Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Hi,
Forgot my name on here.lol. Brain fog I guess. Should show up when you read this.
Been away from here awhile.
Have spinal problems since age 14. Got worse during a bad pregnancy 48 yrs ago and chronic in 1977.
But I managed to stand and teach math in college for 25 years full time but after 2 auto accidents, fibromyalgia, and a balance problem in 2005 my PT convinced me to not go back. I still did part time teaching on and off until I had a stroke in 2009 – from which I supposedly recovered but I have so many problems they don't know which one is affecting my balance. I also have diabetic neuopathy in the nerves in my feet that tell us where we are.
I have a married son who helps do things in my house but he has 4 kiddos- the oldest is autistic and his wife now works out of necessity.
I lost my hubby who did everything for me 5 years ago. He was my best friend on earth and I just cannot get over losing him. So I deal with anxiety and depression.
My knee got worse than my back and I only have a lady who cleans 3 hours a week.
I have been turned down for subsidized car service 3 times. I am too embarrassed to say how many meds I am on. They tell me to take 3 buses to see my son. I haven't been on a bus in over 5 years.
I feel like a complainer writing all this but unfortunately it is my life.
Most of my few friends have moved away or passed away and my neighbors are almost all from a different ethnic group and know none of this. They probably think that I am rich cause I take car service and cabs.
I wish I could go to lunch with some of you or visit or have you visit. You would understand that I cannot entertain you and we would have a great time and forget about reality for awhile.
I wish you all the best from the bottom of my heart.
Toni aka Marcy K

@marcyk

Hi,
Forgot my name on here.lol. Brain fog I guess. Should show up when you read this.
Been away from here awhile.
Have spinal problems since age 14. Got worse during a bad pregnancy 48 yrs ago and chronic in 1977.
But I managed to stand and teach math in college for 25 years full time but after 2 auto accidents, fibromyalgia, and a balance problem in 2005 my PT convinced me to not go back. I still did part time teaching on and off until I had a stroke in 2009 – from which I supposedly recovered but I have so many problems they don't know which one is affecting my balance. I also have diabetic neuopathy in the nerves in my feet that tell us where we are.
I have a married son who helps do things in my house but he has 4 kiddos- the oldest is autistic and his wife now works out of necessity.
I lost my hubby who did everything for me 5 years ago. He was my best friend on earth and I just cannot get over losing him. So I deal with anxiety and depression.
My knee got worse than my back and I only have a lady who cleans 3 hours a week.
I have been turned down for subsidized car service 3 times. I am too embarrassed to say how many meds I am on. They tell me to take 3 buses to see my son. I haven't been on a bus in over 5 years.
I feel like a complainer writing all this but unfortunately it is my life.
Most of my few friends have moved away or passed away and my neighbors are almost all from a different ethnic group and know none of this. They probably think that I am rich cause I take car service and cabs.
I wish I could go to lunch with some of you or visit or have you visit. You would understand that I cannot entertain you and we would have a great time and forget about reality for awhile.
I wish you all the best from the bottom of my heart.
Toni aka Marcy K

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@marcy Have you tried Access? Its in Calif.I dont know if its in all states I cant walk more then 1/2 a block to get a bus access is subsidized by Gov. Here you should be able to get it.

@grandmar

@dawn_giacabazi
Dawn,
That is what people don't understand when it comes to chronic or acute pain.
I even had this discussion with the nurse practioner the other day.
She says she see a big difference in my overall demeanor.
I tried to explain to her that when you are in pain (regardless of how much), ALL the time, it is exhausting, physically, mentally and emotionally.
It just 'gets' to you.
I would have thought she knew this, but apparently she didn't.
Many people think that just because your pain level is not too high, you should be 'feeling' good.
I suppose what they say about when you can't 'see' the illness, it is difficult for people to understand it.
Guess I should wrap each part of my body that hurts.
This way, people will 'see' the pain.
They'll call me Mummy instead of Mommy. lol

Here's to a pain free day!
Ronnie (GRANDMAr)

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As an ex nurse who has suffered chronic pain for the past eight months due to chronic pancreatitis,which I’ve just had diagnosed, I think I’ve just realised that absolutely no one,with no matter how much training or experience, can tell or even begin to imagine how much pain another person is in. I remember being ‘conditioned ‘ to think “ you’re so many days post op, you can’t possibly need analgesia that strong”, and by the same token no matter how much training in psychiatry someone has, they can’t tell what someone else is thinking or what is going on in their head. If, by some miracle I ever went back to work, I would hope that this knowledge would make me a better, more understanding nurse.

