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Posted By : CharmCityLady - 9/10/2016 12:09 AM

I used to come here about 3-4 years ago.

For 8 years I've wondered what went wrong with my health. At 26 years old my health changed DRASTICALLY. I thought I had Lupus because I had joint pain, aches, hair loss, kidney stuff, face rashes, weakness, stinging pains, sleeping problems exhaustion and more.

Went to the rheumy at about 29 years old or so after visiting tons of other docs and getting nowhere. He rules out Lupus and gave me a Fibro diagnosis. I thought it that was it, maybe.

But no doctor knew what was actually causing my widespread aches and other issues.

All along its been something elsn I will not disclose.

I just found out. 8 years of being misdiagnosed or not properly diagnosed. 8 years of seeking and getting nearly nowhere.

I wonder if anyone else out there is like me... thinking "fibromyalgia" explains their symptoms, pain, and exhaustion when really it's something more. .. or even something more serious.

Anyway, that's my story.

Post Edited (CharmCityLady) : 9/10/2016 1:07:11 AM (GMT-6)

Posted By : Northernelf - 9/10/2016 9:11 AM
Aack....sorry, but why won't you disclose what your new diagnosis is ? It might be helpful to some of us.

I am undergoing investigation for Sjogren's at the moment - I too thought it had to be something more than Fibro. For the last couple of months my parotid & other salivary glands have been very sore and swollen. My eyes are also very dry...pretty sure that's going to be my diagnosis - likely along with fibro though because about 40% of Sjogren sufferers have fibro too.

Posted By : couchtater - 9/10/2016 2:23 PM
I remember your post.
I'm glad you've got some answers now.
I have arthritis now and it has explained my more severe pains.
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Posted By : Huddie - 9/12/2016 12:07 PM
It sounds like you have lyme disease. I would get to a good LLMD - all symptoms of lyme. I was diagnosed with fibro. after several years of weird ailments that seemed to come out of the blue: dry eyes, stiff neck, muscle pain, fatigue, pain down arms and in shoulders, exhaustion after exercise, anxiety, insomnia. July got bit by tick and found out I had lyme all along.

Posted By : CharmCityLady - 9/12/2016 11:12 PM
Sorry guys, I'm just very scared to share with the actual diagnosis because of no privacy online.

Its not Lyme but maybe related in symptomology because it's **bacterial** and it's a doozy of a diagnosis.

I got sick traveling abroad. That's one hint.

I accepted the Fibro diagnosis because after years of having a mysterious illness wirh no name affecting multiple body systems and causing wide spread aches and pains and fatigue, you are happy to have any explanation, but now I realize that really distracted me from my actual source of illness and dysfunction.

I should have put two and two together. My symptoms started in the months coming back from an impoverished area of Latin America. It was an 11 day trip only and first two symptoms showed up in first weeks after the trip.

Anyhow, I now note how I posted here for so long. Now I know why it was strange no one else had such bad reactions to food. .. and the other symptoms I had.

Post Edited (CharmCityLady) : 9/12/2016 11:17:29 PM (GMT-6)

Posted By : sam12 - 9/14/2016 5:57 PM
Can you give the first letter of the bacterial infection and how many letters it has in the name? I am dealing with mystery illness and have no explanation for it. Treating it like Lyme for now, but always praying that I find out what it is.

Posted By : sam12 - 9/14/2016 6:03 PM
Is it one of these?
Dengue Fever
Ebola Virus Infection
Hepatitis, Infectious
Rickettsial Infections
Yellow Fever

Also can you tell us how you were correctly diagnosed, what tests and who to go for?

Posted By : CharmCityLady - 9/14/2016 9:31 PM
Hi Sam, I will try to PM you.

Any person searching for a "mysterious illness" for years who has spent any time in a developing country (apparently even less than two weeks) should probably see an Infectious Disease specialist, just to rule out virus and bacterial stuff.

I went through so many specialists and PCPS that I gave up before I got to an ID doc. My trips to docs just never seemed fruitful. Now I wish I'd continued my investigation.

I was happy with the FM diagnosis for the first year. Then later I was like, "Wait a minute. .... What is causing my FM-like pain?! There just HAS to be a cause to this I haven't uncovered. " FM-like-pain and exhaustion, in my case, seems more like a SYMPTOM than a *cause*.

