Share this:
undiagnosed_pain
@undiagnosed_pain

Posts: 4
Joined: Oct 05, 2016

Any success working with Mayo Clinic without diagnosis?

Posted by @undiagnosed_pain, Oct 5, 2016

Hello,

I spent time working with my insurance and Mayo in AZ yesterday, exploring possibilities for treatment. I have had undiagnosed chronic pain that I have been receiving treatment for 20 years, and there is not a pain center at that location in AZ. I submitted an email inquiry to get in for pain, and described all of the tests and specialists that I have seen. For right now, the recommendation from Mayo is to see the same kind of specialist that I have seen. That may be ok, but with all the Western medical approaches I have tried, none have relieved pain at all, and I do not have a diagnosis. Anyone had experience with Mayo, given that they had numerous treatments and no diagnosis? Also, I have had some relief with acupuncture, but nothing else.

REPLY

In 2008 when My husband and I called Mayo to get help for my husband. Not with chronic pain but other medical issues, they told us if you have your primary doctor send a referral they will probably get you in quicker or nuerologist

Hello undiagnosed_pain and welcome to Connect. Thank you for sharing a bit about your struggles as that must be very frustrating.

I would like you to meet @quazar who has had experience with chronic pain as well as experience with treatments other than western medicine. Quazar, could you share your experiences with acupuncture and other treatments for pains other than western medicine?

I am also inviting @tbeckys, @vickiekay, and @mrsdeecee who have discussed alternative therapies for treatment of pain.

@undiagnosed_pain, other members may be able to offer better insight on how to help if you shared a bit more about what sort of pain you are experiencing. Where do you experience your pain? How often and how severe is it?

@JustinMcClanahan @quazar @tbeckys @vickiekay @mrsdeecee thanks in advance for your advice. The pain area is in the pelvic region. As of recent, I am having lots of flare-ups that are discouraging. It is hard to quantify because as a kid I felt like it was 10+ constantly. Since acupuncture, I have had times where I would quantify as a 2 or 3. However, recently the flare-ups have been more sharp and burning than usual and the acupuncture that was my only outlet is not helping anymore. My doctor has prescribed me Cymbalta for the time being and it helps a bit. I find myself taking Ibuprofen a lot lately, and it helps to an extent. I think I am discouraged because I was managing the pain for a few years with acupuncture.

Any advice would be great. Also, I am big on support groups, but haven’t found anything that meets regularly in Los Angeles. Any ideas?

@sall

In 2008 when My husband and I called Mayo to get help for my husband. Not with chronic pain but other medical issues, they told us if you have your primary doctor send a referral they will probably get you in quicker or nuerologist

Jump to this post

Thank you @sall I should give that a try. Also, I will try to be open to the other Mayo locations. AZ is just the most feasible for distance. I think I have anxiety that if the Mayo Clinic can’t fix it, then no one can. Thanks for the feedback.

@undiagnosed_pain I’m sorry you’re having such a difficult time getting a diagnosis. I know how frustrating that is. I’m not familiar with the L.A. area, so I can’t help you with groups down there. I took a health and wellness class at Kaiser that provided an overview of ways to promote mind-body wellness. There was some Chi-gong and some other movement time methods discussed as well. From that class I was able to decide which avenues I wanted to explore in greater depth. I have no experience with chronic pelvic pain, though Fibromyalgia comes to mind. Apparently it’s difficult to diagnose and not many primary docs think about it.

My experience with HMO doctors is that you have to push hard for results. It took my docs 4 years at least to land on New Daily Persistent Headache as my diagnosis, and so for a long time I was taking a bunch of meds for migraines. I had to specifically ask for a botox treatment, and when they said NO, I fought that decision all the way up to the State level to get my treatment. It was frustrating because the in-house appeals process seemed more like a rubber stamp than an actual re-consideration of the facts. And still after having the NDPH diagnosis, there is still some uncertainty whether my headache is caused in whole or in part by my fibromyalgia (headaches are common for those afflicted with FMS).

