Doctorsrcrap: can't cry and frustrated

[Doctorsrcrap]

I hope I didn't upset anyone. I was just giving an update. 

 

My microbiome was done by a natropath and rhey checked everything. At this point I'm going to do my own head in if I can't trust anyone is saying to me. How do uou get help if you are saying everyone I talk to doesn't know what they are on about. How are you supposed to get better. Its crazy 

[Happy2Heal]

 

[Doctorsrcrap]

I wanted to try and show you pictures of my ratties but the forum won't let me 

[Doctorsrcrap]

Oh I have managed one! 

[Farm24]

10 hours ago, Doctorsrcrap said:

I hope I didn't upset anyone. I was just giving an update. 

 

My microbiome was done by a natropath and rhey checked everything. At this point I'm going to do my own head in if I can't trust anyone is saying to me. How do uou get help if you are saying everyone I talk to doesn't know what they are on about. How are you supposed to get better. Its crazy 

Did you notice a difference in symptoms as you tapered the propo

[Happy2Heal]

8 hours ago, Doctorsrcrap said:

I wanted to try and show you pictures of my ratties but the forum won't let me 

oh that is so sweet and thoughtful of you!!
yeh I wasn't able to post photos here except once a long time ago.

I'm not super tech savvy.

 

but if you want my email address I can send it to you in a message.

 

I would love to see them. 

[Happy2Heal]

8 hours ago, Doctorsrcrap said:

Oh I have managed one! 

 

SQUEEEEEEEEEE!! oh my goodness, how adorable!! 

what is his/her name?

 

 

 

[Farm24]

17 hours ago, Doctorsrcrap said:

If you are saying propranlol could cause it does that mean it's not reversible????? 

I would think anything can be repaired. I just did a Google or propranolol side effects and they look similar in many ways to an ssri.  So I would assume it wouldn't be out of the realm to think this could be wirhdrawl and it will die down

[Farm24]

Reddit has people reporting side effects of that too.  Just a heads up, but that would explain why it came on so late? Idk. 

[Doctorsrcrap]

Happy to heal that one is called sweep, I will try and post one of sooty soon. 

 

@Farm24

At higher doses cutting rhe propranalol was easy. I had trouble getting passed 20mg and kept having to update. Mainly I noticed my heart rate was very fast. And it still is at rest its near enough always over 90bpm. 

[Barry2954]

21 hours ago, Doctorsrcrap said:

I hope I didn't upset anyone. I was just giving an update. 

 

My microbiome was done by a natropath and rhey checked everything. At this point I'm going to do my own head in if I can't trust anyone is saying to me. How do uou get help if you are saying everyone I talk to doesn't know what they are on about. How are you supposed to get better. Its crazy 

I hate to tell you but it sounds like you're starting to get to the point that I was at decades ago. I had so many issues with bad information from doctors that I turned to naturopaths. One of them caused me several years of muscle cramping by having me taking magnesium. It turns out that this happens if it's not balanced with calcium. A family friend swears blind that one naturopath nearly killed him with their bad advice. I found that professional advice on health, more often than not, wasn't worth the time of day and needed to be cross-checked. It's extremely time consuming so you'll be better off if you can locate a doctor who gets great online reviews for their ability to identify and cure patients health issues, rather than just because their patients like them.

[Doctorsrcrap]

I'm not being funny but how the hell am I supposed to know who's a good doctor and who's a bad doctor. Its just stupid. 

I think I will just give up looking for answers then cos any advice I get could be useless. I dint really know what I'm supposed to do if you are saying no one can be trusted. That isn't going to work. 

[Barry2954]

I can only wish you good luck then.

[Doctorsrcrap]

Well I don't really understand what you are trying to say? 

[Happy2Heal]

5 hours ago, Doctorsrcrap said:

Happy to heal that one is called sweep, I will try and post one of sooty soon. 

cute name too!!

thanks so much for sharing the photo

 

how are you today?

 

 

I know it is VERY frustrating to not have answers about where the pain is coming from 

and to not know who to trust nor what to do that will help you.

 

While all that is being sorted out, there are some things you can do that might make you feel a little better, even if it doesn't get rid of the pain

 

I am not a good one to give advice on this topic to be honest. I have chronic pain myself and some of it I have just learned to live with. Do I like it? no of course not.

but it's not going to go away, so I've somehow found a way to push it into the background and not think about it very much

 

I have NO clue how I did this though -I wish I  knew-  I would share it with you.

