Anyone else with Fibromyalgia?

kookla33 · November 2009

I know it's hard to think clearly when you are suffering, but many times the answer is only a few steps away.

I strongly encourage anyone with fibromyalgia to get a sleep study done, and get vitamin D levels tested. If you want to know more, just google sleep apnea and fibromyalgia, and Vitamin D and fibromyalgia.

Hang in there and don't give up! your body is crying out for something it needs!

lotusfromthemud · December 2009

I know it's hard to think clearly when you are suffering, but many times the answer is only a few steps away.

I strongly encourage anyone with fibromyalgia to get a sleep study done, and get vitamin D levels tested. If you want to know more, just google sleep apnea and fibromyalgia, and Vitamin D and fibromyalgia.

Hang in there and don't give up! your body is crying out for something it needs!

Um, so I've had a sleep study, and no apnea.

Also, I supplement vitamin D (and many other things) and my levels are fine.

I understand that this probably isn't what you intended, but if there's a "magic bullet" idea out there, most of us have tried it. There is very little that is more frustrating than hearing "if you only tried x, y or z" you'd be fine.

I apologize if this sounds harsh, but you hit on a pet peeve of mine.

kookla33 · December 2009

This is sad to me that you are choosing to bedefensive. The studies are out there for a reason, and they don't lie. You are reading into what I was saying, and unfortunately, you didn't see that I am not judging anyone but trying to help. Not everyone who has fibromyagia has vitamin D deficiencies or sleep apnea, but a heck of a lot of people do. I was offering it as a suggestion to rule out.

Try to give people the benefit of the doubt before you judge them.

All the best to you.

BrendaLee · December 2009

This is sad to me that you are choosing to bedefensive. The studies are out there for a reason, and they don't lie. You are reading into what I was saying, and unfortunately, you didn't see that I am not judging anyone but trying to help. Not everyone who has fibromyagia has vitamin D deficiencies or sleep apnea, but a heck of a lot of people do. I was offering it as a suggestion to rule out.

Try to give people the benefit of the doubt before you judge them.

All the best to you.

I get where she's coming from. You have to live with fibromyalgia to know what the "well it's as simple as this" or "you just need to do that" comments do to you. You have to understand, fibro is just beginning to be taken seriously as the life-alterting, sometimes life-robbing disease that it is, and is finally getting some recognition. No one knows definitively what causes fibromyaliga, but a lot of people with the disease have tried many, many, many "quick and simple" fixes only to be disappointed, and eventually devastated when you realize that very little offers much in the way of relief let alone a cure-all. I'm defensive too, because this illness isn't simple. I would have to say that someone who had a vitamin D deficiency or sleep apnea who cured those things and cured their "fibro" didn't have fibro to begin with. Newer evidence is pointing toward it being, at least in part, a neurological disorder. It's pretty serious stuff.

If no one with fibro was ever defensive about the feedback they'd received, it may still be seen as an "it's all in your head" thing. I wish it were something a little talk therapy could cure.

Thanks for trying to offer some helpful suggestions though.

BrendaLee · December 2009

AAAAAAiiiiiigh!

Anyone have any advice (medical or supplement wise) for not catching EVERYTHING? I'm so frustrated, because since mid-August, I have had two colds and what now appears to be the flu. And, I'm just hoping it isn't "the" flu going around. I feel like lately I've been sick more often than I've been well. My workouts are suffering, and so is my outlook on life. . .I'm bordering on depressed.

I just seem to have no resistance to fight anything I'm exposed to. I would say that's my number one symptom right now.

Any ideas or sympathy accepted.

I'm sitting here hacking up a lung as I type. I got both of my flu shots, so hopefully I'll be flu-free this year. These chest colds are murder though...they take so much out of you! I miss working out too. I got in a good TEN minute workout last night before I felt like I was dying.

I do the basics to try to avoid getting sick...vitamins, fruit smoothies, exercise, fresh air. Are you feeling better?

