Fibromyalgia Medication and treatment

Posted by Sundance(RB) @sundance6, Jun 1, 2019

I have been on the Mayo Connect for over six months. My symptoms point to the umbrella of things, Lyme disease, West Nile, Fibromyalgia, Lupus, and Chronice Fatigue. I have seen every doctor in my hospital system. Had every test and scans done. JUST MADE MORE $$ FOR THE HOSPITAL SYSTEM!
Yesterday I finally went to a Rheumatologist for a consultation on a blood test. When I expalined what I had been going through the last ten months he finally gave me a diagnoses. (First one after 10 months and 10 doctors.)There is a small chance I may have Lyme Disease, but to late to tell. He said he was sure it is Fibromyalgia. He said I should have been directed to him when it first started. (Again as many of you agree they put you through unecessay test and perscribe pills to make $$ for the industry.
So now that I fianally have some direction to move, I need some advice, information, what helps, what causes it and such. He said he feels mine is in the area of sleep. Does this make sense to anyone? He is sending me to a sleep clinic for evaluation.
I know I have seen many postings about Fibromyalgia, but I guess it is the “Fibro Fog” that dosen’t remember all.
Can someone lend me some advice.
I had been on Gabretentian but the side effects were worse than my pain! We are tryng Cymbalta. Can anyone let me know how it has worked for them. Anything to watch for?
As always this site is the Best! People are so honest and open about helping.
Thanks,
Sundance
🙂

@jimma

Google LDN with fibromyalgia and Lyme disease

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I do want to take LDN, but I have been on opioids since 2002ish – a very long time. I have been cutting back as I was up to wearing a 100mg (mcg?) Fentanyl patch, with 8 10/325 Norco a day. Now I have a Butrans (bupropion) patch and 4 Norco a day. Getting ready to change over to oral Butrans in place of the Norco and cut back even more, if I can tolerate it given I’m doing so much at once.

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@sundance6

Idramjet, How true you words on the drugs. Although my experience has only been a year, I have been treated with most of those drugs. As you also say Opiods have been criminalized. They over many a life without constant pain. I probably not be alive had it not been for them. Not because of the pain per say, but I didn't want to live like that anymore!
When I finally shook off what the dr. were saying about them, and then had a heart to heart with my Primary Care I came out of it! I am so Lucky to have someone like him. Although he would never diagnose me with Lyme, even when I came in with several papers showing all the symptoms I had were right there.
Probably if the truth be known the hospital organization he works for won't let them confirm various diseases. Same thing happened 6 years ago and had Adult Whooping Cough that took then three months to confirm. Then the NP did diagnose it she was run out of the organiztion for unknown reasons.
I will try and find some time first thing in the AM, Friday, and do some research on the test and the other suggestions everyon has had.
Thank You All for the Feedback!
Sundance (RB)

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Sundance, I do hope you find your path for health. Good luck to you and please do post updates!

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Idramjet, I will. Seems so strange to have felt good for an entire week!!!
Because thing we all know about it just because you feel "Normal" for a week, don't strech yourself or did another hole to fall in! I do have a plan I'm working on for this week. If I still fell good on Wednesday I'm going to pack a lunch, pack my fly Rod and go up in the mtns. for the day!
We'll see how it goes.
Stay Well this week. Keep Fighting.
Sundance (RB)

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@sundance6 Sounds like a good plan . Use to love to fish my husband used a fly rod I used the other kind . Let me know what you catch. Hope you stay well.

