Fibromyalgia

Posted by sandymom @sandymom, Fri, Mar 8 8:36am

Since 1983 fibromyalgia has cost me my job home life. Daily struggles. One day up next down. What to do to cope? See psychiatrist med nurse pcp etc. let me here your story the sufferings this has caused. Any help please!

Question for all y'all experts: I was diagnosed with fibromyalgia in 2007 at the age of 21 (to complement my rheumatoid arthritis diagnosis at 19). I've had every drug anyone can seem to think of: Lyrica, gabapentin, pretty much every single antidepressant of every category, SSRIs and tricyclics, lithium, etc, and every version of painkillers: NSAIDs, opiates, plus prednisone and flexeril. I currently take Lyrica, gabapentin for breakthrough pain, flexeril, prednisone, and, uh, I think 4 SSRIs. Keeps me balanced and the pain managed most of the time.

The problem I have is that one type of pain has NEVER responded to ANY treatment, not even heavy opiates. It feels like: my long bones in my arms and legs, from the inside radiating out, have an excruciating migraine. The attacks are transient and last 5-20 minutes, and they are totally debilitating, They're close to a 9 on the pain scale. It'll just be one bone at a time usually, but sometimes both my thigh bones at the same time, and I'm worrying I might have an aneurysm from trying so hard not to scream. Doctors sort of weakly tried vitamin D and magnesium (which helped the regular fibro!) and nothing has changed. They don't have an answer, so they brush it off.

Has anyone experienced something like this? If so, have you found a treatment that works?

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@eburning Fibromyalgia has many sides to it so we aren't experts only in what that person has What other problems do you have besides fibro @r.a. if I might ask

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@lioness

@eburning Fibromyalgia has many sides to it so we aren't experts only in what that person has What other problems do you have besides fibro @r.a. if I might ask

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Fibro, RA, chronic migraine, anxiety.

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@eburning

Fibro, RA, chronic migraine, anxiety.

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@eburning With everything that you have had you tried other love nds of Dr,s ? let me chiropractor for headache,fibro .Do you use ice,heat other tools for your problems Do you exercise not sttenois but stretching ,water aerobics are easier on your joints and warm water pool for fibro That's hard for me to fine .I don't know where you live but Ability First is warm water These are just some of my experiences I have. Being your own advicate knowing your own body is necessary hope some of this helps Be keep nd to yourself

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@lioness

@sandymom Hi I have had fibromyalgia for along time I was like you tried them all Cymbalta was the worse med 1took and it effected me right away with confusion Savella and Lyrica not much better Do your own research and listen to your body as you are A Fibro group I'm with suggest we need more magnesium then other people Have Dr.check your labs I take 600 mg lab ct within normal limits

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Lyrica. The worst, for me. Side effects were very dangerous and having read large quantity of testimonials, I was not the only one afretted neurologically. Plus, many many state a connection between Lyrica and tooth loss. Teeth breaking off at gumline. Guess it causes rot from inside out. I did not experience that, but I did suffer falling, injuries, and amnesia. Many use it with no ill effects. But, many do have them. If I were new to this med, testimonials alone would dissuade me from using it. So. There's my 2 cents, lol.

Liked by lioness

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I completely understand ur struggles. One day at a time!@

Liked by lioness

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Everyday when u wake up, as hard as it is I am one who understands. Go to the window, open it so u can feel the fresh air surrounding u and realize the day has potential beauty – just look at how gorgeous the sky is. The sun, the clouds, and all things beautiful that is right in front of u.
Wake up like…. today I will and I can!

Liked by lioness

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@jmjlove

Oh, my, 3? Poor you. My first knee replacement was done 18 years ago. Won't be long and that will have to be replaced. But, like most everything else, I'll hold off as long as possible. I am not one of the lucky ones that actually feel better once it's replaced. Knee recovery for me is long and difficult. Had many different types of surgery, and there have only been a few times recovery was not quick. Total Knee Replacement, and TOS. Those two were very hard on me.

God bless you, dealing with cancer on top of everything else on your plate. Ok. So. You too, huh? When I go out in public I actually worry people will think im drunk, lol! And by golly, if I ever were to be pulled over and given a field sobriety test…well….I'd find my car impounded, and be in the back seat in a squad car, lickety-split!!!! I couldn't walk a straight line if my life depended on it. You? I am the queen of stubbed toes, bruised shoulders, and spilled drinks. I catch my daughters sly glances when I hold their babies. I'm extra careful….and they are extra watchful, as they should be.

