MS People Dealing with MS Pain Community Group
So many people have pain from their Multiple Sclerosis in so many ways. Some from spasms, some through neuropathy, optis neuritis eye pain, etc. This group lets you "talk" about your pain and offers assistance to others who experience all kinds of MS pain related issues. Through your participation, you are helping folks find a centralized place for all their questions and...
Hi Everyone, and thank you for joining this group! I'm not sure what I am doing being an "administrator" of a group, but I will try to help you along as best I can. If I don't know something, I will ask. I'm not a computer person at all. I like to turn on the computer and just go. I just don't understand them. Anyhoo, I thought I would officially welcome you to this group and tell you a bit about what I hope this group will do for you.
As I mentioned in my welcome, so many people have pain from their MS in so many ways. When most people think of multiple sclerosis, they think of a disease that causes symptoms of weakness and motor problems -- not pain. Decades ago, there was a saying that MS causes all kinds of trouble but doesn't cause pain, which really isn't true. I read in a survey that of more than 7,000 MS patients, 70% of them had experienced some kind of pain, and at least 50% were experiencing some kind of pain at the time of the survey. So we really DO suffer. The National Multiple Sclerosis Society reports that almost half of all people with MS are troubled by chronic pain.
MS pain differs from the kind of pain you might get with a headache, a joint injury, or muscle strain. It's sometimes described as like a toothache, other times like a burning pain, and sometimes as a very intense sensation of pressure. It's very distressing for us because we have a hard time explaining what our pain experience is. So what's causing this baffling, complex, often debilitating pain? Normal pain for people without MS is when the nervous system sends pain signals as a warning phenomenon when something harmful happens to the body. But for us with MS, the nerves are too active and they send pain signals with no good reason -- they're firing a pain message when they shouldn't be.
Some of the most common types of pain experienced by us MSers include:
Acute MS pain. These come on suddenly and may go away suddenly. They are often intense but can be brief in duration. The description of these acute pain syndromes are sometimes referred to as burning, tingling, shooting, or stabbing.
Trigeminal neuralgia or "tic doloureux." A stabbing pain in the face that can be brought on by almost any facial movement, such as chewing, yawning, sneezing, or washing your face. People with MS typically confuse it with dental pain. Most people can get sudden attacks of pain that can be triggered by touch, chewing, or even brushing the teeth.
Lhermitte's sign. A brief, stabbing, electric-shock-like sensation that runs from the back of the head down the spine, brought on by bending the neck forward.
Burning, aching, or "girdling" around the body. This is called dysesthesia by physicians. I think this is also from a MS hug?
Some of us experience pain from spasticity that can lead to muscle cramps, tight and aching joints, and back or musculoskeletal pain. These chronic pain syndromes can often be relieved by anti-inflammatory drugs, massage, and physical therapy.
This site is where I hope that each of you will share your experiences in dealing with pain, question your pains, provide recipes for pain (even real recipes where inflamation might be alleviated!), etc. Feel free to put ANY topic you want out there for all of us to share and learn from each other.
Welcome to the group, and thank you for your support. Lynne
p.s., is there anyone out there that knows how to copy messages from the main MS group to this group? Like, if there is a post about pain on the main page, can someone also bring that thread to this group? I don't even know how to describe what I mean more less do it! I'm just not into computers that much to know how to do this. Any help would be appreciated. I want to see this group be be a main source of all pain related threads! Thanx
As I mentioned in my welcome, so many people have pain from their MS in so many ways. When most people think of multiple sclerosis, they think of a disease that causes symptoms of weakness and motor problems -- not pain. Decades ago, there was a saying that MS causes all kinds of trouble but doesn't cause pain, which really isn't true. I read in a survey that of more than 7,000 MS patients, 70% of them had experienced some kind of pain, and at least 50% were experiencing some kind of pain at the time of the survey. So we really DO suffer. The National Multiple Sclerosis Society reports that almost half of all people with MS are troubled by chronic pain.
MS pain differs from the kind of pain you might get with a headache, a joint injury, or muscle strain. It's sometimes described as like a toothache, other times like a burning pain, and sometimes as a very intense sensation of pressure. It's very distressing for us because we have a hard time explaining what our pain experience is. So what's causing this baffling, complex, often debilitating pain? Normal pain for people without MS is when the nervous system sends pain signals as a warning phenomenon when something harmful happens to the body. But for us with MS, the nerves are too active and they send pain signals with no good reason -- they're firing a pain message when they shouldn't be.
Some of the most common types of pain experienced by us MSers include:
Acute MS pain. These come on suddenly and may go away suddenly. They are often intense but can be brief in duration. The description of these acute pain syndromes are sometimes referred to as burning, tingling, shooting, or stabbing.
Trigeminal neuralgia or "tic doloureux." A stabbing pain in the face that can be brought on by almost any facial movement, such as chewing, yawning, sneezing, or washing your face. People with MS typically confuse it with dental pain. Most people can get sudden attacks of pain that can be triggered by touch, chewing, or even brushing the teeth.
Lhermitte's sign. A brief, stabbing, electric-shock-like sensation that runs from the back of the head down the spine, brought on by bending the neck forward.
Burning, aching, or "girdling" around the body. This is called dysesthesia by physicians. I think this is also from a MS hug?
Some of us experience pain from spasticity that can lead to muscle cramps, tight and aching joints, and back or musculoskeletal pain. These chronic pain syndromes can often be relieved by anti-inflammatory drugs, massage, and physical therapy.
This site is where I hope that each of you will share your experiences in dealing with pain, question your pains, provide recipes for pain (even real recipes where inflamation might be alleviated!), etc. Feel free to put ANY topic you want out there for all of us to share and learn from each other.
Welcome to the group, and thank you for your support. Lynne
p.s., is there anyone out there that knows how to copy messages from the main MS group to this group? Like, if there is a post about pain on the main page, can someone also bring that thread to this group? I don't even know how to describe what I mean more less do it! I'm just not into computers that much to know how to do this. Any help would be appreciated. I want to see this group be be a main source of all pain related threads! Thanx
Missy
I am off pain meds right now and treating with LDN, and diet. I take neurotin if desperate, but it depletes Vitamin D (very important for us.) Can't sleep without baclofen, and usually take Tylenol and drink Tension Tamer tea and Sleepytime Tea before bed.
I have been on lots of pain meds, but like my current routine.
Pain and fatigue are my biggies so glad to be a part of a group that talks about one of my struggles.
- Cindy