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javamommy77
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 8/21/2010 5:37 PM (GMT -7)   
I am on my third dr. Actually she's a PA. Anyways i happend on her by chance when i was supposed to see her boss the dr last week and I guess they "share" patients Well when she looked at my records of course the dr had presumed I was depressed. I told the PA how upset I was about that because I would be the first one to tell you if I was depressed. We talked about that for a minute and I told the PA I had brought up Fibro to the dr but she made it clear she thought it was a quitters disease. The PA aknowledged that no the dr didn't believe in Fibro and the PA herself was on the fence but as we talked and she looked me over told me she was going to do more research into it. Anyways I'm seeing only her now. Well I thought we had gotten past the whole depression thing, and then she asks me if I've been tested for STDS i was like umm yeah every time I have a well woman check up just to make sure. She kept asking me are you sure you've been checked for clhamydia I'm lik eumm yeah. Kind of ticked me off because my husband was right there and she just burted it out (we're recently married)
 
Anyways she finally got off both the STD and the depression and tells me she's sending me to a nuerologist. Well after doing a lot of reading this weekend I decided Monday I'm going to call around town and see if there are ANY rhuemy's who treat firbo(I'll also call the nuero and see if he does)
 
The main reason I'm concerned is I looked up this nuero she wants me to see and well he's not only a neuro but he also used to practice psychiatry!!! I feel like I'm being set up to just be told I have depression again. What do you guys think? Everything I've read is that rhuemy's are more likely to dx it.
 
I am in soooo much pain. I havent left the house in a week only for my dr's apt. I wanted to take the kids to the library today and thought i had gotten my pain under control but when i got out of the shower I was absolutly dying.
 
Last night after making dinner I was in sooo much pain I wanted to throw up. I can't get my hot flashes under control to save my life. My jaw feels like it's permantly locked!
 
I just want to be proactive and not waste my time on bad dr's ya know?
 
Thanks girls for reading and letting me ask/vent I just want a dx of some type

saintsfan
Regular Member


Date Joined Aug 2010
Total Posts : 171
   Posted 8/21/2010 5:44 PM (GMT -7)   
I'm sorry you're having such a horrible time with your docs; we have all been there and feel your pain. My advice? Go with your instincts. It certainly won't hurt to check around with your local rhuematologists. as everyone else on here will tell you fibro is a very fustrating syndrome and sometimes it can take a long time to get a definite diagnosis. Check the fibro 101 thread also-lots of great info on there that will help. And welcome!!!
Dx: Fibro, HTN, Depression, IBS, Lupus like symptoms

"The Lord is close to the broken hearted and He saves those whose spirits have been crushed" Psalm 34:18

AustenFan
Veteran Member


Date Joined Aug 2008
Total Posts : 1771
   Posted 8/21/2010 5:52 PM (GMT -7)   
I get so tired of the whole, "you are just depressed" or "it's all in your head." Have you read the article Libby08 just posted? It discusses how fibro is dismissed because it most often is a women's disease. Sick woman = anxiety or depression. (STDs?? Really??) rolleyes

When I started experiencing severe vertigo and "weird" visual disturbances/dizziness, I had a neuro try to convince me that it was just from the hyperventilation associated with anxiety. I finally made it to a wonderful ENT who told me, "Of course you have anxiety. You have Meniere's disease. Everyone experiences anxiety to some degree with this. You can't have vertigo and not be somewhat anxious." I love him. :-)

My point is that too many docs are too quick to dismiss women's symptoms as anxiety/depression. What they fail to realize is that chronic pain (or another illness) is very often the cause of anxiety or depression. Treat the disease, and the depression/anxiety often improves.

I'll get off my soapbox now, but the whole depression card is one of my biggest pet peeves; it's right up there with "fibro is psychosomatic." rolleyes

If I were you, and you suspect fibro, I would try to see a rheumatologist. I hope you get the help you need.