@marcyk

Hi,
Forgot my name on here.lol. Brain fog I guess. Should show up when you read this.
Been away from here awhile.
Have spinal problems since age 14. Got worse during a bad pregnancy 48 yrs ago and chronic in 1977.
But I managed to stand and teach math in college for 25 years full time but after 2 auto accidents, fibromyalgia, and a balance problem in 2005 my PT convinced me to not go back. I still did part time teaching on and off until I had a stroke in 2009 – from which I supposedly recovered but I have so many problems they don't know which one is affecting my balance. I also have diabetic neuopathy in the nerves in my feet that tell us where we are.
I have a married son who helps do things in my house but he has 4 kiddos- the oldest is autistic and his wife now works out of necessity.
I lost my hubby who did everything for me 5 years ago. He was my best friend on earth and I just cannot get over losing him. So I deal with anxiety and depression.
My knee got worse than my back and I only have a lady who cleans 3 hours a week.
I have been turned down for subsidized car service 3 times. I am too embarrassed to say how many meds I am on. They tell me to take 3 buses to see my son. I haven't been on a bus in over 5 years.
I feel like a complainer writing all this but unfortunately it is my life.
Most of my few friends have moved away or passed away and my neighbors are almost all from a different ethnic group and know none of this. They probably think that I am rich cause I take car service and cabs.
I wish I could go to lunch with some of you or visit or have you visit. You would understand that I cannot entertain you and we would have a great time and forget about reality for awhile.
I wish you all the best from the bottom of my heart.
Toni aka Marcy K

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@marcyk
Hi Toni,
Welcome to our group!
Please do not feel like you are complaining.
All of us are SUFFERING from chronic or acute pain.
The reason we are here is because it gives us the opportunity to 'speak' what is on our mind without any judgement or criticism.
As far as the amount of meds you take, don't be embarrassed.
I take so many that I need to keep a running list because I cannot remember them all and the dosages I take.
I myself take 6 prescribed meds along with 8 supplements and 2 prescribed meds that I take as needed.
So, as you can see, you are not alone!

I am so sorry you are having so many issues and travel added to your problems.
We all have problems associated with our medical/mental/physical issues that we need to deal with one way or another.
As you become more active, you might find someone with similar issues and problems.
If you have the time, go back and read some older posts.

So ask your questions.
Make your statement.
Complain and vent.
Share the success

BTW…….I live in Central Florida and always love lunch dates.

Here's to a pain free day!
Ronnie (GRANDMAr)

Liked by gingerw

@carolel

As an ex nurse who has suffered chronic pain for the past eight months due to chronic pancreatitis,which I’ve just had diagnosed, I think I’ve just realised that absolutely no one,with no matter how much training or experience, can tell or even begin to imagine how much pain another person is in. I remember being ‘conditioned ‘ to think “ you’re so many days post op, you can’t possibly need analgesia that strong”, and by the same token no matter how much training in psychiatry someone has, they can’t tell what someone else is thinking or what is going on in their head. If, by some miracle I ever went back to work, I would hope that this knowledge would make me a better, more understanding nurse.

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@carolel
Thank you so much for sharing and your post.
I am sorry that you have been going through with your health, but I would be honored if I had a nurse like you.
Yes, a one size fits all does NOT work.
In reality, how many people follow the text book descriptions?
We, who have pain, have had it for different periods of time, different intensities, different body part affected, different causes, different reactions to meds, different support, different abilities, etc.
Knowing this, not by a book, but by living it, gives you or any person a knowledge that no one knows without living it.

