Aa
Venting
Hello all,
Just have to vent here for a moment. I am fairly new on this site and I do want to thank everyone for all their support. I went to the Rhuematologist yesterday and it was mostly a waste of time. I got upset after I left and I will say, I just wanted to say, to hell with all doctors, that's it, I am done. The good side of it is, he is sending me for more blood work and maybe I will get some answers from that, if not, at least I will know some of the things I don't have. However, my three main symptoms, severe fatigue, severe bloating and constipation, he just blew off. I told him that my primary diagnosed me with CFS and he said, well, they are still wondering if that is even a condition. Many people have fatigue, many reasons for it, blah, blah, blah. I tried to tell him HOW bad it was for me but he brushed me off, also with the bloating....asked me how old I was (51), patted me on the arm, and said "there, dear, it is just menopause". I have been going through 3 years of battling doctors who will not listen to me when I tell them I know my own body, I know what being tired is and what normal bloating is. Anyway, I could go on and on, just frustrated and knew that all of you will understand. I do have a caring gastro doctor who is sending me for a CT scan of my abdomen and pelvic area because of the bloating and constipation. Hope you don't mind that I vented!
Just have to vent here for a moment. I am fairly new on this site and I do want to thank everyone for all their support. I went to the Rhuematologist yesterday and it was mostly a waste of time. I got upset after I left and I will say, I just wanted to say, to hell with all doctors, that's it, I am done. The good side of it is, he is sending me for more blood work and maybe I will get some answers from that, if not, at least I will know some of the things I don't have. However, my three main symptoms, severe fatigue, severe bloating and constipation, he just blew off. I told him that my primary diagnosed me with CFS and he said, well, they are still wondering if that is even a condition. Many people have fatigue, many reasons for it, blah, blah, blah. I tried to tell him HOW bad it was for me but he brushed me off, also with the bloating....asked me how old I was (51), patted me on the arm, and said "there, dear, it is just menopause". I have been going through 3 years of battling doctors who will not listen to me when I tell them I know my own body, I know what being tired is and what normal bloating is. Anyway, I could go on and on, just frustrated and knew that all of you will understand. I do have a caring gastro doctor who is sending me for a CT scan of my abdomen and pelvic area because of the bloating and constipation. Hope you don't mind that I vented!
deedee332 and VaBreeze - thank you for your input and I totally agree with both of you and I am sorry that you all have gone through crappy doctors too. I have had my share the last 3 years, but I won't give up. Thank you!
On the previous post about the "Marketing Ploy" of FMS, there was a physician who added his comments. He stated that a dx of FMS is not as common as everyone believes it to be and that he knows it exists. (Wish this person lived close to me).
From what I have read recently about these and similar illnesses, I feel that there is a connection. Either a similar strain of virus or pathogen, that kicks them all off, and they manifest as different symptoms/diseases/illnesses (depending upon ones biological design). Just a theory. We are left to wonder that should a viable treatment be out there, and it is used for everyone, treatment and 'curing' would make a huge impact on both the medical and pharmaceutical companies pockets. This makes it easy to dismiss our symptoms as 'waste basket'...sending us to search and spend more $ on their services or products. After the findings of Dr. Garth Nicholson, I believe that they absolutely know what is causing these dis-eases.
I know how frustrated you feel ivfrogs. I'm so sorry you had this experience. That rheumy was incorrect and behind the times.
From what I have read recently about these and similar illnesses, I feel that there is a connection. Either a similar strain of virus or pathogen, that kicks them all off, and they manifest as different symptoms/diseases/illnesses (depending upon ones biological design). Just a theory. We are left to wonder that should a viable treatment be out there, and it is used for everyone, treatment and 'curing' would make a huge impact on both the medical and pharmaceutical companies pockets. This makes it easy to dismiss our symptoms as 'waste basket'...sending us to search and spend more $ on their services or products. After the findings of Dr. Garth Nicholson, I believe that they absolutely know what is causing these dis-eases.
I know how frustrated you feel ivfrogs. I'm so sorry you had this experience. That rheumy was incorrect and behind the times.
Well, we do have a "REAL" illness and if that wasn't the case then why are so many of us on this particuliar website. Just recently I was so frustrated as you are because of 2 of my doctors, the rheumy and my pcp. I have since kicked the rheumy to the curb and made it a point to let Dr. Hoffman the rheumatologist know how I felt about his non caring attitude. I also told him where to go although he was very familiar with fibromyalgia he didn't acknowledge my other problems and that created a problem for me. Just hang in there and continue to search for that right doctor. As someone else has mentioned as well, I make sure that my pcp does research on my behalf. I also have constipation issues and find that eating at least one salad a day with romaine lettuce helps with that. Good Luck to you, things will get better.
CGROSS,
I believe Fibro and CFS are definitely real. I am reading the book "From Fatigued to Fabulous" and all I can say is: I felt this book was written directly to me. You should read it. I am not far into it yet, but will definitely implement the doctor's ideas.
PlateletGal,
I have gone on the Co-Cure site and found a doctor in my area. I called and they haven't called back yet, but I will keep trying. Thank you for reminding me! and yes, I plan to telling the Rhuematologist when I go back. I am not great at speaking up with doctors. Something I have to work on.
