Chronic Pain members - Welcome, please introduce yourself

Hi treglaser!
Welcome to the group. Your frustration rings loud and clear. I have been working in the healthcare industry for 28 years. It can definitely be complex and a person can find themselves in a tangled web without realizing it. Even with my back ground in the industry I found myself caught in the web of doctors and it became quickly confusing. But I was able to get myself freed. For me it was about trust. At some point I had to stop looking for the answers and trust one doctor. But that’s hard when all you want is to get better, feel pain free once again. But when I spend all my energy running around at appointments it was more exhausting and made the pain worse. Once I decide NO MORE. I now only see my family doctor, neurologist, nephrologist (Mayo Clinic) and each specialist only handles their specialty and my family doctor handles the big picture. I spend a lot more time doing things that I can do and less time focused on what I can’t do.

Do you have one doctor that tends to take the lead?If all your doctors were taken away their is just one you just can’t imagine not seeing any longer? My Mayo Clinic Doctor is that Doctor for me. He took charge he is amazing but trust me I had seen 17 doctors before him.

Lots of prayers!!
Dawn

@dawn_giacabazi
Hi Dawn!
You have a wonderful attitude! I am sure you will be an inspiration for many.
I also did the change of docs. I was lucky, however, that I finally found a pain doc who was able to help me for 4 years.
For me, I needed to find someone to help me when I knew that surgery (although I wasn't ready at the time) was not an option.
I could not imagine living my life in the pain I suffered and how my family suffered as well.
I think we all have to find our own way and determine just how much time and effort we want to take in this journey.

Hoping for a pain free day for us all!!
Ronnie (GRANDMAr)

@lioness
People don't realize that even with aquatic therapy, you still have to be careful because you CAN hurt yourself.
I went for aquatic PT before my surgery. After one session, the pain was unbearable. I had to take a couple of sessions off because I could not walk because of the pain.
When I returned to PT, the therapist was very surprised that I had such an affect. So was I! He tried to modify the exercises, but he didn't do a good job. I've had aquatic PT before so I know how good it can be. My goodness, the warm water alone is therapeutic.
Now I am doing land therapy as a post-op patient. My therapist listens to me as I listen to my body.
What you are doing with aquatic aerobics is good for building your core.

Have a pain free day!
Ronnie (GRANDMAr)

@treglaser
First, let me assure you that you are NOT whining. You are frustrated as many of us are or have been!! I have had Fibromyalgia for many, many years. I cannot tell you how many docs did NOT believe it even existed! It was my doctor's wife (who was a dentist) who had an article in her dental journal.

HERE IS MY PERSONAL OPINION
I believe to start with your PCP and to keep your PCP fully up to date with all you are going through. Today, many doctors have some sort of a portal where you can email. This is a good way to keep him/her up to date without having to pay for another visit.
As far as seeing specialists, I SUGGEST a couple of things.....
1. Do your OWN research. There are at least 4 sites that rate doctors based on patient opinions. For me, that is more important since the treatment patients receive would be more like what I would receive. It appears to me that docs treat docs better. Anyway, I only deal with docs that have the highest possible ratings. Sometimes, lower ratings are due to the office staff. Although they do not take physical care of you, they do care for lots of things you would need them for. Therefore, if the staff gets a poor review, I also stay away from the doc.
I am willing to travel (by car) 1 - 2 hours to get the BEST medical care.
2. If possible, try to get into a 'medical group' that has multi specialities. This was, you might be able to see partners who can access your records easily. This is also true for doctors who are a part of a hospital or medical group like Kaiser Permanente.

Finally, there is no need to feel embarrassment. More people are experiencing doc visits as you are. As far as emotional hurt and disappointment, move ahead and find someone else who might be able to help you. Dealing with health issues is a journey, not a sprint. It takes time to find the right people who can help you. They are out there! Sadly, it takes time and good insurance. We are here to support you so when you are having a bad day, just jump on line and vent.

In the meantime, perhaps there is someone in this group who lives near you who might have some recommendations.

PS...Just remember that this is NOT your fault. It is NOT the fault of anyone.

Good luck and I pray you have a pain free day,
Ronnie (GRANDMAr)

@grandmar. Hi Ronnie! I need to talk! I am going through some awful pain and feel like I can’t take much more of this. I am tired of crying and moaning. I have pain meds, but they are too little to help. I purchased some CBD oil, but then was diagnosed with a clot in my lung and was told not to take anti inflammatories. I know CBD oil works on an anti inflammatory level so I desperately want to try it but am afraid. So I cry instead. I just can’t be positive when I’m feeling so down!