Anyway, one of the areas that I think western medicine fails to place enough weight on is physical movement. Yes, Kaiser has a whole Move and Thrive message going on, but so often the docs don’t prescribe it as being as necessary as whatever prescription drugs they’re pushing. They ask the question and give the party line of recommending 30 minutes a day, 3-4 times a week, but there’s no follow up on whether the patient is actually doing it, as they would with the prescription meds. I’m learning that the physical movemet of my body has much more to do with my overall health than i originally thought. My biofeedback therapist has “prescribed” swimming 5 days a week for 15 minutes because of the benefits of the movement. While my head doesn’t respond to my efforts, my body feels better, and I feel better mentally that I’m doing something healthy, even though i don’t feel like 15 minutes is a workout. I’ve known other people to find relief from yoga when they were unable to find relief anywhere else. I don’t know if that may help you, but if you haven’t already considered it, that might be a good thing to look into.

I tried Cymbalta for a few months in connection with Clonazepam. It was awful. Being on the drug combo was terrible and getting off the drugs was even worse. Apparently Clonazepam is a seriously difficult drug to wean off of. I didn’t know that Cymbalta had any pain relieving qualities though – anti-anxiety, yes. Perhaps they are attempting to calm your mind in hopes that will calm your body? Another non-traditional treatment of sorts that i’m working on implementing daily is Meditation. Scientific studies have shown that it a few minutes a day actually does have a profound effect on your body. I just found the mayo clinic link about meditation, and funny enough, it includes yoga and chi gong as well. Though for some reason I can’t actually include the link in my post. The site isn’t allowing it. 🙁

The biggest struggle I think most people have, myself included, is that we are trained from birth to believe that if there is something wrong with us, if we are sick or in pain, that there is a quick fix, that there’s a drug that will take it away. As I’m sure you know, eastern medicine definitely does not operate that way. achieving balance in our bodies is a lengthy process. one of my alt docs asked me if my life was in complete balance when i got sick. the answer is no. i was working TONS of hours, not working out, not eating well, drinking a boatload of diet coke, and not spending quality time with my friends or having any fun. And this imbalance didn’t happen overnight. So my alt doc suggested that the “fix” wouldn’t happen overnight either. I know you’ve been in pain for a LONG time, so you’re probably not liking the whole “not overnight” part of my story here. I don’t either. I still struggle with frustration that this issue hasn’t been worked out yet. I hope you are able to find some relief soon, even if it is in some small way.

@quazar

@undiagnosed_pain I’m sorry you’re having such a difficult time getting a diagnosis. I know how frustrating that is. I’m not familiar with the L.A. area, so I can’t help you with groups down there. I took a health and wellness class at Kaiser that provided an overview of ways to promote mind-body wellness. There was some Chi-gong and some other movement time methods discussed as well. From that class I was able to decide which avenues I wanted to explore in greater depth. I have no experience with chronic pelvic pain, though Fibromyalgia comes to mind. Apparently it’s difficult to diagnose and not many primary docs think about it.

My experience with HMO doctors is that you have to push hard for results. It took my docs 4 years at least to land on New Daily Persistent Headache as my diagnosis, and so for a long time I was taking a bunch of meds for migraines. I had to specifically ask for a botox treatment, and when they said NO, I fought that decision all the way up to the State level to get my treatment. It was frustrating because the in-house appeals process seemed more like a rubber stamp than an actual re-consideration of the facts. And still after having the NDPH diagnosis, there is still some uncertainty whether my headache is caused in whole or in part by my fibromyalgia (headaches are common for those afflicted with FMS).