 

it all sort of happened over time.  I guess maybe out of necessity, I don't know.

 

 

 

I guess you have to just keep trying different things til you find what works for you

 

 

 

 

 

 

 

 

 

[Happy2Heal]

44 minutes ago, Barry2954 said:

if you can locate a doctor who gets great online reviews for their ability to identify and cure patients health issues, rather than just because their patients like them.

@Doctorsrcrap

 

this is what @Barry2954said about what he thinks about how to find a doctor you can trust

 

I can't help you with finding a dr

You and I have the same basic attitude- that doctors basically suck.

 

when you are going in to a situation with this belief or attitude, you're going to be on edge and not expecting much, and this may color the whole experience

 

 I am going thru something very similar, and I honestly do not have any answers about how to address this

 

It would help me in my current struggles with facing surgery. 

 

we are kind of in the same boat, mine is an orthopedic issue that can really only be helped with surgery now (the deformity is physical and no meds or PT will help to correct that) I have put up with the pain for a long long time and want it to be over

But I am terrified of some dr giving me a drug or drugs that will cause a bad reaction

and so I am on the verge of cancelling the surgery

 

your boat is different, in that you don't know where this pain is coming from

 

but for both of us- we have ongoing long term pain and while we are figuring out what to do next,

we need to find a way to get from one day to the next as best we can

 

there is no magic answer.

we just keep trying to figure it out day to day

 

right?

but we can do this, though

 

what sorts of things do your rats like to do? are they climbers or nester or chewers or.........?

 

 

 

 

[Barry2954]

1 hour ago, Happy2Heal said:

@Doctorsrcrap

 

this is what @Barry2954said about what he thinks about how to find a doctor you can trust

 

I can't help you with finding a dr

You and I have the same basic attitude- that doctors basically suck.

 

when you are going in to a situation with this belief or attitude, you're going to be on edge and not expecting much, and this may color the whole experience

 

 I am going thru something very similar, and I honestly do not have any answers about how to address this

 

It would help me in my current struggles with facing surgery. 

 

we are kind of in the same boat, mine is an orthopedic issue that can really only be helped with surgery now (the deformity is physical and no meds or PT will help to correct that) I have put up with the pain for a long long time and want it to be over

But I am terrified of some dr giving me a drug or drugs that will cause a bad reaction

and so I am on the verge of cancelling the surgery

 

your boat is different, in that you don't know where this pain is coming from

 

but for both of us- we have ongoing long term pain and while we are figuring out what to do next,

we need to find a way to get from one day to the next as best we can

 

there is no magic answer.

we just keep trying to figure it out day to day

 

right?

but we can do this, though

 

what sorts of things do your rats like to do? are they climbers or nester or chewers or.........?

 

 

 

 

To start, if possible, go to an online website for reviewing doctors in your neighbourhood and look for doctors whose patients say they've diagnosed conditions which no other doctor has recognised. Those could be the doctors who are worth our time.

 

Then make sure that you have the best explanation for your condition written down when you meet with them. It's wonderful being in control of a meeting with medical professionals. The hospital rheumatologist who investigated my autoimmune myopathy recommended that I be given corticosteroids, as is generally recommended. I shot down that idea right away with my explanation that the respiratory issues I have are driving the formation of new blood vessels and that this could result in cancer. The autoimmune antibodies which I have destroy an enzyme which drives the formation of the new blood vessels, in a chronic situation, and so helps to prevent the development of cancer. She didn't know what to say. If you find that your doctor is one of the really good one's, and you've presented them with a good explanation you're likely to find them complimenting your work and agreeing with you.

 

It comes down to what they taught us in school; do your research.

[Happy2Heal]

3 hours ago, Barry2954 said:

She didn't know what to say. If you find that your doctor is one of the really good one's, and you've presented them with a good explanation you're likely to find them complimenting your work and agreeing with you.

hmm I have never had anyone compliment me for looking things up on my own, learning about some condition I had (or might have had) and sharing what I learned with the dr 

Never.

