, and lightheaded. Then the fainting episodes started - one morning my husband and I had a lazy moment in bed for 20-30 minutes but I eventually had to get up to go to the bathroom, and I'd used the bathroom and walked all the way back to the dresser in my bedroom to get dressed, feeling fine, before I dropped like a stone to the floor. Fainted dead away. Like I said, I had been upright for a good minute or two already, so it wasn't "oh man I got up too quickly". I only gained more symptoms to add to the list - random skin rashes (that they "ruled out" as Lupus), muscle jerks (I quit driving after the time I was at a stop light and had a sudden muscle jerk that almost made me slam the gas with another car stopped in front of me), and people told me that they noticed I suddenly got more "clumsy" and stumbled over myself more often but also started to noticeably lean when I stood. There was a lot more but it's just so much. I went to a couple of doctors, touted to be some of the best in this state, but...well, the GP told me he suspected Lupus and referred me to an endocrinologist, the endocrinologist told me I probably had rosacea and was letting my anxiety get the best of me and to see a psychiatrist, the psychiatrist told me she thought I had a physical issue and to go see a neurologist, and the neurologist must have forgotten that her specialty was generally in the head area because she thought I had a gastrointestinal disorder (that I had no symptoms of). They were all taking me for a ride, I had started to rack up some serious bills because I'd had multiple tests including an MRI that I had insisted on (i.e. probably not covered by insurance), and these doctors just kept passing the buck. I stopped the search after that. I was being treated during that whole time, by the way, by my therapist for my anxiety, and my physical symptoms continued.

It wasn't until a couple years later...I went to a family doctor because my back always hurt. The "laying supine on the couch crying" kind of hurt. I had been told by the original GP (that suspected Lupus), who had actually run a boatload of tests back then including an x-ray of my back and neck, that I had several discs in my back and C-spine that were pinched and/or had degeneration. The second GP diagnosed me with severe arthritis and after hearing about my other issues, diagnosed me with fibromyalgia.

And that has been my struggle ever since. I still suspect that the fibromyalgia may either be a misdiagnosis or that I may have fibro but also something else, because fibro doesn't explain a lot of things. Chronic illnesses like to gather - I have met so many "spoonies" (chronic illness sufferers) that have 2-3 different, unrelated diagnoses. In fact, I have honestly never met one that only has one. I still struggle with tremors and shakes sometimes. I now have arthritis in other areas - mildly in my knees, my legs sometimes hurt, and I now struggle a lot with sciatica and pinched nerves in my hips (mostly my right), down my legs, and a lot in my back. 7/10 nights I spend tossing and turning because one or the other hand/arm will go totally numb, usually the arm I'm NOT laying on, because of all the nerves in my back that pinch. Those issues flare up a lot when bad weather comes through - which we actually have a storm blowing in over the next 24 hours so I'm having these issues now.

As far as diagnoses, I have none for the unresolved issues like the fainting and tremors. The rashes have mostly gone away but sometimes one still crops up, and in the last 5 years I've had bouts of breaking out into hives for no reason, at least twice - the last time was right after we moved, October or November. Again, no reasonable explanation. I have also developed chronic migraines (lovely), though thankfully compared to how I know migraines can be for some mine are mostly mild with the occasional very-not-mild one. I'm fairly certain it's not Lupus like original GP suspected. It's definitely not the gastrointestinal disorder the neuro suspected - I actually now have a FB friend with exactly that disorder and I don't have the same issue as she does, at least with her gastro disorder. I have always suspected a disorder called POTS (postural orthostatic tachycardia syndrome), it causes raised heart rates (my RESTING is in the mid 90s bordering on 100s, and can jump to the 120s, that ain't normal) and fainting. I've also suspected it could be caused by thyroid issues, but things don't all quite "fit into place" with that one like it does POTS.

However, as of today, other than my arthritis, TMJ, anxiety, and fibro, I remain undiagnosed for the weird issues. After all that I went through before, I'm not rushing to see more doctors just to get a diagnosis. I have learned to live with my issues, the only thing that is hard to live with is the chronic pain but since I do not want to go back on painkillers there's not much a doctor can do for me that I don't know and can't do myself (exercise, rest, homeopathic remedies, etc).

