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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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

oldkarl | @oldkarl | Aug 21, 2018

About Chronic Pain. There is a real disconnect between almost all clinics and what they say about pain and experience of patients. No matter how much information you are prepared to give the doc, they almost never will listen to it or read it. Big clinics like Mayo, BU, City of Hope, Sloan Kettering, etc., have in their protocols that the medics are not to look at this information. This makes their diagnoses very suspect on the face. Additionally, many smaller clinics will produce fake documentation of lab reports, etc. just to justify their own preconceived notions of the patient. That means that the patient must always question what the doc says is truth, as Giuliani says. The best friend a patient has is their own journal of events, reports, discussions, appointments, witnesses. The observations of your spouse and/or best friend will be exceedingly helpful. If everything fits together, and they all agree somehow, you are extraordinarily blessed. If they don't, then you yourself have the task of sorting it out, and your own journaling will be a huge guidebook.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Aug 21, 2018
In reply to @oldkarl "About Chronic Pain. There is a real disconnect between almost all clinics and what they say..." + (show)
@oldkarl

About Chronic Pain. There is a real disconnect between almost all clinics and what they say about pain and experience of patients. No matter how much information you are prepared to give the doc, they almost never will listen to it or read it. Big clinics like Mayo, BU, City of Hope, Sloan Kettering, etc., have in their protocols that the medics are not to look at this information. This makes their diagnoses very suspect on the face. Additionally, many smaller clinics will produce fake documentation of lab reports, etc. just to justify their own preconceived notions of the patient. That means that the patient must always question what the doc says is truth, as Giuliani says. The best friend a patient has is their own journal of events, reports, discussions, appointments, witnesses. The observations of your spouse and/or best friend will be exceedingly helpful. If everything fits together, and they all agree somehow, you are extraordinarily blessed. If they don't, then you yourself have the task of sorting it out, and your own journaling will be a huge guidebook.

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@oldkarl - I take a notebook to all appts, have a list of questions, get a copy of all test results directly from the testing facility, etc. Years ago, when moving to a new dermatologist, I was pretty angry to read false records in the copy I received. Each patient has to be their own advocate, and sometimes that includes having a family member or trusted friend along.

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lioness | @lioness | Aug 21, 2018
In reply to @grandmar "@mamacita Thank you for the very kind words. I will certainly keep you informed on what..." + (show)
@grandmar

@mamacita
Thank you for the very kind words.
I will certainly keep you informed on what is happening with me.

I am so sorry you are having such a difficult time from the Fibro.
I have it too.
Although I am not 100% symptomatic, I experience very little pain from it.
With all the pain I DO have, how do I know?
The other pain I am currently experiencing feels very different than the one I have with the Fibro.
I still do have all the tender points and so long as no one tries to get in to deep, I leave it alone and it leaves me alone.
See, I get massages so they need to be very careful.
I don't get deep tissue massage in order to keep inflammation away.

How did I manage to almost negate the Fibro?
1. I took amitriptalyn (sp.?) at a VERY low dose (10mg....I 5ft. 6.5 inches and have weighed up to 210 lbs. while on the meds).
It helped to get me into a deep restorative sleep.
2. I went for therapeutic massage every other week. (expensive, but very worth it).
3. I went to a chiropractor every other week. (on the off week from my massage).Luckily it was covered by my insurance.
4. I went for aquatic physical therapy. The soaking in the warm water alone felt great!
5. I started to lose weight. I went on Weight Watchers.
6. I started to walk (as a form of exercise). I started off VERY slowly because of the pain. My hubby would literally have to drag me around at the beginning. After a while, I was able to walk all I wanted without a 'push'.
7. I started to go into the workout room where I lived. I did the tread mill and weights.

All this took several months, but it did work!

I pray you feel better today and each day!
Ronnie (GRANDMAr)

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@mamacita I hope your pain lets up for you and today you will get some answers guess we will both find out I go to Dr today also I know what you mean about being a sick grandma Ive had at least 10 yrs with my grandson before I became same way my D.I.L.understands and told me when I have good days to let her know and I can see them so not on a schedule as I was before ,they both work and us grandparents took care of him Fortunately she can work from home now. Praying for us both today to get good news and @oregongirl.

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Gail Benson Ledesma , Alumni Mentor | @gailb | Aug 21, 2018
In reply to @parus "@gailb I have been reading about genetic testing for different things. Does insurance pay for this..." + (show)
@parus

@gailb I have been reading about genetic testing for different things. Does insurance pay for this type of testing? Probably varies.
A smiling flower face helps me. Hope it helps you and maybe someone else. I do enjoy my small secret garden with BIG color.

