Wendy, it is my opinion that not everyone with a fibro diagnosis has the same disease process, so it is no surprise that people have varying symptoms and pain levels. I think you will find a lot of variety among our members. I am sorry your pain is more severe. We have many here who are like you.
hi again wendy. i agree with what dancer said. i know many people who have some aches and pains 'decide' they have fibromayalgia , even giving that diagnosis to themselves. I have a severe case of cfids ( cfs/me) for 28ish years and was bedridden for the first 10. Once a friend came to visit and was talking with my husband, She told him that 'she has what i have' . Well my sweet husband nearly bit her head off. She drives, works part time, works on her photography and also edits part time for a newspaper. and she gets bored if she is stuck in the house cause of bad weather.. That much functioning to how sick and disabled i was then and still am would be lovely indeed. I am just telling you this as that all things are relative and people have different degrees of illness., And again some give themselves the diagnosis. Another friend told me that she feels so tired so she must have it. I also explained to her this fatigue is debilitating, not one that one feels after a long day at work or not having had enough sleep the night before. I also told her that chronic fatigue is not the same as chronic fatigue syndrome which is a complex multi-symptomed illness. Additionally 'chronic fatigue'( and not the syndrome) could be due to other factors like iron deficiency anemia which is very treatable. So please do not let those others get you down cause it seems that they dont know what they dont know .And for sure you are NOT crazy..huggggggs
When I was diagnosed seven years ago, I couldn’t completely relate as I didn’t have the severe pain I was reading about and other issues. I quickly quit learning about fibro and assumed my doctors were incorrect. About a year and a half ago, during a very stressful time, I started developing some major pain and what I now know as fibro fog. My other symptoms, fatigue, nausea, etc had also gotten worse. After a year of all this 24/7, I went to my doctor, then to a couple specialists who diagnosed me with fibro. Once I started learning about it again, I was shocked. I could relate a 100% to most of the symptoms! Actually things stared making sense, finally, after all these years. I do believe it progresses with age. How fast it progresses I think is different for everybody as well as symptoms and severity.
I am sorry you feel out of place. I would continue to do what is right for you. Don’t feel odd! I didn’t get it either until I woke up one morning and literally couldn’t walk to the bathroom. I have always been against pain pills, had two major surgeries with very little, and now I live on them and swear I would die without them!
I am going to try and answer you last question first. Yes, it's possible that your friends are only starting with fibro, so haven't experienced what you are experiencing yet. I do think fibro is progressive, absolutely. I can't think of anyone whom I know who has it and is doing just fine, has gotten better, etc.
My case is like yours, severe pain. Even with meds, I still am pretty much in a wheelchair due to back pain. I just had a procedure done to temporarily stop that but the medical issue is still there and will return with a vengeance. I am currently suffering from fewer fibro pains but they aren't gone.
I definitely would not stop your meds just because your friends tell you to. You have ONE doctor and that's the person who is best suited to telling you what is best for you, providing they are up to date with fibro. I know that we all love to play doctor, Ben Casey, whatever, but you have one person who is medically trained to help you, and your nurse friends are not the one. If they can survive with just homeopathic means of surviving through fibro, hurrah for them. I don't know of (m)any people who can do that long-term, sorry to say.
I just want to tell you how sorry I am that you're experiencing this cr@ppy illness. We all know how much it hurts and how other medical problems go along with it. You are not alone with that. Your symptoms are not atypical. You are the norm and they are the atypical ones. It does seem that one can have a bit of fibro for a while and function with it to some extent but once you do that ONE thing to go over the fibro "limit" - TILT! You now own it and it owns you. All of its aches and pains and associated illnesses.
You are sooooooooo NOT crazy. I agree with what all the others are saying; that fibro is progressive and that there is a huge variety of symptoms and many varying levels of intensities of those symptoms. One thing I first noticed when I started visiting on these boards was just that; the variety of what others were experiencing with fibro. That variety if symptoms astounded me. Yet we are all linked with this disease, even though we may manifest it differently and that is okay. I strongly agree with Petunia, to work with your doctor and do your own research, what might work for one might not work for another. Maybe your friends would like to visit this site and see the many faces of fibro. They would be welcome. Who knows maybe it would enlighten them as it has me. I truly hope your pain subsides and that you feel better. Big hugs.
I wonder this myself. How can I be in so much pain but not dying!! Am I crazy??
I don't know much about this really so can only speak from my point of view, I think that some people are lucky enough to be diagnosed early and quickly, these people may only have slight pain or pain that really does come and go throughout the day. I also think that some people may have this dx but actually have something else.
I absolutely believe fibro is progressive. Mine has become worse with age and more stress.
I agree with this too. My pain, cognitive function, etc become a lot worse when I'm stressed, tired, time of the month....
Your friends are lucky and it doesn't sound like they have ever experienced this kind of pain and I hope they never do.
Also with alternative therapies come other difficulties depending on how your fibro is. I personally could not bare someone massaging me when I'm having sensitive touch days, I would be tearing my hair out! Especially if aromatherapy oils were used *aggggghhhhh*