Good morning, sir! So very happy to have you here at Mayo Clinic Connect. @treglaser, my name on here is Mamacita, and I am a Volunteer Mentor here on Mayo Clinic Connect. I was a patient just looking for confirmation, assistance, and support, just a few years ago. I also have Fibromyalgia, Degenerative DIsc Disease, Spinal Stenosis, Arthritis in all of my joints. I see my wonderful Primary Care Physician for almost everything. He listens to me, is very intelligent, and tries to make time for me. I also have a Rheumatologist. He handles everything about my Arthritis and all. I also use supplements occassionally that have been well researched and known to not be contraindicated with all the medicine I take. I work carefully and mindfully with all my doctors. I look into research and treatment plans that might work for me as well as for others.

Before I retired, which was three years ago, I could barely walk. I hated to use a cane or a walker, but I really needed to do so. Constant, unrelenting pain will change a person. Some of my co-workers mocked me. They thought I was exaggerating the pain I was experiencing, to get sympathy, I suppose. I was always a hard worker and put my heart and soul into everything that I did. The lack of support in my workplace hurt me as much as my failing body did., I know exactly what it feels like to just want to end the suffering.

May I share with you just a few words that might help in your situation? I don't know where you live, but it is my experience that most small town doctors have the best of intentions, have sterling credentials, want the best possible care for their patients....but they are not equipped to handle such cases as ours. Those of us with multiple conditions, especially neurological ones get the most benefit from going to a University Medical Center. In my area, most folks put their trust in the University of Alabama Health Care System. A teaching hospital keeps up with the latest in medical advancement. They are also more likely to be aware of possible contraindications of certain prescriptions. Vanderbilt Hospital in Nashville TN is also an excellent resource. Mayo Clinic has resources throughout the country. Jacksonville, Florida has a Mayo Clinic Center as well. Many people from my area go there.

I hope that you will carefully consider looking up some doctors who have a large practice in your field. A University System, where you can look up on the computer and see actual reviews before you make an appointment. Also, I would like to invite you to check out the rest of the groups here on Mayo Clinic Connect. Arthritis support, chronic pain, fibromyalgia. Just about anything and everything a person could need. We are here to help, because we have been where you are. We work together as a team. We are better together. My prayers and good thoughts and hopes are with you as you walk this path. I truly believe there is much hope for you and that you will find some answers sooner than expected. If it can happen for me, it can happen for anyone.

Mamacita

Hi @karen00, we're here. We're listening.
Can you think of soothing things that have worked for you in the past to help reduce the pain or distract you from it? I'm not dismissing your anguish and pain, but acknowledging it. With the limitation on medication for you right now, can you focus on alternatives: deep breathing, a walk in nature, talk with a friend?

@karen00, I am crying with you. I am so sorry you are in so much pain. My level of pain is obviously not the same as everyone else on here. You know there are actually times when I have no pain? But much of the time I am doing the medicinal do-si-do, in just an attempt to make it through the day. Some of my meds were recalled for causing Cancer. Some of my medicine was making me terribly ill, just as ill as not taking any medicine at all. I have finally got it all worked out to where I use a combination of things that work. All medicines have side effects, and I was a bit foolish, I must admit, to not research the meds more carefully. I have not used CBD oil but there are indeed individuals on here who have. Many have good results. Browse through some of our support groups on here, and see if anything strikes a chord with you. Situations such as ours require a multifaceted approach, indeed, a mixed bag of tricks that we pull out when something stops working. We must never give up! Carefully work with your good doctors, research all you can, and stick with us. We are here for you and want to help you all we can. I want to hear from you as soon as you have a spare moment. By the way, I was diagnosed with Fibro in 1990. So, we have a lot of "war stories" to share. God bless you and keep you. All good thoughts and prayers going out to you.

Love and light,

Mamacita

@grandmar Thank you yes between exercise class people tell me how its helped them and couldn't wait to get back.One lady who has neuropathy said how this has helped her feet yea glad for her.

Hi @ kelseydm! I am so happy to meet you! I am Mamacita (aka Jane) from the Adults On the Autism Spectrum group. I joined Mayo Clinic Connect as a member and patient looking for answers several years ago. I retired from the school system three years ago, because of unrelenting pain. I was diagnosed with Fibromyalgia in 1990 at the Kirklin Clinic, in Birmingham, AL. Back then there wasn't much they could do. At least not in my area of the country. They didn't give me any information at all, at least none that I could remember. Heating pads and ice packs can only do so much. It has been a long road, with many mistakes on my part as well as my doctors. But I would not change a thing, because it has brought me to where I am now. I am eternally grateful for Mayo Clinic Connect and so thrilled to be a very small part in helping others. I was given hope, strength, and encouragement, so that I could turn around and do the same for others. No matter how painful it becomes, there is hope. I know, because I have been there. Thank you so much for all you do!

Mamacita (Jane)