So...yeah, I have health weirdness. Definitely. lol
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Old 07-06-2021, 07:13 PM
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The toe bothered me a lot at first. Every single thing that touched it was so painful, the sheets on the bed killed me. Now the nerve pain isn't nearly as bad as all, more irritating than anything.
I have a finger on my left hand, the ring finger, that I injured quite a few years ago now, I was 18 and nearly cut the finger off at the knuckle with a butcher knife. One of the things I managed to cut was a nerve. It's been so many years that most of it has healed, but for so many years if anyone tried touching that finger, I would nearly FLY OFF. Definitely couldn't wear a ring on that finger, I think even now that would bother me. That fingernail gets less manicuring than the others because the thought of filing it makes my skin literally crawl. It's so weird to experience both not having any feeling and also feeling overstimulated with feeling to the point of experiencing pain, right?
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Old 07-06-2021, 08:05 PM
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So first of all, pre-dating all the other issues, I was diagnosed with TMJD (temporomandibular joint disorder) in 2008. Essentially it's arthritis in the jaw bone, although there is more to it than that that's the best way to describe it. There's little cushioning left where my jaw bone meets my skull (up near the ear, which is why it can sometimes present like an ear infection) I can no longer eat certain things like steak because of how hard it is to chew, I can no longer chew gum or certain types of candy (I haven't had a Starburst or any kind of taffy for over 10 years, blah). What truly sucks is that it totally changes your eating habits, and it's made me self-conscious about HOW I eat, so I don't like to eat in sit-down restaurants anymore. For example, I don't like to open my jaw wide anymore, so the result is eating things like burgers with a fork (or tearing off pieces). Pizza, burritos, even Subway sandwiches too. People don't understand that it hurts and that it's a condition, so the strange and honestly judgmental looks from people aren't worth it, so we stick with takeout or I eat at places with items that people won't judge me for using a fork (buffets are great - you know, once the plague is over lol).
My thoughts go out to you for the eating issues alone! I understand completely how you feel. I didn't have TMJD but had missing teeth since the mid-90's. Molars. Had to chew with front teeth and you know what that does to those... wears them down because that's not what they are meant to do. Ended up having all teeth pulled so couldn't eat much at all, only soft foods. I existed on baked potatoes, mashed potatoes, real soft mac and cheese, scrambled eggs, instant oatmeal and tomato soup for over 2 years. Thankfully there was a solution for me and I now have a full mouth of teeth that aren't dentures. That hamburger in a bun never tasted so good on Memorial Day!

As for the fibromyalgia, I have a friend that was diagnosed with it over 20 years ago. The doctors at Cleveland Clinic told her to pitch all her medications and started over with only the needed ones for her asthma she had forever. Turns out with every medication new side effects were popping up and more medications were prescribed to help with those causing a chain reaction. It took awhile but she got it under control and has been able to live a very full and active life until she got COVID. The fibro has now flared up again and she's trying to navigate it all over.

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Old 07-06-2021, 11:55 PM
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Oh boy do I have a plethora to share lol. Most of my issues may not seem strange in the "atypical" sense, but to have all these issues at once and at my age (I'm not even 35 yet and I've had these issues since I was 25, or starting around that time) something unusual has to be going on.

So first of all, pre-dating all the other issues, I was diagnosed with TMJD (temporomandibular joint disorder) in 2008. Essentially it's arthritis in the jaw bone, although there is more to it than that that's the best way to describe it. There's little cushioning left where my jaw bone meets my skull (up near the ear, which is why it can sometimes present like an ear infection) I can no longer eat certain things like steak because of how hard it is to chew, I can no longer chew gum or certain types of candy (I haven't had a Starburst or any kind of taffy for over 10 years, blah). What truly sucks is that it totally changes your eating habits, and it's made me self-conscious about HOW I eat, so I don't like to eat in sit-down restaurants anymore. For example, I don't like to open my jaw wide anymore, so the result is eating things like burgers with a fork (or tearing off pieces). Pizza, burritos, even Subway sandwiches too. People don't understand that it hurts and that it's a condition, so the strange and honestly judgmental looks from people aren't worth it, so we stick with takeout or I eat at places with items that people won't judge me for using a fork (buffets are great - you know, once the plague is over lol).

Also, somewhere along the way I was diagnosed with agoraphobia and severe anxiety disorder with associated panic disorder (I have panic attacks).

