fibromyalgia newbie
I was just diagnosed with fibromyalgia. I'm very miserable with joint pain and kidney/bladder pain. I live in Nashville TN and the heat, humidity and poor Air Quality make me very short of breath when outside. I'm on 300 Neurontin 3 times a day being increased as tolerated to 600 3/day. Side effects are rough. Can't take steroids. About 45-50 pounds underweight. I would love responses
Mamacita, Alumna Mentor
@mamacita
@mamacita
Posts: 1037
Joined: Oct 13, 2016
@joanelle77 , Welcome to Mayo Clinic Connect! I go by Mamacita here and other places. I am a Volunteer Mentor here on Connect. I was diagnosed in 1990, at the Kirklin Clinic in Birmibgham, Alabama. I know I had it long before that. I am sipping on my first cup of coffee, feeling the coolness of the morning around my shoulders, listening to inspirational, positive music. Today has been wonderful, so far. Yesterday was a pain-filled, crying until there are no tears left kind of day. My boy is gone to Georgia to visit family. I miss him so much. He makes up a bed for me in the living room when I can't bear to stay in bed any longer. He tells me to just rest, not worry about anything. He'll take care of my chores.
I want you to be encouraged. But you will need to be strong. You will need to know right off the bat that many people will not understand your illness. They will minimize your pain, question it's legitimacy, and downright call you out on it. I, too, have Gabapentin in my arsenal of weapons against this horrid illness. Normally I don't take it at all, as Lyrica usually handles the pain. My diet has changed over the years. For me, personally,food intake does effect my pain level. In your study of Fibromyalgia you are going to meet those who swear by a keto diet. That particular way of eating works for many, many people. But not for everyone. If your PCP listens to you, and spends more than ten minutes with you, ask her what her opinion on the subject is. Poor grammar, but you get the picture. You just might be one of the fortunate ones like me, who has an amazing PCP and Specialist as well.
It took years to find them. What is important is that you take very good care of yoursrlf. This is not selfishness on your part. If you don't take care of yourself, you won't have anything left to give anyone else. Fill your life with beautiful things. People, pets, books, music, poetry, sunsets, children's laughter, the wrinkled, lovely hands of an elderly person in a nursing home. Check out groups until you find the right mix for yourself. There are tons of online groups for support. I may be a bit biased, but this is home for me.
Don't pay any attention to naysayers who tell you there is nothing you can do to help yourself. There's more than just one item in my medicine bag. There's faith, hope, and love. There are friends who will stay by your side and just sit quietly with you. Fibromyalgia ebbs and flows. Sometimes it even goes away for a very long time. I come from a multicultural ancestry. Now would be a good time to refresh yourself with what your ancestors endured to get where they were. There is comfort in the middle of the storm. All of our ancestors had it rough, no matter where they came from. We can learn a lot from them. God bless you, sweet lady. You will make it.
Oh, dear@karen00, I know you must be devastated with this recent bit of news. I recently learned that one of my dear friends and mentor has been battling this condition for about ten years. I was both shocked and surprised. First, because he looked so good. Secondly, he had the condition for years! That gave me hope that there were more treatment options available than I previously had thought. I look forward to learning more about your story, as much as you are comfortable. My husband has Crohns Disease, Diabetes, and Cirrhosis of the Liver. ( Not from alcohol abuse) Having a loved one endure serious, life threatening diseases is an experience that few people understand. It changed my life. I try to remember what is important, and cherish every day. I hope and pray that many blessings will come your way, even in the midst of this struggle. I am here for you. I will check on you from time to time, if that's alright with you? Hugs and love…
Mamacita
Mamacita, Alumna Mentor
@mamacita
@mamacita
Posts: 1037
Joined: Oct 13, 2016
@joanelle77 I love mamacitas post be positive with what you do and think. Remedies Ive found wors for me Good vitamin n my neral ,muscle relaxer med.,hot shower when your h scles hurt,Epsom salts,more magnesium,Tens unit ,ice Most meds dot agree with me so Ive learned to do more naturel herbs .Resting and saying no when your body tells you with fibromyalgia this is important watch your diet try to stay away from sugar and fats.