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@lioness

Please let me know how it goes with your doctor today. I hope you find something that will help relieve your pain. Thanks for being so active on the Connect sites. You offer empathy, hope and lots of practical information to members. I appreciate your help.

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lioness | @lioness | Aug 21, 2018
In reply to @grandmar "Hi All! Sitting in the exam room of my neurosurgeon waiting for him to come in...." + (show)
@grandmar

Hi All!
Sitting in the exam room of my neurosurgeon waiting for him to come in.
Not sure he is even here.
I am excited and nervous at the same time.
I am hoping the Mylogram CT shows something but afraid of what it might be.

More later.........
Ronnie (GRANDMA r)

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@grandmar thinking of you it,ll be fine

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 21, 2018
In reply to @parus "@gailb I have been reading about genetic testing for different things. Does insurance pay for this..." + (show)
@parus

@gailb I have been reading about genetic testing for different things. Does insurance pay for this type of testing? Probably varies.
A smiling flower face helps me. Hope it helps you and maybe someone else. I do enjoy my small secret garden with BIG color.

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I completely agree, @gingerw. That is exactly the point of the information I posted. Evidence is in its infancy. Use is outpacing the scientific evidence. As people make choices, it is good to be aware of this. The legality of medical marijuana and its derivatives is complicated and varies from state to state. I hope the resources I posted help detangle some of the complexities there, and offer a place where people can check the rules of their region and make informed choices.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Aug 21, 2018
In reply to @parus "@gailb I have been reading about genetic testing for different things. Does insurance pay for this..." + (show)
@parus

@gailb I have been reading about genetic testing for different things. Does insurance pay for this type of testing? Probably varies.
A smiling flower face helps me. Hope it helps you and maybe someone else. I do enjoy my small secret garden with BIG color.

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@colleenyoung , I make informed choices in my healthcare based on me, as an individual. And am always surprised when getting pushback from family because I don't always follow accepted practices. I have had to be my own advocate since before the diagnosis of Systemic Lupus in 1988.
Ginger

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 21, 2018
In reply to @parus "@gailb I have been reading about genetic testing for different things. Does insurance pay for this..." + (show)
@parus

@gailb I have been reading about genetic testing for different things. Does insurance pay for this type of testing? Probably varies.
A smiling flower face helps me. Hope it helps you and maybe someone else. I do enjoy my small secret garden with BIG color.

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Such a critical point, @gingerw. That is precisely why the patient is a critical member of the care team. Only you are in the expert in you. Sometimes if can be challenging for family members to accept that.

Did you know that Mayo Clinic hosts a blog series called "Experts by Experience"? You can read more about the series here: https://connect.mayoclinic.org/discussion/patients-and-caregivers-are-experts-by-experience/

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cgmc | @cgmc | Aug 21, 2018

Hello. I am new to this site and always looking for ways to handle chronic pain issues stemming from scoliosis fusion, additional surgery for removal of all hardware, fibromyalgia, nerve pain, migraine and TMJ. There are so many things out there that work for pain management, but we’re all different, and there are various levels of experienced practitioners, so it took time and financial investment to find the things that work specifically for me. Acupuncture....no. Standard physical therapy....no. Chiropractors......no. Walking, very simple stretching.....yes. Myofascial work....yes, but have only experienced relief with a specific method done on a regular basis (Kinetic Chain Release, or KCR). Cranial sacral work....yes, after finding a good practitioner. Medication.....Cymbalta, Lyrica....no. Effexor, trazadone, gabapentin, hydrocodone, muscle relaxers, migraine meds.....yes. Medical marijuana is legal in my state. Does it work? Yes, but it is not standardized well enough to get the same dosage each time, so I am passing on this for now. I look forward to hearing solutions that others have found helpful.

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lioness | @lioness | Aug 21, 2018
In reply to @gailb "@grandmar I'm so sorry to read that your pain is still acute. Having been there off..." + (show)
@gailb

@grandmar

I'm so sorry to read that your pain is still acute. Having been there off and on for 12 years, with the final acute attack resulting in a wheelchair and laminectomy 2 months later. Pain medications didn't really work for me either. Acute pain is caused by spinal cord impingement I think, so you can't medicate that away. I can relate to what you're going through. I hope your test reveals the problem and that you find relief and comfort from a resolution of your pain. I will be waiting to read about your results. You remain positive even in pain which is amazing.

Gail
Volunteer Mentor

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@hopeful33250 @oregongirl @gailb@mamacita The Dr put me on Gabapentin starting with 300 mg at night gradually increase to 3a day hope it helps Gail what was your experience with it

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