It wasn't really Fibro.. I was never correctly diagnosed. Now I know...

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.

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.

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.

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)

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?

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.

Sherrine

@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.

Dear CharmCityLady,I would appreciate you sharing you diagnosis with me via email in my profile.
Thank you!

@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.

Hello everyone I am glad to be a member of the HealingWell community!

@Charmcitylady,

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!

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

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!

Sherrine

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

@charmcitylady how are you feeling? My sister found this post when she looked up my symptoms. Are you able to email me directly?