Then around 2013 I started having my "health crisis". I have a laundry list of symptoms. I started having tremors, my hands were constantly shaking when I felt normal. I noticed it when I would knit, crochet, and cross stitch (which relax me, so why would it be my anxiety to blame). I started feeling weak, feeling like I'd literally run a 10K when all I did was put a load of laundry in - out of breath, shaky, cold and clammy with sweat, and lightheaded. Then the fainting episodes started - one morning my husband and I had a lazy moment in bed for 20-30 minutes but I eventually had to get up to go to the bathroom, and I'd used the bathroom and walked all the way back to the dresser in my bedroom to get dressed, feeling fine, before I dropped like a stone to the floor. Fainted dead away. Like I said, I had been upright for a good minute or two already, so it wasn't "oh man I got up too quickly". I only gained more symptoms to add to the list - random skin rashes (that they "ruled out" as Lupus), muscle jerks (I quit driving after the time I was at a stop light and had a sudden muscle jerk that almost made me slam the gas with another car stopped in front of me), and people told me that they noticed I suddenly got more "clumsy" and stumbled over myself more often but also started to noticeably lean when I stood. There was a lot more but it's just so much. I went to a couple of doctors, touted to be some of the best in this state, but...well, the GP told me he suspected Lupus and referred me to an endocrinologist, the endocrinologist told me I probably had rosacea and was letting my anxiety get the best of me and to see a psychiatrist, the psychiatrist told me she thought I had a physical issue and to go see a neurologist, and the neurologist must have forgotten that her specialty was generally in the head area because she thought I had a gastrointestinal disorder (that I had no symptoms of). They were all taking me for a ride, I had started to rack up some serious bills because I'd had multiple tests including an MRI that I had insisted on (i.e. probably not covered by insurance), and these doctors just kept passing the buck. I stopped the search after that. I was being treated during that whole time, by the way, by my therapist for my anxiety, and my physical symptoms continued.

It wasn't until a couple years later...I went to a family doctor because my back always hurt. The "laying supine on the couch crying" kind of hurt. I had been told by the original GP (that suspected Lupus), who had actually run a boatload of tests back then including an x-ray of my back and neck, that I had several discs in my back and C-spine that were pinched and/or had degeneration. The second GP diagnosed me with severe arthritis and after hearing about my other issues, diagnosed me with fibromyalgia.

And that has been my struggle ever since. I still suspect that the fibromyalgia may either be a misdiagnosis or that I may have fibro but also something else, because fibro doesn't explain a lot of things. Chronic illnesses like to gather - I have met so many "spoonies" (chronic illness sufferers) that have 2-3 different, unrelated diagnoses. In fact, I have honestly never met one that only has one. I still struggle with tremors and shakes sometimes. I now have arthritis in other areas - mildly in my knees, my legs sometimes hurt, and I now struggle a lot with sciatica and pinched nerves in my hips (mostly my right), down my legs, and a lot in my back. 7/10 nights I spend tossing and turning because one or the other hand/arm will go totally numb, usually the arm I'm NOT laying on, because of all the nerves in my back that pinch. Those issues flare up a lot when bad weather comes through - which we actually have a storm blowing in over the next 24 hours so I'm having these issues now.

As far as diagnoses, I have none for the unresolved issues like the fainting and tremors. The rashes have mostly gone away but sometimes one still crops up, and in the last 5 years I've had bouts of breaking out into hives for no reason, at least twice - the last time was right after we moved, October or November. Again, no reasonable explanation. I have also developed chronic migraines (lovely), though thankfully compared to how I know migraines can be for some mine are mostly mild with the occasional very-not-mild one. I'm fairly certain it's not Lupus like original GP suspected. It's definitely not the gastrointestinal disorder the neuro suspected - I actually now have a FB friend with exactly that disorder and I don't have the same issue as she does, at least with her gastro disorder. I have always suspected a disorder called POTS (postural orthostatic tachycardia syndrome), it causes raised heart rates (my RESTING is in the mid 90s bordering on 100s, and can jump to the 120s, that ain't normal) and fainting. I've also suspected it could be caused by thyroid issues, but things don't all quite "fit into place" with that one like it does POTS.

