Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
I have been reading the boards for a while. But wanted to say hi. You all seem like a big family and very caring.
My story is I believe I have CFS and have had it about 10 years. Every doctor here doesnt seem to believe in it and the doctor who wrote a book about CFS and fibro and is awesome is 2 hours away and Im not driving at this time.
Around three years ago everything just seemed to be getting worse with the pain, fatigue and just pure exhaustion. I asked my doctor at that time to run blood work to rule out any autoimmune diseases but she refused, she also would not accept the fact that I believed I had fibro and possible CFS. She kept telling me to just do more and the tiredness will go away. Well we all know that doing too much leaves me in bed for days after. I have fought with my doctor for those three years; well finally she caved and they finally found two types of blood work with inflammation and she finally sent me to an internal medicine doctor in August of last year. The internal medicine doctor confirmed I do have fibro and said I had all 18 markers. The sad thing is they dont know what the inflammation is and he told me it could be cancer. In the letter to my doctor he wrote underlying malignancy. I am set to see a new internal medicine doctor just dont know when yet.
I am happy I have finally been diagnosed and know why Im in pain and so tired but am sad too. My family doesnt want to believe it or seem to try and understand it. My mom even mocks me on really bad days like yesterday. I was so exhausted but had to get groceries. I thought I was going to pass out from the exhaustion.
I also suffer from severe depression and anxiety along with a few other things.
How do you guys cope with fibro? How do you figure out how much to do or not do?
I dont know I feel so lost and alone in this.
Thank you for reading!
My story is I believe I have CFS and have had it about 10 years. Every doctor here doesnt seem to believe in it and the doctor who wrote a book about CFS and fibro and is awesome is 2 hours away and Im not driving at this time.
Around three years ago everything just seemed to be getting worse with the pain, fatigue and just pure exhaustion. I asked my doctor at that time to run blood work to rule out any autoimmune diseases but she refused, she also would not accept the fact that I believed I had fibro and possible CFS. She kept telling me to just do more and the tiredness will go away. Well we all know that doing too much leaves me in bed for days after. I have fought with my doctor for those three years; well finally she caved and they finally found two types of blood work with inflammation and she finally sent me to an internal medicine doctor in August of last year. The internal medicine doctor confirmed I do have fibro and said I had all 18 markers. The sad thing is they dont know what the inflammation is and he told me it could be cancer. In the letter to my doctor he wrote underlying malignancy. I am set to see a new internal medicine doctor just dont know when yet.
I am happy I have finally been diagnosed and know why Im in pain and so tired but am sad too. My family doesnt want to believe it or seem to try and understand it. My mom even mocks me on really bad days like yesterday. I was so exhausted but had to get groceries. I thought I was going to pass out from the exhaustion.
I also suffer from severe depression and anxiety along with a few other things.
How do you guys cope with fibro? How do you figure out how much to do or not do?
I dont know I feel so lost and alone in this.
Thank you for reading!
It is good that you finally got a diagnosis. I hope you don't have an underlying malignancy. It sounds like you have been through the mill with your doctors. Maybe now you will get some help.
I, too, have depression and anxiety along with the fibro. I am always tired and wonder about CFS too, but I have not been diagnosed with that. This whole thing is just a hard road.
Keep reading here. There is so much information each day that is posted. We all have so much in common. Take care of yourself.
Coping is hard. Like treatments, it's highly individual. Some get good results with meds and gentle exercise, some don't, etc. I personally think there's subtypes of Fibro waiting to be classified, sinc esome of us get relief from eliminating stuff from diet but some don't, and some react well to one kind of med but others don't, and so on. (Or I'm full of it, who knows?)
It's a tough dx, but I got mine 18 years ago and haven't stopped living or hoping yet. Journaling about pain and activity levels and associations can be useful for you and the doc, and you can ask the doc about things like diet, vitamin deficiencies, what kind of exercises (I was a yoga nut, and a lot of us like aquatherapy too), and so on.
Keep lurking and reading, and feel free to post rants, raves, questions, concerns, etc.:-)
Welcome,
Leo
LeoXe thank you for the suggestion on the book. l will order it at the end of the month. Coping is hard for sure. Good idea on the journaling. I used to journal but then stopped. I know what you mean about the meds. I`m on Gabapentin for anxiety and the internal medicine doctor wanted my pdoc to switch me to Lyrica, but pdoc won`t because of my anxiety levels. I have done a bit of research and the book I have can get so detailed with different meds or vitamins I get confused. I don`t know but I heard Magnesium can help so I have bought some to start trying.
I know what your going though, you are not alone. It took me over a year after I was diagnosis to find the right treatment that helped.
I was very depressed, having server anxiety panic attacks, in server pain, stomach problems, IBS, couldn't sleep and couldn't cope at all. My whole life caved in, I thought I was having a nerves break down. My husband held me together and took me to another doctor and started a new treatment. Not until he put me on Cymbalta did I see any light at the end of the dunnel. It took awhile, put it did help.
It took me a year to figure out what I can handle and what I can't. You have to really limit yourself. The most important thing that I have dicover is you need your Sleep............ When I wasn't sleeping well, pain, anxiety, exhaustion got wrose and wrose. I do have to take a Rx sleeping pill.
Its hard to say what works because everyone is different. One thing we all have in common is PAIN & EXHAUSTION.
Keep reading all you can about Fibro, educate yourself, get the book Fibro for Dummies. It helps when you understand it. It will get better.
Just remember you are not alone.................
With fibro, keep reading all you can about it. A good website is myalgia.com or google CCFIDS self-help course.
The aim is to get your pain levels under some control and then tailoring your life around what doesn't exacerbate the pain to unrelievable levels. Trying to maintain some form of fitness is important as soon as possible.
As for drugs, one has to try quite a few to find a combination of drugs that work, usually something(s) for sleep, and something for pain (usually more than one drug). Smaller doses can be tolerated better and you have to take them for a couple of weeks before deciding that the side effects are intolerable (but good luck with that one).
It's hard for those without fibro (and this includes some family members) to really understand what it's like for you. Sometimes you just have to pull back and take care of your emotional needs without getting extra flak from others. Take care!
I had to go out today and it was walking up hill and I swore I was gonna pass out from the pain. Needless to say now I'm purely exhausted and that is still after having a nap.