@lioness, I too, use as many natural supplements and treatments as possible. I cannot depend on medication to eliminate pain 100% of the time. When I think of how extensive the nervous system is, it is no wonder we have such pain. Yours for a cure!
Mamacita
lioness
@lioness
@lioness
Posts: 7704
Joined: Jan 09, 2018
@joanelle77 I love mamacitas post be positive with what you do and think. Remedies Ive found wors for me Good vitamin n my neral ,muscle relaxer med.,hot shower when your h scles hurt,Epsom salts,more magnesium,Tens unit ,ice Most meds dot agree with me so Ive learned to do more naturel herbs .Resting and saying no when your body tells you with fibromyalgia this is important watch your diet try to stay away from sugar and fats.
@mamacita Nice to hear this as this is the way to go I was talking with a women who has fibro she found Diary products ,nightshade veggies ,sugar fat are her flare ups for fibro I know I can't do tomatoes or peppres which i s ha rd to stay away from One thing I do for pain if you like tea ☕is Arnica tea for pain only place Ive found it is at Rite Aide For nerves (CNS) I take homeopathic nerve tonic its naturel ,I dont mention it to often but I like your comments if I can help I will even though I got scolded .heres to are good health and better days blessings Linda
Liked by Mamacita, Alumna Mentor
oldkarl
@oldkarl
@oldkarl
Posts: 708
Joined: May 25, 2016
@joanelle77 , Welcome to Mayo Clinic Connect! I go by Mamacita here and other places. I am a Volunteer Mentor here on Connect. I was diagnosed in 1990, at the Kirklin Clinic in Birmibgham, Alabama. I know I had it long before that. I am sipping on my first cup of coffee, feeling the coolness of the morning around my shoulders, listening to inspirational, positive music. Today has been wonderful, so far. Yesterday was a pain-filled, crying until there are no tears left kind of day. My boy is gone to Georgia to visit family. I miss him so much. He makes up a bed for me in the living room when I can't bear to stay in bed any longer. He tells me to just rest, not worry about anything. He'll take care of my chores.
I want you to be encouraged. But you will need to be strong. You will need to know right off the bat that many people will not understand your illness. They will minimize your pain, question it's legitimacy, and downright call you out on it. I, too, have Gabapentin in my arsenal of weapons against this horrid illness. Normally I don't take it at all, as Lyrica usually handles the pain. My diet has changed over the years. For me, personally,food intake does effect my pain level. In your study of Fibromyalgia you are going to meet those who swear by a keto diet. That particular way of eating works for many, many people. But not for everyone. If your PCP listens to you, and spends more than ten minutes with you, ask her what her opinion on the subject is. Poor grammar, but you get the picture. You just might be one of the fortunate ones like me, who has an amazing PCP and Specialist as well.
It took years to find them. What is important is that you take very good care of yoursrlf. This is not selfishness on your part. If you don't take care of yourself, you won't have anything left to give anyone else. Fill your life with beautiful things. People, pets, books, music, poetry, sunsets, children's laughter, the wrinkled, lovely hands of an elderly person in a nursing home. Check out groups until you find the right mix for yourself. There are tons of online groups for support. I may be a bit biased, but this is home for me.
Don't pay any attention to naysayers who tell you there is nothing you can do to help yourself. There's more than just one item in my medicine bag. There's faith, hope, and love. There are friends who will stay by your side and just sit quietly with you. Fibromyalgia ebbs and flows. Sometimes it even goes away for a very long time. I come from a multicultural ancestry. Now would be a good time to refresh yourself with what your ancestors endured to get where they were. There is comfort in the middle of the storm. All of our ancestors had it rough, no matter where they came from. We can learn a lot from them. God bless you, sweet lady. You will make it.