However, as of today, other than my arthritis, TMJ, anxiety, and fibro, I remain undiagnosed for the weird issues. After all that I went through before, I'm not rushing to see more doctors just to get a diagnosis. I have learned to live with my issues, the only thing that is hard to live with is the chronic pain but since I do not want to go back on painkillers there's not much a doctor can do for me that I don't know and can't do myself (exercise, rest, homeopathic remedies, etc).

So...yeah, I have health weirdness. Definitely. lol
Wow, you have my sympathy. Chronic illness and pain is no joke. What is a joke is that they can't seem to diagnose you. I learned the hard way after my endro over radiated me for my thyroid cancer when I moved to a new state and therefore a new doctor, that not all doctors are good at what they do or can be trusted to have your best interest in mind. The ones here, and I saw a number of them because they were all fascinated by my case and the radiation exposure, said to not ever have any radiation again. You best believe I am very careful about that. Thyroid cancer is very easy to cure with radioactive iodine, if your body uptakes iodine correctly, which mine does not. The new doctors said if it didn't uptake the first time, it wasn't going to uptake the second, third or fourth time. Until that point, I had never heard a word about it not uptaking correctly, just that I had hot spots that need treated. The only thing that radiation really did for me was destroy part of my spine. I could kick myself for being so trusting and thinking the doctor knew what he was doing.

I am sorry that you are dealing with a level of incompetence that should not be in the medical profession. It sounds like you are doing the best your can with the hand you have been dealt, but it sucks that you have to deal with it.

There are so many little things that make big difference is our bodies. A perfect example, a woman I worked with tried to have a baby for 13 years with no luck. She saw all kinds of doctors, had invitro and hormones and this and that, still could not get pregnant. Found another specialist that was highly recommended who did a blood test and discovered her blood sugar ran too high. She was not a classic case of someone with that type of issue, thin, tiny, ate like a horse and never gained weight, but the blood sugar kept her from producing eggs correctly and that is why she couldn't get pregnant. She changed her diet, monitored her sugars to make sure they were in control and two months later she was pregnant. Her little girl turned one yesterday. All those year and a simple blood test helped a doctor who was willing to think outside the box diagnose her correctly. What is going on with you could be something as simple as that type of imbalance or it could be complicated, but some one should be able to think outside the box and figure it out.

Okay, stepping down and away from my soapbox before I start ranting about how a doctor diagnosed my father's MD as a slipped disc for years. Freaking idiot.
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Old 07-07-2021, 02:58 AM
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My thoughts go out to you for the eating issues alone! I understand completely how you feel. I didn't have TMJD but had missing teeth since the mid-90's. Molars. Had to chew with front teeth and you know what that does to those... wears them down because that's not what they are meant to do. Ended up having all teeth pulled so couldn't eat much at all, only soft foods. I existed on baked potatoes, mashed potatoes, real soft mac and cheese, scrambled eggs, instant oatmeal and tomato soup for over 2 years. Thankfully there was a solution for me and I now have a full mouth of teeth that aren't dentures. That hamburger in a bun never tasted so good on Memorial Day!

As for the fibromyalgia, I have a friend that was diagnosed with it over 20 years ago. The doctors at Cleveland Clinic told her to pitch all her medications and started over with only the needed ones for her asthma she had forever. Turns out with every medication new side effects were popping up and more medications were prescribed to help with those causing a chain reaction. It took awhile but she got it under control and has been able to live a very full and active life until she got COVID. The fibro has now flared up again and she's trying to navigate it all over.

Thankfully at this point (and this could change at any time) the TMJ is under control enough that there's a lot of things I can eat. Obviously those things I listed are still out and probably always will be - I can sometimes enjoy a steak if it's the right kind but not very often. But there are rare occasions it does flare up bad, and I have come up with my own coping mechanisms for when that happens. Most foods are out when I have a flare, it's just too painful, but flavored rice and pasta dishes are great and I basically survive on those until the flare passes. Soup is great but I can't survive on it alone. The pastas and rice are great because they're flavorful and carbs are my friend - they fill me up when a lot of protein sources are out. Eggs are great too, they have the protein and they're soft. Shakes are great too, I satisfy my sweet craving and they're delicious. Steak is not a great big loss for me, I've never been a fanatic over it, but sometimes I get a craving and do miss it.

