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ella2000
@ella2000

Posts: 11
Joined: Dec 30, 2017

Final day at mayo

Posted by @ella2000, Fri, Jan 5 6:53pm

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.

REPLY

@ella2000

Which Mayo clinic did you go to? I’m sorry you didn’t get more answers, and didn’t learn anything new about your diagnoses. You apparently have some good doctors at home. I think I’d have more confidence in my local doctors if Mayo didn’t come up with anything I didn’t already know. I understand that we would go to Mayo in hopes that they would have more specific information or explanation to offer, though.

Were you hoping to learn the cause of symptoms? I’ve been there. Sometimes it’s like pulling teeth to get some doctors to take enough interest in your case to expend any extra time or research to find the answers you are looking for. Many of us don’t fit the usual simple categories of illnesses. I’ve said it before, we have to be our own advocate. Don’t give up in your search.

Jim

@jimhd

@ella2000

Which Mayo clinic did you go to? I’m sorry you didn’t get more answers, and didn’t learn anything new about your diagnoses. You apparently have some good doctors at home. I think I’d have more confidence in my local doctors if Mayo didn’t come up with anything I didn’t already know. I understand that we would go to Mayo in hopes that they would have more specific information or explanation to offer, though.

Were you hoping to learn the cause of symptoms? I’ve been there. Sometimes it’s like pulling teeth to get some doctors to take enough interest in your case to expend any extra time or research to find the answers you are looking for. Many of us don’t fit the usual simple categories of illnesses. I’ve said it before, we have to be our own advocate. Don’t give up in your search.

Jim

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Ain’t it the truth!! There are many of us still searching-I even looked under my bed. ZILCH.

Liked by Jamie Olson, LynneB

@ella2000 I do not feel qualfied to comment on your pain experience except I have been suffering for 15 years with a burning in mouth- tongue- lips and more in that area. Medical profession admit it is real but they do not know how to treat it, i am at the stage of not remembering what I have tried as I go from one Dr to the next. I have been going to a big hospital pain clinic for years– went 2 days ago and am trying another drug Lyrica– I can’t remember if I have had it before but– like you it is walk away time.
I am leaving my body to science– having had 2 rounds of surgery and chemo (not connected) and am in remission. there was a post on the wall , it read don’t listen in to your pain listen out— can you do that? I am going to try. I am 77 year old female wish you well and talk to me if you want. Noeline

Don’t take the Kyrica please don’t! I am still in withdrawal symptoms of coming off of it since Oct 2017; severe depression, panic attacks, anxiety. List 25 lbs so far nausea, can’t eat dry heaves. I am suffering with crying all the time and the family doctor says he has no idea how long I will be like this. Well let me tell you, I can’t live like this

@clissold

@ella2000 I do not feel qualfied to comment on your pain experience except I have been suffering for 15 years with a burning in mouth- tongue- lips and more in that area. Medical profession admit it is real but they do not know how to treat it, i am at the stage of not remembering what I have tried as I go from one Dr to the next. I have been going to a big hospital pain clinic for years– went 2 days ago and am trying another drug Lyrica– I can’t remember if I have had it before but– like you it is walk away time.
I am leaving my body to science– having had 2 rounds of surgery and chemo (not connected) and am in remission. there was a post on the wall , it read don’t listen in to your pain listen out— can you do that? I am going to try. I am 77 year old female wish you well and talk to me if you want. Noeline

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@clissold

I took Lyrica, which helps many people, but after a few weeks I had reactions that put me in the hospital. Bummer because it was the only neuropathy medication that actually helped my neuropathy pain. But every medication has side effects, which can vary widely from one person to another.

Jim

@cdcc

Don’t take the Kyrica please don’t! I am still in withdrawal symptoms of coming off of it since Oct 2017; severe depression, panic attacks, anxiety. List 25 lbs so far nausea, can’t eat dry heaves. I am suffering with crying all the time and the family doctor says he has no idea how long I will be like this. Well let me tell you, I can’t live like this

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I’m so sorry your going through this I was on Lyrica for along time I didn’t get those side effects but it didn’t help all that much that’s why I did my own research in the fibromyalgia group online.If I hear of anything that might help I,’ll let you know.Drink lots,lots of water .

Liked by LynneB

@cdcc

Don’t take the Kyrica please don’t! I am still in withdrawal symptoms of coming off of it since Oct 2017; severe depression, panic attacks, anxiety. List 25 lbs so far nausea, can’t eat dry heaves. I am suffering with crying all the time and the family doctor says he has no idea how long I will be like this. Well let me tell you, I can’t live like this

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@cdcc — Did you taper off the lyrica? Or go cold turkey? I know that these types of meds can cause withdrawal, and need to be actively managed while you come off them. While Lyrica does help some, it doesn’t help all.

My thought is that you need a specialist, possibly not a family doctor. I’d hope you could get better management of your pain and your withdrawal symptoms. Blessings on you, my dear.