May I ask, how did you lose your balance? Mine got sucked out with my cerebellar stroke.

And yes, I certainly am "amazing" !!!!! Just not sure….amazing at what? I know my kids find their new mother somewhat amazing, (a bit of a clutz, somewhat of an airhead) most of all at my toughness, which we wouldn't have know without the very challenges I find myself whining about! Peace to you. 🙂

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Hi. I wanted to tell u, never feel like ur alone. U need to find peace within. I do my own gentle Pilates yoga morning routine where I only do what I'm physically able to do and comfortable with. I listen to Mozart and repeat to myself …. peace within myself. ( several times)
That was my motivation and help to unstress alot of body pain. I know it sounds mundane or not believable – but – trust in ur inner strength and keep a calm clear mind so the music flows into ur chest.
😊

Liked by lioness

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@lioness

@buckimom When I first got it I went to a group of fibromyalgia people much like connect and they said Isometric exercises are as good as regular exercise for fibro
Water Aerobics and bring gental with yourself

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Hi. Try it own Pilates yoga routine that is very gentle lights your preference and liking and not strenuous and listen to Mozart and I guarantee you, it will be amazing. If you do not know how to do these correctly or a very mild form I suggest Googling gentle Pilates and gentle yoga and picking up your own rhythm of these and combining them and making your own routine.😊

Liked by lioness

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@jmjlove

Lyrica. The worst, for me. Side effects were very dangerous and having read large quantity of testimonials, I was not the only one afretted neurologically. Plus, many many state a connection between Lyrica and tooth loss. Teeth breaking off at gumline. Guess it causes rot from inside out. I did not experience that, but I did suffer falling, injuries, and amnesia. Many use it with no ill effects. But, many do have them. If I were new to this med, testimonials alone would dissuade me from using it. So. There's my 2 cents, lol.

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I couldn't agree more with that statement. I know other medications can be quite similar. I feel completely the same way about another medication. It's amazing how one could be so unsure and misguided and not be fully informed of side effects that are not listed.

Liked by lioness

REPLY
@eburning

Question for all y'all experts: I was diagnosed with fibromyalgia in 2007 at the age of 21 (to complement my rheumatoid arthritis diagnosis at 19). I've had every drug anyone can seem to think of: Lyrica, gabapentin, pretty much every single antidepressant of every category, SSRIs and tricyclics, lithium, etc, and every version of painkillers: NSAIDs, opiates, plus prednisone and flexeril. I currently take Lyrica, gabapentin for breakthrough pain, flexeril, prednisone, and, uh, I think 4 SSRIs. Keeps me balanced and the pain managed most of the time.

The problem I have is that one type of pain has NEVER responded to ANY treatment, not even heavy opiates. It feels like: my long bones in my arms and legs, from the inside radiating out, have an excruciating migraine. The attacks are transient and last 5-20 minutes, and they are totally debilitating, They're close to a 9 on the pain scale. It'll just be one bone at a time usually, but sometimes both my thigh bones at the same time, and I'm worrying I might have an aneurysm from trying so hard not to scream. Doctors sort of weakly tried vitamin D and magnesium (which helped the regular fibro!) and nothing has changed. They don't have an answer, so they brush it off.

Has anyone experienced something like this? If so, have you found a treatment that works?

Jump to this post

Absolutely. If you go to a vitamin store you can actually get vitamins that actually are for lubrication of the joints and I'm was never a believer of vitamins or that they could heal of any sort are health conditions or make them go completely go away. But I can tell you from experience yes they have amazing products and will help to change ur life.
Also as I stated in other post I am a huge believer on my own gentle yoga Pilates routine that I constructed informed to to myself because of my serious pain issues. If you do not know how to do Pilates or yoga I suggest Googling gentle yoga and gentle Pilates and find your own special rhythm with it that fits your body and your well-being and happiness. Listen to Mozart with a clear happy mind saying to yourself that you'll find peace Within

Liked by lioness, buckimom

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This fibromyalgia thing has kept me from getting the help I need. I have a better day and do more things. A pain level of 5 (the pain scale 1-10) is a good day. I tell myself I can do this all of the time. I tell myself I am not trying hard enough. I tried again to do physical therapy. Before this thing that has been labelled fibromyalgia I could do the things to keep muscle tone.
Now even on better days I am hesitant to be out because I then look like I am faking and I am just lazy. These are people that never knew me before the fibromyalgia. They see me as a burden on society.
Is it any wonder I have chosen to be solitary?? I see myself as not trying hard enough .Maybe I am not. Physical therapy worked a number on me. I keep trying to get back to where I was. This is how they weed out the ones that are lazy and don't want to get better. Maybe I don't. Maybe I am all the things I think I am.
Confused. Even spell check does not accept the word fibromyalgia.

