1. < Fibromyalgia

fibromyalgia newbie

Posted by joanelle77 @joanelle77, Aug 15, 2018

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

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

Mamacita, Alumna Mentor | @mamacita | Aug 17, 2018
In reply to @doxyjune "Hi if you are underweight, why can't you take steroids? I have taken hydrocortisone and it..." + (show)
@doxyjune

Hi if you are underweight, why can't you take steroids? I have taken hydrocortisone and it helped me - gave me strength in my legs, where I have the worst pain. But I gained weight on it. Are you on any painkillers? I have been on ultram and hydrocodone for 20 years. I'm not sure what is wrong with me - I also have raynaud's syndrome which is bad circulation and I think it gives me pain in my legs and even my head. I was also on neurontin but gained weight on that drug, but I did find that it helped me now. When I was 40 and newly diagnosed neurontin didn't help me at all and I was on the max dose 3600 mg a day- but also gained weight. Now 20 years later, I found it did help but don't want the weight gain. Perhaps if you can get a mild painkiller it might help you = Sorry to hear of your situation.

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Hey, @doxyjune, how you doing today? Good, I hope. We went out and found a good chair for my husband. He spends a lot of time on the computer, so he needs a really good chair. (History Buff and writer. )
Prior to that we ate. a bit of lunch at this restaurant where my friend works. We went there because all the tips she gets today will go towards her mission trip to Africa. She had seen my post about having a Fibro flare, and would you believe it, she sincerely asked how I was feeling. Of course, my cane might have tipped her off. You know what? That meant so much to me. That someone actually cared enough to ask how I was doing.
Today has been a " take everythingyouareprescrbedplusahotepsomsaltsbath" kind of day. And yet my muscles are still throbbing. I dread when one med wears off and I
have to take more. The meds slow me down, but they don't take all the pain away. When I have a really bad flare, it feels like I am being randomly beaten.

Invisible illnesses are rough. I have lost"friends" before, because I had to say "no" so many times. Plans would have to be changed at the last minute. Healthy people can't get away fast enough. It's like, "You were ok last week, how come you can't do anything this week?" Your integrity comes into play. Healthy people cannot imagine being in the kind of pain we have. It just blows their minds. We must be exaggerating. Or trying to get attention.
So, here we are. Two honest, tired of being sick and tired girls who would give their right pinky toe to not be in this much misery. But you know what? I'm going to keep on taking my medicine. I'm going to keep on cleaning my house. I'm going to keep on taking my vitamins and minerals. I'm going to keep on practicing mindfulness. I will get up every day and dress like I'm going somewhere. I will practice self-care and encourage others to do the same. I will be grateful for the few and far between who' believe me when I say I am hurting too badly to go shopping. I will love those who hug me and tell me they love me.
I am not worthless because I cannot do everything I once did. I am a human being, not a human doing. If all I can do today is encourage one person to not give up, that's good enough for me. That's why I call you a warrior, dear heart. Pain makes us stronger. Love talking with you! Thank you for your kind words. Talk with you soon!

REPLY
lioness | @lioness | Aug 17, 2018
In reply to @doxyjune "Hi if you are underweight, why can't you take steroids? I have taken hydrocortisone and it..." + (show)
@doxyjune

Hi if you are underweight, why can't you take steroids? I have taken hydrocortisone and it helped me - gave me strength in my legs, where I have the worst pain. But I gained weight on it. Are you on any painkillers? I have been on ultram and hydrocodone for 20 years. I'm not sure what is wrong with me - I also have raynaud's syndrome which is bad circulation and I think it gives me pain in my legs and even my head. I was also on neurontin but gained weight on that drug, but I did find that it helped me now. When I was 40 and newly diagnosed neurontin didn't help me at all and I was on the max dose 3600 mg a day- but also gained weight. Now 20 years later, I found it did help but don't want the weight gain. Perhaps if you can get a mild painkiller it might help you = Sorry to hear of your situation.

Jump to this post

@mamacita Hi thefe hope your day was a good day. I want to tell you Procure brand has Epsom salts in a rub ,when I cant use it in water ,cant get into tub, I just rub it on my muscles works just like you soaked in it.found it at Walmart Dont have a car so walked alot today I,ll be using it.Have a pain free weekend ,if possible.

REPLY
edda | @edda | Aug 18, 2018
In reply to @doxyjune "Hi if you are underweight, why can't you take steroids? I have taken hydrocortisone and it..." + (show)
@doxyjune

Hi if you are underweight, why can't you take steroids? I have taken hydrocortisone and it helped me - gave me strength in my legs, where I have the worst pain. But I gained weight on it. Are you on any painkillers? I have been on ultram and hydrocodone for 20 years. I'm not sure what is wrong with me - I also have raynaud's syndrome which is bad circulation and I think it gives me pain in my legs and even my head. I was also on neurontin but gained weight on that drug, but I did find that it helped me now. When I was 40 and newly diagnosed neurontin didn't help me at all and I was on the max dose 3600 mg a day- but also gained weight. Now 20 years later, I found it did help but don't want the weight gain. Perhaps if you can get a mild painkiller it might help you = Sorry to hear of your situation.

