Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS).


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Old 04-27-2012, 07:47 PM #1
guitargal guitargal is offline
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hi everyone. thanks for letting me join.

I like to garden, play guitar , sew , hike and fish..and work on our fixer upper house, ie. paint, help my hubby..

when this started i felt like i lost a friend... me! still do. depressed.


over the past few months i have been looking for a reciprocating educational and helpful support community. this is the 3rd i have joined..
Guess i need lots of support!

so i will meander here looking for knowledge....

and basically my story is i started having stabbing ankle and wrist pain in August of 2011.. then full body episodes in Sept 2011..

I was seeing a new to me Dr right before this started. I didn't like her.she didn't know what to do and would not prescribe pain meds ...so i stayed in bed crying for 3 months. gobbling advil and lorazapam because i was so upset..getting even test done to man..

went to naturopath and tried supplements for 2 months..nada.

finally got a good Dr.Dec 5th and he gave me pain meds for relief thank you Dr!..i was out of my mind in pain...

He also started me on Cymbalta...i have been on Cymbalta (30 AM/ 60 pm ) for 5 months . went well ....for a few months

then added lyrica for the past 3 . only 50 mg a day (25 am 25 pm ) because when i tried to go up to 75 i got bloated and the edema started.

I have not had as many full body pain episodes i call Attacks because it is not a flare up.. they were / are full fledge scary things.. so the drugs are helping but my mind is now messed up. I am getting more depressed and am so tired i can't do too much. even taking a nice bath is tiring.

1. i will have pain with energy..(arm and wrist and can't do much and get mad)
2. i will have no energy and less pain and too tired to get out of bed.

3. once in a while i will have energy and less pain and i do stuff and feel almost normal.
4. next day i pay..

I have no appetite and eat like an english muffin and a yogurt/bananna smoothie throughout the day and then a small dinner.

I want to go off these drugs and just deal with the pain..try something new.

I want to go off the Lyrica because i don't even think i am on a dose that is enough to give relief and i have vision problems i think.

I want to go off the Cymbalta because something changed in my depression
(never took antidepressants before because they always made me feel like a zombie)
The Cymbalta was good for a few months. it helped me not be so upset about my condition.. perhaps i will go down to 60 again?


I am starting to feel like a Zombie. shuffling through the house moving slow ..air head.
(when my back and neck are in a flare i walk like Groucho Marx!!)

I can't fall asleep and when i do i sleep for 10 or 12 hrs and wake up like i am coming out of anesthesia.

sometimes my naps are from 4pm to 7 pm. totally tired.

so that's my story.
i need advice on this drug stuff.

thanks for listening

guitargal
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Old 04-27-2012, 11:08 PM #2
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Hi,
Some of the arm & hand stuff sounds a bit like thoracic outlet syndrome (TOS), did you used to have a repetitive job and/or hobby , like guitar??

If you want to read more about TOS we have a pretty active forum here at NT.
And sometime fibro & TOS go hand in hand.
http://neurotalk.psychcentral.com/forum24.html
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Old 04-27-2012, 11:40 PM #3
guitargal guitargal is offline
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thanks, i never heard of it..
all i can say is i worked hard all my life. 20 years of waitressing, 12 years seasonal garden center work. raised a kid on my own. guitar 20 years.
lived in NYC 6 years and walked everywhere..miles on concrete..
it's like my body just said stop. leg pain started in 2001 lots of charley horses and weakness too.
thanks again people
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Old 04-27-2012, 11:57 PM #4
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Please visit our Peripheral Neuropathy forum.

http://neurotalk.psychcentral.com/forum20.html

Sewing, guitar and gardening? Lots of strain on that carpal tunnel! Also in the feet? This happened to me, when I was going hypothyroid. Low thyroid leads to tarsal and carpal tunnel syndromes due to compression from tissue that gets deposited there from hypo thyroid metabolism.

Also do you use RoundUp or spray herbicides/insectacides in your garden activities? These cause neuropathies and nerve toxicity.

And painting? Solvents can over time defat the nerves and cause damage.

Do you wear the typical wrist splints for carpal tunnel at night?
I'd suggest you try them, as they helped me alot back when my carpal tunnel was horrific during my pregnancy years ago.
I had an EMG in my 5th month, showing 80% loss of motor hand action. I wore the splints 24/7 until I delivered, and then only at night when I have a flare now.

Very common in chronic nerve damage is low B12 and low Vit D.
Here is my B12 thread, explaining how B12 is poorly interpreted by doctors, and how to supplement it:
http://neurotalk.psychcentral.com/thread85103.html
Doctors still use the old very low ranges, in US, so if you have testing, get the numbers and make sure you are at least 400 US units.

Low blood sugars, or wide swings from high to low are prediabetic and starve the nerves and other tissues in the body.
So watching sugar intake can help with this. Eating small meals, with snacks during the day is better than skipping meals.
Our PN forum has many tips on PN. There are over 100 causes of PN, and part of the problem is finding your particular triggers and avoiding them.

You can be damaged from antibiotics (Cipro, Levaquin, Avelox, Flagyl) or even vaccines. Statins for cholesterol also damage nerves. So even if you had Cipro in the past, today's damage can be due to it. There are many damage sites on the net today about these antibiotics alone!
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