A lovely woman – a new good friend – asked the question today about how to help with the pain when the meds have run out. That is something I would love to have the answer to because the pain of autoimmune arthritis can be excruciating and when you don’t have the means to get it to break it wears you down body and spirit very, very quickly.
But, I do have a few tips up my sleeve from the years where I promised myself to do anything and everything that might make it a tiny bit better in the hopes that those tiny bits add up to a big enough bit to give even a little relief. I have a “life boat” full of items that help me survive when the pain cannot be handled by simply having the right attitude. My life boat is kept stocked and checked. It consists of emergency pain meds but in this case I’m talking about 11 things you can try when there are no pain meds available. For my readers who do not live with chronic pain – unfortunately with our system of care and the stigma surrounding pain medication many of us have experienced times when we have run out of our prescriptions and there are no refills on the meds we need to take the pain away effectively so we are stuck in a horrible situation. We have to a) somehow get through or b) head to the emergency room. I’ve been there, it isn’t pretty because being in pain apparently doesn’t rank very high on a triage list. So – here are a few coping strategies I learned over the years.
1. A very hot bath preferably with a few cups of Epson Salt.
2. An insense burner. I have the kind made of soapstone where you use a tea light candle under a “well” that holds water that you can place drops of the scent that will help. I use lavender, bergamot, and lemongrass. I know, some of this stuff is going to sound all new-agey but trust me it helps. The brain has to pay attention to the scent – and if part of the brain is thinking/processing that scent then it has less to process pain.
3. A Neck brace. Yup – like the ones you see people wear after they are in a car accident and get whiplash. When my neck feels especially horrible and fragile the brace gives it some wonderful support. I’ve had to wear it at some pretty embarrassing times, like the morning after my brothers wedding. I had just started on Remicade and I was a mess but I got through the night. I’m still very glad that I’ve never seen the video footage of being on the dance floor because I’m quite sure I was doing a cross between the white man overbite and the penguin waddle. But I was there.
4. SI Belt – Ask your PT or Physio about one of these. I love mine and I use it to garden and do anything physical. It is an adjustable belt that you wear low on the hips (about the height of your SI joint) and it goes under your clothes so no one needs to know but it is again something that helps me get some extra support.
5. On the lines of items that you can own but I’ve gotten from my PT/Physio – I have tape that is similar to the stuff you see some athletes wear on areas that are weak – remember Kerri Walsh, the Olympic volleyball Gold Medalist wore that strange piece of tape on her shoulder – same idea. Usually my PT/Physio will tape up my back but if I need to – my husband can do it in a pinch. I love having my back taped although I don’t do it too often, when I do it helps my back so much!
6. Music! I find that the spa type music is perfect for me but it is the same concept of occupying you mind. Whatever works for you.
7. A Supply of various heat producing patches that you can pick up at the drugstore. These do help – remember, we’re looking for tiny bits that help make a bigger impact.
8. Eye Mask – Many of us with AS have eye issues that create severe sensitivity to light. Even when I’m not flaring I find that sleeping with an eye mask helps give my eyes a break and helps prevent the pain of a headache behind the eyes. I love the Tempur-pedic mask but they are $29. I bought my first mask in Las Vegas. I was there for a trade show back before my diagnosis and I was so sick. I could barely open my eyes. I would later find out I was experiencing the first in a series of undiagnosed iritis flares. If you’ve had one – you know how horrible and dangerous they can be. When I wore that mask out probably 5 years later – Doug found a perfectly decent one at Wal-Mart for about $5! My only issue with this is that I can now no longer sleep without it. Look for the big pillow type of mask or treat yourself to the Tempur-Pedic one!
9. Touch. Not Sex – that is the last thing I want when I’m in pain but I love having my hair brushed. It is another sensory distraction that works. Maybe for you its a back scratch or simply having someone hold your hand.
10. Understanding of friends and family. A little empathy goes a long way.
11. Laughter – put on a funny movie or your favorite sitcom. A list of some great ones is below.
What are some of the little things that help you? Please add a comment with your suggestions.
Until tomorrow.
Jenna
Day 301 was created in mixed media.
In The Studio
1. Countdown – 64 days to Apple-A-Thon!
2. Apple Recipe of the Day – Fresh Apple Cake with Caramel Glaze
3. Interesting Article Of The Day – 11 funny movies to help ease pain.
4. AS Blogger Spotlight – Jennifer from Live Art.fully writes a beautiful blog. She talks about art, her family, and living with chronic illness. I love Jennifer’s writing and I love hearing her anecdotes about her two sweet and bright little girls.
Wow, some great tips I never thought of! Thank u!
#10 brings tears to my eyes…trying to type thru them right now. lol I find the best support from a couple of good friends and 2 of my bosses. My family….eh, not so much. Last night I was cleaning my house feverishly for hours in anticipation of my loving, yet judgemental, mother’s visit (meaning my house better be clean or she’s gonna be asking me why it is not). Because I was physically working so hard, my blood glucose level dropped to 50 before I realized it. I told my husband & eldest son, then proceeded to take care of it; ice cream sandwich, towel for the sweating and a sit down in my recliner to recover. I finally sarcastically said, “Gee Mom, gee hun, is there anything I can do to help?”, as they played their video games. Only then did I get their attention. I feel so alone in my illnesses at times…..
