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Christina Frank

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DX FIBRO
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00/0000
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Hi there, I'm new here and was recently diagnosed with fibromyalgia by my rheumatologist. She didn't seem totally confident with the diagnosis but sort of as a way to "give me something" and send me on my way. This is going to be long but I would so appreciate some thoughts.
Here's some background info on my symptoms and how/when this all started.
Dec 3rd, 2014 I walked into class at my community college, sat down, and like a light switch was suddenly hit with crazy brain fog. Unlike I ever experienced. I thought it may be due to menstruation, and sure enough I started cramping a few hours later and had started my period. So i figured that was why. But the brain fog didn't go away when my period did, it kept up. Then it kind of went away for about two weeks and then randomly came back and this brain fog episode has never gone away since. This is not brain fog like slightly worsened memory or feeling a little off, it's like a constant feeling of being drugged or high or something. It rocked my world for he first 6 mos or so, ER visits, being bed bound (not sure if that was depression about what was going on, or what). I had a 1 1/2 year old child also so that was hard. Along with brain fog was slight dizziness/light headedness. Occasional tingling above my eyebrow, cold sensation on eyebrow. The brain fog has been number 1 symptom and effects memory and makes me slightly disoriented.
Fast forward to about a year ago -- pregnant with baby 2, symptoms the same but started to get sensation of swelling behind the knees, numbness in shoulder/arm when doing hair or makeup, always random areas. Not sure if this was pregnancy related, but I still have it now (8 mos postpartum) on and off totally random.
Newest symptoms are knee pain specifically when going up stairs, squatting, straightening/locking leg when standing and a bit upon pressure. Fatigue, irritable bowel symptoms, exercise intolerance, weight gain.

Here are tests/specialists that I have had done/have seen:
Cat scan - clear
MRI - clear
ENT - nothing of significance seen or noticed
EKG - clear
Countless blood draws testing for: vitamin/minerals, thyroid, general blood work, arthritis (and other autoimmune conditions like lupus, scleroderma, sjogrens... And least the general work for autoimmune), Lyme disease, etc. probably more but I don't remember.
Rheumatologist -- she ordered labs which were all clear, so she diagnosed me with fibromyalgia but she didn't seem to even take brain fog into account. This is what makes me skeptical -- she did the tender point exam, and I barely had any tender points.

This is the thing, I don't have many tender points like the diagnostic criteria states you should have 11/18. My pain is more random times, random places, nerve type of pain instead of tenderness. Also, I don't have widespread pain all at once, mine focuses on one area and comes and goes and moves around. My main symptom is still severe brain fog, but knee joint pain is getting bad. I know so many people have severe pain all over and I just simply do not but this brain fog makes me feel so crippled at times. Maybe this is mild fibromyalgia? Does any one have any similar symptoms or any thoughts at all?
 

Shyest

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Joined
Sep 12, 2016
Messages
17
Reason
DX FIBRO
Diagnosis
01/2014
Country
US
State
PA
Ah I wrote a long reply to you, but unfortunately my tablet is very angry today at me so I lost it.


I guess the short version:
Have a conversation with your doctor with *why* exactly she feels fibromyalgia is a diagnosis. Is she attatched to it? Does she feel that if new evidence arises that this can be reconsidered, or is in addition to whatever those results may be? It may just be helpful to have her opinion known.

If you really feel this isn't the right thing, you can order a copy of your records and take them and get a second opinion somewhere else. Either another local doctor, or if you could a more major medical center.

Did the room you remember this first happening in happen to have strange lighting in anyway? Some artificial lighting can trigger autoimmune reactions like the sun can.

I should mention the autoimmune workups blood wise are not definitive for diagnosis or exclusion of a diagnosis from the differential. Almost all the autoimmune connective tissue diseases (SLE, sclero, sjogrens, UCTD, etc) must be diagnosed based on clinical presentation of symptoms, patient history including family medical knowledge, the tests are part of a bigger picture. Pregnancy is also know in some cases to cause flares, be the source of the disease (so temporary), or very rarely relieve symptoms. So if your symptoms changed because of pregnancy that might be something important to keep in mind.

Also I would add, your other symptoms may be "mild" but if one of your symptoms effects you this much that's enough in my personal book to say you are "severe" - if it drastically alters your life that's not mild anymore, you feel?

Are the knee joint problems the only symptom you have related to joints? I'm gonna guess you are in your 20's so it would seem early for osteoarthritis but if the joint issues are confined to only one joint that might be the cause for the knee. I've come to learn osteo can be fairly complex on its own so even though your knee symptoms don't scream osteo, I hope your doctor did a joint fluid analysis for that joint.

I'm one of those people that prefers the non-tender point criterias for FMS. Some people prefer the tender point criterias because they give fibro something "unique" and help keep out people who have some other type of chronic pain from being included... Officially: the tender points are mostly included for diagnosis related to studies, and fibro is not a diagnosis of exclusion- which means you don't stop looking just because this is part of the problem you can easily have fibro and other comorbid conditions. I take issue with the variables of tender point examinations- a lot of physicians do not apply the correct amount of pressure. A lot don't have you stand- you are supposed to stand during certain parts of the TP exam. The points also vary in some people, I have most of them when I go - but one time I had 0. I still felt pain everywhere in my body, but the points didn't feel specifically painful with pressure. I have the tender points some of the time and sometimes I don't, but I still fit fibro most.

Maybe I'm biased but the criteria I prefer is from 2010:

Widespread pain in all four quadrants of the body often centering around the original 18 tender points, but the points are not the final say on diagnosis or not.
Cognitive symptoms, sleep disturbances, fatigue, and other physical symptoms
May include the Fm/a test results
Interview, patient history, and family history accounted for.

Additionally if fibro is suspected or diagnosed, the other overlap conditions or syndromes should be investigated for such as TMJD, IBS, headaches, migraines, anxiety and depression, environmental sensitivies . I also personally have encountered a lot of these: CFS/ME, EDS or joint hypermobility, MCAS, MCS, chiari malformation, Dysautonomia (particularly POTS, hypovolemia), PTSD, bipolar disorder.

Like other rheumatic diseases, diagnosis is complex, but I think a rheumatologist or a neurologist could be the ideal for caring for a fibro patient. In your case your neurological problems are your biggest issue, so do you have a neurologist you are working with? Maybe. You could find one that would be more involved in your care. They should probably do cognitive testing on you at some point by a pschologist I think?

Brain fog is a fairly big issue for me at times... It was sort of middle of the road as far as my problems went, it got much worse when I got CFS last year. I feel like I have lost a lot of IQ points in a sense... Or at least the ability to comprehend and do things and write and think and read and just function like a healthy young person should.


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