Anyway, one of the areas that I think western medicine fails to place enough weight on is physical movement. Yes, Kaiser has a whole Move and Thrive message going on, but so often the docs don’t prescribe it as being as necessary as whatever prescription drugs they’re pushing. They ask the question and give the party line of recommending 30 minutes a day, 3-4 times a week, but there’s no follow up on whether the patient is actually doing it, as they would with the prescription meds. I’m learning that the physical movemet of my body has much more to do with my overall health than i originally thought. My biofeedback therapist has “prescribed” swimming 5 days a week for 15 minutes because of the benefits of the movement. While my head doesn’t respond to my efforts, my body feels better, and I feel better mentally that I’m doing something healthy, even though i don’t feel like 15 minutes is a workout. I’ve known other people to find relief from yoga when they were unable to find relief anywhere else. I don’t know if that may help you, but if you haven’t already considered it, that might be a good thing to look into.

I tried Cymbalta for a few months in connection with Clonazepam. It was awful. Being on the drug combo was terrible and getting off the drugs was even worse. Apparently Clonazepam is a seriously difficult drug to wean off of. I didn’t know that Cymbalta had any pain relieving qualities though – anti-anxiety, yes. Perhaps they are attempting to calm your mind in hopes that will calm your body? Another non-traditional treatment of sorts that i’m working on implementing daily is Meditation. Scientific studies have shown that it a few minutes a day actually does have a profound effect on your body. I just found the mayo clinic link about meditation, and funny enough, it includes yoga and chi gong as well. Though for some reason I can’t actually include the link in my post. The site isn’t allowing it. 🙁

The biggest struggle I think most people have, myself included, is that we are trained from birth to believe that if there is something wrong with us, if we are sick or in pain, that there is a quick fix, that there’s a drug that will take it away. As I’m sure you know, eastern medicine definitely does not operate that way. achieving balance in our bodies is a lengthy process. one of my alt docs asked me if my life was in complete balance when i got sick. the answer is no. i was working TONS of hours, not working out, not eating well, drinking a boatload of diet coke, and not spending quality time with my friends or having any fun. And this imbalance didn’t happen overnight. So my alt doc suggested that the “fix” wouldn’t happen overnight either. I know you’ve been in pain for a LONG time, so you’re probably not liking the whole “not overnight” part of my story here. I don’t either. I still struggle with frustration that this issue hasn’t been worked out yet. I hope you are able to find some relief soon, even if it is in some small way.

Jump to this post

@quazar thanks for the feedback. It is helpful to know that fibromyalgia is hard to diagnose. I definitely didn’t know that, and I have seen fibromyalgia support groups in Los Angeles. Perhaps that is something that I can explore. The process you had to do for the botox treatment sounds so frustrating. A type of pain treatment recommended to me was via neurofeedback. I spoke with my insurance on this one, and they mentioned that it is a subset of biofeedback that is currently investigational with not enough data on the therapeutic effects…so it would likely not be covered. I am sorry that the swimming doesn’t really help your headaches. I had another condition many years ago that was very unresponsive too. I like the idea of more meditation, and acupuncture has helped me a bunch. Thanks for the feedback!

I don’t have any bright ideas but I sure know about undiagnosed back pain. I’ve had injections and meds, which haven’t helped even a little bit. Recently, a PY discovered a muscle full of knots in my lower back, to the left of my spine. Manipulating that area has provided relief, but it is not long lasting. But for the short time that it does, what a relief! and there is hope that with enough treatments it might become permanently unknotted. Unfortunately i am at the end of my PT benefits for the year so i am going to suffer until January 1 when they get renewed. I have often wondered why the severity of one’s pain is not taken into account when determining benefits and treatments.

And to whomever it was who asked about what “distracts” you from your pain . . . You are kidding, right? It is the “pain” that distracts ME from what I am doing. I have had to stop playing doubles pickleball and request a substitute in the middle of a game b/c the pain was so bad I could no longer concentrate on playing! I’ve gone out to my yard to garden and had to give it up after 7 minutes b/c I could no longer tolerate the pain of bending over. Ditto for stringing Xmas tree lights.