Melissa,
Thank goodness for the support of your friends. I’m so glad you went online and looked for some fellow AS’ers. The community is a great support and as you and I know wonderful friendships can be forged via the bits and bytes of the internet. I adore you – and I’ve only just started to get to know you. I know you have the strength to deal with AS and I know you are looking for ways to teach your family about the disease. I saw your other comment about talking about apple ideas for me (thank you!) and I just thought – oh my – maybe the apples can become a way to broach the subject with family. If it can help anyone – I have done something to help which is all I want. To help 🙂 xox – Jenna
Jenna~
You have helped many, many people, I’m sure of that! I thank you for “friending” me. I feel very privileged to know you, even a little bit. What you have done with the Feeding Edge is so inspirational to me. You are living the life I see for myself…..being expressive, creative, advocating, and taking care of your health in the best ways possible.
~Melissa.xo
We remember every one of those things. We know they helped just as you said, in bits. You looked beautiful to me in your neck brace after Jason’s wedding, but so fragile. You got even sicker after that with a medication you were trying ( with the remicade ?) and then, Thank God, the remicade started to work.
I think there were some country music songs you played for insiration, too.
I think those closest to you sometimes want it to go away, too. It is a different sufferering and, of course, without the pain of the person with AS, but real none the less. There is also a sense of helplessness which is emotionally difficult. I’m sure this can be acted out in all kinds of ways that are counter to the best for both the sufferer and the supporters. I felt most helpless when Jenna disappeared into the pain. I would have cut off an arm to make it stop and let you come back.
I don’t know how I am so fortunate to have such an amazing support system. My parents and Doug are my rocks. They have been with me through so much and now they are with me as I try to share my story. Maybe…. they can help talk about what they have experienced (like Mom’s comment above) and it might be of help to other families to see that their feelings are valid but that taking the time to try to understand the disease and the ramifications of a life with the disease is all we want, all we ask. Thank you Mom – I wish my suffering didn’t affect you so much. I love you.
By “neck brace” she means the soft foam kind, not the rigid plastic thing.
Thank you sweetheart – yes, a soft foam one with velcro. I have two sizes actually (omg to admit that) – one is taller for worse times but I mostly use the one that is about 3-4″ tall. It has a dip in the front for your chin. I’m always asking Doug, “where’s my neck brace?” because who knows where I took it off and placed it the last time.
I love the eye mask idea! I’ll have to try it! Thanks Jenna for your wonderful tips. 🙂
You’ll love it Kelby! Can’t wait to see you next week for our epic journey into the new IKEA! xox
I thought of a few more things this weekend that help ease my pain! 1) sitting out in the sun. 2) having someone brush my hair 3) smelling my favorite smell! like lavender, vanilla, chocolate, or peppermint! 🙂 Looking forward to seeing you on Friday!
I especially like #11 and I employ it when I’m in pain. It really does work to get your mind off of your pain.
Number Eleven works and I should do it more. I love to laugh but I sometimes forget about watching a funny movie or show mostly because when I do watch t.v. it tends to be dramas. I need to make a more concerted effort on this one and listen to my own advice 🙂
I am in this very situation right now. I had an appointment set for last Wednesday and i got a call from the receptionist telling me that my doctor is now out of town and i will not be able to come in for my normal refill till Tuesday…..that makes 4 nights and three days to go. I’m on a heavy pain meds and now i will go thru living hell not only in pain but withdrawals also. i am just trying to relax and not think about it. i sure hope everyone else is having a good weekend.
Steffie Jo,
I’m so sorry you are in this situation too. I do not understand this – at all. With that said – think about putting together a “life boat” – this post just talks about the things to have on hand that aren’t script related but… my life boat has emergency pain meds in it. Maybe set aside a pill here and there when you feel you can and plan for this kind of unfortunate emergency. The withdrawls are unacceptable and doctors should never allow their patients to have to experience it. Can you go get some Valarian Root – I know.. another one of my natural suggestions but it might help a bit with the WD symptoms. Also – take a double dose of a multi-vitamin and a multi-mineral supplement for the time. I went cold turkey off the Fentynol Patch (yes – a story for another day) but the extra vitamins & minerals in my system did help. xox Blessings to you and a big hug 🙂
Jenna, what a great post! I am going to print this and keep it to refer to when I am in that place.
Also, thanks for featuring me as the AS blogger of the day. You’re so kind!
Jenna – LOVE THIS POST!! Not only is the post so wonderful, but thank you so much for being so wonderful and being there for me the other day when I was on my last knot of the rope!! You really helped encourage me through the rough spot!! xoxo
Amanda,
Your friendship in this last year has helped me through some difficult times – I’m so glad these suggestions could help. Stay strong girl!
xoxox
I have psoriatic RA & your “lifeboat” is a great idea to print & keep next to my bed, thank you. My No 1 is my incredible husband, Ben. (I also had a stroke in 2009 so have extra stuff to deal with, and Ben is there for me 100%).
Hi Marielle, I’m so glad some of the things that I found over time might be of help. I also have psoriasis (although mostly in remission currently do to meds) I am so very happy to hear that you have the wonderful support of Ben. Please take good care of yourself. Jenna
Hi Jenna. I, too, have been using a sleep mask for years. My favorite is the Hibermate (http://www.hibermate.com/) from Australia. It is amazing, and it lasts almost forever. I can’t say enough about a sleep mask. My ophthalmologist recommends them to his patients. It helps me sleep more deeply. Better sleep = less pain.
And I’m off to Walmart, first thing tomorrow, to get some KT tape! If it will help my husband’s back and neck and my back, it will be worth any expense!
Great tips! My husband takes a hot bath with epsom salts every day. It really does help. I’ll have to find out more about that SI belt.
Hey there!
Long time no tweet 🙂 Hope your hubby is doing well – the epson baths are a god-send! I’ve now got my hubby wearing an SI belt just to help him doing yard work etc. They are really great.
Thanks for stopping by and leaving a comment 🙂