Things must be very different where you live,
Here in the states most drs want to be in total control, make fun of pts who look things up on their own, many will flat out shut you down if try to tell them anything you've learned, they'll say things like, "and just where did you get your degree?"
or they'll roll their eyes if you mention you read something on the internet, which makes me want to smack them since many of their classes are ON the internet

jacka$$es

 

 

I have put in hundreds of hours listening to lectures and reading actual research papers on PubMed, took a short online class to learn more about how to tell evaluate these papers etc

And made huge changes to my lifestyle, reversing a whole bunch of health conditions and losing over 50lbs and guess what?

Drs are now scared of me.

I challenge their assumption that pts are lazy and wont' do anything for themselves, those that are aware of the lifestyle changes you can make to improve your health, that is, which are very few. 

 

the others drank the koolaide and believe in Big Pharma, pills and potions and procedures, and are very wary of anyone who comes thru their door looking for REAL healing, and who got off a dozen different meds and is obviously in peak health without any input from them.

 

They make a lot of money off of chronic illnesses, with pts having to keep coming back for more pills and tests- and the vast majority of those pts only get sicker

they don't cure anyone

they dont' even mention it, they talk about "managing" your "condition" - why cure someone, you don't make any $$ off them if you do that.

 

I asked  a dr how I could reverse non alcoholic fatty liver disease- she said you can't

a quick google search proves otherwise, it takes as little as losing 10% of your body wt to reverse NAFLD

🙄

 

it's a twisted system that is on the verge of collapse.

The drs don't like it, the pts don't like it but the drug companies and those companies making medical devices and the like are wanting to keep things they way they are, they are making out like literal bandits with this system of keeping everyone sick.

 

 

 

anyway my point is, that it depends on where you live and who you see, how trying to take control over your own health is judged by drs

 

 

also not everyone has the time, the resources or the intellectual capacity to do the kind of research you've mentioned

 

[Barry2954]

2 hours ago, Happy2Heal said:

hmm I have never had anyone compliment me for looking things up on my own, learning about some condition I had (or might have had) and sharing what I learned with the dr 

Never.

Things must be very different where you live,
Here in the states most drs want to be in total control, make fun of pts who look things up on their own, many will flat out shut you down if try to tell them anything you've learned, they'll say things like, "and just where did you get your degree?"
or they'll roll their eyes if you mention you read something on the internet, which makes me want to smack them since many of their classes are ON the internet

jacka$$es

 

 

I have put in hundreds of hours listening to lectures and reading actual research papers on PubMed, took a short online class to learn more about how to tell evaluate these papers etc

And made huge changes to my lifestyle, reversing a whole bunch of health conditions and losing over 50lbs and guess what?

Drs are now scared of me.

I challenge their assumption that pts are lazy and wont' do anything for themselves, those that are aware of the lifestyle changes you can make to improve your health, that is, which are very few. 

 

the others drank the koolaide and believe in Big Pharma, pills and potions and procedures, and are very wary of anyone who comes thru their door looking for REAL healing, and who got off a dozen different meds and is obviously in peak health without any input from them.

 

They make a lot of money off of chronic illnesses, with pts having to keep coming back for more pills and tests- and the vast majority of those pts only get sicker

they don't cure anyone

they dont' even mention it, they talk about "managing" your "condition" - why cure someone, you don't make any $$ off them if you do that.

 

I asked  a dr how I could reverse non alcoholic fatty liver disease- she said you can't

a quick google search proves otherwise, it takes as little as losing 10% of your body wt to reverse NAFLD

🙄

 

it's a twisted system that is on the verge of collapse.

The drs don't like it, the pts don't like it but the drug companies and those companies making medical devices and the like are wanting to keep things they way they are, they are making out like literal bandits with this system of keeping everyone sick.

 

 

 

anyway my point is, that it depends on where you live and who you see, how trying to take control over your own health is judged by drs

 

 

also not everyone has the time, the resources or the intellectual capacity to do the kind of research you've mentioned

 

Trust me that most doctors here are like the one's you have; protective of their monopoly on health. They love to judge their patients rather than cure us. During a bulk up phase in bodybuilding one time I experienced digestive issues. The doctor was eager to write a paper about my case, detailing a new form of psychological condition, telling me to just take antacids. Soon afterward I learned that medical advice to restrict salt intake had been the cause of my digestive issues. Their focus isn't so much on helping patients but on how their patients can benefit them. You've likely heard of all of the incentives which pharmaceutical companies which offered to doctors who prescribe their drugs to patients as it played a major role in your countries opioid crisis.