I was right, in my case, at least.

Post Edited (CharmCityLady) : 9/14/2016 9:38:52 PM (GMT-6)

Posted By : CharmCityLady - 9/14/2016 9:36 PM
Couch tater! I remember you! It's good to hear from you!

Posted By : CharmCityLady - 9/14/2016 9:55 PM
On second thought, I don't know if private messages work here.

What nation are you in and have you ever traveled?

What are your main issues?

Posted By : sam12 - 9/14/2016 10:57 PM
Hi CharmCityLady,

I am in US. Have traveled to South Asia twice in last 10 years.
Feeling of fever which never develops
Chills and Sweats
Easily bruised skin
Indented marks on skin
Random burning sensation
Tingling fingers and feet
IBS type issues
Neck and joint pain

Posted By : Sherrine - 9/15/2016 6:38 AM
Charm, first off I'm so glad you finally got answers and a correct diagnosis! Now you are in your way to feeling better.

If you put an email address in your profile, only HealingWell members can see it. They can click on your name at the left of one of your posts and it will show your email address. Then they can email you and you can share with them that way. (Try clicking on my name and you will see what I'm talking about.)

Non-member can't do this plus it can't be seen by anyone who logs on this site. That's why I have always deleted contact info members put in their posts. Anyone, even non-members can read the posts. Hope this helps. It looks like we have members who are searching in this direction.


Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 9/15/2016 6:43:25 AM (GMT-6)

Posted By : Ljm2014 - 9/15/2016 4:18 PM
Well, we are very happy to hear that you are correctly diagnosed and

Can be treated accordingly.

So nothing odd showed up in routine blood work etc?

I know a fibro specialist who treats with anti viral meds as well as other ways..he seems to go at it from many angles at once..including balancing hormone levels..i often think that a more aggressive approach sounds good..

Still to this day , treating it seems hit and miss.

Posted By : CharmCityLady - 9/15/2016 10:06 PM
@Sam. I will try to email you when I have some time.

Keep in mind, I'm no doctor, so take what I say as a non-doctor.

A lot of the symptoms you describe can overlap with so many things. I did experience some of those things, but, like I said, many things can cause them, and sometimes even anxiety might cause them, so its hard to say with any certainty what causes them.

Even if we don't fully understand FM, for instance, we know that it is a real issue and that lots of people have it and fit a similar pattern of symptoms.

If you really don't feel well, and have the means to do so and have visited other docs and still don't have answers, it might be worth a trip to an Infectious disease doc. I still don't think its common for people to get chronic illnesses from travel, but it can happen.

@Sherrine. Its nice to hear from you again! Thanks for the description and directions about email.

@LJM. Yes, I have heard about FM patients being prescribed antivirals. That always made me wonder what actually causes FM. Also, I happened to do lots of research before my diagnosis on microbiomes and how much the immune system in our gut affects our health. People with CFS, for instance, have markedly different stool samples / microbiomes than the general population. Whether that is cause or effect, I do not know but I think its fascinating and might lead to a cure or fix. Eventually, I came to consider that something was out of whack in my bacterial microbiome (because I have wild reactions to food and tons of inflammation when I eat lots of foods). That made me think my immune system is haywire. I was right in a way! But that isn't what led to my diagnosis. That's a long story.

Bacteria? Virus? Maybe even Genes flipped on and off by environmental triggers? So many things to consider. I'm always so curious about what causes these things to happen.

Nothing showed in my bloodwork all that time.... but.. I was only tested for what the docs thought to test for. That was the issue. Thyroid - NORMAL. CBC - NORMAL. ANA or autoimmune. NORMAL. other blood tests.. normal! Normal, normal, normal, only NOT normal at all.. we just weren't looking for the right things.

Posted By : Ljm2014 - 9/15/2016 11:46 PM
I believe a lot of that goes on in doctoring, not looking for the right things....

I have never gone to all the different drs that many see.. I do most with my primary..

Hope you feel better soon

Posted By : run2004 - 9/17/2016 5:31 AM
Dear CharmCityLady,I would appreciate you sharing you diagnosis with me via email in my profile.
Thank you!

Posted By : Myself 09 - 9/17/2016 7:20 AM
CCL--Glad you have an accurate diagnosis. I am also glad you kept digging and were rewarded.

