Fibromyalgia

[binky11]

I'm going to do my best! Thx

[Borderline_crazy]

Hello everyone. Been watching this thread, not impressed. Seems like everyone is fighting. This is a real disease. I have a friend who is sick with a disease quite similar but yet it is different. My friends disease is a nerve disease and the pains and symptoms are very much the same. The drugs used are the same including lyrica and other medication for depression. I saw somebody mentioned earlier that when you say you have diabetes people understand because it's not invisible, not true. There is other complications that come with diabetes, one of them being neuropathy. This is another silent desease very similar to fibromyalgia in many ways, infact most of the items on that list for menopause are on this list as well. I do know that from knowing this person a long time the pains are real. This is something that my friend has had a long time before even knowing that it was diabetes causing it. The pain was so intense at times that my friend could not walk, sometimes get out of bed and even make it through some days. I could tell just by the change in her abilities, her moods and even reactions to things that went on in her life. Funny thing is she thought she was losing it, becoming a complainer, just not wanting to do anything. People treated her like she was just trying to be lazy. Her workplace decided that she was trying to get out of work. They gave her a really hard time. To this day she doesn't think they believe her. Funny how an invisible pain that is now recognized in the medical books is still being ignored by strangers, family and workplaces. Some doctors don't want to believe either because they do not get to see the real day to day issues that a person has to live with in a short visit. The problem with these diseases that are called silent diseases is there are so many symptoms the attack a person on different days and it makes it hard to describe all that has happened in one week since each day is different. Once you have seen a person you really know develop something like this you can tell they are not lying. Neuropathy is almost similar enough that some who think they have fybromyalgia might even have neuropathy instead or as well. This disease too is caused by more than just diabetes. Some of the causes are Lyme disease, car accident injury, lead poisoning, AIDS, and other immuno deficient complications. I am hoping that no one finds this a derailment but actually finds it help especially for new discoverers who are trying to find out what they have bothering them. Some people go for many years thinking it is in their head especially when others refuse to educate themselves either in the medical field or even as a family member or friend. It is too bad that many have no idea what is happening for far too long making a recovery or even some repair impossible. I do want to say this, never laugh at any one diagnosed with anything that is going to last more than six months. Even if it is not intended that way it is really hard for a person with daily pain to laugh back even on a good day. I hope this thread goes back to the topic because it is an interesting topic that many should really pay attention to because the rate of fybromyalgia and neuropathy in our generation is going to show up so much more now that you will have someone in your family if not you who will come up with one of these diseases soon and most even though it is medically documented will still suffer unknowingly for sometimes long periods of time as some have said they did. Hopefully this will change in short time so that families and workplaces will begin to treat people with care and help them get through the initial diagnoses so that a person could begin on a healing process rather than getting worse and becoming a disabilitycase. Most diseases like these two have the ability to reverse themselvesto some point with the right early diagnosis and treatment and that would include mood setting as well as less stress which are both known to be a factor in healing. It is good to see that a thread like this started so that people like you and me can educate ourselves in hopes of helping or at least understanding what real pain is so that we are not a part of their problem. Thank you for reading, I hope this helps someone.

[Yellow Sprinkles]

Actually, Fibromyalgia is a syndrome, not a disease.

[Yellow Sprinkles]

Don't get me wrong, I think your heart is in the right place... just another inaccuracy I'd like to point out from your post. I'm not intending to be a know-it-all, nor am I trying to control the thread - I just want to correct what I believe to be inaccuracies (based on my own research and discussions I've had with Specialists) since we can't know what someone is going to take from this.

Like I already said, Fibromyalgia is a syndrome, not a disease. It is not terminal (will not kill you) and it will not cause any permanent physical damage. What I mean by this is that if someone with FMS pushes themself too hard causing a flare-up of incredible pain, the only damage that is being done is the pain, nothing internal. Now I realize that this pain can hardly be considered as "only" when you're the one experiencing it, but nonetheless flareups do pass and no permanent damage is done.

The previous poster mentioned that sometimes it is too late for anything to be done - as far as I know, this is not true, as no permanent physical damage is done. That doesn't mean that emotional and mental health do not suffer after prolonged and untreated chronic pain, just that it's never too late to start treatment and hope for (at least) a minimal recovery.