Again, thank you for your post.
Have a pain free day!
Ronnie (GRANDMAr)

@grandmar

@carolel
Thank you so much for sharing and your post.
I am sorry that you have been going through with your health, but I would be honored if I had a nurse like you.
Yes, a one size fits all does NOT work.
In reality, how many people follow the text book descriptions?
We, who have pain, have had it for different periods of time, different intensities, different body part affected, different causes, different reactions to meds, different support, different abilities, etc.
Knowing this, not by a book, but by living it, gives you or any person a knowledge that no one knows without living it.

Again, thank you for your post.
Have a pain free day!
Ronnie (GRANDMAr)

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Ronnie My life journey in this crazy healthcare system has wrote so many addendums to the text book. Lol
Healthcare professionals commonly to a patients symptoms and try to fit it in the text book but as you and many others here know, some just don’t fit in the text book. @carolel but take comfort and know addendums are always needed.

Hi

Ive been siffering with chronic paon since may 2014.
Very complicated situation. I had gallstones which went on for months to try and keep the pain i ended up damaging my liver with a paracetamol overdose. I was admitted to hospital for 5 days and had treatment. Dec 2014 i became really unwell with acute pancreatitis secondary to gallstones. I had surgery to remove my gallbladder. Unfortantely the pancreatitis didnt improve. I was rescaned to find i had a pseudocyst on my pancreas. I went home with painkillers. Feb 15 i was readmitted with extreme tummy pain to find the cyst had grown to 31cm in diameter and ruptured my spleen. I had further surgery. Having surgery left me open to infection which was inside the cyst. The cyst became inflammed infected and ruptured. I ended up with a PICC line where i received TPN feed at this point in 6 months i had lost nearly 6 stone. My condition got worse i went into retention had a cathata put in. More fluids pumped thru. I got transfered to a larger hospital that had a pancreatic unit. July 2015 i had a 9 hour operation to drain the cyst and connect it to my small bowel. Finally i started getting better and went home Aug 2015. Sept 2015 admitted again with vomiting. I had a small bowel obstruction caused by adhesions from previous surgeries again more surgery 4th one in 10 months.
I started finally getting better for real. I have to take creon now but i still get upset tummy most days.
Further tests and scans showed i have diverticulitis plus a hiatus hernia and an umbilical hernia. Plus chronic pancreatitis and IBS.

I have no idea what i can cant or should eat but everyday my tummy plays me up. Needing to go go loo 10x a day. Constant sickness feeling. Niggling pain that turns into horrible pain. Its making me stay at home more.

I really need help even if i can control this with diet. Also im type 3c diabetic

Liked by grandmaR

@thulbert0

Hi

Ive been siffering with chronic paon since may 2014.
Very complicated situation. I had gallstones which went on for months to try and keep the pain i ended up damaging my liver with a paracetamol overdose. I was admitted to hospital for 5 days and had treatment. Dec 2014 i became really unwell with acute pancreatitis secondary to gallstones. I had surgery to remove my gallbladder. Unfortantely the pancreatitis didnt improve. I was rescaned to find i had a pseudocyst on my pancreas. I went home with painkillers. Feb 15 i was readmitted with extreme tummy pain to find the cyst had grown to 31cm in diameter and ruptured my spleen. I had further surgery. Having surgery left me open to infection which was inside the cyst. The cyst became inflammed infected and ruptured. I ended up with a PICC line where i received TPN feed at this point in 6 months i had lost nearly 6 stone. My condition got worse i went into retention had a cathata put in. More fluids pumped thru. I got transfered to a larger hospital that had a pancreatic unit. July 2015 i had a 9 hour operation to drain the cyst and connect it to my small bowel. Finally i started getting better and went home Aug 2015. Sept 2015 admitted again with vomiting. I had a small bowel obstruction caused by adhesions from previous surgeries again more surgery 4th one in 10 months.
I started finally getting better for real. I have to take creon now but i still get upset tummy most days.
Further tests and scans showed i have diverticulitis plus a hiatus hernia and an umbilical hernia. Plus chronic pancreatitis and IBS.

