Pain can be one of the most challenging things in life to deal with. However, for people with MS, pain is often part of daily life.
While September was Pain Awareness Month, it is important to continue the conversation about the connection between pain and MS. To learn more about the impact of this connection, we asked community members to share their experiences and Continue reading
Trying new things can be difficult. It means venturing outside of our comfort zones and, in some cases, putting ourselves in situations that can be both challenging and to be honest, frightening. But charting a course for a new terrain can also mean that we find something that we love that we would have never found otherwise or learning something about ourselves we didn’t know or just being able to check something off our list to say we tried it. No, we don’t need to try everything there is in the world… stay away from beets, they’re kinda gross and I don’t recommend getting into legal trouble, I hear it’s no fun… but in all seriousness when we take a chance outside of our usual circle we may find something that surprises us.
This year I’ve made a commitment to try something new every month. It doesn’t have to be huge, overly flashy or very expensive, but I want to continue to push myself past what I usually do and tap into somethings I have not before. This past month (I know it’s February but I haven’t done my new thing this month so go with me) the new thing I gave a try was acupuncture! Now before the Trypanophobics (having a fear of needles) in the audience run for the hills, hear me out. Acupuncture has been practiced by many cultures, often specifically associated with Chinese culture, for thousands of years. It’s a form of healing that yes, does utilize needles. But before you go grab your sewing kit and try to cure your own headache know that to become a trained acupuncturist is not just learning to not make people bleed with thin pieces of medal. It takes a study of the human body, pressure points, muscles, nerves, an awareness of the interconnectivity of pain and stimuli and a host of other factors to be able to safely and effectively administer acupuncture. I’ve had it on my list of things to try for some time and decided, heck this was the time. I did my do-diligence and researched clinics in my area and came across one in my very own neighborhood with trained and certified acupuncturist…. And away I went.
Now even though I wanted to try this out, I was still nervous which I’m sure didn’t help the strained muscles I was trying to ease to begin with. But here’s the thing… it was a great experience. The clinic, which looked more like a message parlor was welcoming and calming and the process… was painless. Well to be honest there was a pinch or two in the beginning but less than when you get your flu shot. The session was 30 minutes and honestly after 5, I forgot the needles were even there and fell asleep…that’s how relaxing it was. Now the question I’m sure somebody is asking “yeah but did it work?” Yes… and no. Immediately after I had the needles removed by my acupuncturist the pain felt eased but not gone. This I learned was normal. Similar to most things it didn’t take one day for the muscles to tense and become soar so it wouldn’t be reversed in just one session. The acupuncturist explained to me that most people come a few times within the first week or two to have their procedure done and then the spacing between visits becomes greater. Not what I was expecting, mostly because like most of you I live in a world that readily expects some things to happen quickly and on my schedule. But it did help, I woke up the next day and the treated muscles did feel less taught than usual.
So is acupuncture right for you? It might be. If you have thought about it or are interested in it I would encourage you to seek out a clinic and acupuncturist that’s right for you. Is it worth a try, definitely. It doesn’t involve medication or overly complicated procedures and can be administered in as little as 30 minutes. Is it costly, the cost is dependent on the clinic but most of the ones I found in my area worked on a sliding scale according to income. Do be sure to do your research first, ask questions of the team regarding licensing, training and to walk you thru the steps. If you are still nervous go visit the clinic. I personally enjoyed the experience and have scheduled sessions at a regular interval which I’m also enjoying. It’s something new and as a bonus is something good for me. Happy venturing!!
Living with MS comes with many challenges, both physically and emotionally. These life changes and demands can often lead to irritability, which happens to be one of the most common experiences that can come along with MS. Mood swings and irritability can be brought on by the physical pain and the overall toll MS is taking on the body. The stress and emotional adjustment of living with MS, as well as the treatments and medications prescribed, can all add to this exasperated and agitated state.
We recently published an article from one of our contributors, Calie Wyatt, who compared herself to the character of the Abominable Snowman from the classic movie Rudolf (the red-nosed reindeer). The character was continuously enraged and ill-tempered to those around him, but little did the others know, he was actually suffering from a horrible tooth ache, which led him to being so irritable. It was an interesting analogy to how Calie’s MS pain and fatigue would cause her to lash out at her family and friends. We received such incredible feedback from our community members about this article that we thought we would share some of their responses with you.
Sometimes irritability and belligerence are a direct reflection of the physical impairment and pain of MS on the body.
“Sometimes I feel the crankiness stems from trying to push past the pain, and live up to the expectations of others.”
“I’m not even aware of my physical misery until I become horrid and crabby…”
“It’s so frustrating having pain all the time. I have been having problems controlling my emotions.”
No matter what you’re dealing with, we all can get ill-tempered and irritable when we are tired or uncomfortable. However, this experience can be made worse when dealing with a chronic condition like MS.
