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Could It All Just Be Fribro?
roolyn posted:
I'm hoping for a bit of insight regarding several new symptoms I've been experiencing recently. I am a 29 year old female with a history of back and neck problems, spinal surgery (ACDF) in 2010, and fibromyalgia (diagnosed in 2009). Over the past few years my fibro symptoms have become fairly predictable, with weather changes, stress, insomnia, and caffeine being my biggest pain triggers.

Last month, I had a set of new symptoms all arise within the span of several days. First, I was out in the mid-day sun for less than five minutes when my skin suddenly began to feel severely burned. (I'm fair-skinned, so I've always burned pretty easily, but not in a matter of minutes.) I found some shade quickly, and when I got home, I found that my face, upper chest, and arms (which were all exposed to the sun) were burned bright red and felt tender and warm to the touch. That was over a month ago, and the "sunburn" hasn't faded. In fact, the redness over my cheeks, nose, and forehead sometimes begins to flush a deep red and becomes painfully hot.

One week after the sun exposure, I began to have vision problems. I was diagnosed with a retinal hemorrhage, specifically a "Roth spot", and had blood work done (CBC and ANA panel). It all came back normal. Which, according to the opthalmologist, rules out RA and lupus.

During the week following the hemorrhage, I began to experience new and severe joint pain, redness, and swelling in my hands and wrists. The palms of both of my hands began to burn and feel like I was holding them against something hot. And I had the worst overall pain/fatigue episode that I've had in months. This all hit me on the same day, roughly two weeks after the sun exposure triggered my facial rash/burning.

I'm feeling better overall, though the facial redness is still there and occasionally burns, the joint pain/redness/swelling has not gone away, my palms still burn, and I alternate between days in which I have a fair amount of energy and days in which I am so stiff and exhausted that I can barely make it up a flight of stairs. My strong suspicion is that this is more than fibromyalgia. However, when my CBC and ANA came back normal, I was pretty much told by the eye doctor that there is nothing wrong with me and that the Roth spot was just "one of those things". Is it possible that I'm experiencing less common fibro symptoms for the first time? Does everyone suffering from fibro experience these things at various times? Or is there a possibility that I could have something else going on (like RA or lupus) even with a negative ANA?

Thank you so much in advance for your time. I realize this is a lengthy post, but I would greatly appreciate any feedback or advice you could give.
dollbug responded:
Hello and welcome....MiMi in sorry that you are dealing with so much right now...I also have had different medical issues too....have back problems right now that I am trying to figure out what is going on with me...

I also have vision issues....dry eyes, watery eyes, burning, itching....I blame this on the time of year...and allergies...I also have the chronic fatigue which I have had now for a long time....I have found nothing so far that has helped it either...the doctor tells me there is nothing that will help....but I continue to keep looking...

I have also had the hand problems....carpal tunnel in both...which I have had 7 hand surgeries over the hands also use to feel *swollen* but to look at them...they were not...and I had the burning sensation as well...over the years though this has improved...

Perhaps you should have your doctor check you I am like just might have something else going on...

FM is a very ugly and mean illness though....I do know this...and strange things can happen...

I would encourage you also to get your doctor to check your Vitamin D level....which is important to a lot of people these days...low Vitamin D can cause additional pain for some of us and it can also affect other illnesses as well..

I also hope you will check out the info under *tips* and *resources* that you will find to the right of this page...
I am sure you will find something that perhaps you might try that will help you cope better..

Learning how to keep you level of stress is also well as getting enough sleep...this can also affect how you feel....(been there, done that)..

Learning how to pace, pace and pace even more is also important...

I hope you will keep us updated on how things get with you....take care and good luck...