I have no idea what i can cant or should eat but everyday my tummy plays me up. Needing to go go loo 10x a day. Constant sickness feeling. Niggling pain that turns into horrible pain. Its making me stay at home more.

I really need help even if i can control this with diet. Also im type 3c diabetic

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@thulbert0
Welcome to our group!
My goodness, you certainly have been through a lot!!!!
I am so sorry for that.
I cannot relate to what you have been through and what you continue to experience.
I know you are not in the United States and I am not familiar with your medical coverage.

As you know, we are NOT medical people, just people who have had varied issues and experiences that we share.
Based on our personal experiences and knowledge, we make SUGGESTIONS only.
That being said, I'd like to make a couple of suggestions to you (since I don't know how medicine works in your country, I don't know how helpful this will be):
1. I do not know if the same surgeon did all your surgeries. It seems almost as if each incident was treated as a separate event rather than a result of previous issues. If possible can you thoroughly research surgeons who have experience with your issues and get another opinion?
2. It sounds like you need nutritional counselling, too. Someone who can tell you what would be helpful to eat with your stomach issues and diabetis. Probably a very low carb, high protein diet. But I am not sure.
3. With all your trips to the bathroom, I worry about you losing too much weight via water weight and loss of muscle. I am also concerned you might dehydrate which can cause all new problems you don't need. All that being said, perhaps you should add protein drinks to your daily diet (until you see a nutritionist). Many have NO SUGAR and can be mixed with a variety of milks. I know that here, in the United States we now have cow milk that is lower in sugar and carbs. We also have all sorts of milk made from different nuts.

I hope this helps a little!
There might be someone in this group or another group that might be more helpful with your specific issues.
Good luck and have a pain free day!!
Ronnie (GRANDMAr)

Hi Kelsey, my name is gaz and I would be very interested in anything that you might be able to help me to cope with my pain,I live in New Zealand and just to put it straight out there I have found that cannibis has been a big help dealing with my pain, I have spoken to my doctors about this and my physio and they would rather me be on their drugs that sometimes leave me dizzy and not feeling well but still in pain, although the pain is not as intense but rather a dull constant throbing pain, the cannibis takes the pain away just not for long, please let me know if you know of anyone that has experienced the same, sometimes I only have to take half of a cannibis joint to have instant results, I look forward to your reply

@karen00

Hi @grandmar! I sure like your attitude- it’s great! I thoroughly enjoy reading your posts! They make me feel better! I have fibro, RA, diabetes, and recently discovered heart failure. Reading about others takes the isolation away. I’m isolated. I live with my brother and he’s not one to talk about feelings or illnesses. So when I feel bad, I keep quiet. I literally have no extended family that cares at all, and I just had to move away from my wonderful friends and church. I can’t drive right now, so I have no way to get to church. I fight hard to not fall down into the abyss. I hope you are ok as well as all my Connect angels. Karen

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@karen00 Perhaps there is a church member who is able to swing by and help you get to church a few times a month? I'll wager that might be possible? We all know how rough isolation can be on us emotionally and mentally. We're here for you!
Ginger

@gaznathan

Hi Kelsey, my name is gaz and I would be very interested in anything that you might be able to help me to cope with my pain,I live in New Zealand and just to put it straight out there I have found that cannibis has been a big help dealing with my pain, I have spoken to my doctors about this and my physio and they would rather me be on their drugs that sometimes leave me dizzy and not feeling well but still in pain, although the pain is not as intense but rather a dull constant throbing pain, the cannibis takes the pain away just not for long, please let me know if you know of anyone that has experienced the same, sometimes I only have to take half of a cannibis joint to have instant results, I look forward to your reply

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Kia ora {means to life} Kelsey, if you like I can send you a copy of all the drugs I have to take everyday to help me with my CRIPS [complex regional intensive pain syndrome] compared to the half a joint I take every now and again

@dawn_giacabazi

Ronnie My life journey in this crazy healthcare system has wrote so many addendums to the text book. Lol
Healthcare professionals commonly to a patients symptoms and try to fit it in the text book but as you and many others here know, some just don’t fit in the text book. @carolel but take comfort and know addendums are always needed.

