It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Fibromyalgia Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 03-15-2009, 09:54 AM   #1
Senior Member
(female)
 
Join Date: Nov 2007
Location: Williamsburg, VA
Posts: 296
Rita27 HB User
Anyone else who thinks they are misdiagnosed?

Hi, I am in so much pain and I have swelling in all my joints and fatigue. I can hardly walk some days. I do have muscle pain, but I still think the doctors are missing something and I have more than just fibro.

I know a lot of women that have fibro and they are doing much better than me, not in CONSTANT pain and they have *flares* then get better, esp. since it's only been a few years. I never feel better, and none of the fibro drugs seem to do much. I also recently was diagnosed with stomach ulcers from all the anti-inflammatories and can't take them anymore. I have HBP and cholesterol too. My back and neck discs are arthritic and my knees are horrible.

I'm just a disaster, but I still feel there's something else going on--I think I have RA, like my sister, but because it doesn't show in those stupid blood tests the doctors tell me no. My sister's didn't show in her blood tests for 10 yrs! In my opinion, the doctors just look at tests and don't even listen to your symptoms. I have had rheumatologists who won't even look at my swollen joints, they just say it's from fibro and I should exercise and go to PT (which makes everything worse). I was on Cymbalta, but it made my stomach worse.

I used to exercise 5 days a week. I was always at the gym. So if exercise was the answer, I would never have gotten this in the first place!

 
The following user gives a hug of support to Rita27:
whatswronghere (04-01-2011)
Old 03-15-2009, 01:43 PM   #2
Newbie
(female)
 
Join Date: Mar 2009
Location: leesburg,va
Posts: 8
jett2020 HB User
Re: Anyone else who thinks they are misdiagnosed?

Rita, Have you been tested for lyme disease? I was told I had fibro too, but as I got sicker I didn't buy it. My first lyme test was negative, couple months later made them do it again and it was postive. I get terrible leg pain and swollen knees all signs of lyme.The fatique is also a big clue, with lyme you are so tired you can hardly function.Look it up and see if you have any other symtoms that fit. Hope your feeling better soon and good luck!!

 
Sponsors Lightbulb
   
Old 03-15-2009, 02:16 PM   #3
Member
(female)
 
Join Date: Feb 2009
Location: Latrobe, PA, USA
Posts: 81
chilyrabit HB User
Re: Anyone else who thinks they are misdiagnosed?

Hi Rita, Jett,

I'm not sure what I think. I just know that I want as many answers as possible. I recently read a post on the Lyme board. Apparently, most doctors only test for a typical band of Lymes. It seems that there are in fact many bands of Lymes that typically is not tested for. Through my research, I found this site that allows the user to search for doctors that understand about these other bands. I will be calling this week. There were no docs in my immediate area and I will have to drive 2 hours away. Trust me, I hate driving distance. I hate traveling especially by myself. However, I would like a definitive answer to this Lymes thing. Apparently, not everyone has the red, bullseye rash. And like FM, symptoms vary patient to patient. I know for a fact that I was bitten by more than one tick in my life. I used to play in the woods as a child and was such a tomboy. Of course back then, Lymes was not "an issue". Now a days, people go the ER if bitten by a tick. I also plan to go to my family doc and have him order blood tests for everything again...thyroid, vitamins, anything and everything.

Well, I just wanted to share my story, point of view with you.

Best wishes and keep us posted. Until then, have a happy, sun-shiny day!

 
Old 03-15-2009, 09:46 PM   #4
Senior Member
(female)
 
Join Date: Feb 2009
Location: TN
Posts: 127
ngtstrm HB User
Re: Anyone else who thinks they are misdiagnosed?

Hello all! I don't know what to think sometimes. I have too many fibro symptoms for it to be a total misdiagnosis, I think. (Ever wonder if it's called a "mis-diagnosis" because they "miss" something? ) Right now I'm trying to rule out the possibility that most of my symptoms are really undertreated Hashimoto's thyroiditis-related... but, as I'm sure y'all know, that is hard, since the symptoms are so similar. I just started Armour Thyroid, though, so I hope I'll be better than I was with just Levoxyl. I too have been bitten by many ticks, as I was also a tomboy. Maybe I should check into that one next... thanks for the tip!

