I could have written more in the letter but I had teenage kids hanging over my shoulder anxious to get on the computer so I wrote what I could. Here is a copy of the letter. I hope they don't take his name out or delete this because people should know about him and more than likely the only ones who will read this are my friends and they don't live here!!! I left off his address!

Dear Dr. Elston,
I am writing this letter to you in regards to comments you made to me personally during my last office visit on June 23rd, 2010.

I had come to you due to a positive ANA test that my neurologist, Dr. Augustine Joseph, had ordered. You also ordered a variety of lab work and a whole body bone scan, all of which came back normal or negative. That was encouraging. However, after that, you made the comment “Why did your doctor send you to me” Hello, he sent me to you because I had a positive ANA test.

I was sitting in your office in horrible pain in my neck, shoulders and upper arms and was near tears. I asked you if it could be fibromyalgia (a legitimate question to ask a Rheumatologist) and your reply was “Fibromyalgia is a psychosomatic illness and I don’t believe in it”.  The previous year when I had visited your office and told you that I had Chronic Fatigue Syndrome, you made the same comment and that was the reason I did not return to your office. Unfortunately for me, you are the only doctor covered by my insurance so I was forced to see you again.

Below is a direct quote from the Mayo Clinic regarding Fibromyalgia:

Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.
Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.

Widespread pain and tender points
The pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:
 Back of the head
 Between shoulder blades
 Top of shoulders
 Front sides of neck
 Upper chest
 Outer elbows
 Upper hips
 Sides of hips
 Inner knees
Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea.
Co-existing conditions
Many people who have fibromyalgia also may have:
 Chronic fatigue syndrome
 Depression
 Endometriosis
 Headaches
 Irritable bowel syndrome (IBS)
 Lupus
 Osteoarthritis
 Post-traumatic stress disorder
 Restless legs syndrome
 Rheumatoid arthritis
Obviously, there is more on the Mayo Clinic website, but I do believe I have made my point.  There is no excuse for a doctor that specializes in the above co-existing conditions to tell me that Chronic Fatigue Syndrome and Fibromyalgia is “all in my head”.  You are a disgrace to doctors in general and to rheumatologists in particular.
I will be sending copies of this letter to the following organizations to which you belong.  They need to be made aware of the complete inconsideration, rudeness and cockiness of your attitude and treatment.
Respectfully submitted,

Colleen Richardson

Cc:  American College of Rheumatology
       American College of Physicians (Internal Medicine)

Hi Everyone,
My neuro appt. went pretty well. He is a kind and soulful doctor. You can tell he cares. So, he said that my peripheral neuropathy is caused by my active Epstein Barr Virus and that more than likely, most if not all, my symptoms are side effects of the virus because when it is active, it is nasty. It causes numerous things,including cancers, like leukemia and esophageal, so will keep on top of that, especially as I have GERD and a hiatel hernia already. So....he said I probably won't get worse with the PN because I don't have an underlying condition that causes it, like diabetes. BUT, he did say that he thought I had fibromyalgia (and when I told him about my rheumy and the things he said, he was shocked and said it was totally uncalled for).  Anyway, he put me on medication for the fibro and it also helps the PN so kill two isses with one pill. I am on Gabapentin for now, to see how it works. I have only been on it for 1 day so can't say yet.  Also, he does want to do a brain MRI to rule out Multiple Sclerosis. I am sure that will come out fine, but ok, just be sure LOL - you never know.  so that is Tuesday. I am extremely claustrophobic and so they are giving me Valium for the procedure, please pray it is enough Valium. I am still worried as I had that recent bone scan in which I went into panic attack mode. So....that is basically it.
Just alot of stress in my life right now.
My ex is fighting me over child support, my mom is decling rapidly and I have had to do most of the stuff with and about her, my son who is going off to college is being extremely difficult, so although I am really sad to see him go, I might kick his butt out the door in August, and Jerry's daughters are being a pain in the ***, well one in particular. So, with all this, just too much stress and I am finding it a very hard time to keep up on the forum and emails/notes, so if you don't hear from me, don't worry, I will be back!!

