MS pain

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MS pain

Postby jerrygallow » Mon Apr 23, 2018 3:12 pm

I know this topic may stir up the proverbial hornets nest. But I have had multiple sclerosis now for nearly 12 years. Other than some initial optic pain, I have never experienced pain. I know that for a long while many doctors did not think that MS even caused pain. Now it seems that every forum I click on, especially on Facebook, people treat pain as the number one symptom. It’s probably the complaint I read the most. I wonder, somewhat cynically, if this is connected to the opioid crisis. I am not saying that people do not experience pain occasionally. This is a crazy disease. But I do not think that it is disproportionately the most prominent feature of the disease, as one would conclude from social media these days. As somebody who legitimately suffers with this condition, it offends me to think that people would use this diagnosis to try to nurse Some addiction. Thoughts?
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Re: MS pain

Postby ElliotB » Tue Apr 24, 2018 5:17 am

There are people that need it to manage their pain and others that abuse the system. I feel that anyone that needs it to cope with the pain should have access to it. I have a lot of nerve pain, at times excruciating and have found ways to deal with it. My doctor never suggested opioids, frankly I don't know if I would have taken them if he had (I doubt that I would have). But I do know that pretty much everything else I have tried has not helped. Thankfully my pain level is lower and I have discovered new ways to successfully help deal with things.

I am sure for many, opioids are a life and death decision. Dealing with chronic excruciating pain cannot be easy. Apparently there are about 20 million people in America dealing with nerve pain. Lyrica is a popular drug for treatment of nerve pain but has many side effects and only works well for only about 20% of the people that take it. I tried it a couple of years ago and it did not work for me.

FWIW, pain is my #1 MS symptom at this time.
Last edited by ElliotB on Tue Apr 24, 2018 7:17 am, edited 2 times in total.
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Re: MS pain

Postby Scott1 » Tue Apr 24, 2018 6:09 am

Hi,

I was diagnosed with MS in 1994 and the problem in those early days was mainly fatigue. The Avonex I took did cause considerable pain but generally I didn't have much. In 2014 I had a very severe attack. It stopped two chambers of my heart and for a time I was unable to walk. Fatigue in the old sense wasn't an issue but I was pretty knocked around.
The pain I then experienced took several forms. Early on it was neuropathic pain which is like living on the edge of fainting but you don't. After that there was a lot of sharp pain through my hips, painful cramps in my legs, pain in my shoulders as though I was being crushed and an endless series of painful spasms throughout my back. There was certainly no issues with addiction in my case.

The greatest relief came from a drug called Dantrium which specifically blocks a calcium channel called the ryanadine receptor. It has convinced me that a lot of pain relates to loss of the ability to maintain calcium homestatis. It is calcium that triggers muscles to tighten. When a muscle tightens and doesn't release properly the connective tissue around it remodels to take on the new shape. The neurons that control pain signalling are called nociceptors. They appear throughout the body and are notable in the connective tissue. The tightness in your body will pull on the nociceptors and create pain. It's real but you can go for years without experiencing it. Unlocking those tight muscles and breaking up the tightness in the fascia will help relieve pain.

Be grateful you haven't had it. Pain is very real and is not, in most cases, in any way related to the reasons you imply.


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Re: MS pain

Postby Boudreaux » Tue Apr 24, 2018 10:49 am

jerrygallow wrote:I know this topic may stir up the proverbial hornets nest. But I have had multiple sclerosis now for nearly 12 years. Other than some initial optic pain, I have never experienced pain. I know that for a long while many doctors did not think that MS even caused pain. Now it seems that every forum I click on, especially on Facebook, people treat pain as the number one symptom. It’s probably the complaint I read the most. I wonder, somewhat cynically, if this is connected to the opioid crisis. I am not saying that people do not experience pain occasionally. This is a crazy disease. But I do not think that it is disproportionately the most prominent feature of the disease, as one would conclude from social media these days. As somebody who legitimately suffers with this condition, it offends me to think that people would use this diagnosis to try to nurse Some addiction. Thoughts?


Pain is real, glad you don't have to deal with it. It's my number one symptom and I don't take any opioids. Who cares what the doctors used to think.
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Re: MS pain

Postby jerrygallow » Tue Apr 24, 2018 8:03 pm

As I stated in my previous post, I do not doubt that people legitimately experience pain. I do doubt that such a large percentage of people are experiencing pain. Just look at this forum, We do not see an overwhelming number of references to pain.
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Re: MS pain

Postby Scott1 » Tue Apr 24, 2018 9:22 pm

Hi,

Until you've raised it, I haven't bothered talking about it. I'm sure others are the same. We would be a sad bunch of individuals if that's all we talked about. If spasticity is not an issue for you then pain probably isn't either. Once you start pulling things out of place it hurts. This goes with the territory. Talking about it won't change it.

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Re: MS pain

Postby NHE » Tue Apr 24, 2018 11:46 pm

jerrygallow wrote:As I stated in my previous post, I do not doubt that people legitimately experience pain. I do doubt that such a large percentage of people are experiencing pain. Just look at this forum, We do not see an overwhelming number of references to pain.

I've had neuropathic pain in my feet and legs for the last 18 years. I don't take anything for it. I've found that the less I focus on it, the less it bothers me. Sometimes when I'm sitting I'll fold origami to give my brain something else to do. Years ago I found that taking my shoes off would help reduce the severity, however, now not so much. It's pretty constant from the time I wake up to the time I go to sleep. There's little sense in complaining about it. That wouldn't change anything.
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Re: MS pain

Postby jimmylegs » Thu Apr 26, 2018 5:40 am

when i have pain i don't consider it ms related by and large. the only possibility is a minor sunburn feeling which seems to clear up with better attention to the nutrient regimen.
as for the opioid crisis in general, i personally avoid pain killers as much as possible right down to relatively innocuous over the counter standards. knowing that if needed (rare) i can often substitute magnesium with good effect, i have definitely wondered about the extent to which dangerous drugs are being prescribed to mask underlying nutritional issues. or physio issues for that matter.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: MS pain

Postby HUD45 » Fri Apr 27, 2018 9:58 am

Yea, hornets nest for sure. I have been experiencing more and more intense pain than I ever anticipated the last year. I am ppms diagnosed in 2007. It's NOT in my head or due to the fact that my diet and nutrition is lacking. It is real... I take no pain meds except med cannabis. I really never understood the pain aspect until I started to experience it for myself. It is a life changing, physically limiting challenge that I know many of us on this site have to deal with constantly. Feel fortunate if you are not having pain for now. Life goes on as does the course of everyone's MS but the point is that everyone has varying symptoms and experiences. There is no cookie cutter formula to treat MS symptoms.

Best, HUD
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Re: MS pain

Postby jimmylegs » Fri Apr 27, 2018 12:47 pm

i'm curious - what are serum mag and serum d3, @HUD?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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