1. < Chronic Pain

Final day at mayo

Posted by ella2000 @ella2000, Jan 5, 2018

Today was my last day at the clinic. It's been a long week for me and actually glad to get back. I am leaving with a small amount of information. I feel as this trip here could have all been done at home with my doctors.
Here is a little break down
Gynocology
I had blood work and and ultrasound
Result
Ovarian cysts-have been aware of this
Polyops-that's new
May have endometriosis-that's new
End of it is a waiting game.....going on with that now for 2 years
Endocrinology
I had a questionare done, ct scan, nutrition class
I had kidney stones- knew that
I don't have one how- i would hope not
Class- told me what to eat and what not to but could not help me with what is ok to eat to prevent kidney stones and anemia.
Neurology
Head ct
I have migraines- knew this
I have tension headaches- I knew this
Did not learn anything here other than what I knew
Chronic pelvic pain CBT group
Best part of mayo trip for me. I loved the lady who taught it. I learned a bunch and will be working on things that I learned there.
They never discussed my anemia nor my thyroid issue. These were within my top three issues. Why do I have anemia? Even the doc here said it was due to heavy flow. Nope....I will not got into detail but I have had several procedures done and know my cycle is not heavy. So What? Why? His response well continue on oral iron with vitamin C. I have for a month already I have really bad symptoms. I had a bleeding ulcer from taking iron pills. He says I should increase the dose. I said I will not. Something else isn't right. Next question. Do you eat meat. I said I make sure of it . Oh...........well we will keep doing infusions. Let your primary deal with that.
I continued to question why I am so tired, nauseated, etc. All the time. He says I need to do more therapy. I am a firm believer in therapy but to get back to somewhat normal I have worked on my own with that and no improvement.
Thyroid. Yes I have a huge problem with that. We need to increase the meds. Let your primary work on that.
Let's so some more blood work. Let's set you up for a three day class. It's for fibromyalgia. Finally something.
Now I got news that my iga is HIGH.
This was all discovered at or after my last appointment.
So.......did I gain anything from mayo? Yes their education classes were amazing! That's why I only said i would come back. Other than that I do believe my mayo days are done. I don't see why I should travel so far just to get the same results as I have over the last year.
I believe mayo is amazing and cab help so many people but in my case I am walking away with
You may have endometriosis, celiac, fibromyalgia, increase synthroid, and great educational information.

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

grandmaR | @grandmar | Feb 7, 2018

Glad you are done at Mayo. I am sure it is frustrating when you travel and get the same info that you get from your home town doc. But, I am guessing you didn't know it would turn out the same.
You are actually lucky to have been able to get an appointment at all. I have tried to get an appointment at the Jacksonville, Fl hospital. I requested an appointment about 5 times and each time I was turned down.
Good luck to you!
ronnie

REPLY
3 replies
lioness | @lioness | Feb 7, 2018
In reply to @grandmar "Glad you are done at Mayo. I am sure it is frustrating when you travel and..." + (show)
@grandmar

Glad you are done at Mayo. I am sure it is frustrating when you travel and get the same info that you get from your home town doc. But, I am guessing you didn't know it would turn out the same.
You are actually lucky to have been able to get an appointment at all. I have tried to get an appointment at the Jacksonville, Fl hospital. I requested an appointment about 5 times and each time I was turned down.
Good luck to you!
ronnie

Jump to this post

Have any of you seen the innovativeconceptcom research done on Fibromyalgia?They said the cause is the herpes virus ?treatment Celebrex@Famvir?I'm going to talk to my rheumatologist about it

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Feb 7, 2018
In reply to @grandmar "Glad you are done at Mayo. I am sure it is frustrating when you travel and..." + (show)
@grandmar

Glad you are done at Mayo. I am sure it is frustrating when you travel and get the same info that you get from your home town doc. But, I am guessing you didn't know it would turn out the same.
You are actually lucky to have been able to get an appointment at all. I have tried to get an appointment at the Jacksonville, Fl hospital. I requested an appointment about 5 times and each time I was turned down.
Good luck to you!
ronnie

Jump to this post

@grandmar

Were you given a reason for turning you down?