The main reason I'm not anxious to go back to painkillers is I was on the strong stuff and developed a problem with it. And I had the unfortunate issue that your friend did - after a while it seemed to make the pain worse, no matter how much I took. I had no choice but to go off it cold turkey and withdrawal was horrible, but I've been off it for nearly 5 years now, minus a few times I've had access to a pill and taken it for the worst pain (a lot more responsibly this time). Honestly, if given the choice by a doctor to go back onto something it'd be a hard decision to make - there are times that the pain flares and I wish I had it to get by (tonight is one of those nights), but now that I've gone through a complete withdrawal and have had a 99% clean system for so long, even a half dosage just makes me feel sick to my stomach and the side effects are almost worse than the pain itself. But right now? Well, my area is expecting storms soon, and impending weather always makes me flare up, and it's no exaggeration to say that I'm about to jump out of my own skin to escape how progressively worse it's gotten over the course of the evening. I keep reminding myself of my constant mantra - this too shall pass...even if it passes like a huge kidney stone.
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Old 07-07-2021, 03:23 AM
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I am sorry that you are dealing with a level of incompetence that should not be in the medical profession. It sounds like you are doing the best your can with the hand you have been dealt, but it sucks that you have to deal with it.
The worst part about it is...in the Spoonie community, they push that you have to be your own advocate, because it's just too common that doctors don't seem to listen to people. That neurologist I went to, I basically had to demand that she order an MRI for me. I wanted to rule out multiple sclerosis, because my list of symptoms pointed to that being a possibility. I had to assure her that I knew it was an expensive test, I knew insurance probably wouldn't cover it and I accepted that risk. I understand that no doctor wants to do unnecessary tests and that there are risks, but in a case where you have a patient struggling with symptoms similar to something as severe as MS why wouldn't you want to rule that out? I don't know, that particular doctor made me mad anyway, I had to fight for the MRI and when I went back for her to read the results she spent more time joking about how the scan picked up my sinus infection (that I was taking care of already and was besides the point) than she did on the lack of any MS lesions on my brain or spine, she didn't even show me the scan to explain where and what made her come to the conclusion that there were no lesions, and she pushed her gastroparesis diagnosis for the last 20 minutes of the diagnosis despite my insistence that I didn't have the literal constant vomiting after every meal that sufferers of that disorder have. It's like every word out of my mouth was coming out as nothing but the jibberish like in Peanuts comics. It was after dealing with her that I decided I was done. When people say things like "I don't understand why you don't just go to a doctor, maybe they can help you out", I remind them loudly of the Neuro From Hell.

Quote:
Okay, stepping down and away from my soapbox before I start ranting about how a doctor diagnosed my father's MD as a slipped disc for years. Freaking idiot.
My mother had a rare blood cancer that went almost 6 months undiagnosed by doctors in her area. At first they thought it was anemia - but she was "losing" literally so much blood that she would have to get a blood transfusion to survive at least every week, and sometimes more often. They continued to shrug their shoulders, and she landed in the hospital after collapsing in the parking lot as she was heading into work, had to be life-flighted to what is now my local hospital but at the time was almost 3 hours away from us because it was so serious. She underwent a surgery and had to get a balloon (or something like that) in her leg and her lungs because of deadly blood clots that were inches away from moving into her lungs and killing her. She died less than a year after she was finally properly diagnosed and underwent treatment and a bone marrow transplant in Chicago's Cancer Treatment Center of America. As far as I know, officially it was complications from the bone marrow transplant that killed her - but I still wonder if she'd been properly diagnosed sooner instead of doctors just shrugging their shoulders and going "I dunno" for 6 months, if she'd have survived.

By the way, I know some of you work in the medical field - trust that I know how hard your jobs are and respect you for the work you do. Like, my mom had some of the greatest nurses ever while she was fighting. But I've encountered some bad doctors, and I admit I'm still bitter and resentful about them in particular.
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Old 07-07-2021, 11:20 AM
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My God, this picture looks great! There's nothing extra; the colors are perfectly matched. All I would change in this picture would be to add some noise to the image with the cards. Although every artist sees things differently, the long tail is not a big issue. You can leave it at that. As a somewhat venturesome person, I will hang this painting in my home. I have one picture hanging in my room so far of my casino winnings. I took a screenshot of my winnings and changed it slightly. The screenshot is because I won $8,500 on the casino app. It's was my third time playing in the app. Found the casino at http://casinoexpressindia.com/livecasino and started playing.
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Old 07-07-2021, 01:50 PM
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When people say things like "I don't understand why you don't just go to a doctor, maybe they can help you out", I remind them loudly of the Neuro From Hell.
We've got a few of those here where I live too.