Hope y'all have a happy and healthy day!
__________________
Clothes make the man. Naked people have little or no influence on society.
Mark Twain

 
Old 03-15-2009, 09:54 PM   #5
Junior Member
(male)
 
Join Date: Mar 2005
Posts: 34
Ace88 HB User
Re: Anyone else who thinks they are misdiagnosed?

I believe this. I have all the symptoms of fibromyalgia. I believe that for whatever reason, whether it be viral, bacterial, fungal, etc...our immune systems become run down, and this ends up in a downward spiral of us not being able to cope, especially with fatigue and muscle and nerve pain. However, recent extensive blood tests in my case indicate a possible missed thyroid positive test based on the ration of T3 to RT3, which should be 3, but is 359/349 for me. Hypothyroidism has awfully similar symptoms to fibro, so in my case, while I have all the pain associated with anyone who has fibro, there may be another cause and it may be fixable.

 
Old 03-25-2009, 01:03 PM   #6
Junior Member
(female)
 
Join Date: Dec 2008
Location: washington
Posts: 18
JessTeets HB User
Re: Anyone else who thinks they are misdiagnosed?

i know EXACTLY what you mean. I have been diagnosed with fibro but I know thats not all that is wrong with me. When I was diagnosed I was told it was secondary. But its like my doctors don't understand! There are times that my knee swells to the size of my thigh. When it first happened it did it in the middle of the night. I woke up from the pain and then just went back to sleep. But when I got up out of bed I fell on my face. My husband was like what the heck!?!?! He kept asking me if I hit it in my sleep or something. Im like well if i hit my knee hard enough to make it look like this I think I would of noticed lol. I couldnt walk for about a week after that. I had even had to be assisted in the bathroom! It still does it every now and then. But every single morning I wake up with a swollen knee (not to the point where I fall) but bad enough that I can't hardly walk in the morning. I just have to limp around for a while. I know for a fact that all of my symptoms arent from Fibro. I also have a family history of problems. My father had a collagen vascular disorder. When he got sick several things went wrong with him and he also had RA. Which is what I KNOW i have but just like you the test comes out neg. AUGH DOCTORS!!!! I have extremely high chol. and triglycerides. My trigs. are 1420! Im not overweight or unhealthy. Im 21 years old and I weight 120. Yet, no one does nothing about that either. I have also been having heart problems for the last 6 months that the doctors pay no attention to. I guess when I have a heart attack they will notice lol. Do you have problems like this too?? WOW im writing a novel. but keep in touch and let me know if you figure anything out.

 
Old 03-25-2009, 04:41 PM   #7
Senior Member
(female)
 
Join Date: Mar 2009
Location: Jersey Shore
Posts: 201
Fibrobugsme HB UserFibrobugsme HB User
Re: Anyone else who thinks they are misdiagnosed?

Quote:
Originally Posted by Rita27 View Post
Hi, I am in so much pain and I have swelling in all my joints and fatigue. I can hardly walk some days. I do have muscle pain, but I still think the doctors are missing something and I have more than just fibro.

I know a lot of women that have fibro and they are doing much better than me, not in CONSTANT pain and they have *flares* then get better, esp. since it's only been a few years. I never feel better, and none of the fibro drugs seem to do much. I also recently was diagnosed with stomach ulcers from all the anti-inflammatories and can't take them anymore. I have HBP and cholesterol too. My back and neck discs are arthritic and my knees are horrible.

I'm just a disaster, but I still feel there's something else going on--I think I have RA, like my sister, but because it doesn't show in those stupid blood tests the doctors tell me no. My sister's didn't show in her blood tests for 10 yrs! In my opinion, the doctors just look at tests and don't even listen to your symptoms. I have had rheumatologists who won't even look at my swollen joints, they just say it's from fibro and I should exercise and go to PT (which makes everything worse). I was on Cymbalta, but it made my stomach worse.

I used to exercise 5 days a week. I was always at the gym. So if exercise was the answer, I would never have gotten this in the first place!

