I'm just wondering if it's a common mis-diagnosis.
Posted by Lymetoo (Member # 743) on :
Pretty common!!! And since you've read my story, you know my answer is ME!! Posted by tdtid (Member # 10276) on :
I was misdiagnosed with everything under the sun for five years, but yes, yes, yes....Fibromyalgia was one that definitely stood out as one they were certain I had.
Sadly, they don't know what causes fibro, don't have any fix for it and yet they have no problem giving you that as a CLINICAL diagnosis.
I had a doctor that felt that anyone diagnosed with fibro should definitely get checked for lyme PROPERLY.
Cathy
Posted by bettyg (Member # 6147) on :
1st dx was MONO/EPSTEIN BARR VIRUS followed by fibro and the REST to follow......
Posted by DakotasMom01 (Member # 14141) on :
I was misdx'd with possible ms first, but brain mri showed no lesions,then got the dx of fibro. Then more strange "auto immune" dx's. My first bite was abt 20 yrs ago, but it looked like a big bruise so I wasn't treated then.
2 yrs ago I got another bite, looked similar to the bruise.I pushed the rhuemmy to do the wb and had 6-7 bands pos.
I would say fibro is a common mis dx.
Posted by joalo (Member # 12752) on :
Yes, I was misdiagnosed with CFS and fibro for 20 years. Quack, quack.
Posted by kam (Member # 3410) on :
Yep. It was mentioned...sort of. SEcond visit into primary doctor's office.
he gave me a piece of paper about fibro..stating learn to live with it...nothing you can do about it..don't try and get disability.
..told him i did not have the 4 symtpoms listed.
..he said you have the fatigue don't you, then walked out of the office
..sent his nurse in to tell me not to come back for 6 months.
..told her i needed to find out what this was and get back to work
..later saw a specialist in fibro who said he didn't know what i had but i did not have fibro and to let him know when i found out
...had several come down sick at work, same time, same symptoms...one was dx with fibro brought on by stress at work
she got workmen's comp and disability from work
5 years later finally got in to see a doctor through workmen's comp who gave her lyrica
said it has improved quality of life
she is not interested in looking into lyme disease and is ok with fibro dx
other had all ready been dx with fibro and then was dx with cfs ...
...she also is not willing to look into lyme disease
she too was approved for disability at work
both seem to be able to do more than i am able to
workmen's comp is helping her out with chiro visits and massage therapy I think and antidepressants and visit to shrink
i think when it comes to things attacking the inside of the body we all have a lot to learn
Posted by laura j (Member # 14257) on :
How about myofascial pain syndrome? I was told I had myofascial pain syndrome or Fibro. I think they're almost the same thing. I do have myofascial pain. It is a symptom however, not a dx.
If someone doesn't know about the fascia in the body I'd be happy to explain it or provide a link.
Posted by WyoWhy (Member # 15676) on :
Thank you all of you.
At this point I'm not exactly sure fibro even exists (or CF). I do wonder if so many things are all Lyme type diseases in the end.
I'm watching carefully to see if symptoms increase or decrease or change, and am looking for a Lyme literate doctor in the meantime.
Thank you all.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by WyoWhy:
At this point I'm not exactly sure fibro even exists (or CF). I do wonder if so many things are all Lyme type diseases in the end.
At any rate, I do believe that these other syndromes have a bacterial origin... that's for sure.
Posted by Robin123 (Member # 9197) on :
I think it's a political plot to tell us we have fibro. That way, we don't get to find out we have Lyme.
Posted by perplexed (Member # 1913) on :
I was told in 1979 I could have Lyme Disease...but not treatments or tests then at all.
Then I was dxd in 2001 with Lyme Disease and sent to a Rheumatologist...he told me I did NOT have Lyme Disease and was a classic case of Fibromyalgia.
Then I went to Infectious Disease Doctor in 2001 and he treated me with doxy for 6 weeks and iv rocephin for 3 weeks and on my follow up visit he had my iv removed and fired me.
I have since been told it is not Lyme, it is your anxiety. Do you want a med for depression? Are you getting behavioral health help? It is just old age...LOL Everyone has something has also been told to me.
It is a lonely, devastating and expensive disease to get...dang tick! Right now I am suffering from upper leg pain and swollen leg down to my toes...maybe it is from the 6-8 bottles of water I drink everyday!!! LOL Will find out when I go to my regular Duck Doc tomorrow. Here come more blood tests..I am sure...ouch!
Hugs, Perplexed Posted by laura j (Member # 14257) on :
Perplexed,
Sounds like you need to get to a LLMD!
Posted by laura j (Member # 14257) on :
CFS, Fibro and Myofascial Pain Syndrome should not be considered a dx. They are a syndrome which are a group of symptoms! A label they put on a bunch of SYMPTOMS that they don't understand and don't know the cause.
Posted by amk33 (Member # 13206) on :
Yes, by a neurologist. I didn't believe it, though, so I never went back.
Posted by bunnyfluff (Member # 14117) on :
I agree w/ lauraj.
I was *dx'd* with first FMS, then CFS. No one ever bothered to check anything except ANA & CBC.
I honestly do think that FMS/CFS is a cop-out Dx for Dr's, and also that it has been "made up" so that the true #'s of Lyme cannot be found out.
GWS, as well.
Bunny
Posted by kam (Member # 3410) on :
My brain is going. I am not sure who sent me a private message now.
I recall answering it and then going back in to reread what I answered as I wasn't sure if it was clear.
Now, I can not find my message at all.
Going through a foggy time right now...but just wanted to let the person know I was not ignoring them.
I will not try to function next time until I am doing well enough..ha.
clear as mud?? thought so
Posted by randibear (Member # 11290) on :
let's put it this way -- what haven't i been diagnosed with???
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