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!

I believe most of us can understand feeling more vulnerable. I do Tai Chi to help my balance and keep muscles as active as I can. I no longer expect people to understand. I can no longer allow others to control how I think and feel about myself!

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Anyone else been having endless flares?? I think I am better and start to join life again and whoosh I am once again swept away to that fibromyalgia pain. Frustrating as I don’t know what is causing thus. I guess there is not always a reason with this fibro grab bag.

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@parus

Anyone else been having endless flares?? I think I am better and start to join life again and whoosh I am once again swept away to that fibromyalgia pain. Frustrating as I don’t know what is causing thus. I guess there is not always a reason with this fibro grab bag.

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@parus I think the westher everytime it changes I hurt I just went through a flare I noted thre weather went from on 60,s her to 75 next day Im becoming to believe weathetr has alot to do with flares

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@rnicoletti

Hi I have been diagnosed with fibromyalgia. 6 years ago. The past week I've had to work hard at home and work. Lately I get waves of pain. Overwhelmed with anziety. I feel sick. cant eat like I used to. I Wake up starving feeling past year I'd say. Lower back and hips are the worst . But pain is wide spread. Super weak. Sore muscles. High joint pain. The pain rarely goes away. I'm unsure how to help myself in this situation. I am struggling to make it thru the day at work. I dont know what to do anymore….I dont give up but I'm feeling like I have no options left…it only gets worse as time goes by. Any thoughts that may help me? I need to go to the doctor but I am so overworked I rarely find time or money to do so. Not sure where to turn for the proper help…

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@rnicoletti Welcome to connect we aren't Drs but maybe give you info about what helps us.First of all your health is important ,you need to take time to take care of yourself.See a good rheumatologist and have him give you some pain medicine or have you done this? I've had fibro since the 90,s it doesn't go away but there are ways of controlling it except when you have a fibro flare Ginger Tumeric tea is anti inflamatory as well as ice,Hot shower when you hurt Epsom salts in bath or washcloth on spots I use a tens unit for stiff muscles this relaxes them Magnesium is important I take 600 mg.a day Fibro malic is great for this or Mag.Malete Other people have other things these are a few I use But it's important to see a rheumatologist Take your health seriously.

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Hi I have been diagnosed with fibromyalgia. 6 years ago. The past week I've had to work hard at home and work. Lately I get waves of pain. Overwhelmed with anziety. I feel sick. cant eat like I used to. I Wake up starving feeling past year I'd say. Lower back and hips are the worst . But pain is wide spread. Super weak. Sore muscles. High joint pain. The pain rarely goes away. I'm unsure how to help myself in this situation. I am struggling to make it thru the day at work. I dont know what to do anymore….I dont give up but I'm feeling like I have no options left…it only gets worse as time goes by. Any thoughts that may help me? I need to go to the doctor but I am so overworked I rarely find time or money to do so. Not sure where to turn for the proper help…

Liked by grandmaR

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@rnicoletti

Hi I have been diagnosed with fibromyalgia. 6 years ago. The past week I've had to work hard at home and work. Lately I get waves of pain. Overwhelmed with anziety. I feel sick. cant eat like I used to. I Wake up starving feeling past year I'd say. Lower back and hips are the worst . But pain is wide spread. Super weak. Sore muscles. High joint pain. The pain rarely goes away. I'm unsure how to help myself in this situation. I am struggling to make it thru the day at work. I dont know what to do anymore….I dont give up but I'm feeling like I have no options left…it only gets worse as time goes by. Any thoughts that may help me? I need to go to the doctor but I am so overworked I rarely find time or money to do so. Not sure where to turn for the proper help…

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Hello @rnicoletti, I'd like to add my welcome to @lioness'. You may notice that I merged your discussion titled "Fibromyalgia" in to another discussion of the same title. I did this so the members already discussing fibromyalgia would see your message and have a chance to respond. If you are replying by email, you can click VIEW & REPLY to be brought to the new location of your post and to read through some of the posts already made in this discussion. Here are a few other Fibromyalgia discussions on Connect as well:

Autoimmune Diseases > Fibromyalgia > https://connect.mayoclinic.org/discussion/fibromyalgia-5/
Chronic Pain > Fibromyalgia Pain > https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/

@rnicoletti, what sort of things do you currently do to try and help mitigate your fibromyalgia pain and flares?

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@JustinMcClanahan

Hello @rnicoletti, I'd like to add my welcome to @lioness'. You may notice that I merged your discussion titled "Fibromyalgia" in to another discussion of the same title. I did this so the members already discussing fibromyalgia would see your message and have a chance to respond. If you are replying by email, you can click VIEW & REPLY to be brought to the new location of your post and to read through some of the posts already made in this discussion. Here are a few other Fibromyalgia discussions on Connect as well:

Autoimmune Diseases > Fibromyalgia > https://connect.mayoclinic.org/discussion/fibromyalgia-5/
Chronic Pain > Fibromyalgia Pain > https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/

@rnicoletti, what sort of things do you currently do to try and help mitigate your fibromyalgia pain and flares?

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I have tried amitriptyline. No help. I tried supplements. Cbd .marijuana. nothing helps pain other than not doing physical activity. Rest. But sometimes I wake up feeling worse than before I slept. Limbs go numb . Twitching . Sometimes it's like I can feel all nerves in my bodyI'm a autobody man for trade 36 years old. 147 lbs my entire adulthood. Active. Dont even watch t.v. rarely.