I'm just curious...have they tested your SED rate or done a C Reactive Protein test? Both would show non specific inflammation and that isn't common for Fibro. If they would test those two things you would know you have more going on that Fibro. If that doesn't work find another doctor!
Take care,
Sharon

 
Old 03-26-2009, 06:04 AM   #8
Senior Veteran
(female)
 
Join Date: Feb 2002
Location: England
Posts: 2,991
niecsey HB Userniecsey HB User
Re: Anyone else who thinks they are misdiagnosed?

Well another one here!! I KNEW it wasnt just fibro.. have graves disease got a total thyroidectomy.. pains as you know put down to fibro and now l have just spent time in hospital for an ovarian cyst! Had probs for ages been back and forward then give up going to the docs felt like l was a pain in the butt! to be told you may just be one of them people who will always have pain to been rushed to hospital through the night with the ovarian cyst which was discovered on my right side. Im due to see a gyny next week so hopefully now l will be taking more seriously and l wont be dished out yet more pain meds and have anti depressents handed to me when lm in severe pain anymore! ENough IS enOUGH NOW! good luck X

 
Old 03-28-2009, 04:50 PM   #9
Senior Member
(female)
 
Join Date: Nov 2007
Location: Williamsburg, VA
Posts: 296
Rita27 HB User
Re: Anyone else who thinks they are misdiagnosed?

Hi Jess, I sent you a Private Message. Check it out. Rita

 
Old 03-30-2009, 05:58 AM   #10
Senior Veteran
(female)
 
NY 1009's Avatar
 
Join Date: Jul 2004
Location: New York, USA
Posts: 896
NY 1009 HB UserNY 1009 HB UserNY 1009 HB User
Re: Anyone else who thinks they are misdiagnosed?

RITA,
my GOSH! we are like two peas in a pod!
I too feel the exact same way you do and am really feeling there is more going on than fibro because once a doctor finds the answer and you have all the symptoms of it, they're going to end the investigation of trying to find out what's wrong. I do have other diagnosis's such as " degenerative joint disease" which is spreading like "wild fire" within the past two months, it's in the big joints of my finger, so it's hard to hold anything or open anything, (you can hear me swearing at the companies who make jarred and bottled item")LOL
in my spine, my left hip, my feet now, and I'm sure in my wrists from falling on them about five yrs ago and sprained them.
anyway, to get to the point, I was gradually detoriating slowly at first. I would be achey and sore from doing yard work, cleaning the house, etc. I put up with it at first and lived my life thinking it was part of the aging process. by the way, I'm 48 yrs old and was around 44 when it all started to happen.
I am in surgical menopause, no more ovaries, due to chronic ovarian cysts, no more cervix or uterus and i"m on estrogen patches now since 2005.

I was going through multiple jobs and couldn't hold onto one longer than a year. I'd miss so many days of work from feeling flu like, weak, fog brain, achy and sore and miserable. not to mention my mood swings.
I wound up looking like a man woman to my coworkers and clients.
I remember days driving to work in so much pain and crying to myself asking why the doctors could NOT find out what was wrong with me. I couldn't even turn my frigging neck to see on coming traffic without it feeling like my neck was going to get stuck permantly into a position like "linda blair" in the exorcist movie. THAT'S when my primary dr. finally referred me to a rheumytologist. He immediately dx'd me with fibro, put me on medication and told me to come back for a follow up to see if there was any improvement.
guess what? It was only getting WORST! not better and the look on my face when I sat on the exam table, almost beginning to cry as I told him there is something wrong with me and I need help.
You can see him silently thinking to himself and then all of a sudden as I was getting ready to put my coat on, he asked me if anyone ever did a blood test to test my vitamin D level. such a simple test, but NO my dr. did not even think of it.
he sent me next door to the lab, told me to come back in a week, and when I got there, he told me my level was down to 19!!!!!
GOD only knows how long I was walking around with a deficiency of vitamin D.
you can't feel healthy without normal levels of vitamin D in your body.
No WONDER I wound up with osteoporosis and osteoarthritis and as soon as I was started on a very strong prescription of vitamin D, the horrible sharp pain in my neck went away. I can NOW turn my head while driving without digging my nails deep into the dashboard of my car!
I dont' mean to make light of a vitamin D deficiency, all kidding aside, I am an advocate for everyone to get their levels checked.
Even my new rheumy dr was tested after I told her I had it and she was deficient too. I met someone on line who was complaining of aching all through his body and he tried it too and told me months later on the same line at the clinic we both go to , that it worked for him.

