Old 07-29-2016, 02:54 AM #1 (permalink)
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Default Newly diagnosed with fibro -- Agoraphobic with PTSD

The title seems a little silly but I didn't know what to write... haha

Hi!
I'm 28 years old and was just diagnosed with fibro by my rheumatologist on Monday.
The pain has been around for a long time but recently got much more noticeable a few months ago.
(As a possible point of reference as far as pain goes... getting a tattoo on my collarbone a year ago was about a 2 on a pain scale for me because chronic pain was constant and much worse. I almost took a nap during it! I've always had a high pain tolerance because I was always in pain and cursed with 2 to 8 migraines per day-- always unmedicated and straight edge.)
2 weeks ago, I had a new 10 to add to my personal pain scale.
I was sitting in bed and had the sensation that my kneecap had dislocated somehow and was being torn from my body, through my skin-- and the bottom half of my leg felt like it was in the pricess of being sawed off with a rusty hand saw. I cried in my bed for about an hour until the pain subsided and went back to the usual dull pain that I feel.

I had been seeing a neurologist (a terrible one, might I say.) for the past 7 months, for facial numbness that I have been experiencing for the last 2 years.
The left half of my face is completely numb to pain/hot/cold/friction/wet/dryness and my left eye is also numb and has lost part of it's field of vision. The left optic nerve is also swollen up to 4 times the size of the optic nerve in my right eye.
I've been passed around from specialist to specialist, done 8 rounds of MRI's with and without contrast and monthly bloodwork to try and figure out what is wrong with me.

10 minutes with this rheumatologist and having looked over the timeline and list of symptoms that I prepared for him-- as well as poking me all over; and he strongly believes that I have fibro.
I went for blood testing the next day to rule out anything else; as usual, nothing obvious popped up... so here I am.

I'm not completely convinced that fibro is my only diagnosis but I am glad to at least be able to put a name to this pain and begin trying to treat myself. At least I have an idea of where and how to start now.
I'm still doing my research.


Oh! I didn't even get into my mental health at all so I'll just describe it very briefly. Haha
I've been suffering from post traumatic stress disorder since I was about 6 and have seen many, many therapists and tried many therapies without much luck, yet.
I'm also agoraphobic and terrified of people and of leaving my room. The longest time I've gone without leaving my room, even for the use of the washroom was 7 months. The longest time I've gone without leaving the house was 4 years. I do try to get out regularly for grocery shopping errands or even just to ride with my mother while she gasses up the car or grabs a coffee.
Having recently moved from a small town where I was comfortable-- to a much more densely populated, more dangerous place has put a lot of stress on me and I'll admit that I haven't been getting out nearly as much as I was a year ago. I also don't get anywhere near as much exercise as I used to in-- have gained weight and lost all my muscle but I'm too scared and exhausted and fatigued to do much about it.
I'll just have to try to do better!!

Thanks for reading my long, boring story-- I'm glad I found this forum!
Cheers.
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Old 07-29-2016, 09:40 PM #2 (permalink)
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Default Re: Newly diagnosed with fibro -- Agoraphobic with PTSD

Hello CrazyCatLady, Welcome to the forum. I was just wondering if you have had tests for blood sugar levels and high blood pressure? I am only asking this because of the eye problems you are having. As for your knees I have experienced terrible muscles contractions and spasms, and swelling and pain that has made walking difficult. Once several years ago I had been having terrible trouble with leg pain and one day as I was sitting in my chair I had the oddest feeling like someone was pulling the pain out of my legs and knees like someone had attached a rope to it and was dragging it out. When the feeling went away I was able to get out of my chair and walk without pain. So never give up and praying will help. In the meantime try using a heating pad on your knees and socking in a tub with ebson salts helps. Staying cool but not cold can be a big relief. Best of luck, this disease is so strange and each person is different in symptoms but coming here helps by just knowing your not alone.
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Old 07-31-2016, 12:29 AM #3 (permalink)
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Default Re: Newly diagnosed with fibro -- Agoraphobic with PTSD

Quote:
Originally Posted by 1sweed View Post
Hello CrazyCatLady, Welcome to the forum. I was just wondering if you have had tests for blood sugar levels and high blood pressure? I am only asking this because of the eye problems you are having.
Hi- and thanks for the reply!

I have been tested for pretty much everything and have vitamin and sugar levels in my blood tested monthly-- for the last 10 years, as I've always had 'mystery' health problems and was terribly anemic in highschool.
My blood pressure is normal and none of my blood tests have been flagged for being high or low apart from a low white blood cell count by a small margin under the low end of the spectrum.
My vitamin levels tend to be within the last decimal of the low end of the spectrum but still considered 'normal'. Nothing 'obvious' is wrong with me.

I had an optometrist and opthalmologist examine my eye a number of times and do scans of the inside of my eye; orbital views via MRI and ultrasounds on numerous occasions but as my bloodwork seems fine and bloodsugar is normal, no one can see that there's anything inherently 'wrong' with it.
...apart from field of vision having a huge blackout area and the whole eye and eyelid being numb and the feeling of broken glass that I have that doesn't go away; in my eye.

I've read that the numbness in my face could be bells palsy-- had that tested AND it's been months and months and the last time it happened; I was already on antibiotics and anxiety meds and it didn't go away and this time I'm unmedicated so... I don't know... and none of my 4 doctors or 3 specialists seem to know, either. haha



I'm glad I'm not the only one with weird, crazy pain... or I would be really worried!
None of what I'm feeling seems okay anymore. The constant body pain really sucks.
I used to go on 40 kilometer hikes all the time and yesterday, I couldn't walk at all.
It's scary...
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