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!

@jmjlove

Does anyone know if any of these autoimmune diseases ever just wear themselves out, or will fibro follow us into old age? Asking for a friend, lol! It's very hard for me to know if a new pain is fibro, or another issue. It's gotten so I don't even bother complaining to doc, because it just means an appointment with another specialist, another round of tests. Most, by far, come back come back with nothing, requiring more tests, more appointment. Yep. I'm complaining, but sometimes I just can't NOT complain!

@grandmar…..thank you for the food list link 😊

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@jimjlove I've had fibro since the early 90,s You have to figure out what helps you the food journal is a great way to see what starts a flare For me I have found the nightshades vegies will make me hurt more gluten also dairy grandmar,s information is good .Fedupwithfatigue.com is a good website for fibro@Lyme disease

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@jmjlove

Does anyone know if any of these autoimmune diseases ever just wear themselves out, or will fibro follow us into old age? Asking for a friend, lol! It's very hard for me to know if a new pain is fibro, or another issue. It's gotten so I don't even bother complaining to doc, because it just means an appointment with another specialist, another round of tests. Most, by far, come back come back with nothing, requiring more tests, more appointment. Yep. I'm complaining, but sometimes I just can't NOT complain!

@grandmar…..thank you for the food list link 😊

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Good morning @jmjlove
From my personal experience and reading about others, there is no definitive answer regarding fibromyalgia.
I do believe that it never goes away, but I also believe that the symptoms can be controlled to a certain degree.
I've had fibro for over 30 years.
Today, I do not have the symptoms I did when I was in my 30s or 40s, etc. (I am 64yo).
However, if I have a massage and the therapist spends too much time on my tender points, I will have a flare up.
I your friend finds a doctor to handle the symptoms, flare ups may be able to be reduced to a very minimum.
As a recovering addict always calls themselves an addict (even if they haven't used in years and years), I consider myself to have fibromyalgia.
Hope this answers your question…..
Ronnie (GRANDMAr)

PS…..you are welcome for the food list link.

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@grandmar

Good morning @jmjlove
From my personal experience and reading about others, there is no definitive answer regarding fibromyalgia.
I do believe that it never goes away, but I also believe that the symptoms can be controlled to a certain degree.
I've had fibro for over 30 years.
Today, I do not have the symptoms I did when I was in my 30s or 40s, etc. (I am 64yo).
However, if I have a massage and the therapist spends too much time on my tender points, I will have a flare up.
I your friend finds a doctor to handle the symptoms, flare ups may be able to be reduced to a very minimum.
As a recovering addict always calls themselves an addict (even if they haven't used in years and years), I consider myself to have fibromyalgia.
Hope this answers your question…..
Ronnie (GRANDMAr)

PS…..you are welcome for the food list link.

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@grandmar….the "friend" part was a joke. Covering my butt for what may have been a silly question. I was diagnosed 28 years ago. Back when there was a fair amount of skepticism about this, as you know…..You've had it for 30 years. I too have less severe flare ups, but still get the occassionally "sprained" but not sprained ankle…complete with swelling and severe bruising, bleeding at connective points, bruising under the skin, painful, but from no particular cause. So yeah, it's still here, but it's been a long time since I've had to crawl on my hands and knees to get around, lol.edit: I now have two fake knees, so crawling around is no longer an option ☺ Rheumatoid mimics some of my fibro symptoms, so not always sure what's what.

I too have the sensitivity at trigger points. Sometimes hubby will grab my arm just to show me something or get my attention. If he hits a fibro spot, it can hurt for quite a while. Or if I lean against something just right it will set off a tender point and hurt for a good long while. So, i can certainly see where the deep massage would set you off. You always have a kind and helpful reply. Thank you.

Thank you @johnbishop… as always, a thoughtful reply. Yep, I'm inclined to agree with you. No such luck! I'd heard that it just burns out, but never truly believed that to be the case.

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By a chance of Luck last week I had a CBD Full Body Massage! If you have npt experienced one, Do Yourself a Favor and get one. It is recomended for those of us with Lyme, Fibro. and Chronic Fatugue.
I came away with a strange feeling, Like before I had one of the above!
It was well worth the $100!
Do Yourself a Favor and find somebody who will give you one. I wish I could afford to have one Every Wee.
Thanks,
Sundance, (RB)

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I sure will be looking for a CBD message therapist. Monday I will make some calls. D they do a gentle message as my body can not handle a deep tissue message.

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Summertime, By all Means! I've had body work done on me for fifty years so I am not Bashfull about saying what I want. It so happens ,as I said by chance I was sent to this "Spa" that also sells CBD. (Which if you can find would be the ideal place to have it done.) My body therapist was trained in doing body work on people with our disease. She was very gentle and soft with her hands. I thought I could have maybe liked a little harder, but thinking about it my body and it's needs are far different now than they were even a couple of years ago. Gentle and caring is what it needed!
Don't know where you live but I have heard CBD Oil is legal in every state.
Good Luck! Hopefully yours will be as enjoyable as mine!
Sundance (RB)