“I get extra crabby when I am tired, and I am tired ALL the time.”
“I used to be a morning person, now it takes so much energy to get going and stay going. I try not to be grumpy, but I can’t help it.”
“I don’t have the energy for life.”
“As far as the exhaustion and fatigue are concerned, I’ve noticed its worse on days when my pain level is high because I feel my mind and body are constantly trying to cope with it and tolerate the pain.”
“I pay close attention to how tired I allow myself to become…I have total meltdowns if I push myself too far. The MIND AND THE BODY JUST SHUT DOWN. When I say I AM TIRED this means I’m DONE… I go lay down – sometimes just a short break and sometimes for the rest of the day if that’s what my body and mind needs.”
“I can relate, I am tired and irritable and can be short and snappy with people.”
Living life with a chronic condition may lead an individual to stay at home more than ever before. This, along with anxiety and depression can contribute to irritability.
“Understanding that the source of our emotions may be depression can help us show ourselves grace.”
“I think my isolation makes it even worse when I do go out, and anxiety jumps into the mix.”
“While I usually never get grumpy, I do get very distant and quiet when I have a lot of pain.”
“This condition has made me a hermit!”
The day-to-day struggles and stress of living with MS can easily lead to moodiness and irritability that can provoke entire personality changes.
“This condition can flat out change your personality in ways that are directly opposite of who you are. I’ll make a rude comment and later wonder: what the heck is my problem?”
“I lashed out at a stranger at the market just a few days ago. I’m not normally like that.”
“I’ve been embarrassed about my behavior but finally forgave myself when I accepted that I did the best that I could at the time.”
“I’m so emotional, I can’t keep my thoughts at bay…they spew out of me so often that I annoy myself. I’m so tired! “
“I’m not the same person, I’m nasty I think. I snap a lot.”
Irritability can strike anyone at any time, and pain, fatigue and depression can all be contributing factors. However, for those living with a chronic condition like MS, irritability can come from all of these factors and so much more. When possible, try to identify what may have triggered your irritable state. If you’re able, pay attention to those things or situations that can lead you to being tense and uneasy, so you, and your friends, family, or healthcare team can try to help resolve them. If you experience any MS-related irritability, let us know how you navigate through, or if there’s anything we’ve missed!
By Stacie Prada
When I feel great, there’s no need to change what I’m doing. Following new and improved advice may actually break the complex formula of nutrition, fitness, and lifestyle that keep me in good health. If I’m not feeling well, figuring out what I need and prioritizing it within the mix of all my other needs becomes an issue.
We subconsciously prioritize and adjust our behavior to meet our needs all the time. For me the demand to put effort into prioritizing needs comes when I don’t feel well. I’m stressed, something hurts, or some part of me isn’t working as well as usual. It could be one small thing that is snowballing into a big issue, or it could be a big issue that’s easy to identify yet overwhelming to fix.
This past year, my pain level increased to a level that was affecting sleep and causing debilitating discomfort. I researched possible causes and tried stretching, massage, supplements and rest. It helped a little but not much. I went to a massage therapist who worked the muscles, and it caused almost unbearable pain for days. Through my neurologist, I tried medication and was told I’d need to take it for a few weeks before the side effects would mellow out. I gave it a good try, but I could see it wasn’t going to be a good long-term solution for me right now. I obtained a referral for physical therapy, and there I had someone work with me to specifically design a fitness regimen that will address my nerve pain. She assessed my personal condition and through trial and error pinpointed the cause of the pain. She helped me devise a mix of exercises that will increase my strength, improve my balance, and hopefully reduce the nerve pain I’m living with.
Each step of the way, I had to make my health a priority while still doing everything else my life requires. While under her care, I dutifully did all the exercises she prescribed. It was tough doing it all, and it wasn’t something that I could sustain.
When I think about doing everything the physical therapist advised, I get overwhelmed. I want to do it all, but it’s too much right now. I anticipated this and specifically asked her what the minimum daily fitness activities would be so that I could start there. This took being honest with myself and with her. I had to be open to being judged negatively and accept I’m not going to be the model patient I’d love to be.
I already have a minimum fitness routine I do every day and have been doing for years. Seriously, I missed eight days two years ago and none last year. I thought I was doing great, but it wasn’t enough to protect me from having problems develop. So now I’m working on modifying my routine to deal with my changing body. I’m incorporating the minimum she gave me, and I have a long list of things to add when I’m ready.
I’m not doing everything she gave me, but I’ll get there. And I like having the guidance for what to do when I’m ready to up my game. She may or may not approve of my approach, but I’m the one who knows me and lives with the consequences.
It feels like slow change, but it’s not no change. I’m in it for the long haul and doing what I can as I can.
*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/