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Lioness, It's so sad that illness or lack of a fishing buddy we have to give up things we have enjoyed throughout our lives. My daughter says that " Fly fishing on a river is the closest her father gets to a religious experience." Partly true! This past year has been very hard not being out on a river. On a river is a time when I can get away from all the issues I think are Major and Overwhelming. Somehow when you come back to them they have either solved themselves or you find the answer to them right in front of you.
We all need to do that once in while! Go outside the box! That maybe part of my feeling better for the first time in a year! Week before this my daughter called and said that there were some car races in the little town in Northern New Mexico where she lives. My grandson said he wanted to go. (He and I went once last year.) She asked if I would come up and take him. Even though I was not feeling really well I said yes and made the three hour trip. (My grandsons father has very little to do with him.)
He and I ate diner and headed for the track, a mile away. He is 8 and it reminded me of the first time my dad took me to the races, I was also 8.
Anyway we laughed, joked, watched people and had a "BOYS NIGHT OUT" that he could not have had with my daughter. It was a two race weekend and I thought he woouldn't want to go the second night. I was wrong! He talked about the night before all day! So we went back and had more fun than the night before!
When I came back home I woke up Monday AM feeling like I hadn't felt in over a year!
Twenty years ago I beat Stage IV colon cancer. How? Because at the time my work took me from the Mexican boarder to the Canadian boarder. I was traveling in a RV, so home was where I parked every night. I was on a river all or part of 150+ days that year. It was the Best year bisiness wise I have ever had! I have been cancer free since then!
I guess my point in relating all of this on the board is to maybe help others to go out and do something out of the box that has limited us because of our disabilities or disease!
Our mind and spirit control so much of us and our life.
Thinking last night after I posted my plans, I got thinking. I was conditictory. Yes I have felt amazing, but it has only been a week! All of us with Fibromyalgia, Lyme, and Chronic Fatigue know that this can happen. You feel so good all of a suden you want to go out and do everything. So I changed my mind, Instead I am going to start the YMCA Silver Sneakers Yoga class this week. I need to build my self back up to where I am safe being on a river by myself!
Plenty of time left in the summer to go fishing! I want to be strong enough to enjoy myself and not make it an ordeal!
As I have done before I want to Thank Everyone who has read this and hopefully you can take away something that may help you.
I'm sure I am not alone when I say How Much of a Life Saver Mayo Connect has been to me!
It's a place where you can talk to people who will listen and not be judgemental and who understand what you are going through!
You all are such Great Spirits!
My Love, Thanks, and Blessings go out to all of you for your help and understanding!
Sundance (RB)

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@sundance6

Lioness, It's so sad that illness or lack of a fishing buddy we have to give up things we have enjoyed throughout our lives. My daughter says that " Fly fishing on a river is the closest her father gets to a religious experience." Partly true! This past year has been very hard not being out on a river. On a river is a time when I can get away from all the issues I think are Major and Overwhelming. Somehow when you come back to them they have either solved themselves or you find the answer to them right in front of you.
We all need to do that once in while! Go outside the box! That maybe part of my feeling better for the first time in a year! Week before this my daughter called and said that there were some car races in the little town in Northern New Mexico where she lives. My grandson said he wanted to go. (He and I went once last year.) She asked if I would come up and take him. Even though I was not feeling really well I said yes and made the three hour trip. (My grandsons father has very little to do with him.)
He and I ate diner and headed for the track, a mile away. He is 8 and it reminded me of the first time my dad took me to the races, I was also 8.
Anyway we laughed, joked, watched people and had a "BOYS NIGHT OUT" that he could not have had with my daughter. It was a two race weekend and I thought he woouldn't want to go the second night. I was wrong! He talked about the night before all day! So we went back and had more fun than the night before!
When I came back home I woke up Monday AM feeling like I hadn't felt in over a year!
Twenty years ago I beat Stage IV colon cancer. How? Because at the time my work took me from the Mexican boarder to the Canadian boarder. I was traveling in a RV, so home was where I parked every night. I was on a river all or part of 150+ days that year. It was the Best year bisiness wise I have ever had! I have been cancer free since then!
I guess my point in relating all of this on the board is to maybe help others to go out and do something out of the box that has limited us because of our disabilities or disease!
Our mind and spirit control so much of us and our life.
Thinking last night after I posted my plans, I got thinking. I was conditictory. Yes I have felt amazing, but it has only been a week! All of us with Fibromyalgia, Lyme, and Chronic Fatigue know that this can happen. You feel so good all of a suden you want to go out and do everything. So I changed my mind, Instead I am going to start the YMCA Silver Sneakers Yoga class this week. I need to build my self back up to where I am safe being on a river by myself!
Plenty of time left in the summer to go fishing! I want to be strong enough to enjoy myself and not make it an ordeal!
As I have done before I want to Thank Everyone who has read this and hopefully you can take away something that may help you.
I'm sure I am not alone when I say How Much of a Life Saver Mayo Connect has been to me!
It's a place where you can talk to people who will listen and not be judgemental and who understand what you are going through!
You all are such Great Spirits!
My Love, Thanks, and Blessings go out to all of you for your help and understanding!
Sundance (RB)

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@sundance6 I love your positivity! Good for you to get started on yoga, and take steps to get back to the river. We look forward to your fishing tales.
Ginger