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@rnicoletti

I have tried amitriptyline. No help. I tried supplements. Cbd .marijuana. nothing helps pain other than not doing physical activity. Rest. But sometimes I wake up feeling worse than before I slept. Limbs go numb . Twitching . Sometimes it's like I can feel all nerves in my bodyI'm a autobody man for trade 36 years old. 147 lbs my entire adulthood. Active. Dont even watch t.v. rarely.

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@rnicoletti I understand how you feel but you have to do exercise not heavy weights but mainly stretching exercises then more vigerous type light weights I know you don't see how it can help but it does your muscles start to relax getting the stiffness out .Have you seen a rheumatologist yet?

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@rnicoletti One other thing don't overdue the exercise when your tired stop .With your nerves it can be from fibro as mine are or neuropathy Hope you are seeing a Dr for complete blood work ,tell him how you feel ,you have to be your own advocate where your health is concerned Hope you have a better day

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@rnicoletti

Hi I have been diagnosed with fibromyalgia. 6 years ago. The past week I've had to work hard at home and work. Lately I get waves of pain. Overwhelmed with anziety. I feel sick. cant eat like I used to. I Wake up starving feeling past year I'd say. Lower back and hips are the worst . But pain is wide spread. Super weak. Sore muscles. High joint pain. The pain rarely goes away. I'm unsure how to help myself in this situation. I am struggling to make it thru the day at work. I dont know what to do anymore….I dont give up but I'm feeling like I have no options left…it only gets worse as time goes by. Any thoughts that may help me? I need to go to the doctor but I am so overworked I rarely find time or money to do so. Not sure where to turn for the proper help…

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Welcome @rnicoletti
Welcome to our group. I am sure you will find several suggestions from our group. Please remember that we are not doctors, but can relate what we have gone through, what we have done and most importantly, lend an ear.
I was diagnosed with fibromyalgia about 3 decades ago! It was very unusual for a doctor to be able to identify it back then. As you probably know, the only way to make a dx of fibro is by eliminating other things. And believe it or not, there are still docs out there who don't believe it really is an ailment!
Anyway, since I was dx a long time ago, I am sure the treatments have changed. However, I will share with your what I did since it worked for me.
1. I never go into the deep restorative sleep. I slept well, I THOUGHT, but in reality I didn't. I was ALWAYS tired! I went to sleep tired and I woke up tired. So, after years of resisting, I finally let the doc give me something to help. I took a VERY low dose of amitriptaline (spelling?). Although its use was for anxiety/depression, at a low dose of 10mg, which I took, its use was different. Taking this helped me get into that deep sleep without the effects of a sleeping pill.
2. I started to lose weight. Losing the weight helped to take the pressures off my body and therefore, some of the pain.
3. I started to move. I started to walk for exercise. I was so out of shape (because of the pain and being inactive) my hubby would have to literally push me up hills and drag me by the end of the walk. After a while, I was able to do it all myself! I then started to do it twice a day. Soon after, I started with the gym. I did all kinds a of exercises on all sorts of machines.
4. I went for aquatic PT. The warm water was very soothing.
5. I went to the chiropractor every other week. In between, I went for theraputic massage (not deep tissue, which inflames).
Even with all that, I still did have flare ups, but they weren't nearly as bad. Today, as long as no one presses on my trigger points, I am fine!
I do believe that after you read this, you will see why you are feeling the way you are. You deal with fibro for the rest of your life. It does not go away, it subsides. Being in pain 24/7 is chronic and can and probably will cause some depression and anxiety. Depression because of the inability to live your life the way you want and anxiety because you become afraid to do things because you don't think you will feel well enough. There are therapists who specialize in therapy for people who have chronic pain. It helps to talk to someone about what you are going through.
To sum up, living with fibro is a lifetime of life style changes. It won't go away totally, but you can manage it with the help of professionals who are experienced dealing with fibro.
I wish you all the luck in the world!
Ronnie (GRANDMAr)

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@rnicoletti

I have tried amitriptyline. No help. I tried supplements. Cbd .marijuana. nothing helps pain other than not doing physical activity. Rest. But sometimes I wake up feeling worse than before I slept. Limbs go numb . Twitching . Sometimes it's like I can feel all nerves in my bodyI'm a autobody man for trade 36 years old. 147 lbs my entire adulthood. Active. Dont even watch t.v. rarely.

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@rnicoletti Let me add my welcome to you here at the cyber table of Mayo Clinic Connect. It's not easy to post about our weaknesses, is it? I think if you read the response by @grandmar you will find some very useful information. Like the others, I have been diagnosed with fibromyalgia, and some days are so difficult. But you have to think of yourself, not the disease, as the victor. And do what is needed to accomplish that. Please let us know how you are doing, and what your plans are to be a victor. Will you do that?
Ginger

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Hi All!
Thought this article about foods to eat and avoid might be of interest.

https://www.everydayhealth.com/fibromyalgia/diet/fibromyalgia-what-eat-what-avoid/

Have a happy and safe 4th of July!
Ronnie (GRANDMAr)

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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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@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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@jmjlove my guess is that these autoimmune diseases very unlikely wear themselves out before they wear us out ☺ That's just my non medical background talking and my polymyalgia rheumatica lurking in the background waiting for chance to get back in the game and me trying to do all in my power to keep it suppressed. Research and learning all that you can is your best friend. Here's an interesting starting point…

Autoimmune Life Blog — https://www.benaroyaresearch.org/blog?disease=All

Liked by grandmaR, jmjlove

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