Hugs - Austen

LIVNLEARN
Regular Member


Date Joined Aug 2010
Total Posts : 30
   Posted 8/21/2010 6:08 PM (GMT -7)   
I would recommend trying rheumatologists.....I ended up insisting that my family doc refer me and she didn't want to but finally gave in to get rid of me....the first one told me I had SLE b/c I have Fibro and the malar rash.....2 opinions later I had mixed connective tissue disease with Fibro being the main cause of my pain.
LIVNLEARN

Mixed Connective Tissue Disease (Fibromyalgia, Lupus in skin only, Gastroparesis, Depression)

javamommy77
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 8/21/2010 6:43 PM (GMT -7)   
Yeah i read the article that was just posted. I've also looked over the fibro 101. thank you ladies so much. I really do feel like I should be going to a rhuemy

sotiredoffibro
Veteran Member


Date Joined May 2010
Total Posts : 1556
   Posted 8/21/2010 6:55 PM (GMT -7)   
I am so sorry you are getting this kind of treatment from people in the medical fields. It makes me so angry every time I hear something like this. I dont get it, why do they have so many doubts about our pain. Maybe there are people out there who do fake it for the drugs but I know what it is like to live with this and I wouldn't even wish it on my worst enemy. I have been so lucky in my treatment by doctors here in ND and you would think if there was backwards thinking it would be here. I have never once been looked at like I was crazy and when I say I am in pain they honestly believe me. Like Austen said it would be nice if all the doubters of fibro out there could feel for one day what we feel everyday. Ok Im done ranting now. I will be praying that you find a decent dr. who believes in you soon.
Gentle Hugs
Shirley
DX: Fibro, Gerds, COPD, Osteoarthritis, Osteoporosis, High Blood Pressure, and Depression.
When I get where Im going dont cry for me down here. (Brad Paisley & Dolly Parton)

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 8/21/2010 7:45 PM (GMT -7)   
Wow! If you have the option of leaving that doc and that P.A. and choosing other ones, I'd drop them in a heartbeat. Seriously, I'd never look back. I've had too many quacks in my life to put up with that kind of crapola ever again. I feel for you, because now just as I found two good docs after mine retired (and I hunted through plenty of quacks to get these two!) - my ins coverage is forcing me to pick new ones. Before that happens though I plan on making as many useful appointments as I can with docs who should understand and help me figure things out. I suggest you do the same - use whatever resources are available to you with your coverage and don't feel guilty about switching! People shouldn't be made to feel like liars by their doctors! STDs? UGH!!! How RUDE!!
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 8/21/2010 7:46 PM (GMT -7)   
Austen - three cheers for you getting up on a soapbox. I'm behind you and think you've got it all straight.
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

SillyMe2
Regular Member


Date Joined May 2010
Total Posts : 110
   Posted 8/21/2010 7:59 PM (GMT -7)   
Can I make a suggestion? Kind of feel odd suggesting this but it's logical to me. Call your local compounding pharmacy. Ask which doctors are prescribing LDN for Fibromyalgia.. NOT that you want to take it but it lets you know that doc is open minded and NOT restricted. To me if they aren't balanced in their field and open minded then I won't bother with them. Now.. it's not what I did but I did call to see which were prescribing it because I wanted to get on it. They were very informative and happy to give me the names of the docs using it. From there I worked it out with my current doc so all went well. She does believe in Fibro just knew nothing about LDN. :) Any doc who is closed minded is not worth their degree!
DX: Fibro, PA (Psoriatic Arthritis), Psoriasis, Rosacea.
Formerly Savella, Now Lisinopril, Vit D, Prilosec, Ambien, LDN, Tart Cherry, DL-Phen

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5930
   Posted 8/21/2010 8:13 PM (GMT -7)   
Javamommy77,
 
Ah, the days of doctor-shopping....I remember them well.  I once had a doctor tell me to have my husband take me out for Mexican food - the spices would "clear my head."  I also had one ask me (first question) if I had any sexual disfunction.  This for PAIN!
 
