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joanelle77 (@joanelle77)

fibromyalgia newbie

Chronic Pain | Last Active: Aug 23, 2018 | Replies (21)

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@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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Replies to "Hi if you are underweight, why can't you take steroids? I have taken hydrocortisone and it..."

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

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.

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!

@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.

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.

@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

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.

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