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@parus

This fibromyalgia thing has kept me from getting the help I need. I have a better day and do more things. A pain level of 5 (the pain scale 1-10) is a good day. I tell myself I can do this all of the time. I tell myself I am not trying hard enough. I tried again to do physical therapy. Before this thing that has been labelled fibromyalgia I could do the things to keep muscle tone.
Now even on better days I am hesitant to be out because I then look like I am faking and I am just lazy. These are people that never knew me before the fibromyalgia. They see me as a burden on society.
Is it any wonder I have chosen to be solitary?? I see myself as not trying hard enough .Maybe I am not. Physical therapy worked a number on me. I keep trying to get back to where I was. This is how they weed out the ones that are lazy and don't want to get better. Maybe I don't. Maybe I am all the things I think I am.
Confused. Even spell check does not accept the word fibromyalgia.

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@parus
Yes, it's easier to stay home. The challenge is in doing the better thing. Which is to go out and face the day. To interact, even in small ways. Try to do the small things you can do, well. I set small goals…get groceries, check in on 88 year old father, enjoy my grandkids. The more I laugh and enjoy others, the more charitable I can be about them "not getting it". Every time I go out that door, I do myself a favor. I am more inclined to be alone, reading, or just staying in my comfort zone. The more I do that the easier it is to forget, hey, I have something to offer. Even if it's just helping an elderly person with the door, reach items on a high shelf, carry stuff for a struggling young mother. I am only as good as I give. Life comprises so much more than the sum total of my infirmities. We are valuable. Maybe we can't do big things. But we can do small things well.

The more we turn inward, participate less in life, we diminish our quality. Yes, it requires effort no one can know. And yes, it hurts to just get ready to go out. And NO, people aren't gonna get it. But, they don't need to for chronic pain sufferers to participate in life. I can't wait until those that should understand (because they know me) me, actually DO understand. I can't wait for that because life will pass me by. I miss too many opportunities to GIVE. There are no exercises, therapies, supplements or meds that can provide the boost to my wellbeing mere participation does.

I truly know how you feel. One part guilt, one part uncomfortable in your dysfunctional body, one part scared to get out there, and one part questioning our own sanity. I get it. Fibro is just one of my conditions. Conditions that would have crushed me years ago. But with each health challenge, instead of taking me down, I experience victories. Yep. Small ones. Not significant . But every single time I get out and do something, there is a satisfaction I won't have in seclusion.

I don't thrive on pats on the back, don't need sympathy, but I do need to participate. My husband buttons and zips me. Carries my drinks, helps me clean the house, helps with all the things I can no longer do because of brain damsge. Then he let's me go out and about, doesnt hover over me, because he knows it's good for me. I'm glad for his help, but prefer to do all I can on my own. Unfortunately, that doesn't include my hair. Dysfunctional left arm. Yes he even tries to help with my hair, lol.

Forgot to add….yes, there are days I can't get around, days I can't psyche myself out, days I lay around, throw up, rock my sorry head, but those days are not all my days. Do I like the new me? Not much. Am I a better person having to struggle with things others take for granted? Probably not. The new me is different. I cant go back, but neither do I want to waste the days ahead. God has given me time to use. He didn't take me with the stroke, the aneurysm, the ruptured uterus. Could have. But for some reason He saw it better to keep me here, which I am grateful for. The opportunity to rise above my disabilities and just grow up, give, and love. And yes, it's been so stinking hard, but well worth it. My family makes the efforts so very worth it.

REPLY
@jmjlove

@parus
Yes, it's easier to stay home. The challenge is in doing the better thing. Which is to go out and face the day. To interact, even in small ways. Try to do the small things you can do, well. I set small goals…get groceries, check in on 88 year old father, enjoy my grandkids. The more I laugh and enjoy others, the more charitable I can be about them "not getting it". Every time I go out that door, I do myself a favor. I am more inclined to be alone, reading, or just staying in my comfort zone. The more I do that the easier it is to forget, hey, I have something to offer. Even if it's just helping an elderly person with the door, reach items on a high shelf, carry stuff for a struggling young mother. I am only as good as I give. Life comprises so much more than the sum total of my infirmities. We are valuable. Maybe we can't do big things. But we can do small things well.