So don't listen to the rummies.  Find a good rheumy, or internist, or neurologist, it doesn't really matter, just an open-minded, competent medical professional!
 
Debbie 
...fibromyalgia, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......I take Nortriptyline & Clonopin daily, and Darvocet as needed

javamommy77
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 8/21/2010 9:08 PM (GMT -7)   
Chicken Princess and others oh I know with the stds i was like umm ok so i came home and looked up the symptoms for chlamydia and they're not even close!!!!That's a great idea about calling the pharmacy!!! I may have to try that. The problem is i'm on state ins and this office was the only one (beside the one I just left that never got me a referral to pain mgmt after a month) taking new patients.

Maybe this nuerologist will be halfway decent an dopen minded. I really hope so. because once again I have spent the last 3 hours reading symptoms and such on the internet and I just don't see how it could be anything else cept maybe MS. All of my scans and blood tests though have all come back normal.

I still don't get the PA saying she wasn't sure it was fibro yet prescribing me Savella....I swear!Thank you laides you all have been great. I have a very worried husband and 4 small kids that are also worried I'd like to be able to give them some sort of answer!

mysoulsings
Regular Member


Date Joined Aug 2010
Total Posts : 33
   Posted 8/21/2010 9:50 PM (GMT -7)   
hey javamommy. I just wanted to recommed that you see a rheumatologists. I got better results. I saw a neuro first but he turned out to be a real quack. It was a BIG waist of time and money.......his diagnosis was "oh it's just migraines". He was only in the room for 10 minutes and that was it. It took me a while to finally find doctors that cared and listened to what I had to say. I am truely blessed with the team of doc's that have been working with me. Do what is best for you. GOOD LUCK! :)

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 8/21/2010 10:05 PM (GMT -7)   
SillyMe - that's a fantastic idea.

Debbie - mexican food? If it walks like a duck and quacks like a duck and tells you to go get mexican food - it must be a ..
QUACK. *shakes head*

Javamommy - My insurance is a state run program - for low income, so I know what you mean about having limited choices. Hmmm. I wonder if any of the brainy ladies here on the forum have ideas for tracking down someone else for you - they're a resourceful group - as you have seen. Even though there hasn't been a name put to your illness, it is not right for the doctors to treat you like you're nuts. That simply is NOT right. Some doctor somewhere will recognize what is going on. We just have to figure out a way to help you find one.
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

SillyMe2
Regular Member


Date Joined May 2010
Total Posts : 110
   Posted 8/21/2010 10:11 PM (GMT -7)   
Well I too thought all the symptoms pointed to that and so did my PCP. I do have a lesion but that's it.. During my search and I didn't save it but found that some of the Autopsies they do consisted of people who never got a dx for MS. They HAD MS! What that means is they probably never left stage 1. Well that is my thinking anyway and were written off as Anxiety and whatever else. Anyway.. the Lumbar puncture resulted in no O bands and the MRI they will repeat in a year. Not worried about it right now because the meds I'm on are taking care of the pain. That's all I care about right now lol.. Hopefully you can get out of Limbo land though.. I know it sucks being there when you know something is not right :)
DX: Fibro, PA (Psoriatic Arthritis), Psoriasis, Rosacea.
Formerly Savella, Now Lisinopril, Vit D, Prilosec, Ambien, LDN, Tart Cherry, DL-Phen

Twinklestar
New Member


Date Joined Jul 2010
Total Posts : 14
   Posted 8/22/2010 12:32 AM (GMT -7)   
I think you have thought this through well and your instincts are true. You want an honest MD, but you don't want a disbeliever, either. You can spend wasted time and enegy simply trying to make your providers understand, and it sounds like that is unlikely to happen. DO shop around, research, ask for referrals from anyone else in the area with fibro if you know them. Have the comfort, safety and teamwork with your provider is invaluable to your sucess in handling the day to day challanges.
Are your choices dictated by your insurance? Do you have a rheumatologist, and why the neurologist? I am sorry you are in SO much pain, and this doesn't help in making decisions at this important time! We are all here to help you along the way!
It is the journey that counts......

