Posted 11/1/2014 4:02 PM (GMT 0)
Hello!
It has been very interesting reading all your posts. Let me start by saying, my heart goes out to all who are dealing with this illness---at the same time, it is awesome how much support there is on this forum for one another. Your experiences and strengths you share have really resonated with me and given me a sense of hope that I am closer to being diagnosed and no longer having to question my sanity---as I have over the past 5 years. Surely, many of you can relate to that point at which a doctor has finally put the pieces together: so close to some kind of confirmation---but, still so many other similar conditions that have to be ruled out.
The top 'contender' in my diagnosis is FMA, but, still have to rule out Lupus, RA, Epstein Barr, and MS. All I hope is that whatever the diagnosis is that no longer having to explain myself to people when asked 'how are you? or "Can you join us?'. The anxiety of planning ahead to attend anything social, any activity (shopping, or doctors appointments, working out, etc) knowing chances are, I will have to back out, or cancel because I just don't know from one day to the next how I will feel. I hope with confirmation, that anxiety will go away and I can also feel a confident, happy part of myself again--despite the fact that whatever this condition I have is may never fully go away.
So, I am in the process of scheduling a visit to see a Rhuematologist, Neurologist, and Physical Medicine practitioner---as suggested by my Doc.
When I broke into tears while talking to my Internal Med Doc, he just looked at me and said "We are assembling the team and we will figure this out." Wow. I feel so blessed to have found this doctor. Love him. He is a DO and a Psychiatrist, so , thankfully, seeing a mental health doctor in this process is already taken care of. He feels quite confident the culprit is FMS...it's not in my head.
I was seeing a social worker because my families belief is that my health issues are stress based and my own personal feeling was that they may be right--plus, I know myself that I am depressed as a result of feeling so crappy all the time--for sure. She is a great coach, and I plan to see throughout this process (when I can afford it).....because the one thing I (personally) feel would help me is to learn how to take the focus off the pain--and take the complaints of the pain out of my general daily conversation because I can understand that my grumbling is negative energy I am putting out there (not fair to friends/family) and there is no reason for me to energize and reaffirm/reinforce my pain constantly in daily life by being consumed with it. ....Meanwhile, I feel it is imperative to be able to talk about it with people who are living it and those who are helping medically. In a challenge like this...seems to me, the best support is from those who truly understand.
Anway, that is where I am at right now---up in the air, but, feeling like I am getting closer to an answer and trying to get some coping mechanisms in place. I've started here (this forum)---and know I will truly appreciate and relate in some way to everyone's posts---this appears to be a great place to just 'unload' a bit, compare notes, feel supported, great info on the tried and true.....very thankful to have found this forum:)
My SYMPTOMS are constant upper back and neck tightness and a few shooting pains here and there, lower back (same thing), shoulder area, hands, knee: I was a bodybuilder for 20'ish years and some of this pain is the result of many years of intense training with heavy weights---but, there are the pains that feel more like muscle strain or soreness...for no apparent reason (I am no longer bodybuilding--but stay active as my energy allows). I am learning to weed through the pain of old injuries vs the new-weird-undefinable pain in those area's. Quite mysterious how it seems to randomly rotate thru your body.
Before the body aches and stiffness arrived, it was my digestive system and incredible fatigue/forgetfulness/fog and many days where I just couldn't get out of bed. These symptoms were most prevalent (over pain)...but, often accompanied by erratic body aches. --- I just figured it to be the arthritis or laying around too much (no energy) until the quality of the pain started morphing into something I couldn't clearly define as joint, tendon, or muscle pain.
The digestive issue is about 75% dealt with at this point. Will be tested for Gastroparesis as soon I sched the test. I just read that there is consideration that there may be a correlation to GP and FMS....not sure how credible the source was.....so much information floating around on this topic...weeding weeding....!
Lastly..the weird things over the years....sudden dizzy spells, nausea, new allergies popping up:food and chemical products, certain odors, light sensitivity, audio sensitivity..........dry eyes, always thirsty, always have to pee, (sugar came back okay), yeast infections, the feeling of a bladder infection--but, tests always normal. memory problems, focus problems.....and blah blah blah....the list goes on.
The thing that complicates this is that I am also perimenopausal (many symptoms that cross over)....How I (and sure we all) wish there was just a simple test that would rule out/diagnose these conditions that are so obscurely similar to others!!!!.......Maybe some day, lets hope.
Sorry so long....just starting the journey and my mind is whirling...I am all over the place.
Thanx to anyone who attempted to get thru reading this long winded post :)
Hope you have a peaceful day.
K:)