Jump to this post

I am in the same boat and been there for years. It is not easy to live like that, when there is no concrete evidence of anything terrible wrong. At least, what doctors are saying. But it does get bad for me now. AF, stomach ulcers, IBS, headaches, weight loss, chronic pain, loss of interest in almost everything. Depression, anxiety, nausea. Trying to wean off opioids now, since they do not help anymore. Taking gabapentin or lyrica now for pain. But does not help.
Was so active and happy till I started to get those pains. Still think, there is something, we are missing.
One doctor even ordered a pet scan a few years ago. Did not show anything serious wrong.
So if somebody has some suggestions.

REPLY
GailBL, Alumni Mentor | @gailb | Aug 18, 2018
In reply to @doxyjune "Hi if you are underweight, why can't you take steroids? I have taken hydrocortisone and it..." + (show)
@doxyjune

Hi if you are underweight, why can't you take steroids? I have taken hydrocortisone and it helped me - gave me strength in my legs, where I have the worst pain. But I gained weight on it. Are you on any painkillers? I have been on ultram and hydrocodone for 20 years. I'm not sure what is wrong with me - I also have raynaud's syndrome which is bad circulation and I think it gives me pain in my legs and even my head. I was also on neurontin but gained weight on that drug, but I did find that it helped me now. When I was 40 and newly diagnosed neurontin didn't help me at all and I was on the max dose 3600 mg a day- but also gained weight. Now 20 years later, I found it did help but don't want the weight gain. Perhaps if you can get a mild painkiller it might help you = Sorry to hear of your situation.

Jump to this post

@edda

I was taking Gabapentin 300 mg 2 times a day, but decided to get off it. I was losing large amounts of memory and had brain fog a lot. It wasn't easy to withdraw from it, but when I did, I discovered that my pain actually got better. I'm not a medical professional, so my experience is anecdotal only. However, I will never take that medication again.

Lyrica is the new formulation, with a few changes, of Gabapentin. Making the generic Gabapentin public caused the manufacturer to slightly change the formula so they can continue making money from it as Lyrica. I urge you to find if there is an alternative medicine you can take rather than any of the drugs in this category.

Gail
Volunteer Mentor

REPLY
cloe001 | @cloe001 | Aug 19, 2018
In reply to @doxyjune "Hi if you are underweight, why can't you take steroids? I have taken hydrocortisone and it..." + (show)
@doxyjune

Hi if you are underweight, why can't you take steroids? I have taken hydrocortisone and it helped me - gave me strength in my legs, where I have the worst pain. But I gained weight on it. Are you on any painkillers? I have been on ultram and hydrocodone for 20 years. I'm not sure what is wrong with me - I also have raynaud's syndrome which is bad circulation and I think it gives me pain in my legs and even my head. I was also on neurontin but gained weight on that drug, but I did find that it helped me now. When I was 40 and newly diagnosed neurontin didn't help me at all and I was on the max dose 3600 mg a day- but also gained weight. Now 20 years later, I found it did help but don't want the weight gain. Perhaps if you can get a mild painkiller it might help you = Sorry to hear of your situation.

Jump to this post

I so relate to your thoughts. Prayer, the support of others, and taking one positive step at a time away from isolation & negative thinking is helping me. One day at a time has turned into the next 5 minitutes at a time ... the day is way too big for me. Peace be with you & remember you are not alone.

REPLY
karen00 | @karen00 | Aug 23, 2018
In reply to @mamacita "@joanelle77 , Welcome to Mayo Clinic Connect! I go by Mamacita here and other places. I..." + (show)
@mamacita

@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.

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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!

REPLY
Mamacita, Alumna Mentor | @mamacita | Aug 23, 2018
In reply to @mamacita "@joanelle77 , Welcome to Mayo Clinic Connect! I go by Mamacita here and other places. I..." + (show)
@mamacita

@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.

Jump to this post

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

REPLY
Mamacita, Alumna Mentor | @mamacita | Aug 23, 2018
In reply to @lioness "@joanelle77 I love mamacitas post be positive with what you do and think. Remedies Ive found..." + (show)
@lioness

@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.

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@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

REPLY
lioness | @lioness | Aug 23, 2018
In reply to @lioness "@joanelle77 I love mamacitas post be positive with what you do and think. Remedies Ive found..." + (show)
@lioness

@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.

Jump to this post

@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

REPLY
oldkarl | @oldkarl | Aug 23, 2018
In reply to @mamacita "@joanelle77 , Welcome to Mayo Clinic Connect! I go by Mamacita here and other places. I..." + (show)
@mamacita

@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.

Jump to this post

@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"

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