Jim

REPLY
lioness | @lioness | Feb 7, 2018
In reply to @grandmar "Glad you are done at Mayo. I am sure it is frustrating when you travel and..." + (show)
@grandmar

Glad you are done at Mayo. I am sure it is frustrating when you travel and get the same info that you get from your home town doc. But, I am guessing you didn't know it would turn out the same.
You are actually lucky to have been able to get an appointment at all. I have tried to get an appointment at the Jacksonville, Fl hospital. I requested an appointment about 5 times and each time I was turned down.
Good luck to you!
ronnie

Jump to this post

Why did they turn you down?didn't think they could

REPLY
grandmaR | @grandmar | Feb 8, 2018

When I was turned down by Mayo in Jacksonville, FL, they told me that they were maxed out with people suffering from the issues I have. I think they take s certain number of people per issue or problem. As I said, I've tried about 5 times with 3 weeks ago being the last time.

REPLY
grandmaR | @grandmar | Feb 8, 2018
In reply to @gailb "@cdcc , I was on Gabapentin, which is the medication from which the maker developed Lyrica..." + (show)
@gailb

@cdcc , I was on Gabapentin, which is the medication from which the maker developed Lyrica when Gabapentin was made generic. I was taking 600mg of Gabapentin 2x a day, and the pain doctor increased my dose to 900 mg 3x a day. The first day on the increased dose, I had a minor car accident as I became distracted. I suddenly couldn't tell where I was and when pulling into a strip mall, I ran headon into another car. Fortunately, I was going only about 10 miles an hour. I was very disoriented and felt like I was high. My husband picked me up and I decided right then that I was not taking Gabapentin anymore.

I talked to my pain doctor about getting off Gabapentin and Baclofen, both of which were prescribed along with Tramadol 50mg for my back pain after surgery. He questioned why I wanted to stop and seemed upset with me about it. He told me to just "stop" taking the Gabapentin, and when I said I had read that I could have withdrawal symptoms from going cold turkey, he laughed and said it wasn't an opiod so I couldn't possibly have "withdrawal" symptoms. I was shocked by his attitude. I then asked my pharmacist how to withdraw from it, and he was very helpful. I took 2 pills every other day, and 1 pill everyday for 4 weeks. Then I dropped down to 1 pill everyday for 2 weeks and 1 pill every other day for another 2 weeks. I think I was ok at that point, although I did have some anxiety for a week. What I discovered after coming off Gabapentin was that I had lost huge amounts of memories, even about a Christmas gift I had been given. I found the card with my registration information for a wonderful art museum membership my friend had bought me. I just had to register for my card. I have absolutely NO memory of receiving the gift, although my husband tells me I was excited at the time. I will NEVER take any medication like this for any reason ever again. Stopping Baclofen was not a problem for me.

I'm also still withdrawing from the Tramadol which has been much more difficult for me as I've been taking it much longer. I have experienced anxiety, panic attacks, and muscle tension that slowed down my withdrawal pace. Ive been working on cutting from 4 pills every 24 hours, down to 3, then 2 a day. It's taken me a couple of months, and I have had depression as well. I was thinking how sad I was that my Citalopram 40 mg/day was no longer working because it has changed my life. So, I slowed down my withdrawal. I'm still taking 1/2 a pill 2 times a day when I start feeling the tension in my muscles happening. I will go to 1/2 pill here in the next week and then nothing after 1 week. It has been incredibly hard. I purchased some CBD Living Water to help during the worst of the withdrawal, and it did help my anxiety. I'm no longer using the CBD. I'm happy to say my depression has gone away and I'm feeling good about that.

It's amazing how profoundly medication can affect us. I found that my pain decreased after stopping the Gabapentin! I am also getting ART treatments from mh chiropractor too. The Active Release Technique has helped me more than anything else I have done. I am about as pain free as I think I can be and still be alive, LOL. I have some pain, but it's tolerable, much more tolerable than the medications. I can't wait to see my pain doctor to tell him I'm drug free.

