Technical Difficulty Please Stand By

themorningstar3:

I have Fibro not CFS but this totally describes my brain when things get bad.

Originally posted on Fibromy-Awesome:

A couple of weeks ago, I lost my head. It happens sometimes.

I call it spaghetti brain, and it happens when I’m in a crash or when I’ve overdone it somehow. My body gives out, and then my mind follows suit. I had a stressful few weeks and my mental agility dulled until I could hardly say my own name without stumbling over it. It’s difficult to explain, but when these cognitive issues flare up,  trying to think and speak makes me feel like a car with the gas and the break petals pressed to the floor at the same time. My thoughts come fast but fragmented, my words emerge slow and tumble over each other, and half the time the wrong words come out altogether. My brain feels like it’s on fire, and so many times I’ve had to just sit in a dark quiet room to cool it down…

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Right Hand/Wrist Issues

This is becoming a problem.

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It’s been a long time since I’ve seen actual swelling. Being on immune suppressant drugs daily and anti-inflammatories as needed I don’t see it often. I see my Rheumatologist on the 13th, I will be addressing it with her then. It doesn’t just hurt, pain in and of itself has rarely made me worry. Losing strength does.

March 25th, 2014

Pain Level: 8

I’m very tired today, body feels weak and shaky, kind of like when you get the flu. Hands and wrists are moderately painful. The “knot” where shoulders, neck and back meet is throbbing, not super painful because I am laying down but it will if I do too much. Eyes have been really dry.
Shoulders,neck and upper back have been really bad over the last few days. Hips have been extremely painful. Knee’s and ankles a dull throb. Ugh. On day two of Naproxen (500mg twice a day), hopefully in another couple days I will feel better.

October 7th, 2013

I’m back from one of my usual breaks. No matter how hard I try I can’t seem to write EVERY day and stop for months at a time in a pretty regular cycle. My most recent discovery is that really warm weather makes me really sore, the high pressure doesn’t get along with my joints. Still not as bad as when the weather turns crappy like it has been the last few weeks. LOTS of rain, seems Mother Nature is making up for the dry summer. With the cooler temperatures the pain and stiffness, particularly in my hips, feet, shoulders and hands. Certain joints in my feet have been giving me grief. The Raynaud’s Phenomena in my feet has gotten steadily worse, my toes are pretty much icicles all the time now. Drives me bonkers, I hate it. The cooler weather has also woken up the pain in my upper back, so I’ve been feeling pretty sore and tired and frustrated. There’s been no change in medication or anything like that. My body has almost completely reverted to it’s super food sensitive state. In December I will be going back to see my Rheumatologist, so I’m looking forward to that. Psoriasis is getting more noticeable on my scalp and eyebrows, still very mild though all and all.

A Doctor’s Letter to Patients with a Chronic Disease

Originally posted on Pain. I Has It.:

ProHealth.com/Rob Lamberts, MD/July 31, 2013

Dear Patients:

You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?   How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?   How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can’t…

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