BrendaLee · December 2009

Speaking of depression, I wonder if SAD (seasonal affective disorder) or winter depression is more common/ more severe among those with fibromyaliga? The change of season and lack of daylight/ sunlight takes a huge toll on me every year.

feistygirl09 · December 2009

I also struggle w severe clinical depression. Holidays are hard. Dealing w high stress situations are hard & trigger my symptoms. My doc says you cant tell what came first , the fibro or the depression but they are all part of the same 'family'. It is not unusual for a person to carry more than one diagnosis from the same family of disease because symptoms overlap. I am fully medicated and still have to 'manage' my symptoms. It is something you learn to live with & deal with & struggle with. Early on I would struggle with bad days thinking... why cant I control this??!! It's unfortunate that people dont understand if they dont deal with it directly. It is hard to explain to someone if they dont 'get it'. It's not so much defensiveness as survival. There is no cure, there is no test, it's different for everyone. You learn to cope, but it is not something people see if you dont share it with them. And even when you do, the reactions you get are not worth the sharing.

Trying to keep positive thinking in any form is a challenge. But we hang tough!!!:ohwell:

lotusfromthemud · December 2009

This is sad to me that you are choosing to bedefensive. The studies are out there for a reason, and they don't lie. You are reading into what I was saying, and unfortunately, you didn't see that I am not judging anyone but trying to help. Not everyone who has fibromyagia has vitamin D deficiencies or sleep apnea, but a heck of a lot of people do. I was offering it as a suggestion to rule out.

Try to give people the benefit of the doubt before you judge them.

All the best to you.

Please understand that I truly wasn't trying to be harsh. Truly. Please don't say that I'm "sad" to you, or "choosing to be defensive". This is a condition that practically forces people who have it to be defensive at every turn. Please, please understand that.

You are one of several people who has chimed in with this thread, offering a curing suggestion. I truly apologize that you were the first one I responded to. Fibro is a medical condition that is constantly questioned, and there are lots of people who say things along the lines of "if you would only. . .you would be fine." Understand, that as someone who deals with this every single day, after a while that can sound an awful lot like "your condition is your fault." I don't question your motives. I'm not accusing you of anything, I'm just trying to be blunt about our/my position here.

The point I was trying respectfully (and these threads don't communicate either emotion or intent very well) make is that something that might work for some people may not be the solution for everyone, and I feel like you were presenting it as such.

It was certainly NOT my intent to attack you personally, and I'm sorry if you feel that I did.

lotusfromthemud · December 2009

AAAAAAiiiiiigh!

Anyone have any advice (medical or supplement wise) for not catching EVERYTHING? I'm so frustrated, because since mid-August, I have had two colds and what now appears to be the flu. And, I'm just hoping it isn't "the" flu going around. I feel like lately I've been sick more often than I've been well. My workouts are suffering, and so is my outlook on life. . .I'm bordering on depressed.

I just seem to have no resistance to fight anything I'm exposed to. I would say that's my number one symptom right now.

Any ideas or sympathy accepted.

I'm sitting here hacking up a lung as I type. I got both of my flu shots, so hopefully I'll be flu-free this year. These chest colds are murder though...they take so much out of you! I miss working out too. I got in a good TEN minute workout last night before I felt like I was dying.

I do the basics to try to avoid getting sick...vitamins, fruit smoothies, exercise, fresh air. Are you feeling better?

Yes, I'm back to my normal (which by contrast feels like bouncing off the wall with energy). I eliminated a few things from my diet (I have food intolerances that don't bother me unless I'm already sick) and just let myself sleep extra, and I started to feel better. But yeah, "hacking up a lung" sounds familiar. I was coughing so hard that I threw out a muscle in my back, and was on the verge of buying some adult diapers. I couldn't go to the gym to workout, and had to do it at home because I would cough like a crazy person, even when I started to feel better.

Yep, I have the SAD, too. I think it might be because our sleep cycles are so delicate? I'm doing pretty good now, but when the time changes, I feel kind of jet lagged for the first few weeks. I try to get out in the sun as much as possible, and this year, I've adjusted my workout schedule so that I'm doing my exercise in the daylight. (once the sun goes down, my body says "hibernate!" so I'm trying to work around that rather than try to work through it.):flowerforyou:

BrendaLee · January 2010

I wish I could be one of those people who loses their appetite when they're in pain.

Anyone else with Fibromyalgia?

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