As for doctors--the width and breadth of medical knowledge is huge (Yuge) and diagnosis is dependent on a doctor's knowledge. . Many doctors have specializations--and have learned from their mentors to ask this series of questions to narrow down and then pinpoint the prospective reason for the illness,and then possible treatments. It is kinda like a flow chart in their head--learned when they were interning. Specialists have knowledge on one area, but little about other areas. PC doctors have a wider base of information--but it is a shallower one. The asking of the right question and then the knowledge to follow the answer you get to a possible cause--Well,I guess we would like them to be accurate all the time, but that isn't possible,even with the best of the lot.
Ulcerative Colitis 2003, Fibromyalgia DX 2005, Crohn's 2013, Enteropathic arthritis, 2013. Family History of Fibro--2 out of 3 siblings diagnosed. Started SCD-June 2013. *There are three kinds of people in the world: ones who see the glass as half-full, ones who see the glass as half-empty, and others who see a big crack in the side which is leaking all over their %$#@# foot

Posted By : CharmCityLady - 9/17/2016 5:45 PM
@myself Hi! I remember you!

I'd actually sort of given up on finding what it was. I got so used to "it" that it just became that invisible friend that affected me everyday. It became the new normal. I was not expecting a diagnosis when I got it... I was also not trying to get one when I got it.

Yes. I don't expect docs to be God. They are people with limited information. Also, they can only go off of what you give them. I realize that I may have been able to guide their thinking in the right direction if I knew what to share, but I just didn't know myself what to say since there was too much to share. I said what I could think of. Usually, I just gave them the impression that I'm anxious and apprehensive. Unfortunately after that, I often felt dismissed. Oh well.

Posted By : Daisytiff301 - 1/10/2017 9:24 PM

I have had severe eye pain for eight years and have been searching 24/7 for the cause since my doctors have not been able to figure it out. My vision is getting blurrier and I could eventually lose vision in both eyes. Your post from 2013 came up under my searches because I have the same exact symptoms. Eye pain after eating, feeling like something is pushing the eye out of the socket, intolerant to all foods, chronic fatigue, fibro, etc.

The eye pain has become so intolerable it has completely disrupted my life. I was hoping to get in touch with you and that you might share your diagnosis with me since we had very similar symptoms. My email is in my profile. I would really appreciate it if you could email me when you have a chance. Thanks in advance.

Posted By : precious007 - 1/24/2017 1:19 PM
Hello everyone I am glad to be a member of the HealingWell community!


I am happy that you have been finally correctly diagnosed after years of doctors just brushing it off. At the end of the day we are all just labeled with "Fibromyalgia" and doctors and even scientists don't have a clue what exactly is causing the symptoms of this very complex syndrome. In my honest opinion, Fibromyalgia is just a "label" that is being used by doctors when they cannot explain/find out what is really going on.

I am also very curious what you actual diagnosis is because I have never heard of another bacterial infection that can cause the symptoms of Fibromyalgia (long-term) other that Lyme Disease which is quite controversial and Syphilis (tertiary stage). Can you kindly send a send me a PM too? For privacy reasons I notice that Charmcitylady didn't want to post the actual diagnosis on the thread, if you guys got a PM can you please share?

Thanka in advance! turn

Post Edited (precious007) : 1/24/2017 12:22:09 PM (GMT-7)

Posted By : Daisytiff301 - 2/7/2017 2:21 AM
Yes, if anyone got a PM can they Email me as well? My address is in my profile. Her symptoms are very similar to mine.

Posted By : Ken34512 - 8/27/2017 7:53 PM
I would like to know what the diagnosis was. I've had the same issue starting 4 yrs ago. It started while eating food, and still does to this day. Every time I eat my eyes swell and will be in pain for days.. the more I eat, the worse it is.
I've been to John Hopkins, rhumotologist and a million other doctors. All normal ...

I removed your email in your post. Anyone on the Internet can get it. You can put it in your profile though and only HealingWell members can see it. This is for your protection. Thanks for understanding!


Post Edited By Moderator (Sherrine) : 8/29/2017 12:28:00 PM (GMT-6)

Posted By : Ljm2014 - 8/27/2017 10:08 PM
Hope she can answer you..

My eyes seem to swell with barometric changes,

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