No diagnosis chronic pain

@mrea Welcome to Mayo Connect. We are all patients, family members, caregivers here, and share our journeys with others.

Eleven years is a long time to have to deal with chronic pain! If you haven't already, writing down your pain history and what has been tried, along with success or failure, and when/how the symptoms affect you, will go a long way towards your new team helping you. It also helps you feel part of all the decision-making. It may point out patterns to them.

Which Mayo campus will you be going to? How can we help you today?
Ginger

@mrea What you have to realize is doctors look for pain patterns. Stabbing pain in front of hip = hip arthritis, if this other pain, then sciatica, etc. However, if you have an atypical presentation then you won't get diagnosed properly. Also, Dr. Kuttner mentions this in the "life after pain" book - we all have abnormalities in our spines, other parts as we age. Someone else might have worse spinal discs (or other body parts) but no pain, someone with seemingly good discs has more pain. You might not show anything on images, but something is amiss. Pain can really not generally be diagnosed from imaging - perhaps with the exception of extreme bulging of discs - then it's pretty obvious what the source is. Otherwise, quite honestly, they are guessing. If you've noticed, on letters it often says the word "impressions". They are stating their expert opinion. It should be strongly considered but not necessarily chiseled in stone, either (also things change in our bodies with time).
Most of us with chronic pain do have some degree of pain sensitization, too (hence the "life after pain" programs to minimize pain sensitization).
Ponder the nature of your pain - is it nerves or is it muscle pain. That was not described in detail. Nerve pain: healthy fats + some supplements like turmeric, perhaps other vitamins. There is actually a protocol for neuropathy pain called "the protocol works" and there is a new one called "the protocol 525". There is a facebook group and with some hunting around you can find the protocols. He uses ridiculously high levels of fats (hemp seed oil) amongst other things and tends to say if you don't do this exact thing it won't work. I don't believe that and I came up with my own protocol for supplements based on research I did that uses lower levels of vitamins, minerals, healthy fats and supplements like turmeric and flavinoids and higher vitamin C that seem to help me. Be careful, because some things, like some of the B vitamins, if taken at too high a dose can actually cause neuropathy. If you have the Muscle pain - get the muscles to unlock/relax (i.e. loosen "trigger points"' but often microcirulation issues are present; Perhaps see Dr. Fors' book "why we hurt and how we heal"). Either way you might be able to make a lot of headway with the right stretching/exercise/self-massage for trigger points program as well as diet (and supplements).

Hi Ginger....thank you so very much for your reply! I will be going to the MN location. It’s nice because it’s only a 7 hour drive for us. I will definitely write down a brief history and who I’ve seen and what’s been done. Thanks again 😁🙏

@mrea Forgive me if I missed this but, have you ever been seen by a neurologist or will Mayo MN be your first experience seeing one? I'm real happy for you finally going!

@rwinney I’ve had a neurologist for many years. It’s funny, but even with just a brief conversation with Mayo, they immediately scheduled me for their Department of Neurology....I’m really impressed!

@mrea and @lioness Well said. A short summary is best. Remember, those of us with significant histories often overwhelm our Dr. and the visit may not go as well as expected. A short 1 page summary is better than 3 pages (which might overwhelm). Be sure to mention current chief complaint(s)/major (and minor symptoms), major impressions from past doctors and tests results from others and current and past meds. This might be a case where less is more. If you give him 50 pages of docs he might not really look them over (sad to say).

@richman54660 I had to smile! When I moved up here, my hematologist oncologist sent on her records to my new oncologist, who I had picked out before the move. He is Mayo Clinic trained. They received 99 pages by fax, before I had even made the appt!

@mrea I have a bag that goes along with me. I admit to OCD tendencies, fair warning. In this bag are copies of all lab work for last 5 years, sorted by provider, plus chart notes. A separate folder has all biopsy results, scans, reports, etc. sequenced chronologically and indexed on first page. While it sounds to be overload, because I have a rare mix of issues, things can be and have been pulled from my bag during a dr visit, without having to go request/lookup.

@mrea Wishing you a safe drive to your appointment. I hope you let us know how your experience goes.
Ginger

@richman54660 I had to smile! When I moved up here, my hematologist oncologist sent on her records to my new oncologist, who I had picked out before the move. He is Mayo Clinic trained. They received 99 pages by fax, before I had even made the appt!

@mrea I have a bag that goes along with me. I admit to OCD tendencies, fair warning. In this bag are copies of all lab work for last 5 years, sorted by provider, plus chart notes. A separate folder has all biopsy results, scans, reports, etc. sequenced chronologically and indexed on first page. While it sounds to be overload, because I have a rare mix of issues, things can be and have been pulled from my bag during a dr visit, without having to go request/lookup.

@mrea Wishing you a safe drive to your appointment. I hope you let us know how your experience goes.
Ginger

@gingerw Now, I have to smile! You are my kind of girl. I too have a little OCD and have an accordion storage file system that can travel (if not too heavy for me to carry -haha).

me too back several years worth