 

In Australia there is a large percentage of the population which would prefer to only visit doctors when we are severely ill, since that's really the core skillset which they have. It is only government requirements and incentives which force us to go to doctors for routine health issues, which they really aren't so good at. The other issue with doctors is that they are required to follow instructions from their local trade union. In the US that's the American medical association. Doctors who follow their instructions can't be held legally responsible if treatment of a patient goes wrong so most doctors like to stick to the guidelines which the unions impose on them.

 

That said, I recently watched a piece of investigative journalism on a change occurring in the US. It was about doctors who have begun to rebel against the system which has been taught to them at university. Medical research has left most doctors looking like they think they're still living in the middle ages and not all doctors are willing to accept being so far behind the science. It might take some looking but, depending on where you live, you may be able to find someone worth going to if you try networking with others online in your region, sharing information about good doctors. I have an autoimmune form of myopathy called myositis and found a lot of people sharing information about doctors who understand the rare disease on myositis forums.

[Happy2Heal]

@Barry2954

perhaps we could take this discussion to an off topic forum or something, rather than clutter up @Doctorsrcrap's thread ok?

 

How are you doing @Doctorsrcrap?

 

every night I say a prayer that you will wake up the next day and the pain will be gone

which could happen esp if it does turn out to be a withdrawal symptom

 

 

[Jaffa]

I do the same happytoheal. Hoping and praying that the pain improves doctorsrcrap. 🙏🏻 

 

Is there any improvement at all? I love your ratty 💕

[Doctorsrcrap]

You are all very sweet so thank you.

I must agree I have never come across a doctor who likes it if you have educated yourself. This is normally met with condescension and a telling off. 

The pain is so overwhelming to be honest I don't have the capacity to keep researching and researching. I'm exhausted from trying to work out whsts wrong with me. 

[Happy2Heal]

I just saw this comment made by @FindRest  to another member who is struggling with pain and other symptoms

 

sounds like great advice to me:
" I think the best we can do is find coping skills to deal with the pain, along with acceptance, as fearing more pain or getting hung up in that downward spiral thinking it will never go away, will only make things much worse. Chasing a pain-free status is exhausting and mostly futile especially when we don’t know exactly what is causing it in the first place. "

 

 

 

[Doctorsrcrap]

I've tried to research reasons that could cause the burning pain in the buttocks but I've not had any luck.

The specialist said we have ruled out all inflammatory conditions for some reason your nerves are just really sensitive.

No **** sherlock. Bur why! 

[Kostas]

Sometimes muscle knots are formed, deep in fascia, enveloped in peritoneal mass..In some cases are quite painful, and their cause is unknown. Sometimes they dissolve by themselves, or they can persist for a long time. In some cases you can even feel them in the touch. Massage can offer temporary relief for only a couple of days. There is no known cure, and only acupuncture or steroid injection directly on the knots in a pain clinic, has been reported to offer more permanent relief in some cases...

Edited June 18 by getofflex
removed extra spaces

[Doctorsrcrap]

@Kostas

So you are saying i am stuck with it? 

[Barry2954]

Nothing is ever certain. Start taking action to try to calm any inflammation and everything may sort itself out. Make sure that you have plenty of healthy oil in your diet; coconut oil, olive oil, and so on. Your nerves rely on oil and B vitamins for health so a deficiency in either can result in the issues which you have discussed. A zinc deficiency can also lead to similar issues. So make healthier choices and you may find that the issues gradually resolve with time.

[Tom2020]

Dear DRC,

 

Am I right in thinking you have not been to a pain clinic? That seems essential to me. They are after all the experts in pain.

 

I had a seminar on chronic pain recently. They said as a result of new science about 20 years ago there has been a paradigm shift in pain management, but it takes a long time for this to filter to non-specialists. Some doctors still talk about pain signals or will even say your pain isn't real. That just reveals their ignorance. (It's refreshing for once to hear the real experts saying some doctors don't know what they're talking about!)