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I am so sorry you have gone through so much. Like you I have suffered for many years. When I was first diagnosed with Fibromyalgia it was in the mid 90’s. I was so bad those first years that I was bed ridden for awhile, then was in a wheelchair for a few months. Luckily I found a rheumatologist who believed in fibromyalgia when many didn’t. He lectured all over the USA trying to reach the unbelievers. Thankfully he also believed in pain management.
We spoke about all the different pain meds and the difference between addiction and dependence. Even way back then he told me if he saw signs of addiction he would put me in a detox program and no longer provide those types of meds but if I took my prescriptions as prescribed, didn’t call in the early saying I lost them or they were stolen or the hundreds of other excuses addicts come up with we would not have a problem. That worked fine for me even when a few years ago I was diagnosed with polymyalgia rheumatica and giant cell arteritis. Like many others the real problem came when my doctor retired earlier this year. He called all the rheumatologists that he respected and believed would be a good fit with me but none of them would prescribe the medication he had been giving me. So, now I see a rheumatologist for my autoimmune diseases and a pain management clinic to get the narcotics I have been on for years . I know many doctors don’t believe in pain meds for fibromyalgia but it kept me working up until a year ago when I was just couldn’t manage it anymore. I wish you all the best and hope you find a doctor that is understanding and keeps trying different medications until they find something that helps you. Oh, I also should let you know that my body doesn’t seem to make or hold on to vitamin D. St first I was prescribed 50,000 units once a week and that almost got me to normal. I take that same 50,000 units now but take it twice a week. My family doc took me off of it one summer a few years back saying I didn’t need it during the summer because I would get enough from the sun. Wrong! When I went in a few months later telling her I was as so exhausted that I could barely get out of bed she ran a blood screen and vitamin D levels didn’t even register. So my advice is to try to find a support group and a doctor that will listen to you. Take advantage of this group, We all seem to react differently to all the recommendations so read and try and you will find the tips and tricks and meds that work for you. I wish you the best of luck

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Currently undergoing treatment with BCG for bladder cancer. Do hope it is worth it as the fibro does not think so. But then, fibro is finicky about most everything. Anyone else with fibro have any experience in this area of BCG?? Have had 2 treatments and just plain miserable.

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@parus

Currently undergoing treatment with BCG for bladder cancer. Do hope it is worth it as the fibro does not think so. But then, fibro is finicky about most everything. Anyone else with fibro have any experience in this area of BCG?? Have had 2 treatments and just plain miserable.

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@parus I'm so sorry your are going through this pain I hope you don't have a lot of treatments yet to go . I don't know anything about BCG just wanted to let you know I feel bad you have to endure but in the end it will be worth it for you . Ask your Dr. if he has any advice either Dr.

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@lioness

@parus I'm so sorry your are going through this pain I hope you don't have a lot of treatments yet to go . I don't know anything about BCG just wanted to let you know I feel bad you have to endure but in the end it will be worth it for you . Ask your Dr. if he has any advice either Dr.

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@lioness Thank you for your kind, caring words. I did request something for the nausea. It helps in this area. I have 4 more treatments and the side effects are likely to become worse with more of the vaccine. Worth a try and hopefully it will be worth the discomfort. Trying to not slip into the depression pit where the monsters live.

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@parus

@lioness Thank you for your kind, caring words. I did request something for the nausea. It helps in this area. I have 4 more treatments and the side effects are likely to become worse with more of the vaccine. Worth a try and hopefully it will be worth the discomfort. Trying to not slip into the depression pit where the monsters live.

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@parus Plain toast, simple tea. Can you do CBD oil? More natural remedies for nausea include peppermint oil or belladonna [belladonna from Hylands homeopathic tablets, should be available on Amazon]. I used to use the liquid belladonna decades ago with my racehorses as their systems sometimes reacted to a strenuous workout, especially as babies getting ready to race. Only took 3 drops for a horse. Grabbing a teacup off the rack for you.
Ginger

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@parus

@lioness Thank you for your kind, caring words. I did request something for the nausea. It helps in this area. I have 4 more treatments and the side effects are likely to become worse with more of the vaccine. Worth a try and hopefully it will be worth the discomfort. Trying to not slip into the depression pit where the monsters live.

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@parus I am saying a prayer for you right now. I know it will get better.

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@parus

@lioness Thank you for your kind, caring words. I did request something for the nausea. It helps in this area. I have 4 more treatments and the side effects are likely to become worse with more of the vaccine. Worth a try and hopefully it will be worth the discomfort. Trying to not slip into the depression pit where the monsters live.

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@parus. saltines and ginger ale will help with nausea. When those monsters creep up take a broom to them literally swat them away may make you feel better . Then do what gives you pleasure .

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@lioness

@parus. saltines and ginger ale will help with nausea. When those monsters creep up take a broom to them literally swat them away may make you feel better . Then do what gives you pleasure .

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To all, something that I am just now realising. Several weeks ago a friend gave me some CBD oil to try. She also told me where she buys it. I went to the Spa and picked up one with and external applicator. While there talking to Rebbeca at the counter she also suggested a CBD body massage.
Since I have had body work done to me for over 50 years it sounded good. So I signed up for the next day. I went in an had it. It was the start of a recovery process that I am enjoying! Feeling much like my "OLD SELF" again.
Take the time and budget your $$$'s to have either the CBD Oil treatment or even just a simple body work done.
It is amazing how your body reaacts by haveing something nice done to it rather than having needles stuck in it.
Good Luck and my Thoughts to You!
Sundance (RB)

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I know it has been a few months since your post, but have you heard of the fibromyalgia 2day class that teaches you how to manage symptoms? I am scheduled this next week to participate- so no suggestions yet! I know it it offered through the dept of psychiatry. You provide answers to questionnaires, then meet with the dr for consultation before the class, and the class follows, 2 days from 8-4. I am super excited to see what they can help with as I have been on multiple medications that never really seem to do the trick.
Hope this helps & you start to feel better soon 💚

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