My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
Frustratedintennessee replied to dollbug's response:
I too have has some of the same symptoms. I have chronic Fatigue. I never feel good anymore but some days are worse than others
I have the loss of vision and optical migraines. My wrist, ankles, knees and face at times feels swollen and I feel like my whole body is puffy. The only thing I can tell by looking is my rings sometimes are tighter than others. The palms of my hands and the bottom of my feet hurt, burn and itch most of the time. I too have the back problems (4 bulging diskin my neck and 2 in my lower back) all from a car accident in 2008. I have noticed alot of different things on different days.
I have noticed that everyone that has FM has some of the same symptoms but some of us have some different symptoms to go along with those.
roolyn replied to Frustratedintennessee's response:
Thanks for the feedback and encouragement. I guess at this point my biggest concerns are the facial rash and burning (because it's a completely new symptom) and the joint pain and swelling in my fingers (because that seems more indicative of actual inflammation). Has anyone begun to experience these symptoms and ended up being diagnosed with something like RA or lupus in addition to the FM?
unhappybeoch responded:
Hi, I also am kinda new here. And I understand what you are going threw. I burn very easy, Like in a 5-10 minutes time. And all these problem that go with the FM is confusing. One day I feel good and start doing things, Then I'm totally drained of energy within a few hours. Other days, I don't want to get out of bed. I feel like I'm in a fibro fog 90% of the time. And then the hot flashes. I was told it's the meds, But had them before I started taking the meds. The burning pains are in my arms and hands, was told that's from arthritis in my neck. And I also had a scare, This week, with one of my eyes. woke up to seeing everything red from one eye. But it went away within a few moments. Last year bled a few drops of blood from both eyes, Funny because my son asked if I was posessed ( sorry bad speller here) But it's hard keeping up with all the different thing FM causes. I just take each day as an adventure. Laughing about my aches and pains and just trying to keep a good additute. Doctors don't know what to do with me either. But I know, the last few years, things have gotten worst and it's either cry or laugh about my medical problems. I took the harder of the 2. I laugh and wait for the next pain or thing to happen. The pain isn't going away, but I refuse to let it get to me anymore. Plus, I think I'm all cried out. Sorry, I'm Theresa from Chicago.
1wareaglefan replied to roolyn's response:
I have heard of people having a "false negative" test or even several negative ones, then come up positive for RA or lupus. I'd keep getting it checked. It doesn't sound like fibro to me. (I am not a doctor, just offering my opinion).
xperky replied to roolyn's response:
roolyn - I would keep a journal of these new symptoms. The facial rash, redness and swelling do really sound like something outside normal FM to me, but I'm not a doctor either. Have you started a new medicine recently? Anything with these as side effects?

Sometimes it takes months, or even years, of having symptoms to get diagnosed with a rheumatoid disease. The blood tests are only one piece of the complicated puzzle. A rheumatologist might be a specialist to help you in the future. In the meantime, keep yourself comfy.

I was diagnosed with FM almost two years ago, and recently diagnosed with RA, as new symptoms appeared along with the original ones. No fun, but at least I'm being treated by a seemingly competent rheumy.

Good luck to you, and I hope you don't have any more flareups.
With Compassion,
roolyn replied to xperky's response:
Thanks everyone.

Since my initial post last week, I've developed even more symptoms. And I have remembered some symptoms I've experienced in the past that could possibly be related.

New symptoms: tender skin on scalp that feels like a sunburn, "flank pain" that migrates but mostly is centered near my left kidney, extremely heat-sensitive red rash on my upper chest that hurts when shower water hits it, acid reflux at bedtime (every night for a few weeks now).

Past/continuing problems: significant hair loss that began in my early twenties (permanent, so far), extremely allergic to sulfa drugs, unexplained gallbladder pain (no stones), and what one dr called an "exuberant" immune system -- leading to prolonged swelling of lymph nodes and rapidly developing ear infections (my last ear infection ruptured my ear drum within hours of its beginning and eventually traveled into my inner ear as well . . . my ear, nose, and throat specialist said that it was one of the worst he'd ever seen).

1wareaglefan: I have also heard that it's possible to have negative blood work at one point that later changes to positive. I'm hoping my doctor will listen to my symptoms with an open mind and consider the possibility that the blood tests may not be the last word on my condition.

xperky: Thanks for the suggestion. I have now started keeping a journal of my symptoms, activity level, and what I eat. I have an appointment in one week with my family doctor, so hopefully the information in the journal will be helpful. I am not taking any prescription medications, though I am highly allergic to sulfa drugs and had a severe reaction as a child. Knowing what I know now about lupus, I wonder if this sulfa allergy could possibly be one more small piece to the puzzle of what is going on with my body right now.

I appreciate the caring and support that the members of this board seem to show for each other. Thank to everyone who has responded to my post. We'll see what my doctor says next week, and go from there.
dakotaspirit1957 replied to roolyn's response:
Hi Roolyn... I don't have much to add but I just wanted to say that I have been thinking about you... I pray you are soon to find out what is happening and find some relief... I am one with multiple illnesses and even tho it is depressing to hear there is one more thing wrong... It is much more satisfying to hear there is a reason for all this... To get answers is such a relief... I will pray for you and those Dr's and nurses helping you... And pray you are blessed with improvement soon...

Take care... Love... Jan/Dakota

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