Hugs,
Colleen

Hello everyone,
I am typing this out and sending the same thing to all my good friends who care about me so some of you will know all this already, some of you will know some of it, I just can't type it out so many times, too much pain involved.  I hope you can understand and thank you!

Ok, here is info on my rheumatologist appt. which did not go well. However, there was some positive points so will say them first. My bone scan is great - he said I have great bones for my age, so am thrilled with that at least, especially since I hate milk and never have drank it.
My blood work all came back normal or negative. So, no lupus, no any other bad thing.

Then, he said that he had test results from my pulmonologist that showed something  - it has to do with my oxygen diffusion. It hangs in the low end - I have known this for awhile - so he says - I think your pulmonologist should check you for pulmonary hypertension (which I am about 99% sure I don't have) but will tell my pulmonologist. He was going to send a report to him.

Then, as for the peripheral neuropathy that I do have - I have no underlying cause for it that he can see from his testing, so he said I most likely have nerve damage from something and that my neurologist should do a nerve biopsy. He is sending a report to him too. I see the neuro next week, so will inquire about it.

In the meantime, I am sitting there in pain all along my neck and shoulders (on a scale of 1-10, it was at least a 10) and he is telling me that he can't help me. and when he was talking about the pulmonologist and neurologist, he made some rude comments - basically, like "why did they send you to me" and that is what he did a year ago when I went to him and I didn't like it then either. This time, I did say "well, the neurologist wanted to rule out underlying conditions first, with the blood work" HELLO

So, I say to him "could it be fibromyalgia?"  Just this morning I printed out all the symptoms and I have every single one listed and was prepared to show him. However, he answered my question like this "Fibromyalgia is not a real condition, it is psycosomatic (something like that)" meaning it is all in your head.  Well, now I am mad but at the time, it upset me and I didn't say anything - I just wanted to cry, I was in pain and he is telling me it is all in my head!!!  I plan on sending him a letter with verification from the Mayo Clinic on Fibro!!! Not that he will care, but I will feel better.

After leaving there, I went to see Mariana and had a good cry. Thank you Mariana for always being there for me. I am still in tears because I feel like I am just "out there" with all these symptoms and in so much pain.  I do see the neurologist next week so he might be able to explain the peripheral neuropathy better and I am trying to get into my primary as she believes in Fibro and she will help me I think. I don't know that I have it but a lot points to it and I don't know yet what the treatment is for the peripheral neuropathy.

So thank you to everyone for listening to me, offering me advice and really just caring. I can't tell you how much the support means to me!!! You all know who you are!! I love you!

I am contemplating taking some time off to do absolutely nothing but very basic, I might not even get on emails for awhile. I am just feeling very overwhelmed and upset and frankly, tired and in pain. But you know I won't be able to resist emails so will get on to check on everybody else when I can!

Hugs,
Colleen

It is easier for me to post an update here than individual ones, I hope that is ok!!
Ok, I went to the pulmonary doctor today and as usual, my test results are mixed. I would like to go just one time and have them say, all tests normal, see you in a year or never again!  Or this is the problem and this is how we fix it!

I can't explain all the technical things but I failed part of the pulmonary function tests which indicated my airways are constricted but the rest of the test was normal so she can't really explain why.  She gave me an inhaler for when I exercise, do it 15 minutes before and see if that helps.  I have to go back for a CT scan in May for the spot on my lung and she is having me do a home sleep study. She thinks I need to come in for a full study but I don't think so, so we are compromising on the home study and see the results.

She doesn't think I am tired from Chronic Fatigue Syndrome. She doesn't believe in it, so....I told her I have chronic anemia, a heart condition where my arteries constrict and now the airways are somewhat constricted, wouldn't all that make a person tired and short of breath, seems logical to me????

So, I am already scheduled for blood work next week because I have been having what they consider excessive bruising and my blood work from the hospital was low and I had a peripheral artery test at my cardio doctor, so will see what those results show, probably be mixed.

Colleen