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Old 07-24-2011, 08:49 AM #11
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My Vit D level was low, but for over a year it's been much better..this last blood work it was 70. My neuro told me to continue with the dose I take and to not take a lower dose in the summer time.

Rosie, I do not think we are flukes of nature. We are a product of the things that go wrong in our world. We just happen to be more sensitive to things than some people.

I just read this morning that celiacs whom went years without knowing what was wrong, have the chance of developing several autoimmune diseases. How sad is that? Always something to brighten my day.

I'm thankful that my fibro seems pretty stable for now and I hope it stays that way!
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Old 07-24-2011, 10:19 PM #12
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For myself and many here I don't feel it is a fluke either. Just too much odd stuff that pre condition did not happen. I feel if doctors would make more connections between problems happening it would really help. The problem is that each specialty does not like to go outside that.
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Old 08-01-2011, 10:53 AM #13
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Januarybabe,

You are one of the very few people at this forum that have posted about having allodynia (unless I've missed seeing others). Is yours due to the texture of certain fabrics, the pressure of clothing/bedding?

I still have some residual to denim or coarse fabrics but not to a lot of my other clothes anymore. I wear a pettileg slip under the linen crop pants and Land's End silk longjohns in cold weather under the corduroys, denim and other pants/slacks.

Thanks,

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Old 08-01-2011, 08:16 PM #14
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Default Fibro and PN

Ten years ago I was finally told I had Fibro and was prescribed Zoloft and Celebrex. I guess I got some relief, with flare-ups minimized. Just when I thought I had the Fibro thing figured out, I was diagnosed in March with PN and prescribed Lyrica.
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Old 08-01-2011, 10:56 PM #15
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Quote:
Originally Posted by mrsD View Post
My understanding of this from the recent medical seminars I attended is that Fibro is a central pain disorder.

It can be triggered by anything that sets up a pain sequence.
Listed were
Trauma --like a car accident.
Arthritis
PN
Infections
Vaccines

We were told that trigger point diagnosis is no longer valid. And that Fibro was basically like having a radio on full blast with no volume control. Eventually small signals from the periphery get magnified in the brain and read as a higher pain level than really exists.

Also that it runs in families, and that an 8 fold occurance is possible if family members have it.

So yes, PN and Fibro can exist together. The PN would be the trigger for the Fibro.

Research is still ongoing about it.
Thats interesting , mrsD because my pn came to fore round the same period I started working on a do extensive prioprioception work to help my HMS , and all round chorinc connective tissue issues.

In fact ive probably taken that (without boosting )to level way beyond most are capable of given what i can do / have to do just to get by.

It makes me wonder then, if theres way of measuring the proprioceptiors in the periphery ( im assuming FMRI is one way ) that might show any relationship between the two ?

http://en.wikipedia.org/wiki/Proprioception



Basis of proprioceptive sense

The initiation of proprioception is the activation of a proprioreceptor in the periphery.[10] The proprioceptive sense is believed to be composed of information from sensory neurons located in the inner ear (motion and orientation) and in the stretch receptors located in the muscles and the joint-supporting ligaments (stance). There are specific nerve receptors for this form of perception termed "proprioreceptors," just as there are specific receptors for pressure, light, temperature, sound, and other sensory experiences. Proprioreceptors are sometimes known as adequate stimuli receptors.

Although it was known that finger kinesthesia relies on skin sensation, recent research has found that kinesthesia-based haptic perception ( This is basically what i used to help myself ) relies strongly on the forces experienced during touch.[11] This research allows the creation of "virtual", illusory haptic shapes with different perceived qualities.[12]
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Old 08-02-2011, 01:00 PM #16
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[QUOTE=Sheltiemom18;791707]Januarybabe,

You are one of the very few people at this forum that have posted about having allodynia (unless I've missed seeing others). Is yours due to the texture of certain fabrics, the pressure of clothing/bedding?


I seem to have all kinds of allodynia. My waist feel like sunburn and pants rub the "sunburn". The texture of clothing bothers me for things like denim. I have a system of wearing cotton dresses. In colder months I wear boots with dresses. When it is very cold I find some nylon tights that are somewhat tolerable and wear these under dresses.

Sometime my arm or leg feels warm. That is one of the few "good" feelings I get.

Unexpected things happen. I have gotten electric shocks from the metal push carts at Walmart. I now use a hand basket or go to Target that has plastic carts.

The shower spray sometimes causes stinging pain.
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Old 08-02-2011, 06:42 PM #17
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Can you explain to me what getting shocks has to do with all this? I get shocks all the time and I hate it. I had decided I must be an electric conductor of some sort!
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Old 08-03-2011, 05:58 AM #18
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Default Actually--

--a lot of us, over the years and many posts, have described symptoms of allodynia (pain from non-painful stimuli).

I certainly have experienced this during the most acute phases of my neuropathy attack., and still tend to get it in "flares" from time to time.

It is not uncommon in those with small-fiber involvement, in particular.
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Old 08-03-2011, 06:08 AM #19
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I found this in About.com this am:
Quote:
Pain caused by touch is called tactile allodynia, while pain caused by movement against the skin (i.e., the brush of clothing) is called mechanical allodynia. Temperature-related pain is called thermal allodynia.
I think I fall under the mechanical allodynia. I often call myself "the princess and the pea"...I can't stand things touching me sometimes, not all the time. Some days I can wear a necklace, other days I can't stand it touching me, or it weighs too much...can't stand sleeves touching my elbows, hate pants touching my legs, shoes can't be tight in any way.

Then I found this website about headaches and allodynia...very interesting. I hope it's ok if I post the link, if not, remove it:
http://www.achenet.org/education/pat...utshouldnt.asp
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Old 08-03-2011, 07:23 AM #20
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Quote:
Originally Posted by darlindeb25 View Post
Can you explain to me what getting shocks has to do with all this? I get shocks all the time and I hate it. I had decided I must be an electric conductor of some sort!
I think the electric shock might have to do with vibrational allodynia. The vibrations from the grocery carts get my hands to buzzing.
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