I did some research on it and found out how important we need it.
it's called the "sunshine vitamin". It's actually an epidemic in this country recently, because of the increase of skin cancer, people are using sun block and the first 15 minutes of sun on our skin WITHOUT sun block is a way for our skin to absorb the vitamin from the sun. but the sun blocking agent is blocking it from absorbing it.
we couldn't possibly eat enough food that has D in it. so trying to incorporate the foods that have it, could not possibly be enough anyway.


I was told by my new rheumy dr. that she wants me to keep taking over the counter supplement D, which the best is vitamin D3. Not the other one.

It's worth a shot anyway. It worked for me and for many others.

I still have chronic pain from either the fibro or something else that I believe is going on in my body, but nothing like it felt when I was D deficient.
it was a different feeling all together.

I'm still doing work on seeing drs' to find out what exactly is going on and hope I find out what it is, because I feel there are days I simply can't survive like this much longer. My bone pain wakes me up at night. I asked others at the forum if they feel like this too and i'm seeing there are others, like you and me.
I'm glad to hear that someone here found out they did have something else and it was "graves disease". not that I'm glad they have it, but happy they found out what the heck was going on so they can treat it.

there ought to be a "mis-diagnosed" section here. We know our bodies best, so if you feel there might be something else going on, it might be your body telling you.

I believe in this very strongly.

let me know what you think?

sincerely,
Linda

 
Old 03-30-2009, 11:15 AM   #11
Veteran
(female)
 
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Re: Anyone else who thinks they are misdiagnosed?

My rheumi told me that Primary Fibro is a diagnosis of exclusion. They must rule out all other first. Now I have secondary fibro. I have never been in remission. I have daily pain, it is just a matter of levels. I have lupus flares pretty regularly on top of the fibro.

It took me many years to get to the bottom of things. Make them test you every year. Sometimes it takes a while for an autoimmune disease to truly declare itself. It took 2 years for mine to... my Antibody tests were all off, but nothing jumped up at them and my ANA was always negative. It took 2 years for it to turn positive and for my antibodies to show which ones were truly out of whack.

My current rheumi is the chief of rheum at Presbyterian Hospital in Dallas and is very thorough and sees me every month to monitor me.

Especially the poster with degenerative joint disease... make sure they keep testing you for RA... They have alot of good meds now that will slow it down.

 
Old 04-22-2009, 04:48 AM   #12
Member
(female)
 
Join Date: Apr 2009
Location: Newville, Pa
Posts: 74
emeadows HB Useremeadows HB User
Re: Anyone else who thinks they are misdiagnosed?

Does anyone experience obvious total body shaking and speech issues? Not to mention heartbeat problems? I have had several episodes where I look like Ii am having a seizure, but I am wide awake. I have speech problems at the same time. Strokes have been ruled out.
I have also experienced times where my heart rate will be my normal of 66-72 and suddenly drop to 45-50. Other times where it tis as high as 90. I have seem a Cardiologist. Had the 24 hr EKG, stress test, echo, etc.... Both my cholesterols are great. Triglicerides are real high.

 
Old 09-01-2010, 07:23 AM   #13
Newbie
(female)
 
Join Date: Sep 2010
Location: Ozark, AR
Posts: 1
jojoyou HB User
Re: Anyone else who thinks they are misdiagnosed?