Jump to this post

Among other issues, I have had Firbo for about 40 years. I've tried everything!
These are the things that worked for me:
1. Lost weight
2. Exercise daily. I started with just walking. My husband would have to pull or push me.
3. Chiropractor
4. Theraputic massage
5. I took 10 mg of Amitriptalin (spelling?). I avoided this for a long time but I was desperate. Within a week of getting into the most needed DEEP SLEEP, I was 90% better.
Although I no longer have symptoms, I am sure it still exists to some degree. How do I know this? If you touch those trigger points, I might punch the person.

REPLY
lioness | @lioness | Feb 8, 2018
In reply to @gailb "@cdcc , I was on Gabapentin, which is the medication from which the maker developed Lyrica..." + (show)
@gailb

@cdcc , I was on Gabapentin, which is the medication from which the maker developed Lyrica when Gabapentin was made generic. I was taking 600mg of Gabapentin 2x a day, and the pain doctor increased my dose to 900 mg 3x a day. The first day on the increased dose, I had a minor car accident as I became distracted. I suddenly couldn't tell where I was and when pulling into a strip mall, I ran headon into another car. Fortunately, I was going only about 10 miles an hour. I was very disoriented and felt like I was high. My husband picked me up and I decided right then that I was not taking Gabapentin anymore.

I talked to my pain doctor about getting off Gabapentin and Baclofen, both of which were prescribed along with Tramadol 50mg for my back pain after surgery. He questioned why I wanted to stop and seemed upset with me about it. He told me to just "stop" taking the Gabapentin, and when I said I had read that I could have withdrawal symptoms from going cold turkey, he laughed and said it wasn't an opiod so I couldn't possibly have "withdrawal" symptoms. I was shocked by his attitude. I then asked my pharmacist how to withdraw from it, and he was very helpful. I took 2 pills every other day, and 1 pill everyday for 4 weeks. Then I dropped down to 1 pill everyday for 2 weeks and 1 pill every other day for another 2 weeks. I think I was ok at that point, although I did have some anxiety for a week. What I discovered after coming off Gabapentin was that I had lost huge amounts of memories, even about a Christmas gift I had been given. I found the card with my registration information for a wonderful art museum membership my friend had bought me. I just had to register for my card. I have absolutely NO memory of receiving the gift, although my husband tells me I was excited at the time. I will NEVER take any medication like this for any reason ever again. Stopping Baclofen was not a problem for me.

I'm also still withdrawing from the Tramadol which has been much more difficult for me as I've been taking it much longer. I have experienced anxiety, panic attacks, and muscle tension that slowed down my withdrawal pace. Ive been working on cutting from 4 pills every 24 hours, down to 3, then 2 a day. It's taken me a couple of months, and I have had depression as well. I was thinking how sad I was that my Citalopram 40 mg/day was no longer working because it has changed my life. So, I slowed down my withdrawal. I'm still taking 1/2 a pill 2 times a day when I start feeling the tension in my muscles happening. I will go to 1/2 pill here in the next week and then nothing after 1 week. It has been incredibly hard. I purchased some CBD Living Water to help during the worst of the withdrawal, and it did help my anxiety. I'm no longer using the CBD. I'm happy to say my depression has gone away and I'm feeling good about that.

It's amazing how profoundly medication can affect us. I found that my pain decreased after stopping the Gabapentin! I am also getting ART treatments from mh chiropractor too. The Active Release Technique has helped me more than anything else I have done. I am about as pain free as I think I can be and still be alive, LOL. I have some pain, but it's tolerable, much more tolerable than the medications. I can't wait to see my pain doctor to tell him I'm drug free.

Jump to this post

Like your post

REPLY
lioness | @lioness | Feb 8, 2018

Poem- If I can endure this.No matter how heavy is my heart ,you are with me ,my God.Secure in the knowledge God loves me,when everyone seems to doubt me. For as long as this knowledge remains,I can suffer whatever is happening for I know God will break the chains that are binding me tight and make it right.

REPLY
View MoreView Less
Please sign in or register to post a reply.