How Doctors Should Treat Patients

General
1

Hi Everyone!

This may get kind of lengthy, please bear with me...My name is Brenda and I was only diagnosed on September 30, 2014. It has been a very long journey. I live in a relatively small community at the Florida-Georgia state line on the coast about 30 minutes north of Jacksonville, FL, Camden County GA is home to the Kings Bay Naval Sub Base. Then entire county has a population of about 50,000.

In 2000, I managed a convenient store on the I-95. I went to my PCP about my migraines and feeling like my hands were swollen and stiff in the mornings. He discovered I had high blood pressure and prescribed a beta blocker and HCTZ for the swollen feeling (which of course didn't help). In the next 8 years, I went through 6 PCP's primarily because they left the area for greener pastures. I had seen a neurologist for my migraines and was put on Topamax. I worked for Express Scripts in their local call center from 2005-2008 while I attended college and earned my AS in pharmacy technician (I graduated Summa Cum Laude). In 2008, I also became nationally certified and began working at a local independent pharmacy and no longer had insurance.

I began to see a PCP next door to the pharmacy because he gave us a little break in the cost. He is a Nurse Practitioner who is in business with a doctor (the doctor is the figure head only when a doctor is needed). I have not worked since December 2012 because of all my symptoms. My son decided that I should take care of his son and he went back to driving over the road. I now have insurance as of January 2014.

My PCP referred me back to my neuro since I had been having migraines 25-28 days a month and many neurological symptoms and started me back on Topamax. My neuro increased my Topamax, ordered a brain MRI, and referred me to an ophthalmologist. On follow-up, my neuro became very concerned when he read the radiologist's report and then he looked at the MRI. The radiologist was concerned about MS. Now, my neuro is scheduling tests to confirm or rule out MS. The next few months were a whirlwind of tests...EEG, EVP, Intracranial doppler, Carotid Ultrasound, Cervical and Thoracic MRI, blood work to the point that I thought I would be anemic, and finally a Lumbar Puncture. The only indication were the spots on the brain MRI. He referred me to an MS specialist for a second opinion. The specialist felt it was not MS and suggested yearly brain MRI for 5 years to compare.

My PCP ordered 2 more panels for RA and Lupus, he felt the neuro did not do comprehensive enough panels and he ordered another Sed rate. When follow-up came around, he said I have good news and maybe some better news...you don't have any autoimmune disease but you do have Fibromyalgia that is way out of control and we can get that under control. It will take a little work but we can get that pain level to a manageable level for you.

He had blindly started me on Cymbalta 30mg the month before and it had helped for a few days and then my body laughed at it...He increased it to 60mg. It has helped some already! I have not had daily migraines and it seems like my body pain is becoming a little more manageable. It has only been a week, but I am thankful that I have such a great team of doctors. They seem to really care about you as a whole person, not just the money that you bring into their office. This includes my GYN, my PCP and my GYN are aware of my health issues and they work together to try to get me patched up.

Doctors should always treat you with the utmost of respect, if they don't, do not hesitate to locate one that will....I have been fortunate, I only had to change my neuro once.

2

Hi Brenda and Welcome! I am so glad you have a great team of doctors. Very well said, your post hit the nail on the head. I am sorry you have had such a long journey but that is great the doctors were very thorough. I hope you will have many more good days to come!! Hugs!!

3

Hi Brenda, Welcome!! I am so glad you mentioned the fact that Doctors should treat all patients with utmost respect, not make one feel that we are wasting there time - I experienced this with my last visit & couldn't believe how ignorant some physicians are - especially about our illness!

Soft Hugs!!

4

Hi Brenda and welcome. I was only diagnosed recently as well and you find this is the most supportive group of folks you could ever wish for. I was very fortunate that I had wonderful doctor who wouldn't stop till he found out what was wrong with me. Its been a journey and so far the meds I am on help most of the time. Again welcome and Huggs to you.

Kelli (aka kaseygirl)

5

Hi,

I am glad the Cymbalta is helping you. I know everyone is different, but PLEASE be sure that if you are taking that, or anyone else, that you will not have to abruptly go off of it. I had a very difficult time when my insurance would no longer pay for Cymbalta and I had to go cold turkey off of it because I couldn't afford it on my own. The withdrawal process was terrible for me. Not wanting to be negative, just a word of caution when dealing with these very strong drugs.

Thanks, Eve

6

Thank you for the words of wisdom, Eve. Cymbalta is available in generic so insurance is more willing to cover it. I am also on Topamax and when I follow up with my neuro, I am going to request that we taper off of it. Having experience as a pharmacy tech, I am careful about what I take and so is my PCP. I react strange to many drugs, that is why he started me on such a low dose. But, I will keep your caution in mind should we have to change meds, I am losing a good deal of weight and that may be a factor in the coming months. Hugs to you.

