Just diagnosed, frustrated, and Humbled!

[sleepygrumpydopey]

Hi there,

My journey:

My mother had RA and used to tell me she was "crippled after I was born" and couldn't walk for weeks. I used to laugh at her silently and think she was being a little dramatic, couldn't believe that was true.

After my daughter was born, I was 29, I have head to toe tendinopathy and could hardly walk and couldn't open a door. I had steroid injections in my feet, shoulder and wrist that year. Was told I had erosions in my shoulder joints, and diagnosed by rheum as seronegative RA or Psoriatic arthritis and put on diclofenac, vioxx, then celebrex. Those helped for a while, then I just stopped taking them and "muddled through." I was working the ER for years and was one of those that really did think, although with compassion, that Fibro was related to deep seeded anxiety/depression/traumatic emotional experiences. In fact, I had done some life coaching/personal development work with several patients with amazing improvement in their outcomes.

By the time I was 40, I had become a nurse practitioner. I worked critical care, lungs, and sleep medicine for 4 years. Then, did a year of Neurology with predominantly MS, fibromyalgia, migraines, parkinson, etc. Now I am doing Urgent Care/Family Practice.

Last year I had my second head to toe flare of what I assumed was RA/PSA. Hands, wrists, elbows, ankles, knees, shoulders were swollen extremely painful to touch... I used compounding cream, 10 ice packs, and since I only have a shower; my hubby went and got a kiddie pool and epsom salts and I took a warm backyard kiddie pool bath. That helped a lot.

Finally, after avoiding DMARDS and doctors, I saw a very well respected Rheumatologist in December. She did trigger point palpation and I almost jumped to the roof. She giggled and said "you have fibromyalgia and Sjrogren's." I immediately said, "no I don't, I don't accept that diagnosis, you need to take that back, no ER will ever take me seriously again if I go there for something." LOL. She did bloodwork, X-rays, and gave me educational reading on Fibro and Sjrogrens.

Here's where it get weird. She told me that Cymbalta was considered an option if diagnostics confirmed her hunch. Told me to stop NSAIDS cause they don't help fiber...... that was true.

I was in a lot pain, the doc I worked with said "don't wait, try a sample of Cymbalta until you follow up." So I did. HUGE HUGE improvement in mood, anxiety, pain, mobility, flexibility.

Well, I went back to Rheum today. My work up results still pending. She then told me she isn't accepting any new Fibro cases. Refused to give me an rx for Cymbalta, saying it's not used for Fibro. And told me I would need to see PCP for that. Then said she would notify me if my results indicated something other than Fibro and Sjrogrens.............. that was it. I was ticked! You're gonna give me that diagnosis, reverse your previous plan and make me think I"m nuts, and not provide me with a non-narcotic completely legitimate option until we figure this out?

I am humbled by the new perspective I have gained through my now personal experience with Fibro. I used to scream if my husband accidentally "poked me" with his hand or finger anywhere... I used to say "stop poking me, I have sensitive FAT." It used to be a painfully true joke and we would laugh. Now, we know, it wasn't just me being weird (although I am a bit weird).

So, I'm glad I found this site. I have to find a new PCP because mine just went "concierge". So I'm in limbo and really need to find a doc to prescribe my Cymbalta again. I don't work for that other doc anymore and don't really want to bring my personal life into my current practice and colleagues.... learned that one the hard way years ago.

Good to meet you all,

Sleepygrumpydopey

 

[1sweed]

Sleepygrumpydopey, I like your name it fits the fibro image. lol Hello and welcome to the forum. I am looking forward already to reading more of your posts as you seem to have a great sense of humor. I understand about the problems with teeth, in my case I had soft teeth, as the dentist put it and had to get some dentures at 14. Not the same as having Sjrogrens, but did suffer from dry mouth for awhile because of medications. With your medical background I am sure you will fit in quite nicely on this site and be able to offer good information to our members.

Be sure to read through the different topics and sections and post where ever you like, asking questions or answers other folks posts. Give us some of your personal coping skills and we will share ours with you. Be sure to check out the Blog section and start your own if you wish. Oh, and count me in as a new cyber fibro friend. See you around the forum.

 

[sleepygrumpydopey]

Thanks so much for the warm welcome. I will definitely try to get involved. I see how important support is, in anything in life let alone a disease that many, including health care providers often cast doubt or false stereotypes on. I think "denial" should be a diagnostic criteria for fibro cause it seems like everyone was "in it" at one point or another . Just since the time I first posted I had several VERY interesting encounters with medical assistants/radiology techs, and an RN student I worked with. One day, they were giving me their "opinion" on Fibro in my personal office after a Fibro patient presented for care. I was laughing so hard inside as they were spewing what many ill-informed people do on the subject....

Let me say, this RN student was one of the most arrogant, know it all, let me impress you with "my vast knowledge and experience I gained being a nursing student in a free standing ER for the past 3 months" kinda guy. I had been professionally letting him bury himself and compassionately "putting him in his place" for the past month because I believe that if he gets over his "egomaniac with low self esteem" syndrome, he will actually make a good health care provider LOL.

So I waited for them to finish. Then went on to explain that I too thought there was more psych involvement in Fibro diagnosis than actual physiologic disease (I paraphrased for their benefit......... they used different word choices lol, like that fibro BS is code for neurotic, I need my meds). I then began to tell them that the disease WAS listed under DSM-IV Psychiatric realm and almost all women.... UNTIL............ they removed the trigger point tenderness from criteria for diagnosis because women were usually more tender than men. Then, it MIRACULOUSLY went from a predominantly female disease to almost 50-50 with men. Can you even IMAGINE why the disorder was then placed under NEUROLOGY instead of PSYCH? Their eyes bulged, their mouths opened, and it was the perfect time to add "yeah, I was surprised too when my rheumatologist diagnosed me with it and explained that history to me too." LMAO.

Look forward to getting to know you all,

Me

 

[cmetryme]

I love it! You go! You see like I've been saying in all my post.
Do your research. Its your tool. So happy you joined our group.
Don't let others bring you down. Stay well my friend!

 

[Thrivewright2]

Hi.

Your story has to be more than frustrating for you! It seems that there are so many of us with difficult cases regarding doctors, medications, discomfort management. I had many different prescriptions prescribed to me, but by far, the thing that helped me the most was a natural supplement. It is called Thrive. It's plant based, gluten free, and it has helped ease my discomfort, regulate my sleep, ease my sensitivity to being touched, give me sustained improved energy, and improved clarity. You can do a web search for this product.


Link Not Allowed!

 

[cmetryme]

Just a thought.
As hard as it is for us non medical folks to deal with people.
Imagine what the doctors are going through when they do take patients.

No wonder you were told no more new fibro patients.

 

[staystrong]

Hi! Welcome!

I too look forward to hearing more about your experiences. I am happy to share information and support.

Your posts have already been so informative!

Hope you are having a great day!