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As far as I know, officially it was complications from the bone marrow transplant that killed her - but I still wonder if she'd been properly diagnosed sooner instead of doctors just shrugging their shoulders and going "I dunno" for 6 months, if she'd have survived.

By the way, I know some of you work in the medical field - trust that I know how hard your jobs are and respect you for the work you do. Like, my mom had some of the greatest nurses ever while she was fighting. But I've encountered some bad doctors, and I admit I'm still bitter and resentful about them in particular.
I'm so sorry about your mom. And you are so correct when you say working through issues with some doctors/nurses can be nerve-wracking at best and an experience from hell at worst.

My youngest daughter has all the issues, unfortunately. When she was 14 she was diagnosed with scoliosis, then at 15 she found out she was anaphylactic to carrots and allergic to almost every type of pollen/dust/nuts and more and had asthma (had no idea that cough she had was asthma!) (she now has weekly allergy shots) and then a year later she was diagnosed with myoclonic seizures - we thought the tremors and shaking and jerking had to do with her back and even her pediatrician was baffled. An EEG said otherwise. So that led us down the road to seizure meds. Some of them can make you have intrusive thoughts. They switched her meds and she lost 12 pounds in less than 2 weeks (and she's not a big girl - she was down to 95 pounds) and I couldn't get the doctor's office to return my phone calls to get help to switch her back to the original meds. VERY, VERY, long story short - finally got the nurse prac's nurse to talk to us, she talked to my daughter for 30 seconds at most, determined her to be suicidal and had us take her to the emergency room and told us they would help us get her back onto the original meds. Got to the ER and they locked us in a room, wouldn't believe anything we said, said that she could be having these thoughts on her own. Would not listen to me about the problems with the weight loss or anything else. Wouldn't let us leave. Finally told me they were going to transfer her to another hospital to regulate her meds (LIE) which we believed. Transferred her by ambulance at 3am and proceeded to take our phones and lock us in a room. Took my daughter from me and locked her up and didn't give her any meds...she started having seizures. They called me as they are not allowed to give any meds without my consent and wanted to give her the meds the were causing the intrusive thoughts. I had to hunt down her old neurologist to get him to contact the other doctors in the facility to give her old meds as the nurse practitioner that prescribed the meds that gave her those thoughts told me they could no longer help her. The only blessing that came out of this was I had a blood pressure monitor visit with my OBGYN a few days later and I fell apart telling her what we were going through and that I was trying to get her an appointment at Oshner's in NOLA. Come to find out my Dr. best friend is a neurologist. She text her what was going on and we had an appointment with her 24 hours later. They released her from the facility the next day with the diagnosis of Secondary depression due to medication. ABSOLUTELY DUH!!! I told them that. So now she's seeing a therapist because she has some minor PTSD from being taken from her home and locked up for a week. So the takeaway from this for us is...don't ever tell the doctor that prescribed you meds with the side effect of suicidal thoughts that you are having them...you might just find yourself locked in a psych ward without help. If I thought for one minute my daughter was actually suicidal I would have locked her up myself. I knew 100% it was the medication and that she just needed to be taken off of it. I also knew that with seizure meds you don't just quit them cold turkey and THAT IS WHAT THEY DID!!! The seizures were so bad they were going to transfer her to another hospital. An absolute horror story with all that. The therapist that she sees now is also horrified at what happened. And of course, we have the hospital bill for it all too.