Jump to this post

@dawn_giacabazi
Hi Dawn
I like your response!
I have also had a wild journey through the healthcare system.
I think what you said is VERY IMPORTANT for all of use to remember….'one size does not fit all.'
As an educator, I said this all the time.
As a patient, I would like to hear the medical staff say the same thing.
In my opinion, a good education (no matter what area of study) teaches the student how to take the information taught, analyze it and use it as a tool, NOT as an answer written in stone.
I have so rarely seen this happen.
As I read the posts, it is evident that many of the doctors we are dealing with are not utilizing their thinking skills along with their book knowledge to solve a problem.
So, we are told nothing can be done or that they don't know what is wrong and their relationship with the patient is done.
I don't know if you have read my posts about my most best (lol) and recent problems with back. If you have, I apologize for the repetition.
I have just started using a new doctor (lol….new compared to my age).
He is a new area of need as well as a new doctor to me.
When I first started with him, I had a classic presentation of a cervical issue.
I had surgery and the problems I was having up above was gone.
Now, we are trying to deal with my lumbar (lower) spine.
Unexpectedly, for no reason, other issues started to appear.
He had me go for a mylogram CT.
Nothing was found to account for the new issues.
Previous tests were not helpful, either.
During out appointment, he checked the CT with a fine tooth comb, himself.
He found a dot.
He didn't know if it was a cyst, tumor or a blip on the film.
He said he wasn't 100%, not even 50% comfortable with the CT report, either.
He sent me for a MRI with contrast.
He was right. It was not a blip on the film. It is a cyst in my spinal canal.
What was bothering him all along was that I was presenting like I had spinal trama, which I jdidn't.
This doctor actually put away the books and used his experience and thinking skills to find an answer.
This has been a very unusual experience for me.

Sorry to be so wordy.
Have a pain free day,
Ronnie (GRANDMAr)

@oldkarl

@oregongirl Believe me, I know about not talking any more with the family about what is happening. I need treatment, but my wife and children are fighting it every step of the way, and my Primary is worse. They all say, Look. You are 80. You are going to die soon anyway, so why treat it. I have about 8 doctors I see more or less regularly, and only one of them makes any effort. I went for 75 years not knowing what the problem is, and I guess they are all tired of hearing about it.

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@oldkarl, EXCUSE ME? Your family and PC said WHAT? What a terrible thing to say. I'm so very sorry. I live alone, but at least my PC has done everything she can to stop the pain. She believes me when i say my pain leads to depression which leads to anxiety which leads to more pain. She has referred me to a Spine & Pain Clinic. Take care of yourself and please continue trying to get relief. Remember, you're worth it. @cognac

@cognac Well, I am old and tired. Very tired. And broke. And I made the mistake, unknowingly, of moving into a town where I would have to make use of a medical system that simply hires the least expensive workers they can find, regardless of quality. Some of them, particularly the nursing staff and the maternity care staff, are superb. And the clerks and cooks in the clinics and hospitals. And by and large the staff who do not speak much English are quite capable and caring. You are fortunate and blessed to found a gem.

@oldkarl

@cognac Well, I am old and tired. Very tired. And broke. And I made the mistake, unknowingly, of moving into a town where I would have to make use of a medical system that simply hires the least expensive workers they can find, regardless of quality. Some of them, particularly the nursing staff and the maternity care staff, are superb. And the clerks and cooks in the clinics and hospitals. And by and large the staff who do not speak much English are quite capable and caring. You are fortunate and blessed to found a gem.

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@oldkarl, yes, I am fortunate. It took going to a lot of doctors, and trying a LOT of different Rx's. But at least I found someone who finally believed me. Take care, and good luck. @cognac

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