@cdcc

Don’t take the Kyrica please don’t! I am still in withdrawal symptoms of coming off of it since Oct 2017; severe depression, panic attacks, anxiety. List 25 lbs so far nausea, can’t eat dry heaves. I am suffering with crying all the time and the family doctor says he has no idea how long I will be like this. Well let me tell you, I can’t live like this

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Living to tell about going cold turkey

@cdcc

Don’t take the Kyrica please don’t! I am still in withdrawal symptoms of coming off of it since Oct 2017; severe depression, panic attacks, anxiety. List 25 lbs so far nausea, can’t eat dry heaves. I am suffering with crying all the time and the family doctor says he has no idea how long I will be like this. Well let me tell you, I can’t live like this

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Hi Lynn
I did do the tapering schedule per the doctor. As the tapering went down I became very sick with depression anxiety panic attacks as well as severe nausea. I couldn’t look st food, be around it etc..I ended up in the ER with severe depression and nausea. The ER doctor called poison control to see if the tapering was adequate which it was but they said since I’d been on it for so long the tapering was not long enough. I still am taking 50mg a day of the Lyrica. This needs to be halved for a week. The psychiatrist has told me not to start this until my celexa is increased to 30mg instead of the 20 that I have been on for years for depression. They fell when finally starting the last of this horrendous drug my depression won’t sky rocket. Hopefully this helped answer some of your questions. I’m open for discussion on everything. Thank you for your blessing Lord knows I need that

@cdcc

Don’t take the Kyrica please don’t! I am still in withdrawal symptoms of coming off of it since Oct 2017; severe depression, panic attacks, anxiety. List 25 lbs so far nausea, can’t eat dry heaves. I am suffering with crying all the time and the family doctor says he has no idea how long I will be like this. Well let me tell you, I can’t live like this

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I,m sorry to hear about your side effects ,I was never on a higher dose of Lyrica just 50 mg so when I weened myself of it was every other day till I stopped .If you will take any herbs one for depression and just the feel good is Sam-e or St John,s Wort hope you find some relief Lioness

Liked by LynneB, lioness

@cdcc

Don’t take the Kyrica please don’t! I am still in withdrawal symptoms of coming off of it since Oct 2017; severe depression, panic attacks, anxiety. List 25 lbs so far nausea, can’t eat dry heaves. I am suffering with crying all the time and the family doctor says he has no idea how long I will be like this. Well let me tell you, I can’t live like this

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Oh dear, @cdcc. I do know what it feels like, from coming down too fast from another drug, an antidepressant that wasn’t working. It was purely hell. It hurt to be alive, even. I had told another doctor after moving to my present state that I’d never been so sick in my life, and the only thing I could imagine to compare it to was hard drug withdrawal (emphasis on “imagine.”) She knew what it was right away.

I’m going to mention an option that may be controversial to some, but is a very effective option, and legal many places: medical marijuana. I am not a recreational drug user. It is a godsend to me for pain and anxiety (fibromyalgia, ugh) and sleep problems. I have recently read a couple of articles in which they spoke of its effectiveness for treatment of opiate withdrawal. Even if I hadn’t read those, I would now try it for withdrawal.

First, I could hope it is legal where you live. It is in 29 states plus DC, with the matter pending in 2 more under something called “Put Patients First Act” in one of them. I have found any doctors I’ve seen for certification to be so compassionate and knowledgeable. The same with the personnel in the dispensaries. One can ask as many questions as necessary. They help patients to understand how to dose, how to ease into it at first. I became assured that it wasn’t some sketchy thing I was about to do. I always tell my docs what I’m taking, and haven’t received any pushback from any of them.

I know some are worried it’s going to be some kind of wild ride, but it isn’t at all. Although I don’t drink alcohol anymore, I might find a moderate med. marijuana dose to be similar to a couple of glasses of wine. I can watch tv or read a bit, and perhaps sleep peacefully. It alleviates my significant shoulder pain from rather involved rotator cuff surgery that remains over and above the Tylenol and tramadol.

And, one can always have more if the withdrawal symptoms haven’t entirely abated. My own recommendation might be to vaporize it initially, because you aren’t inhaling smoke, AND you can tell more immediately how it’s affecting you.

Hope I haven’t gone on too much. But I feel your pain and desperation for help with your misery. I myself am well past caring if the uninitiated judge me, but it is legal in so many places, and there are so many that it has helped. I try to remain appropriate within the forum, but I’d be wrong not to mention this option which could provide you and others with significant relief.

My very best wishes for your comfort,
Lynne

@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.

Liked by LynneB

@cdcc

Don’t take the Kyrica please don’t! I am still in withdrawal symptoms of coming off of it since Oct 2017; severe depression, panic attacks, anxiety. List 25 lbs so far nausea, can’t eat dry heaves. I am suffering with crying all the time and the family doctor says he has no idea how long I will be like this. Well let me tell you, I can’t live like this

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@lynneb2110 I mentioned in my post to @cdcc that I used CBD to help with my withdrawal, and it was very helpful. I tried the marijuana with full thc, and didn’t like how I felt high on it. CBD doesn’t have the “high” part in it. I highly recommend trying both to see which works best for you if you are in a state where you can get it. My pain doctor said he can’t prescribe to me if I use marijuana, even CBD. That’s OK with me now that I have gotten off the Tramadol. So, be aware that if your doctor drug tests you, they can’t prescribe pain medications if you use marijuana because it’s not legal at the Federal level. Hopefully one of these years it will be legal at the Federal level too. I wish you the best in your work to get off Lyrica and find peace. Gail B, Volunteer Mentor

@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.

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Oh my goodness, @gailb. I’m on gabapentin since October, prescribed at only 300mg 3x a day. It does make me feel kind of horrible at times, and I can barely make it up to that 3rd dose mid-day. I don’t think it’s helping my fibromyalgia pain or any other, tbh.

I can’t believe your doctor saying that!! It’s well-known that Gabapentin and others like it cause that, as well as many antidepressants (like when I ran out of Effexor on a trip, horrors). I can completely imagine memory issues or an accident. So glad you’re feeling better.

~Lynne

@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.

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@lynneb2110

Just my opinion, but I would inquire about alternative medicine for your fibromialga. I don’t think Gabapentin or Lyrica are good medications. Please keep in mind that I’m not a medical professional, and my opinion is based on my experiences with Gabapentin. Follow your doctor’s recommendations, but if you are struggling with it, ask for an alternative to neurontin type meds. Gail B

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