 

To summarise:

• Since they cannot find any cause it suggests you have chronic pain, not the usual acute pain which we get in response to tissue damage.
• There are no pain sensors in your body. Pain is a response generated by the brain when it decides you're in danger. Sometimes the brain gets it wrong and generates chronic pain.
•  You keep asking what is causing your pain. The answer is: your brain thinks you're in danger. Luckily, it can be trained to stop doing that. In the next post I'll give an extract from a handout. I'd love to upload the whole thing for you but it's too big to attach.
•  How do you train your brain to stop generating pain? Sadly there's no magic wand. You have to do it the hard way by working every day at calming your mind and the rest of your nervous system. Mindfulness training is a great tool. In essence, it's learning to be aware of things but not react to them. You need to retrain your brain to be aware of ordinary sensations from your body and not respond with pain. You've had a lot of other great suggestions recently on ways to calm your system and raise your mood and you need to  experiment and find things that work for you. It's not easy especially when you feel you have so little to give but there's no other way to deal with this kind of pain.

 

By way of encouragement, here is a link to a photo of Thích Quảng Đức burning himself to death.

https://en.wikipedia.org/wiki/Buddhist_crisis

 

Some may find it distressing but I mention it because it fills me with awe - it's evidence of what training the mind can do. He was a senior Buddhist monk who burnt himself in a busy street in Vietnam in 1963 in protest over his government's policies. If you do look at the photo you'll see he's meditating and sitting perfectly still even though he's already very badly burnt. He didn't move a muscle the whole time. I had assumed he was ignoring the pain but the pain seminar suggests he may not have felt any pain - his brain felt safe so it wasn't generating pain. Either way it's remarkable. (If you click through to his Wikipedia page you'll find another photo taken a little later showing him in the same position. This photo won the 1963 World Press Photo of the Year.)

 

Now, he must have spent countless hours over his career mastering meditation, including three years as a hermit. People can do amazing things! You don't need to do as much training as he did to find some relief from your pain. Let his skill and his dedication to practising inspire you.

[Tom2020]

REVIEW: A NERVOUS SYSTEM THAT CAN CHANGE

“Neurons that fire together wire together” - Donald Hebb

• With persistent pain the nervous system practices sending danger signals and gets really good at paying attention to the danger signals. This change leads to an overprotective system.

• There is no single pain generator in the human nervous system. The pain we experience is the product of the interaction of the original tissue damage and the nervous systems ability to adapt sensations and how we cope.

It is possible to change anything the nervous system has adapted to. It will take learning new skills, considerable effort and repetitive practice and determination!

 

With persistent pain the nervous system changes

 

Neurons:

• It takes less stimuli to activate neurons – leading to more danger signals.
• The delay time for excitability decreases, allowing each danger neuron to send more signals

Spinal cord:

• Neurons in the spinal cord become more easily excited. The more exited they are the easier it is to pass the message along. It will require fewer signals from your body to feel pain.
• The neurons in the spinal cord will build more sensors when pain persists. With more sensors they can detect more danger chemicals sent from the nociceptors and send more danger signals to the brain. The neurons in the spinal cord can misinterpret normal sensations (touch, stretch and movement) as danger signals. So a touch can become painful.

 

Every 3 to 4 days every sensor in your body will be replaced. This does not happen all at once. If the body is in a wound up state with lots of stress the new sensors will be more sensitive. If the body and nervous system are calmer the neurons will be replaced with less sensitive ones. The more time the system is in a calmer state the more chance there is to create calmer, less sensitive sensors.

Unfortunately life happens and it is not always realistic for someone with persistent pain to have 4 days + of calmness and no stress. That is why it takes much longer than that to significantly change pain.

 

Brain:

• The area from which the brain receives danger signals will be represented more as the brain receives more persistent danger signals. That means more neurons in your brain will be more attentive to messages that come from that body part.
• The brain starts to change the chemicals it produces and releases. Some of them can stimulate the fight /flight/freeze response which feeds right back into the pain system. One thing that happens is that sensors on your danger neurons change so that they become sensitive to adrenaline. So each time something stresses you and the body releases adrenaline the danger neurons will get excited and start sending danger signals towards your brain. Adrenaline usually means trouble so your system is adapting and becoming really good at trying to protect you from danger.