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@sundance6

Lioness, It's so sad that illness or lack of a fishing buddy we have to give up things we have enjoyed throughout our lives. My daughter says that " Fly fishing on a river is the closest her father gets to a religious experience." Partly true! This past year has been very hard not being out on a river. On a river is a time when I can get away from all the issues I think are Major and Overwhelming. Somehow when you come back to them they have either solved themselves or you find the answer to them right in front of you.
We all need to do that once in while! Go outside the box! That maybe part of my feeling better for the first time in a year! Week before this my daughter called and said that there were some car races in the little town in Northern New Mexico where she lives. My grandson said he wanted to go. (He and I went once last year.) She asked if I would come up and take him. Even though I was not feeling really well I said yes and made the three hour trip. (My grandsons father has very little to do with him.)
He and I ate diner and headed for the track, a mile away. He is 8 and it reminded me of the first time my dad took me to the races, I was also 8.
Anyway we laughed, joked, watched people and had a "BOYS NIGHT OUT" that he could not have had with my daughter. It was a two race weekend and I thought he woouldn't want to go the second night. I was wrong! He talked about the night before all day! So we went back and had more fun than the night before!
When I came back home I woke up Monday AM feeling like I hadn't felt in over a year!
Twenty years ago I beat Stage IV colon cancer. How? Because at the time my work took me from the Mexican boarder to the Canadian boarder. I was traveling in a RV, so home was where I parked every night. I was on a river all or part of 150+ days that year. It was the Best year bisiness wise I have ever had! I have been cancer free since then!
I guess my point in relating all of this on the board is to maybe help others to go out and do something out of the box that has limited us because of our disabilities or disease!
Our mind and spirit control so much of us and our life.
Thinking last night after I posted my plans, I got thinking. I was conditictory. Yes I have felt amazing, but it has only been a week! All of us with Fibromyalgia, Lyme, and Chronic Fatigue know that this can happen. You feel so good all of a suden you want to go out and do everything. So I changed my mind, Instead I am going to start the YMCA Silver Sneakers Yoga class this week. I need to build my self back up to where I am safe being on a river by myself!
Plenty of time left in the summer to go fishing! I want to be strong enough to enjoy myself and not make it an ordeal!
As I have done before I want to Thank Everyone who has read this and hopefully you can take away something that may help you.
I'm sure I am not alone when I say How Much of a Life Saver Mayo Connect has been to me!
It's a place where you can talk to people who will listen and not be judgemental and who understand what you are going through!
You all are such Great Spirits!
My Love, Thanks, and Blessings go out to all of you for your help and understanding!
Sundance (RB)

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@sundance6 That's nice to go with your grandson . I know how much it meant . My grandson is 11 and even though we hurt the hurt goes away when we are with grandkids They make our day . When,s your next trip .? Glad you had a good time . I'm seeing mine on 25th. He wants grandma to take him to soak city at Knots Berry farm So that,ll be fun we had fun there before.

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Thank you for the nice thoughts. Yes they do help! I will see him in a couple of weeks. I can't wait! They are so Briliant. But it goes both ways, we both can learn from each other.
I hope you have a Great Time!
Starting the Yoga tomorrow. I am extroverted introvert! So meeting new people and doing something new is sometimes hard for me. You'd think I would get over it at my age! And doing the work I do is surprising to be that way.
But I am looking forward to it maybe help my body!
Will tell you how it went!
Sundance (RB)

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@sundance6 Yes let us know how it goes. I'm a extroverted introverted as I have gotten older its more introverted now. Friday we are going to soak city . I,ll get my bathing suit wet my grandson loved the tubes they have a ring it goes a good distance .

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Have Fun and be Safe!
Sundance (RB)

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@gingerw

@sundance6 I love your positivity! Good for you to get started on yoga, and take steps to get back to the river. We look forward to your fishing tales.
Ginger

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Well I made it through my first Yoga class yesterday! It was very interesting! It was a Silver Sneakers class at the YMCA so we were all over the age of 60. What was interesting was we did it on chairs. Which most of you already knew!
It's going to take a few times to learn how to breath properly when doing the excercises. Felt good when I was done. Then this AM I woke and got out of bed. I was sore in many parts of my body. Shows where my body has gone since all this happened. And it shows where I need to go.
My instructor was very nice and very concerned about me. I had introduced myself before the class and let her know what I had gone through this last year. Super person!
Anyway we meet two days a week. Looking forward to tomorrow, Thursday.
I would highly recomend any of you explore your Silver Sneakers in your area. Also the YMCA. I know it helps get you out of our comfort zone and is a benifit to all of us.
I'm assuming many of you are just like me! Even though I have been in business for over 50 years and traveled the country and the world, it took me to dig deep and go down and sign up. Then because I posted I was going to start the yoga class on this thread that I had commited myself to do it.
Again, that is what is so Special about Mayo Connect! We all are so honest and open with each other it is a Special Relationship that you don't want to let the Group(Team) down.
Thanks to all of you for the support you give to all of us.
Sundance (RB)

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@sundance6 Glad you liked it I do Yoga at home and chair exercise 2xWEEK Mostly stretching that's what I need. I have been on SilverSneakers for along time and love the pool I go to.

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