There is a certain level of pain from which you CANNOT distract yourself. You can be busy doing your thing and the pain will jump out and grab YOU! Pain can ruin your life, or at least make a good stab at it. Other than the seemingly endless search for help (and all I am looking for is something that will kick it down to a tolerable level) there is nothing to do but grit your teeth and bear it. Good luck with that.

@berit I completely understand your pain. I have been and still in physical therapy 3 days a week and it has been for 13 months. My insurance ran out a very long time ago.

Pain can be very debilitating. But it sounds like you may have reached a level that is due for a second opinion to find the root cause. Have the doctors given you a diagnosis?

If you would be interested in a second opinion, here is a link to request an appointment. http://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview

Pain relief soon
Dawn

@dawn_giacabazi

@berit I completely understand your pain. I have been and still in physical therapy 3 days a week and it has been for 13 months. My insurance ran out a very long time ago.

Pain can be very debilitating. But it sounds like you may have reached a level that is due for a second opinion to find the root cause. Have the doctors given you a diagnosis?

If you would be interested in a second opinion, here is a link to request an appointment. http://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview

Pain relief soon
Dawn

Jump to this post

Sorry for the dumb question but is the Pain Rehab Center at Mayo the same as the Pain Clinic at Mayo? I’ve been to Mayo’s Pain Clinic where they basically gave up on me. They recommended PT, which I had locally. It sort of helped, then didn’t. They referred me to Neurology which is like asking NASA for a trip to the moon – impossible to get, no matter who refers you.

i found a neurologist locally, who sent me to another PT, who found the knotted muscle in my back so at least we know now what is generating the pain. But manipulation only works for a day (wonderful while it does, however) and now that my PT benefits have almost run out it’s grit your teeth time.

To be honest, I really don’t understand why this is such a tough problem to diagnosis and treat. We can treat cancer, AIDS, heart disease. Is back pain ignored b/c it isn’t fatal? It won’t kill you but it can sure make you feel like your life is not worth living. I’m not there (yet) but I can easily see how someone could get there. I think the medical community needs to pay more attention to pain and its effects on one’s quality of life.

Liked by AmyEm

@dawn_giacabazi

@berit I completely understand your pain. I have been and still in physical therapy 3 days a week and it has been for 13 months. My insurance ran out a very long time ago.

Pain can be very debilitating. But it sounds like you may have reached a level that is due for a second opinion to find the root cause. Have the doctors given you a diagnosis?

If you would be interested in a second opinion, here is a link to request an appointment. http://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview

Pain relief soon
Dawn

Jump to this post

@berit, like the old saying goes, there are no dumb questions. Mayo Clinic has so many specialities and divisions that it is quite understandable how a person could confuse different areas of Mayo Clinic (I do it all the time).

I believe your question is about the difference between the Pain Rehab Center and the Pain Clinic at Mayo Clinic. Even though they work together, they are indeed two different things. The Pain Rehabilitation Center, found here http://mayocl.in/2dIhiS2, is a three-week (or two-day in Rochester) program intended to help people learn pain management skills and techniques for physical conditioning. The pain rehab center is aimed towards helping an individual reach personal goals regarding self-management of chronic pain.

The Department of Pain Medicine (Minnesota), http://mayocl.in/2dJYsVQ, is a multidisciplinary, team-based approach that deals with the clinical prevention, evaluation, diagnosis, and treatment of chronic pain from varying causes.

Your willingness to keep fighting and seek answers is no doubt inspirational to other members on Connect. I hope that this at the very least helps clear up the confusion regarding departments at Mayo Clinic.

@dawn_giacabazi

@berit I completely understand your pain. I have been and still in physical therapy 3 days a week and it has been for 13 months. My insurance ran out a very long time ago.

Pain can be very debilitating. But it sounds like you may have reached a level that is due for a second opinion to find the root cause. Have the doctors given you a diagnosis?

If you would be interested in a second opinion, here is a link to request an appointment. http://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview

Pain relief soon
Dawn

Jump to this post

Justin,
Thank you for explaining all that. VERY much appreciated.

Please login or register to post a reply.