I too have been diagnosed with Fibro. Narcolepsy and Heart problems. I had irregular heart beats and found that I had V-tach/Electrical problems of the heart. I have had it since I was 19 but a doctor never took me serious until it showed up on a halter monitor. Even then the doctor couldn't believe what he was seeing and thought if I had v-tach all those years I would be dead. I have a defibrilator inplanted in 2004. I don't sleep well because of the pain and the my body will get so exhausted it will shut down and fall asleep anywhere therefore the narcolepsy. I too feel I have been misdiagnosed. I have never went into remission and the pain is unbearable at times even with meds. I have went as far as to travel across country to the Mayo Clinic. All they offered me was a two week exercise course/physical and mental therapy they said helped you deal with the pain. I like the earlier woman have noticed that excercise only makes the pain worse. Heat and exercise seems to up the activity of the molecules thus the nerves as does lack of sleep and stress therefore causing intense pain and heart arythmias. The only time I can exercise without intense pain is while in water whether pool or lake. The fatigue is unbelievable and undescribable to people that have never had it. I went to doctors for a year and a half before I was diagnosed with Fibro and had most all the tests. I had unbelievable reactions from doctors. Some were caring without the knowledge to help while others were obnoxious and treated me as if I were a head case/hypocondriac. I am still searching as are you guys. I know of several people that have been diagnosed with Fibro that have the irregular heart beats and sleeping problems/disorders. Who wouldn't if you are on the extreme end of Fibro. you can't sleep or rest from the pain after a while something has to give. Then I see those that are living a normal life with the occassional flair ups. It doesn't seem like we belong in the same category because there is no way I could live a normal life as they do. It feels as if my daily life went from going at a 100 miles an hour to a screeching halt.

 
Old 09-01-2010, 07:54 AM   #14
Senior Veteran
(female)
 
Join Date: Feb 2002
Location: England
Posts: 2,991
niecsey HB Userniecsey HB User
Re: Anyone else who thinks they are misdiagnosed?

My update since previous posy adhesions, endometriosis, fibroids just had a hyster a few months ago. Still in pain.

 
Old 09-01-2010, 05:52 PM   #15
Senior Veteran
(female)
 
Join Date: Mar 2007
Location: USA
Posts: 964
goldyfm HB Usergoldyfm HB Usergoldyfm HB User
Re: Anyone else who thinks they are misdiagnosed?

Rita, first, I would like to know if you are seeing a Rheumatologist? I went to the third one before I was finally diagnosed properly. Another poster mentioned Lupus, and you hinted at that in your post, seeing that FMS is suspect of an autoimmune nature. I have Lupus and FMS which is te norm for about 25% of Lupus patients. I would definitely mention this to your doctor as many of the same symptoms overlap in the two disorders, but are treated very differently. There is some great info in the sticky posts at the top of the Lupus board that describes testing and there is a link to the hhs in one of those posts that deals with the coexistence of Lupus and FMS in patients. I can only speak of my experience, but I do know that the taditional FMS treatments did not improve my overall pain level, only worsened. I did have some relief from the Lupus meds, such as more mentally alert, able to rest and feel refreshed, etc. I still deal with pain issues, but my own health and allergy issues affect the ability to use the traditional pain meds.

Also I have to stress the importance of Vitamin D testing and therapy. I saw a spot on "The Doctors" just today that proved that Vitamin D deficiency can make pain issues much worse in MS patients, which is of course another immune disorder. It also showed great results in pain management in children with MS receiving Vit D supplements. BTW I am on Vitamin D myself as Lupus patients tend to flare from sun or UV exposure.

I do hope you find a Rheumatologist that will test you properly and get you on a good regimen.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Anyone Misdiagnosed BP & Instead Had Major Depressive Disorder For Years? salty Bipolar Disorder 66 04-21-2009 12:25 PM
Tendinitis anyone US miss Reflex Sympathetic Dystrophy (RSD) (CRPS) 6 01-11-2009 03:12 PM
Has anyone here with E been misdiagnosed by a neuro? JulJul22 Epilepsy 2 10-12-2007 04:15 AM
Question for Wanda or anyone else with information on Autoimmune Antibody Test kmatthew Addison's Disease 7 12-11-2006 07:35 PM
Does anyone else have this kind of epilepsy? amijoy Epilepsy 1 04-27-2005 10:19 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Ambien
Cymbalta
Effexor
Elavil
Flexeril
  Neurontin
Percocet
Tylenol
Ultram
Vicodin




TOP THANKED CONTRIBUTORS



bluelakelady (370), WoodsWalker (132), thefarm (111), Glojer (103), tooolgrl (94), biogirl71 (88), janewhite1 (85), kirstee (60), monalisa24 (55), tmrots (41)

Site Wide Totals

teteri66 (1180), MSJayhawk (1006), Apollo123 (906), Titchou (852), janewhite1 (823), Gabriel (759), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 03:52 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!