[Borderline_crazy]

Yes you are right. I guess I was just being general. Again I am still learning like the rest and trying to put in my input. I did not mean damage as in physical damage nessesarily, I meant emotional damages and general health, and in both fibromyalgia and neuropathy allthough neuropathy does include deformities in later stages if not cared for early. My point being that these are two conditions that are silent where people suffer for possibly the rest of their lives and others do not understand this. I am not a Dr. by any means, just trying to give my perspective on this whole thing. I am sure none of us are going to be exact in what we say since we speak on experience only but the truth is both conditions are debilitating. Sorry if I am not writing this from a textbook but it is how I understand it since I have decided to look into these problems because they're becoming common and I have seen the suffering. Anyway I have made my point I am sure.

[binky11]

I don't know whats going on with my babysitting job, can't reach the mom, will wait only until 10:30 am, and if she is not here by then I will walk up (am only across the street). So with or without baby I should be there, worse case scenerio is I will be up to 40 mins late, lets hope not! If I don't get to bed I'll be too tired to go anywhere! Niters all

[Isobel]

Hi there,
I just read borderline crazy's message & I totally agree with you that people need to be more open minded about "new" syndromes/diseases.
Sure, there are people out there who don't want to work and fake their symptoms.
But for people who are truly suffering, their life is pure hell.
My brother has been suffering since 2001 with a multitude of painful areas, headaches & fatigue. He can barely concentrate on anything for more than a few minutes, as the pain is so bad.There are some days when he can't even walk. When he does try to participate in normal activities for one day, he suffers even more for several days after. Up to this point in his life he was a normal, happy, hardworking young man with his life in front of him. His symptoms started just after he turned 31, so it's not something that affects older people.
Don't get so hung up on whether this syndrome/disease does any physical damage, it's what it does to a person's quality of life.
My brother can no longer do the job he loves, is unable to socialise and is constantly fighting the temptation to give up on life. What has he got to look forward to apart from a barrage of diagnostic tests, doctors who can't help and people too ignorant to understand.
Going back to the remark about physical damage - if you are unable to move around or walk properly, the muscles will eventually deteriorate. So although this problem may not directly cause physical damage, it's symptoms can.
Not enough is yet know about these conditions for anyone to stand up and say categorically what damage is or isn't being done - either chemically or physically.
I'd love to hear from anyone who has found any treatments or coping mechanisms that have been working for them.

[clefairy47_]

I have smoked for 35 years and enjoy it. Went to Drs in Jan and he told me to quit, and rx'd champix. I didnt want to quit smoking.
The champix has taken away all the physical and emotional problems with quitting smoking. I have tried so many quit smoking drugs and things like hypnotism etc. I dont have moodiness. I have had about two cravings in 6 weeks. This drug is working even though I didnt want to quit. Because I am doing good my hubby is doing it too.
I did some research on the drug and do know about side affects, and hope that because we are aware of them we will moniter each other.
And lo and behold my hubbies insurance plan is covering most of the drug cost!!!!!!!!!!!!!!

[binky11]

I'm not sure what this has to do with fibromyalgia? Do you have fms and did it take the aches & pains away? Are you saying the champix helped your fms?


I was just recently on champix myself for a month. Although I am still smoking I won't downplay the fact that I do still have faith in the drug, as it sure did decrease my urge to smoke. However I also believe that the side effect of "nausea" had a huge impact on that lack of desire to smoke also. I certainly didn't feel any relief from my fms while on that medication.

I hope you are 100% successful in your attempt to quit! Good luck!!

[clefairy47_]

yes i have fms and have had severe reactions to some of the meds that i have been told to take for it. Including severe chronic swelling of every part of my body, so I am very wary of taking any drugs for anything.

[CoffeeCanuck]

All of you who suffer with Chronic fatique or fibromyalgia, I encourage you to go out and buy the latest Womans World magazine dated March 31st (it's still available). There is an article in there on a woman who suffers with it and tried D-Ribose with success.

~D

[binky11]

Thanks for that coffee!!!!

Also the next fibromyalgia meeting will be on Wednesday April 23rd. It will be held at the food court in the Capri Mall at 10 AM. Please pm for any further info.

[Yellow Sprinkles]

Just a reminder...

Fibromyalgia Meeting
April 23rd at 10am - Capri Mall Food Court

(That's this Wednesday )

[Triple 6]

I saw this on the side bar, thought I'd post it for you ladies (men too)

http://www.castanet.net/edition/news-st ... .htm#38848

[binky11]

Thanks for that trip!

Had a grrrreat meeting today. 6 of us now! Then out for lunch with yellow sprinkles!
Hope ya'll come out to meet her Friday night, she's a sweetie. Even though she liked James from Big Brother