This post is inspired by a new friend that I have recently made in California. I met a woman on Facebook who has CFS and who also believes she has Interstitial Cystitis. She has been sick for a long time and she found me through my website and through my Facebook page. We started sending messages to each other and then began talking on the phone and I have now made a new friend across the country!
It is always amazing to me how there is such a bond between those of us with chronic illness. We speak the same language, we understand each other like no one else can, and we can joke with each other about what we can and can’t do and only we get it, you know? It’s like my new friend and I instantly clicked because we speak the same language, we walk the same walk every day, we live the same life. We don’t have to pretend to feel well when we don’t; if we are too sick to call each other and we go a while without talking, we understand and we don’t get offended or upset. WE GET IT.
She discovered that through talking to me she should ask her doctor to try Elmiron, he put her on the medication and her IC symptoms have been doing better. As patients, we can help each other with our experiences. Each of us may have different severity levels and different things may work for each of us, but this is how we often find our treatments – through talking to others we have bonded with.
My new friend said it best….we were talking on the phone and she was supposed to be at a cookout. When she was late getting to the cookout and gave the explanation why she told her neighbor that she was “talking to one of her own kind.” Now that is how I would have explained it!
I keep wondering if these two are medically linked. The symptom sets are so close together. However, having both I know they are different. I guess my question to others out there is did you get FM or CFS first? In my case I’ve probably had FM for decades (since I was in my 20s) but only got diagnosed last month. But I’ve only had CFS since last year.
Damien Woody says
That it is good to exchange ideas and make friends for a common cause. without wanting to social networks have made people that we are suffering from chronic diseases can communicate and explain our experiences. A while ago Findrxonline mentioned that only in United States networks social had managed to grab the most attention of patients with illnesses such as fibromyalgia, back pain, chronic pain, Parkinson’s and this had succeeded in creating communities and friends of mutual aid in his illness. We hope that this is a breakthrough because in this way we can improve our way of living.
Today, I am very angry at the new doctor I have…I moved from my home to another state almost 2 years ago. I had great care for my FM before, but in this state I am not so lucky. I can’t even find a doctor that works with those that have FM…
Anyways, I had to go to the Spinal Clinic because of my back issues and have an evaluation. The doctor came in and within the first minute he stopped introduced himself and looked at me and said. Normally, any good doctor would see Fibromyalgia written in your files and not work with you. But I can tell that you don’t have FM. I said how is that? He said because FM is a made up syndrome that doesn’t exist. People with this label are mentally ill. You don’t look mentally ill or depressed. I can tell that you are a normal person. So, if I were you I would never tell anyone again that you have FM and I would get it off your records! So, I said then why do I have the presenting symptons…I’ve been treated for 18 years now. He said it was a misdiagnois. I had back pain and Celiac’s and Bladder Issues and that’s it.
WOW! I walked out sad and then angry! Thank you for letting me vent. Karen in Indiana
Sandy Robinson says
Karen, Sorry you had that experience. Doctors like that should lose their license, in my opinion. They are absolutely worthless and shouldn’t be allowed near patients whatsoever. Keep fighting until you find a good doctor who will listen to you!
I am too weak, fatigued and ill to develop any friendship that would entail speaking on the telephone. You are both very fortunate to be able to do so.