Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

@pamelars60

Hi there. I have several , ( dare I say, weird ? ) diagnosis. I have Ehrlos-Danilo’s, Mast Cell Activation, Fibromyalgia, Dercums Disease. I have multiple allergies, kidney damage, due to Rhabdolyosis and several weird, or unusual health issues. I am looking for information regarding managing my MCAS. I do not have a specialist yet, who has experience in managing MCAS. I have seen several Hem/Onc docs, but none that have had patients with the MCAS, just mastocytosis patients. So I am trying to ‘wing it’, and looking for support and information. Thanks

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Hello @pamelars60 — welcome to Connect. Thank you for posting and sharing here on Mayo Connect. It's a great place to ask questions and learn what others with similar health problems are doing for treatments. There is a Mast Cell Activation discussion here on Connect that you find helpful to read through: Here is a link to the discussion:

https://connect.mayoclinic.org/discussion/mast-cell-activation/bookmark/?ajax_hook=action&_wpnonce=008121fd0c

Here is some detailed information on Mast Cell Activation Disorder: http://bit.ly/2jkDjWH; and if you would like to read about Mayo Clinic’s approach, please click on this link: http://mayocl.in/2jtjyyB

In the meantime, I would like to introduce you to @kanaazpereira, @dolan, @mjgarr, @denisefeddersen, @mepslissy, @jools, who have all talked about MCAs and/or mastocytosis, and I hope they will return with some advice.

Since MCAS is often found in patients with Ehlers–Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS), I wonder if one of our mentors, @kariulrich would have any insight?

John

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Hi I am daddylonglegs. I have CRPS and have had it for 21 years now and i am 61 yrs old. It started after a forklift crush injury to my left ankle and over time has spread to my hip. I look forward to seeing how others cope with their chronic pain. And to share some of the tactics i use which ones work and which ones dont

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Hi @daddylonglegs! Welcome to Connect and I am certain that after 21 years you will have some very valuable info to share with all of us. Hopefully we will do the same. My pain is caused by chronic pancreatitis and scar tissue from having part of it removed 4 years ago. and I almost never get full pain relief and that is not even my intention after this much time. If narcotics, meditation, prayer, and minimal exercise can keep me below 4-5 on the pain scale, I am OK. Not great, but it is my normal, I think. Again, welcome

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Hi victorious69 here. My subject is shoulder tendonitis. Where did I start? Hubby of 79

@colleenyoung

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Chronic pain is so discouraging when there seems no hope in sight. Really been in a lot of pain and nothing to do except feel it. Definitely not fun for any of us. This thing once called life has lost its glimmer.

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@parus

Chronic pain is so discouraging when there seems no hope in sight. Really been in a lot of pain and nothing to do except feel it. Definitely not fun for any of us. This thing once called life has lost its glimmer.

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I feel like this at times but we just have to keep on,keeping on don't we

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@parus

Chronic pain is so discouraging when there seems no hope in sight. Really been in a lot of pain and nothing to do except feel it. Definitely not fun for any of us. This thing once called life has lost its glimmer.

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Parus (@parus), your drawings are beautiful and I wish that you could use drawing to ease the pain. When you are in pain I know it's hard to think of anything else. Don't lose the glimmer in your art! One day at a time – hoping for a pain free day for you and others.
John

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@parus

Chronic pain is so discouraging when there seems no hope in sight. Really been in a lot of pain and nothing to do except feel it. Definitely not fun for any of us. This thing once called life has lost its glimmer.

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Yes Parus I love your art work can you just immerse yourself in your art?

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@parus

Chronic pain is so discouraging when there seems no hope in sight. Really been in a lot of pain and nothing to do except feel it. Definitely not fun for any of us. This thing once called life has lost its glimmer.

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I chronic back and leg pain. Could Gabapentin or Tramadol cause diarrhea? I also have pain on my "tailbone" when I sit.

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Hello
I have Chronic pain, after fusions to my lower back and Clavicle. After past surgeries on several medications and a pain stimulation inplant (this helps dealing with pain it doesn’t make it go away!
I recently tried Yog, made it even worse!
Stretching daily, not walking long distance !
Waiting for my disability to come through so I can go to another specialist out of my current location..

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@janiss

Hello
I have Chronic pain, after fusions to my lower back and Clavicle. After past surgeries on several medications and a pain stimulation inplant (this helps dealing with pain it doesn’t make it go away!
I recently tried Yog, made it even worse!
Stretching daily, not walking long distance !
Waiting for my disability to come through so I can go to another specialist out of my current location..

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Trade in that stimulator for an implanted pain pump and get some real relief. Drugs from a pump are 300 times more effective then what you put in your mouth. 3 mg of Dilaudid a day drift into your spine does a lot to make pain manageable

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Needing relief after attempting yoga, years of medication, surgery’s, icing

Liked by Parus

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Hi @janiss,

I merged your message about "needing relief after attempting yoga" with your earlier post in this discussion, so that you could reconnect with other members here.

Although yoga has far more potential to heal than to hurt, yoga injuries are not uncommon. The most basic of yoga poses call for a certain amount of skill and proper alignment. You might be interested in reading some of the posts in this discussion, started by Mentor @sandytoes14, where Connect members share what works/what doesn't:
– What Distracts You From the Pain? https://connect.mayoclinic.org/discussion/what-distracts-you-from-the-pain/

@janiss, may I ask if you consulted your doctor before starting yoga?

Liked by Parus

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@janiss

Hello
I have Chronic pain, after fusions to my lower back and Clavicle. After past surgeries on several medications and a pain stimulation inplant (this helps dealing with pain it doesn’t make it go away!
I recently tried Yog, made it even worse!
Stretching daily, not walking long distance !
Waiting for my disability to come through so I can go to another specialist out of my current location..

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I have a back fracture as well as other back issues and fibromyalgia and stretching is the only thing I can do Thi Chi is suppose to be good also .

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@kanaazpereira

Hi @janiss,

I merged your message about "needing relief after attempting yoga" with your earlier post in this discussion, so that you could reconnect with other members here.

Although yoga has far more potential to heal than to hurt, yoga injuries are not uncommon. The most basic of yoga poses call for a certain amount of skill and proper alignment. You might be interested in reading some of the posts in this discussion, started by Mentor @sandytoes14, where Connect members share what works/what doesn't:
– What Distracts You From the Pain? https://connect.mayoclinic.org/discussion/what-distracts-you-from-the-pain/

@janiss, may I ask if you consulted your doctor before starting yoga?

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Yes he thought it might help. The instructor made sure everyone was doing it properly.

Liked by Parus

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