Wonko,
I am sorry that you have Lyme disease too. I am sure this is all very hard on you and I can relate. I think you have a great sense of humor. Love the greeting card idea?? You should submit it to one of the card companies, LOL
and Phtartist,
I watched the video. Thank you for sharing. I sent it to my sister - she has Fibro, developed after a car accident years ago and I have seen her frustration in dealing with people and doctors. I will also check out the website.
Thank you all for your suggestions and comments.
I believe Fibro and CFS are definitely real. I am reading the book "From Fatigued to Fabulous" and all I can say is: I felt this book was written directly to me. You should read it. I am not far into it yet, but will definitely implement the doctor's ideas.
PlateletGal,
I have gone on the Co-Cure site and found a doctor in my area. I called and they haven't called back yet, but I will keep trying. Thank you for reminding me! and yes, I plan to telling the Rhuematologist when I go back. I am not great at speaking up with doctors. Something I have to work on.
Wonko,
I am sorry that you have Lyme disease too. I am sure this is all very hard on you and I can relate. I think you have a great sense of humor. Love the greeting card idea?? You should submit it to one of the card companies, LOL
and Phtartist,
I watched the video. Thank you for sharing. I sent it to my sister - she has Fibro, developed after a car accident years ago and I have seen her frustration in dealing with people and doctors. I will also check out the website.
Thank you all for your suggestions and comments.
Here is a recent film from "Today Family" where Fibromyalgia and the National Fibromyalgia Assoc are the focus. http://www.youtube.com/watch?v=QFuX49RyDeU
(highlight, right click ,copy and then paste to your browser)
It shows what is being done in Washington DC. about opening up people's awareness to Fibromyalgia and CFS. It profiles the illnesses symptoms from physical to social difficulties.
OH IT IS a very real illness, those that are skeptics should watch this clip. I suffer from a severe case and have found a FM specialist team here in NJ that are incredible.
www.drking.org will give you some info into their work.
(highlight, right click ,copy and then paste to your browser)
It shows what is being done in Washington DC. about opening up people's awareness to Fibromyalgia and CFS. It profiles the illnesses symptoms from physical to social difficulties.
OH IT IS a very real illness, those that are skeptics should watch this clip. I suffer from a severe case and have found a FM specialist team here in NJ that are incredible.
www.drking.org will give you some info into their work.
I am sure that no one minds your vent.
I'm a Lyme patient, and I deal with a lot of discomforting symptoms.
In my ~1.5 years undiagnosed, I too was upset and confused as some doctors would suggest fibromyalgia to be at least a factor, if not potentially the root, of my problems, while other doctors told me that it (fibro) "didn't exist." I was in their office, with life-disrupting symptoms, yet they were acting like I was a unicorn or some other make-believe.
In my reading about fibro and chronic Lyme and related conditions, I often come across the statement from skeptical doctors that up to around 10% of the general public suffer from "vague" symptoms such as fatigue, cognitive problems, and pain. It is disheartening to think that there are doctors who would reduce our situations to simply be the normal and natural state of 1 out of 10 people. If there were any truth to that, I feel like it would be a common subject in daily life. The greeting card aisle would have a section for "Sorry you're in that 10%," and people from different cultures and religions would all pray that they and their families would escape the statistic.
I agree with the above, if your doctors are not helping, keep looking for answers with new ones.
I'm a Lyme patient, and I deal with a lot of discomforting symptoms.
In my ~1.5 years undiagnosed, I too was upset and confused as some doctors would suggest fibromyalgia to be at least a factor, if not potentially the root, of my problems, while other doctors told me that it (fibro) "didn't exist." I was in their office, with life-disrupting symptoms, yet they were acting like I was a unicorn or some other make-believe.
In my reading about fibro and chronic Lyme and related conditions, I often come across the statement from skeptical doctors that up to around 10% of the general public suffer from "vague" symptoms such as fatigue, cognitive problems, and pain. It is disheartening to think that there are doctors who would reduce our situations to simply be the normal and natural state of 1 out of 10 people. If there were any truth to that, I feel like it would be a common subject in daily life. The greeting card aisle would have a section for "Sorry you're in that 10%," and people from different cultures and religions would all pray that they and their families would escape the statistic.
I agree with the above, if your doctors are not helping, keep looking for answers with new ones.
I would consider dumping your rhematologist and googling, "Co Cure's Good Doctor List".
Tell your rheumatologist that the CDC has done over 4,000 research studies on Chronic Fatigue Syndrome. Your doctor should visit their website for more information or contact the CFIDS Association of America.... they will educate him.
Chronic Fatigue Syndrome has been proven to be a very real illness. There are actually a couple of tests that can make the diagnosis and at least one of those tests should be available soon. CFS affects your nervous, immune and endocrine systems. Some of the research on CFS has been quite unexpected... for instance, we have clotting problems and diastolic cardiomyopathy... two things that aren't seen in any other illness.
As far as fibromyalgia, there is research out there.... but not enough funding as they've had for CFS. I don't think the CDC is researching fibromyalgia either, but I'm not sure why.
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I know there just doesn't seem to be much useful information out there about fibromyalgia. I live in a very small town & the website for our hospital has some dr on there saying it's completely curable with exercise. Ha I say! I've had this disease since it was still a syndrome & I can assure you it's NOT CURABLE! I'll be so glad when there's been enough research done so our DRs will know HOW to treat us.
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