MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi Gang Having watched the greatest documentary movie ever, Under Our Skin,I realised I had left out in my wrightings to Social Security the the biggest problem I have,THE PAIN.
I gave them all the records explaining all the details of each thing that is wrong with me on a mechanical basis,but didn't say; IT FREEKING HURTS!!!
Recently I was keeping a day to day Lyme record,and realised I AM SO USED TO LIVING WITH PAIN I don't remember a life without it so I don't pay much attention to it any more.
I automatically adjust my day to work arround the PAIN of whatever is hurting BAD each day,without even thinking about it.
If i had never had Lyme and woke up with my every day PAINS one day, I would run straight to the ER crying in PAIN.
Strange this PAINFUL disease can change us to this extent.
MADDOG
Posts: 4083 | From Ohio | Registered: Oct 2000
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Absolutely MADDOG! One can live with pain for so long that they actually discount additional pain that signals another problem. Case and point, my appendix rupture.
When my appendix ruptured in October, it was a week before I figured out that something, other than a very bad case of The Flu, was going on. I got all sorts of flack from docs, nurses and others. I especially like the one, "Didn't it hurt?!" (Well, yeah it hurt, but I've been in pain for years! Why should this pain be any more exclusive that what I already have?) And the ridiculous string of questions continued ...
People don't get it. You can only explain so much, then it's completely fruitless. Finally I say something on the order of, "It's okay. You don't need to understand. Can I have another blanket and some more morphine, please? Thanks!"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i totally understand
i walked aroud with a fractured pelvis for weeks before i complained-and the it took them another 4 weeks to dx it
"you don't get it, until yu get it"
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
OMG! My broken pelvis and broken back went undiagnosed for months. like the fact i couldn't move wasn't enough to get pics!
MADDOG, Do you have a LLMD? If they deny SSDI for Lyme many Lymmies have filed under Fibromyalgia and got the benefits that way. It's so wrong but this is why the Lyme community if fighting for legislation to fix it all! You can help make a differenct too. visit the Lyme disease association website and they will show you how if you haven't already. You are not alone in your pain. Lyme Disease has made warriors out of all of us and having eachother to talk to on the hardest of days is so important. If there's anything I can do let me know. blessings, Trish
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I hated that when I was asked...on a scale of one to 10 what is your pain level today.
Sheesh. The pain is so great I am not able to move...but the brain was not working well enough at the time to say that.
other times it causes me to throw up and have the runs.
But, pain is not something that can be measured so what is the point?
The other lady who came down sick at work was swimming and walking and driving and flying...her comment to me...
she just has a higher thresh hold for pain than I do. Sheesh. She did not have a clue.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi Thanks for the support everyone.
I have this week sent a letter to a senator requesting that cronic lyme and interstitial cystitus be added to the Social security list of imparements. I ask for health care, and leave of absence pay ins. to get surgury,infuse antibiotics,ect.
MADDOG
Posts: 4083 | From Ohio | Registered: Oct 2000
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Hoping you get some good news from your letter. Very good points and yes...much needed.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
This is the kind of pain my son has. The kind of pain that you can't measure because it is too great, that never goes away, and that no one understands unless you have experienced chronic, excruciating pain.
What causes it?
Is it parasites, bacteria, virus or heavy metals, vitamin deficiency... if we knew the cause... we could fix it, right?
This is my quest.
Someone must have the answer to this.
What causes the pain?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
momlyme, I have always assumed the pain that was not localized in the joints, for instance, was due to the nervous system being infected with lyme. It is a neurological disease and pain comes from the nerves.
Posts: 8430 | From Not available | Registered: Oct 2000
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
for me the nerve pain is the worst...altho some arthritis---hands and fee is pretty bad too
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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I am now hiring a lawyer to help me get better pain mgmt. from my PCP since my LLMD can't help me manage pain,
They would shut down his office if he gave me prescriptions for pain.
The pain is like having all your skin sliced off with razor blades,
the pain is like swimming in a pool of shards of broken glass,
the pain is like shards of glass also floating around in your blood, tons of shards, in every vein and artery!
the pain is torture,
no one has a higher pain threshold than me, and i would definetly correct them if they tried to tell me otherwise! I was in a car accident and 10 minutes later I did an intense workout,
I was already in so much pain from Lyme disease, what more could a car smashing into the back of my car, giving me whiplash and other injuries do to me,
only high doses of morphine kills the pain,
I am stressed out because I have to go to my PCP tomorrow and try again to get her to help me manage the pain,
My feet hurt alot too, so bad, I can't even walk on them
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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