7

Eureka,

I believe we all should be proactive in our healthcare. We go to the doctor because something is wrong and the doctor works for us....we pay for our insurance and our copays. A doctor should always treat a patient with respect and should always be willing to explain anything in layman's terms. Looking at my chart online, my PCP also noted depression disorder and lower back pain. I never mentioned either of those to him, but he is a very observant person. He also knows me. He also believes the entire body has to be treated as a whole, you can't treat the brain, the muscles, or the bones without treating the rest. I guess that makes the difference. I feel blessed to have the providers I have.

Gentle hugs to you!

8

Welcome Brenda!

Glad to hear that you have good dr.s I myself have just begone this journey although i believe that possibly have had it alot longer but was to busy raising kiddo being a single mom to notice.." awe that's what that was all about" ^ good one!... great people here. They make u feel very welcome, Thanks everyone!! Soft swirly hugs!!! Talk soon!

9

Hi Brenda,

Thanks for sharing your experience. I agree that doctors should treat you with the utmost of respect and glad that you have had a positive experience. I have had a similar experience, where my GP told me yesterday that she was making her appointments 30 minutes long as opposed to 15 as she wants the time time to hear her patients complaints and explore options. I so appreciate this. It is so important as we work through our symptoms that we feel like our concerns are being taken seriously. I only hope others get to have this kind of experience too. Thanks again for posting.

10

So, it was a Nurse Practitioner, who finally made the diagnosis if I am hearing you correctly.

Glad you are now getting the appropriate care!

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Like Kaseygirl said, it is great to have a PCP who sees you as a whole. Mine has been seeing me for two years and I think he is still trying to get a good handle on it. But we're both getting there. I have to remember to tell him all I can and describe things properly. The thing about him though, is that he is kind and he is interested in doing all he can and learning about me. This can be a rare experience.

I am super glad you are getting the help you need and are feeling better. Fibromyalgia is not fun, but it is better than some other diagnoses, that is for sure. (IMO)

12

Yes Mac, it was a Nurse Practitioner who finally made the diagnosis. I am so thankful for a knowledgeable and caring healthcare team!

13

Awesome you're now under good care! Fibro is rough, seriously, a total effort to keep under control, however, having doctors who not only "believe it's real", but know how to treat it relieves a huge amount of the underlying stress dealing with doctors who don't know it IS real. You're half-way there to managing the pain. Congrats!!

14

This is my first time writing on here. I myself was diagnosed in 2011 after the birth of my second child. I don't know how it goes for everyone but it has been such an unbearable pain for me. Lack of good solid sleep (since I have two children under 7yrs old) and stress from working contribute to the increased pain I suppose. The hardest part of it all for me is to accept the fact that this is my life. I am not able to do what I used to especially when it comes to being a mom, wife and taking care of home. I am sure acceptance will come with time. My husband has a very hard time, understanding i guess, how this really affects me. That I am not just being a cry baby over a little achy muscle pain. I WISH he could feel what I feel on a daily bases and still have to function a normal persons life. He tries but I know its hard to understand when someone looks absolutely fine. Also hard when you have to work because of tough times are. It is a struggle every morning to get moving. But I do it for my family, for my health and mind. I don;t want depression to get the best of me. But anyways, thank you for letting me ramble. It is so important to be able to talk with people who understand.

15

I SO know the husband issue! It is really hard for them to grasp the concept that you're in constant pain since you "look" fine and are still maintaining the responsibilities of being a Mom. What helped me was stepping into my husband's shoes for a moment.

Imagine loving someone who is constant & sometimes unbearable pain and there is NO WAY to help them. No possibility of taking the pain away and being forced to sit back and watch the person you love deeply sobbing in pain, watching them have trouble walking across a room, sleeping, etc. It's a helpless frustrating feeling for them and sometimes it's easier for them to pretend everything's normal and ignore the tears. They may not understand the pain, but they see it, trust that they DO see the tears, the struggle to walk or pick things up without dropping them. You just need to continue to do what you're doing and trust the process. Acceptance and understanding does come with time.

What really gave my husband a good kick in the ass was I printed out some information on what FMS is, what it's like to live with it, and it's symptoms. Then I made him read it in front of me so I knew he read it in its entirety.

An excellent web site for this type of info is Devin Starlyn's home site. (Her book - Fibromyalgia and Chronic Myofascial Pain: A Survival Manual 2nd Edition - is also excellent & I highly recommend getting it for yourself. You can look up symptoms, tips on diets, vitamins that help, tools on coping with the pain, getting support, etc.)

her website is: http://homepages.sover.net/~devstar/

And always remember: You have Fibromyalgia - it doesn't have you.

xxoo

16

mrudolph,

Bless your heart! I divorced in 2011 after my now ex-husband tried to kill me, but that is another tale for another time. Any time I had mentioned how bad my head hurt or how bad any other part of my body hurt, my ex-husband always tried to make it into a competition. Even now, my brother (a retired naval corpsman) and sister-in-law kept telling my son that FM is not a diagnosis. They are so ignorant.