• Your brain can make painkillers called endorphins. They are made when you experiencing happiness and joy. In the brain and spinal cord the endorphin works by blocking danger signals (more adrenaline = more pain, more endorphin = less pain). It can be difficult to be happy or laughing when you are in pain. Finding ways to bring joy is a powerful technique

 

You can learn to have fewer regions of your brain react to pain this will lead to feedback that is cycled back into the system and you will experience less pain.
 

As pain persists the nervous system pays more attention to the danger signals. So more brain cells are listening and normal signals can be interpreted as danger which then brings even more attention to your protection system. People can learn to have less pain by learning to acknowledge the painful body part on purpose without having an emotional reaction to it. Often people try to avoid the pain. Ignoring pain can cause the nervous system to pay even more attention to it. Acknowledging pain, without the need to respond will help change the nervous system as well as modifying how the body reacts. Is it easy? – No! But it is possible.

 

The nervous system provides us with experience and not with facts!

 

In summary:

• Pain is an output of the brain, designed to protect you.
• It’s not just about the tissues of the body
• 100% of the time pain is a construct of the brain and a 100% of the time it is real

[FindRest]

@Tom2020 has given you a very good and detailed explanation of the nature of pain. I suggest you print it off and re-read it often. My PT explained it very similarly to me. This doesn’t mean the pain isn’t real. It is real. But once you grasp how your brain fires the pain signals, you can start thinking about it differently and actually start to rewire your brain to handle the signals differently. It’s like once I started giving the pain less of my time and effort trying to get rid of it, the more it lessened. The less I worried about it, the better I was. Yes, I am still in pain daily, but it doesn’t rule my life. I now have coping skills to help manage the pain I do get. Like I’ve said before, I go to PT, plus see a massage therapist, use heat, stretching, and a ton of other things when needed.

 

i also agree that it would be wise to go to a pain clinic if your NHS allows it. Here in the states, a pain clinic does much more than prescribe drugs, injections, etc. Good pain clinics here search for the origin of the pain and go from there to formulate a plan for each individual of what might work for them. They will also help you understand the nature of pain.

Edited June 18 by FindRest

[Farm24]

A lot of people report small fiber neuropathy from these drugs. That can heal but takes time were you tested 

[Jaffa]

@Doctorsrcrap

So much to digest in your thread. Great stuff! I just want to add that today I listened to a conversation between Josef Witt Doerring and Chris Palmer about the keto diet being used for pain. Is this something you might try? 

[CharlieBrown]

I'm supposed to be gone!
I talk circles around my Dr. about CYP liver functions.
I am the only patient. I asked him. Most people don't read.

Thankfully I've known him for so long. He knows I know what I am saying.

He even uses the computer or even a textbook to make sure what I am saying is correct!

I am.

Stay informed. I took some prescriptions that I would never have taken.
had I read the wikipedia page. (Let alone white papers from JAMA, CMJA or BMJ)

 

Maybe find a new Dr. if you can. Mine will retire soon.
But then you have to tell everything to a new dork.

That I talk circles around.

 

Man, I should be a Dr... or at least a pharmacist. I talk circles around them.
Ignore the Dr.s who are ignorant, as best you can.

 

Take care of yourself! You know how you feel.
 

Edited June 18 by CharlieBrown
typo/breaks

[Doctorsrcrap]

Hi guys thanks so much fir all of this.

I have been doing mindfulness and trying to train my brain that it is safe. 

I eat healthy, fruits. Veg, healthy oils etc etc

I am actually seeing a pain specialist today 

[Doctorsrcrap]

Just got home from the pain specialist. He said he can't really help because he has no idea what's wrong. 

 

I'm trying to follow the way of Alan gordon in his book and also a bit of hypnotherapy. 

 

[Barry2954]

The sciatica I had, over a decade ago, was caused by gluten but glucosamine (from shellfish so don't try it if you're allergic to seafood) worked for me to provide temporary relief. I was lucky enough to know a store which sold the powder in bulk form since I had to take a tablespoon of it three times a day for around a week to get two or three weeks relief. Don't buy it in pill form; the small amount in them just isn't going to cut it. https://utswmed.org/medblog/supplements-for-back-joint-muscle-pain/

 

Another seafood based pain/arthritis product is lyprinol, from green lipped mussel. A friend who was almost crippled with pain, due to joint degradation, regained most of his function and complete relief from his pain. It doesn't work for everyone and I haven't yet tried it myself.