javamommy77
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 8/22/2010 1:41 AM (GMT -7)   
Yes my choices are dictated by my insurance. I have no idea why the nuero first thats what the PA suggested. I really think I'm calling on Monday to tell her I'd like to see a rheumy instead because I've read and heard from others that it's the logical next step. I did find a chiro here in town that works with fibro patients and takes payments but I'm not sure if I can even afford that. SIGH.... I just keep praying that this Savella will work and then they'll be like oh yeah it is fibro.

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 8/22/2010 7:13 AM (GMT -7)   
Javamommy - does your insurance provide you with a list of providers who accept your coverage? If no, how do you search for doctors?

Under your coverage, are you required to get a referral before you see a specialist?
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 8/22/2010 7:41 AM (GMT -7)   
Java, I really understand your frustration! In the search of trying to find out what
was wrong with me, I had many specialists. One suggested that maybe I had AIDS,
even though I said that was impossible, but was tested anyway. I was having atrophy
and had a dent in my arm. I spent hours researching and scanning a derma atlas
online. I went back saying, I believe I have lupus profunda or scleroderma. A biopsy
was then done and sent off to a dermatopathology lab where my biopsy was
confirmed as scleroderma. If I was not persistant and pro-active in my healthcare,
I don't know where I'd be.

I have a wonderful rheumy who does believe in fibro. It is not a bad idea to call
a rheumy and asks if the doctor treats fibromualgia. There are some rheumys who
might only specialize in arthritis and gerontology.

Best of luck to you!

hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/22/2010 9:22 AM (GMT -7)   
Hmmmm....maybe your doctors are crazy!  devil    No, you know if you are depressed or not and No it isn't all in your head.  They don't have answers and, since they think they should, they tell  you that the problem is caused by  you and your mind.  Well, that's a bunch of baloney!  God forbid they do a little research and learn.  The link Doctors Respond To New York Times Article in Fibro 101 speaks volumes.  Get thee to another doctor...one that DOES believe in fibro.
 
Sherrine
Forum Moderator/Fibromyalgia
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

ouchie22878
New Member


Date Joined Aug 2010
Total Posts : 8
   Posted 8/22/2010 10:10 AM (GMT -7)   
As many ppl here i understand what you are going through. It is almost a sad way of passage. I went to many a doctor but get this. I did finaly go to a shrink and explained what was going on. She was the one who told me what was wrong. She wrote me a clean bill of mental health, and the next Doctor visit I had my Dx. Then I said "Great now fix it." Then the battle really began when he said "there is no fix"

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 8/22/2010 10:15 AM (GMT -7)   
Ouchie - that was a great thing to do - getting that shrink to write you a clean bill of mental health! How very smart.
Why my username? It is real life nickname. I love chickens. Will have my flock of hens one day! :D .............. DX'd with Fibromyalgia, chronic hives, sensitivities and allergies, migraines with auras, tmj, and IBS. Not sure what else!

javamommy77
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 8/22/2010 10:28 AM (GMT -7)   
yes I have to have a referral before I see a specialist. I even called an pleaded with my insurance but they said nope this is how it is. As far as my main general care dr it can only be so many dr's and like i said this is the only office here in town taking new patients at the time. Then they can reffer me to who they and the insurance agree on. LOVELY!!!!

I physically cannot do all of this running around any more. it absolutley kills me. I just read the spoon theory and this is how i feel everyday!!!!

I think I ill call my PA and tell her I really would like to see a rheumy first. That it doesnt make sense for me to see a neuro unless she's trying to rule out MS. She even told me I'd prolly have to see many dr's to get this figured out! uggg i hate this!
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