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joanelle77
@joanelle77

Posts: 8
Joined: Jul 31, 2018

fibromyalgia newbie

Posted by @joanelle77, Wed, Aug 15 7:16am

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

REPLY

@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.

@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.

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.

@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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Hey there,@lioness, this is @mamacita, stopping by to say hello! How are you doing today? I'm having a slow day today, but I've been getting a few things accomplished. One of my meds has been recalled because it has a small amount of a carcinogenic substance. I have made the phone call and left a message for my good doctor. How unsettling! But very grateful to have gotten the notice from my insurance company. It's a good feeling to have someone looking out for your well being. That's how I feel about you guys. Thank you for just being. Love you big!

Liked by lioness

@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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Hi there, @doxyjune, what's up? Hope you are having a good day today. I wanted you to know how much I appreciate you being on here, and so willing to share your heart, your story, and your experiences. It is so heartening to hear that someone else has dealt with chronic, long term pain, using whatever works, until it doesn't work anymore. You have tried some of the same things I have used. I don't limit myself to prescription drugs, either. I take magnesium, a good multivitamin and mineral supplement, and flaxseed oil capsules. Extra vitamin C because stress sucks it right up! Ha! Of course, working with my good doctor who respects me and takes me seriously, meditation, minimalism, reading a variety of blogs and good books helps me infinitely. Ok, so I just thought I'd pop by for a bit. You never know what anyone might be going through. I randomly tell folks what they mean to me. You are a warrior, you know? You make a differenc. Just thought I'd tell you that. Ta for now,
Mamacita

Liked by lioness, gingerw

@joanelle77 – yep, it can be frustrating and confusing to get such a diagnosis. When the Dr told me about 5 years ago, we decided that medications would interfere too much with the other issues, so I muscle through with alternative therapies. Since I only have about 30% kidney function, gotta be careful. Yes, the symptoms are still there, but distractions are good ;)) I do volunteer work as my energy level will allow me, and I no longer fight to maintain a "front". Be gentle on yourself, allow yourself to change plans or even say "no" if you have to. That's not giving in to the dis-order, that is taking care of yourself. Good luck, and feel free to reach out.

@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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@mamacita thanks so much being strong with fibromyalgia thats why I took Lioness as my handle we have to think of ourselfs as being strong dont let this get us down Today is a fair day I got my haircut so this always makes me feel good take care ❤

@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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Hi @mamacita, thank you for your post. I really appreciate you saying that I am a warrior. You know every single person who lives in pain is a warrior. The thing is other people who don't know what pain is (and I was in that group when I was healthy) have no idea how hard it is to live with this pain. They look down on me/us. It makes life harder than it is. I feel people judge me. Like one "friend" said to me, you wake up and everyone is tired. So you get up and you move on with your day, shake it off. But she has no clue what it is like to wake up and not be able to think or move because you didn't sleep well. I do take a lot of the supplements you mention and I have to say honestly I have not found any of them to be of much help. I only take them because they are recommended. Today I feel depressed. It is lonely being this way. You can't commit to much because you never know if you will be able to make the commitment. No one ever thinks their life is going to end up like this. Thanks for connecting with me. You seem like a really nice person.

@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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Hi @mamacita I heard on the news tonite that there are cancer agents in breakfast cereal.

@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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Well,@doxyjune, it just gets better and better. My health insurance just notified me that my blood pressure medicine, Diovan HCT, is being withdrawn. Turns out there is a carcinogenic substance in the medicine. My PCP immediately got me on another med for BP. But a side affect is possible high blood sugar. Oy vey! Take good care of yourself, my friend. Have a restful weekend!

@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!

@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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@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.

@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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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.

@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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@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

Liked by Parus, lioness

@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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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.

Liked by lioness, gingerw

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