The more we turn inward, participate less in life, we diminish our quality. Yes, it requires effort no one can know. And yes, it hurts to just get ready to go out. And NO, people aren't gonna get it. But, they don't need to for chronic pain sufferers to participate in life. I can't wait until those that should understand (because they know me) me, actually DO understand. I can't wait for that because life will pass me by. I miss too many opportunities to GIVE. There are no exercises, therapies, supplements or meds that can provide the boost to my wellbeing mere participation does.

I truly know how you feel. One part guilt, one part uncomfortable in your dysfunctional body, one part scared to get out there, and one part questioning our own sanity. I get it. Fibro is just one of my conditions. Conditions that would have crushed me years ago. But with each health challenge, instead of taking me down, I experience victories. Yep. Small ones. Not significant . But every single time I get out and do something, there is a satisfaction I won't have in seclusion.

I don't thrive on pats on the back, don't need sympathy, but I do need to participate. My husband buttons and zips me. Carries my drinks, helps me clean the house, helps with all the things I can no longer do because of brain damsge. Then he let's me go out and about, doesnt hover over me, because he knows it's good for me. I'm glad for his help, but prefer to do all I can on my own. Unfortunately, that doesn't include my hair. Dysfunctional left arm. Yes he even tries to help with my hair, lol.

Forgot to add….yes, there are days I can't get around, days I can't psyche myself out, days I lay around, throw up, rock my sorry head, but those days are not all my days. Do I like the new me? Not much. Am I a better person having to struggle with things others take for granted? Probably not. The new me is different. I cant go back, but neither do I want to waste the days ahead. God has given me time to use. He didn't take me with the stroke, the aneurysm, the ruptured uterus. Could have. But for some reason He saw it better to keep me here, which I am grateful for. The opportunity to rise above my disabilities and just grow up, give, and love. And yes, it's been so stinking hard, but well worth it. My family makes the efforts so very worth it.

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Bravo ❤! So well said.
Your note just came directly for me (from God).🕊🕊🙏🕊🕊
Thank you from my heart and kudos to you and your great attitude 🙏❣🕊

Liked by lioness, jmjlove

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@sandymom

@sandymom please tell me about cbd oil. What if any difference do you see and how do you take it with instructions free pcp ?? Had you used the “oxy s” if so any help? Tell me about the dr’s you see if any. As you can image my 30 yrs. of pain is becoming sooo frustrating and to start aging at 70 with only my 40 yr old son & I left ( parents would’ve 100 this year) no siblings cousins etc left in the world I, We are struggling very hard now for help. As of corse as you know I could go on for hrs yrs tell me about you please

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I take CBD oil 1000mg 3 times.I am in BC,Canada so lots of 'pot shops' around. I have only taken Oxycodone following surgeries but only for a couple of days. I was trained Psychiatric nurse for all my working life so have seen what addiction does and I never wanted to go there. For many yrs I took Ibuprofen and Tylenol together but got worried about those when i stared with palpitations. I have been on Tramacet for many yrs after that but those made me short tempered. My husband of 39yrs is a saint for putting up with me. I managed to work till I was 58yrs old with lots of pain and stubbornness but after joint replacements to both thumbs it became difficult when a patient would become aggressive and needed to be dealt with quick ie injection,i couldn't draw things up fast enough.Then my back got so bad that I couldnt't sit to do charts on nights so early retirement was my only option. My advice to anyone is work as long as you can because retirement has made me worse as I now sit on the sofa scrolling through the TV pages and my back issues are sooooo much worse. The lady in the pot shop told me CBD doesn't work on pain for everyone but others have reported to her that they continue to take it as they feel better but can't put it into words. My 38yr son has started taking it ,he is a heavy Duty mechanic and hurt his neck and shoulder ,he now has the same pain I started with, My 46yr old daughter has had neck/shoulder pain for quiet a few yrs now and sits with a heat pad constantly when she is at home, My 48yr daughter has back issues so is in constant pain. So far only my 36yr old daughter is free of it.My gran always had a heat lamp sat at the back of the house which she used every night and my mum was crippled with pain from Osteoarthritis and well as chronic pain.SO, it looks like it's hereditary in my family but there isn't one Dr that wants to look into that I just feel they deal with the pain but not why or what's causing it really .I would say try CBD and for a few mths on a regualr basis to see if it really works, don't miss a dose.

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