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» LymeNet Flash » Questions and Discussion » General Support » Ever hear of the MS hug that causes excrutiating pain?

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Author Topic: Ever hear of the MS hug that causes excrutiating pain?
healthywealthywise
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This is a new one for me as I've been awakening every day with the most horrible body pain that makes me want to scream out loud. And I'm a person who has proven they can withstand pain better than many.

This is different, new and I've found others online who describe it better though they don't know what causes it or how to fix it.

But it is torture that I usually awaken with as I lay on my side. The pain and crushing become too much, so I try to turn over to my back and it seems to spread where I lean on the bed. I think of it as like being crushed in a barrel around my entire back and torso, neck to bum but the entire encasement of my mid section is agony and it feels like my ribs, spine, muscles and organs are encased in a crushing pain.

How can a person handle this type of pain? My doctors hesitate to give me pain relief, because well, you know, many people get addicted or worst case, die.

I actually read one AMA spokesperson saying "It is not a doctor's role to eliminate pain, but to identify the cause of such pain." (paraphrasing here b/c I don't have the exact quote).

OK REP...I have just stuck a pen in your eye. Now my job is not to stop/eliminate that pain, but just to explain why you're having it, meaning "the cause". OK!! THE REASON YOUR EYE HURTS IS B/C I STUCK A PEN IN IT. NOW MY JOB ISN'T TO REMOVE IT BUT I HAVE IDENTIFIED THE CAUSE. THAT WILL BE $2500. I have never heard anything so stupid, so cruel and so immoral in my life!

Posts: 867 | From PA | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
Winter Park
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Radiolab has a podcast from August 27, 2012 titled "Ouch". It talks about how people have a difficult time discerning how much pain another person is experiencing. I also liked what a woman said about her experience with pain, that she didn't want to think about people not picking up on her pain. It would make her feel more alone.

Lyme has all these physical symptoms and then on top of that it is socially isolating. Listening to podcasts is a way for me to feel connected.

Posts: 30 | From Winter Park Florida | Registered: Aug 2013  |  IP: Logged | Report this post to a Moderator
Jordana
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I think you should go to the ER.

My reasoning:

Sometimes people have vertebrae that give out without warning. This is an outside of the box possibility for you but I would just go and tell them you have excruciating, sudden back pain and let them work you up.

1. You'll find out if you have a severe back problem.
2. Pain meds.

Posts: 2057 | From Florida | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
bluelyme
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Thinking kratom tea,cbd or phentonal

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Blue

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Jordana
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Good point, blue - cannabis!

HWW can you get a cannabis card in your state?

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healthywealthywise
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I've never heard of Kraton tea but when I looked it up, it's a plant used for pain. Wish I knew a reputable source to get it.

Jordana, in PA which is the Quaker State. That means anything that might feel good or make you feel better or even if it kills you is controlled by the state.

We still have blue laws for gosh sakes.....no cannabis here. They did pass it but say it will take more than 2 years to get it moving for sale. They have to take that time to get payoffs from potential growers and marketers. State's gotta get their $$$$$ first. Grrr. Plus, they have to coddle the pharma co's here to ensure their piece of the pie gets served. People suffering? Nah, let 'em move if they don't like it here. sigh.....

I had some once and it helped but I was even sadder when I couldn't get it anymore. [rant]

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Jordana
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Hey. In Canada, where it's illegal most places, there's a Dr. M who helps Lyme patients - he thinks Cannabis oil is a cure. But they can't use marijuana so they use this stuff --

https://www.bluebird-botanicals.com/

Good reviews. Worth a try.

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Tincup
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Ah HA! I just got done researching for the night, so this "find" is just for YOU!

As you'll see in this hot off the press article- acute and chronic pain hypersensitivity is caused by viruses.

Were you tested for any viruses- epstein barr, parvo B-19, Colorado tick fever, Powassan Virus, heart-land virus, HIV, Dengue virus, tacaribe virus, zika virus, west nile virus, tick-borne encephalitis virus, etc?

Just something to consider. Pain hypersensitivity affects a number of Lyme patients and when I saw this tonight I was wondering if it could be because of a viral co-infection.

Sorry you are in pain!!!


PLoS Pathog. 2016 May 11;12(5):e1005615. doi: 10.1371/journal.ppat.1005615. eCollection 2016.
Virus Infections Incite Pain Hypersensitivity by Inducing Indoleamine 2,3 Dioxygenase.

Huang L1, Ou R1, Rabelo de Souza G2, Cunha TM2, Lemos H1, Mohamed E1, Li L1, Pacholczyk G1, Randall J1, Munn DH1, Mellor AL1.
Author information

1Cancer Immunology, Inflammation and Tolerance Program, Cancer Center, Augusta University, Augusta, Georgia, United States of America.
2Department of Pharmacology, Ribeirao Preto Medical School, University of São Paulo, Ribeirão Preto, São Paulo, Brazil.
Abstract

Increased pain sensitivity is a comorbidity associated with many clinical diseases, though the underlying causes are poorly understood.

Recently, chronic pain hypersensitivity in rodents treated to induce chronic inflammation in peripheral tissues was linked to enhanced tryptophan catabolism in brain mediated by indoleamine 2,3 dioxygenase (IDO).

Here we show that acute influenza A virus (IAV) and chronic murine leukemia retrovirus (MuLV) infections, which stimulate robust IDO expression in lungs and lymphoid tissues, induced acute or chronic pain hypersensitivity, respectively.

In contrast, virus-induced pain hypersensitivity did not manifest in mice lacking intact IDO1 genes. Spleen IDO activity increased markedly as MuLV infections progressed, while IDO1 expression was not elevated significantly in brain or spinal cord (CNS) tissues.

Moreover, kynurenine (Kyn), a tryptophan catabolite made by cells expressing IDO, incited pain hypersensitivity in uninfected IDO1-deficient mice and Kyn potentiated pain hypersensitivity due to MuLV infection.

MuLV infection stimulated selective IDO expression by a discreet population of spleen cells expressing both B cell (CD19) and dendritic cell (CD11c) markers (CD19+ DCs).

CD19+ DCs were more susceptible to MuLV infection than B cells or conventional (CD19neg) DCs, proliferated faster than B cells from early stages of MuLV infection and exhibited mature antigen presenting cell (APC) phenotypes, unlike conventional (CD19neg) DCs.

Moreover, interactions with CD4 T cells were necessary to sustain functional IDO expression by CD19+ DCs in vitro and in vivo.

Splenocytes from MuLV-infected IDO1-sufficient mice induced pain hypersensitivity in uninfected IDO1-deficient recipient mice, while selective in vivo depletion of DCs alleviated pain hypersensitivity in MuLV-infected IDO1-sufficient mice and led to rapid reduction in splenomegaly, a hallmark of MuLV immune pathogenesis.

These findings reveal critical roles for CD19+ DCs expressing IDO in host responses to MuLV infection that enhance pain hypersensitivity and cause immune pathology.

Collectively, our findings support the hypothesis elevated IDO activity in non-CNS due to virus infections causes pain hypersensitivity mediated by Kyn.

Previously unappreciated links between host immune responses to virus infections and pain sensitivity suggest that IDO inhibitors may alleviate heightened pain sensitivity during infections.

Link Here- http://www.ncbi.nlm.nih.gov/pubmed/27168185

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