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Final day at mayo
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.
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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
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1 Reaction@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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1 Reaction@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
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
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2 Reactions@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
My husband is all for medical marijuana he really believes it’s worth a try to see if it helps my shingles side effects which is severe itch on the right side of my face. Eye forehead to the crown of my head whphich is why the neurosurgeon put me on the Lyrica. I’m not sure yet if it’s legal here in Maryland but I know they have growers and dispensary ready. My internal medicine doctor was going to be licensed to prescribe it but has decided agains it, and the psychiatrist isn’t thrilled about it. I’ve tried cbd oil when I was on the Lyrica and it did nothing. Have not tried it again, at leas5 not yet I want to get off the 50mg Lyrica first. I do take an .05 Ativan in the morning because the anxiety gets over whelming, I wake up with it. There have been days where I have said I don’t want to live like this anymore and now I see why people take their own lives it can be very over whelming. That’s why I choose on my own to go to a psychiatrist I felt my family doctor just feels I should suffer it out. But for how long I asked his reply was maybe a mont; two or maybe years. Well I can’t go years like this, no way in hell,!
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1 Reaction@lynneb2110, @gailb, and others. Thanks for supporting medical marijuana. It has totally given me my life back. I take no opioids at all for my Myofascial and Neuropathic pain. My neurologist and local physician fully support that choice. We all work together. There is no drug testing and no fear of any clash with other medications, only alcohol. And I only have one comment. You moved from 100% CBD to 100% THC. My experience and my dispensary coaches have taught me how to choose the correct potency percentages for the best treatment effect. They have charts with recommendations for neuropathy and other medical issues. Many of the vape cartridges, edibles and even the topicals have several choices (4-6) of different potencies for THC and CBD so that you can start with one of the lower THC/higher CBD potencies and then move with comfort and assurance into another or vice versa. You are right, the medical marijuana industry is very compassionate.
cdcc I hope you find some relief from your anxiety disorders The St John Wort helped me I took it while on Lyrica I think when I started to get it Lyrica this helped ,as I said if you believe in herbs Think of trying it.
The Dr.had me on gabapentin I had dry mouth @throat I thought I was going to choke to death @it didn't help me Look for alternatives there has to be something there that will help Good luck.
Since I've had this probably much longer then anyone 30yrs I tried so many meds hi have ,but there are so many side effects I finally stared to do research on my own .Fibro Malic from Amazon or Vitacost has helped me more then any other meds ,tens treatment for tight muscles,chiropractor ,ice or heat ,Epsom salts ,herbal medicine for anxiety St John Wort or Sam-e. Just my advice as to what works for me.Since the Fibro Malic which has alot of magnesium in it I tend to think we fibro people need more minerals then our body @food give us.