@karen00 and @mamacita Just a bit of warning. I have learned the hard way that multiple autoimmune disorders showing up are a difficult sign. Many of them work by starting with just a bit of protein misfolding and cloning themselves a few times, then dying and depositing themselves in some part(s) of the body. Then this repeats and more are made in a few hours. Now, having Crohn's, Diabites, and Non-Alcoholic Cirrhosis seem to be just the start. The deposits pick up speed, more is the impact on the body, and faster the spread. I started with about that, and now I have a whole body of dead protein deposits, and a whole bunch of sick tissues and organs. If you can find some way to slow down these deposits or remove them, that is what you really want to do. This is similar to other diseases, but the process is much the same. You don't need to panic, just always be on the lookout for new signs and symptoms of tissues in trouble. Skin, toenails, tongue, stomach, pancreas, ankles, hair, whatever. And when you see something changing, talk it over with your doctor, and educate yourself with Mayo, Anderson Sloan-K, Cleveland, NIH, whatever. And take on the attitude of excitement for learning about your body. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl"
Liked by Ginger, Volunteer Mentor
karen00
@karen00
@karen00
Posts: 301
Joined: Aug 13, 2018
@joanelle77 , Welcome to Mayo Clinic Connect! I go by Mamacita here and other places. I am a Volunteer Mentor here on Connect. I was diagnosed in 1990, at the Kirklin Clinic in Birmibgham, Alabama. I know I had it long before that. I am sipping on my first cup of coffee, feeling the coolness of the morning around my shoulders, listening to inspirational, positive music. Today has been wonderful, so far. Yesterday was a pain-filled, crying until there are no tears left kind of day. My boy is gone to Georgia to visit family. I miss him so much. He makes up a bed for me in the living room when I can't bear to stay in bed any longer. He tells me to just rest, not worry about anything. He'll take care of my chores.
I want you to be encouraged. But you will need to be strong. You will need to know right off the bat that many people will not understand your illness. They will minimize your pain, question it's legitimacy, and downright call you out on it. I, too, have Gabapentin in my arsenal of weapons against this horrid illness. Normally I don't take it at all, as Lyrica usually handles the pain. My diet has changed over the years. For me, personally,food intake does effect my pain level. In your study of Fibromyalgia you are going to meet those who swear by a keto diet. That particular way of eating works for many, many people. But not for everyone. If your PCP listens to you, and spends more than ten minutes with you, ask her what her opinion on the subject is. Poor grammar, but you get the picture. You just might be one of the fortunate ones like me, who has an amazing PCP and Specialist as well.
It took years to find them. What is important is that you take very good care of yoursrlf. This is not selfishness on your part. If you don't take care of yourself, you won't have anything left to give anyone else. Fill your life with beautiful things. People, pets, books, music, poetry, sunsets, children's laughter, the wrinkled, lovely hands of an elderly person in a nursing home. Check out groups until you find the right mix for yourself. There are tons of online groups for support. I may be a bit biased, but this is home for me.
Don't pay any attention to naysayers who tell you there is nothing you can do to help yourself. There's more than just one item in my medicine bag. There's faith, hope, and love. There are friends who will stay by your side and just sit quietly with you. Fibromyalgia ebbs and flows. Sometimes it even goes away for a very long time. I come from a multicultural ancestry. Now would be a good time to refresh yourself with what your ancestors endured to get where they were. There is comfort in the middle of the storm. All of our ancestors had it rough, no matter where they came from. We can learn a lot from them. God bless you, sweet lady. You will make it.
Mamacita, thanks for the kind words. It really does help to be able to “talk” to someone who understands. I have to go back in for labs, stress test, and ultrasound. Boy do I dread this!! I’m already tensing up-my blood pressure was pretty high. I have to try and relax! We’ll keep in touch. I really hope you are having a good day!
@karen00
Mamacita – I have enjoyed and learned so much from your postings! I, too, have fibromyalgia and also rheumatoid arthritis. My diagnosis was in 2003 at a back clinic and I was totally surprised. My physician assistant was seeing me for back pain only, but ascertained somehow that I had fibromyalgia. I didn’t believe it for years. If the pain wasn’t enough, yesterday I was diagnosed with heart failure. I’m only 60 so this came as a shock. I’ve always prided myself on my strength, but I don’t feel strong anymore. I’m trying, though, and reading your writings props me up! Thanks!
Liked by Mamacita, Alumna Mentor