I have not been able to work since December, 2012, and have been dependent on my son. He is only 27 and a single dad. He told his uncle and aunt that they were clueless and needed to educate themselves. My PCP told me to tell them to kiss my behind. One of my pharmacists, wants to help start the process to help me get Lyrica at no cost since I want to taper off Topamax when I see my neuro in December. She also told me that I should not be carrying my 2 1/2 yr old granddaughter, she said I need to save my muscles, strength and energy. My boyfriend is very understanding about everything.

With the support of those closest to me, my team of doctors, my pharmacists, and all of the wonderful people I have and am meeting here, I will be fine!

I hope I can offer as much support to everyone else in the near future. I have a couple of hurdles in other areas medically that I must leap in coming weeks.

17

Thank you everyone who responed to my post. This webpage really feels like the place I need to be. You all seem very nice and kind. I give gentle hugs right back to you :))

18

I have no idea if this quote is helpful. It was posted by Della on a tinnitus forum. I don't think it matters what "religion" you are if you have one; it is a philosophy, not a dogma. I understand it and then I don't. A true Zen mind is a thing of beauty and I'm not feeling so beautiful. :P But the words are about dealing with pain and healing with acceptance. At least that is my current interpretation. Sorry for the length.

Here is the quote:

A few years ago I came across a little book by Buddhist monk Shunryu Suzuki: "Zen Mind, Beginner's Mind", and it changed my way of looking at life. I return to it regularly, and it's been hugely helpful in putting these kinds of things in perspective ... especially this quote, which I offer to you good people in hopes that it may help some of you cope as well. At least, may it be food for thought:

"That everything changes is the basic truth for each existence. No one can deny this truth, and all the teaching of Buddhism is condensed within it. This is the teaching for all of us. Wherever we go this teaching is true. This teaching is also understood as the teaching of selflessness. Because each existence is in constant change, there is no abiding self. In fact, the self-nature of each existence is nothing but change itself, the self-nature of all existence.
"Without accepting the fact that everything changes, we cannot find perfect composure. But unfortunately, although it is true, it is difficult for us to accept it. Because we cannot accept the truth of transiency, we suffer. ... Even though you try to escape from it, your effort will be in vain. ... This is the basic teaching of how to live in this world.
"So until we become strong enough to accept difficulty as pleasure, we have to continue this effort. Actually, if you become honest enough, or straightforward enough, it is not so difficult to accept this truth. You can change your way of thinking a little bit. It is difficult, but this difficulty will not always be the same. ... If you are suffering, you will have some pleasure in the teaching that everything changes. When you are in trouble, it is quite easy to accept the teaching. So why not accept it at other times? It is the same thing."

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Hi Brenda,

You are correct when you say 'fortunate'. I do remember in the early days when I was handed around to doctors and treated like I had something more wrong with my head than my body. I was fortunate to have a doctor who was very kind and respectful. He could not diagnose me but he was willing to accept that some things are not so easily diagnosed and he would listen to me very patiently and pat me on the shoulder and reassure me he would not give up. I had been in a car accident and when my settlement came in my attorney worked hard at getting out of full payment for every doctor and hospital I had been to. But he called me to ask if he could pay the one doctor who believed me every penny for his bills and I was happy to say "yes!'

It was not until 5 years later when I had moved on that I was finally diagnosed. My new doctor was very respectful and introduced anitriptyline and tramadol. She also directed me to the closest support group. I was with her for 6 years until she retired. When I found a new doctor she did not believe I had it. I was annoyed with her. My insurance company did not give me a long list of doctors and I could switch to so I stayed with her.. I decided to find a Fibromaylgia specialsist and I was lucky. He is cheif of rheumatology at Newton-Weslley hospital. He is also a prominent researcher in the field. He was kind and gave me a prescription for zoloft, which helped with the shoulder pain and memory problems I was having. I asked him nicely to write a letter to my current doctor. The letter was quite detailed and listed all of my symptoms that qualified me as a fibro patient. I was happy to hand that to her. She really had no right to question the diagnosis from a doctor who had treated me quite successfully for 6 years. I know what it feels like to be on both ends of the spectrum on patient treatment. I had this experience (doubt) once again with my cuurent doctors ( I had moved again) and felt wonderful pleasure (even though my back was in pain) in making them feel like fools again. I have a new neurologist, new physical therapist and they are angels in a dark tunnel.

20

Hi and Welcome! Wow, you have a lot to juggle that is for sure. I know how hard it can be just to manage ourselves and then to factor in husband, kids, work - it is a heavy load for sure. I just wanted to say welcome, I look forward to getting to know you more. Gentle hugs, it is good to be kind to our bodies whenever we can!