So that's my short story of what happened. I'd still like to get 5 minutes alone with the doctor that locked up my daughter and wouldn't listen to me - but then I'd probably be wearing an orange jumpsuit somewhere.
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Old 07-09-2021, 12:38 AM
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My youngest daughter has all the issues, unfortunately. When she was 14 she was diagnosed with scoliosis, then at 15 she found out she was anaphylactic to carrots and allergic to almost every type of pollen/dust/nuts and more and had asthma (had no idea that cough she had was asthma!) (she now has weekly allergy shots) and then a year later she was diagnosed with myoclonic seizures - we thought the tremors and shaking and jerking had to do with her back and even her pediatrician was baffled. An EEG said otherwise. So that led us down the road to seizure meds. Some of them can make you have intrusive thoughts. They switched her meds and she lost 12 pounds in less than 2 weeks (and she's not a big girl - she was down to 95 pounds) and I couldn't get the doctor's office to return my phone calls to get help to switch her back to the original meds. VERY, VERY, long story short - finally got the nurse prac's nurse to talk to us, she talked to my daughter for 30 seconds at most, determined her to be suicidal and had us take her to the emergency room and told us they would help us get her back onto the original meds. Got to the ER and they locked us in a room, wouldn't believe anything we said, said that she could be having these thoughts on her own. Would not listen to me about the problems with the weight loss or anything else. Wouldn't let us leave. Finally told me they were going to transfer her to another hospital to regulate her meds (LIE) which we believed. Transferred her by ambulance at 3am and proceeded to take our phones and lock us in a room. Took my daughter from me and locked her up and didn't give her any meds...she started having seizures. They called me as they are not allowed to give any meds without my consent and wanted to give her the meds the were causing the intrusive thoughts. I had to hunt down her old neurologist to get him to contact the other doctors in the facility to give her old meds as the nurse practitioner that prescribed the meds that gave her those thoughts told me they could no longer help her. The only blessing that came out of this was I had a blood pressure monitor visit with my OBGYN a few days later and I fell apart telling her what we were going through and that I was trying to get her an appointment at Oshner's in NOLA. Come to find out my Dr. best friend is a neurologist. She text her what was going on and we had an appointment with her 24 hours later. They released her from the facility the next day with the diagnosis of Secondary depression due to medication. ABSOLUTELY DUH!!! I told them that. So now she's seeing a therapist because she has some minor PTSD from being taken from her home and locked up for a week. So the takeaway from this for us is...don't ever tell the doctor that prescribed you meds with the side effect of suicidal thoughts that you are having them...you might just find yourself locked in a psych ward without help. If I thought for one minute my daughter was actually suicidal I would have locked her up myself. I knew 100% it was the medication and that she just needed to be taken off of it. I also knew that with seizure meds you don't just quit them cold turkey and THAT IS WHAT THEY DID!!! The seizures were so bad they were going to transfer her to another hospital. An absolute horror story with all that. The therapist that she sees now is also horrified at what happened. And of course, we have the hospital bill for it all too.
Wow, what a nightmare that was for all of you. America is the most over medicated country in the world, which is scary in and of itself, but some of the adverse reactions to those meds is downright terrifying. And mental health issues are a horror all their own.

As my mom slipped farther and farther into dementia, she because aggressive in certain circumstances, she couldn't speak, so she would growl and snap at people like she was going to bite them if they were bothering her, and the nursing home would ship her to the mental hospital. I kept telling them that my mom had been molested as a child, so no male nurses on person care and to keep her covered at all times, because she felt vulnerable naked and was afraid, which is why she growled. Even in the shower, I would put a towel over her and clean her underneath it. The towel got soaked, but so what.

I struggled to get people to listen to me, even though I was her guardian and knew what I was talking about. We finally moved her to a different nursing home rather than having her go back and forth to the mental ward all the time and the staff there listened to me. They even worked with mom to get her to trust the male nurses so they could help her when needed. It look a little time and patience, but they did it and it was worth it for them, me and especially my mom. She was lost, confused and scared and in need of kindness and understanding, not the mental ward.

Seriously I almost punched a nurse in the first nursing home right in the face because she was such a b!#ch and called my mom crazy and pinched her. I saw her do it and called her out on it because that kind of behavior has no place in health care. You can believe I filed a long list of complaints against that woman, took a photo of my mom's arm where it was bruised and made sure that she was properly discipline, ie. I got her butt fired. Dementia is hard and most of the time the patient is pretty helpless so being left with someone who gets frustrated and pinches is not acceptable.

I know that there are some really wonderful people in health care doing a fantastic job every day, but there are also ones who suck. It isn't a job I would want to do at all because I do not have the patience for it. I took care of both of my parents and it was super hard and they were my parents who I loved. Doing that for a stranger, no way. You could not pay me enough.
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