They say a picture is worth a thousand words, so today I present to you what it means to have Chronic Pain, in meme format:
There is always hope
They say a picture is worth a thousand words, so today I present to you what it means to have Chronic Pain, in meme format:
There is always hope
Here are just some of the MANY symptoms that people with Fibro have reported experiencing:
1. This is not “just in my head”. My pain is real.
2. I wish Fibro came with bruises, that way, you could see how much pain I’m feeling just so you could believe me.
3. It never goes away. My pain is always there, even when I’m acting “normal”. Don’t let my smile fool you, I am always in pain. Always.
4. There is no standard day or week or month with Fibromyalgia, It changes from hour to hour sometimes. Some days are better than others. Some days I think I want to die (this one always gets me in trouble).
5. Staying home instead of working or doing something fun isn’t all it’s cracked up to be.
6. You think I’m faking being sick, but really I’m faking being well.
7. The Brain Fog is terrifying. You try forgetting what you’re saying in the middle of a sentence and see how it makes you feel – you feel stupid and old and easy to dismiss. I lose things easily and am easily distracted. It’s so frustrating.
8. Day to day activities are exhausting. Heck, getting out of bed is exhausting.
9. Even if there were drugs that worked well, I am not a drug seeker and my history will show that. I have ONE Family Doctor and use ONE Pharmacy! I just want relief from the pain.
10. What part of “chronic condition” are you having a hard time understanding? I am not going to get better. I am going to live with this for the rest of my life. I hope to get better but it’s never going to go away. Don’t give me false hope.
11. I’m willing to try just about anything, but just because something worked for some Aunt’s friend’s cousin’s sister doesn’t mean it’s going to work for me. We’re all different and treatment isn’t a one size fits all option. But, whatever…I’m willing to listen.
12. Sometimes, I have to cancel my plans at the last minute. Sometimes, I cancel my plans with the same friend 2 or 3 times in a row. It’s not a reflection on the friend. It’s my body.
13. I wish more doctors understood Fibromyalgia and Chronic Pain and took us more seriously. Do you see me as a drug seeker too? What about when my x-rays show a body filled with arthritis? How do you deny my pain then? I just want you to help me find answers and relief.
14. Some days, even my hair hurts
15. There are days when the most I can accomplish is moving from the bed to the couch, and that’s okay. At least I did something.
16. On the days I feel good, I push myself too hard to get things done, even though I know I’m going to pay for it later. I hate being thought of as lazy. When my husband comes home, I can honestly say to him, “honey, today I cleaned up, did the dishes, vacuumed the house, did the laundry, baked cookies and scrubbed the bathroom”. And then I know I’ll be bed-bound for the rest of the week.
17. What you see on the outside doesn’t necessarily reflect how I feel on the inside.
18. My chronic fatigue is at times overwhelming and I can’t push past it. It’s exhausting to be this exhausted.
19. I wish a simple nap would help to relieve my pain, but it will not disappear if I lay down and have a rest.
20. I’m a real person with real pain. I didn’t ask for this but I’m being forced to live with it. I didn’t do anything to get this, but sometimes I feel like I’m being punished.
Research has now shown that Fibromyalgia is NOT an inflammatory condition like so many doctors first thought. It is technically NOT an autoimmune disease. What Fibro IS, is a NERVE disease where the brain misreads the pain signals going to the body through the spinal cord. This causes widespread pain throughout the body that can be felt in many different ways, and these include the various symptoms shown in the chart above.
Oh, it can be so frustrating having an Invisible Illness like Fibro. I truly do wish there were outward signs of this illness so that people could see that you’re ill. Something like bruises or a rash, or big F’s showing up on your body would be perfect (“oh look…she has F’s all over her…poor thing, she has Fibromyalgia…go get the door for her”). I truly wouldn’t mind that if it would help a doctor believe in what I’m going through, trust me.
But, as I always say…
there is always hope!
How do you Live Well with Fibromyalgia? When your body hurts all the time because of this painful condition, it’s hard to remember to do things like exercise and eat well, but these are critical components of staying well. First off, let’s look at what Fibromyalgia is.
Fibromyalgia is a condition that causes pain, fatigue, and tender points around the body. It can be hard to diagnose because many of its symptoms are similar to those of other conditions. It can also be hard to treat. That’s why it’s important to see a doctor who has experience treating Fibromyalgia. Medications are available to help alleviate some of the pain you might be experiencing, but there is no cure for the condition and a lot of what makes you feel better will come from the things you do for yourself.
And what are those things? To start with, eat a well-balanced diet, make sure you’re drinking enough water to stay hydrated and try to do some gentle exercise every day.
Eating a balanced diet is a good idea for anyone, regardless of whether you have fibromyalgia. That diet should include fresh fruits and vegetables, whole grains, healthy fats, low-fat dairy, and lean protein, such as chicken or fish. Avoid unhealthy foods, including anything processed or fried, and excessive amounts of saturated fats. Also, limit the amount of salt and sugar in your diet.
Fibromyalgia can make you feel tired and worn out. Eating certain foods can give you more energy. Avoid sweets, which will only give you a quick sugar boost. Your body will burn right through them, and then you’ll crash. Instead, eat foods that will give you more energy to get through your day. Combine protein or fats with carbohydrates to slow down their absorption. Choose fresh, whole foods high in fibre and low in added sugars, such as:
A few studies have looked at how eating certain diets affect fibromyalgia. There’s evidence from studies done that eating a vegetarian or vegan diet, which is high in plant antioxidants, might offer some symptom relief.
Another benefit of eating a healthy diet is that it can help keep your weight under control. People who had been on a weight loss program had less pain and depression, fewer tender points, and they slept better after taking off a few pounds. Studies suggest that weight loss can be an important part of fibromyalgia treatment.
Here are some of the best foods to eat for people with Fibromyalgia:
FOODS HIGH IN ANTIOXIDANTS:
FOODS HIGH IN AMINO ACIDS:
FOODS CONTAINING COENZYME Q10:
FRUITS WITH LOW GLYCEMIC INDEX:
All of these foods are great for the body whether you have Fibro or not so why not incorporate them into your diet and see the difference they can make. The healthier you are, the better able you are to fight Fibromyalgia or any other auto-immune disorder you might have.
Will exercise make you hurt more? Some muscle soreness is common after exercising in the beginning. But ultimately exercise should relieve fibromyalgia pain, not aggravate it. Try these tips: Start off small and build slowly. Massage or apply heat to sore muscles before exercise and apply cold after.
1. Keep it simple, doing activities such as walking, Aquafit (easy on the joints and muscles), or bicycling (stationary is fine).
2. Use light weights if you can to keep your muscles toned and at the very least, make sure to stretch several times a day.
3. There’s nothing worse for a Fibro body than to sit or lay down all day because your muscles stiffen up even more than usual and it takes even more effort to relax and loosen them. Do some simple stretches 3-4 times a day and work to expand on them as you get stronger.
So there you have it, some simple tips for Diet and Exercise that should help everybody but especially those with Fibromyalgia. Let me know your thoughts in the comments.
There Is Always Hope
It’s a frustrating thing when the medications you’ve come to rely on suddenly decide to stop working. Pain meds no longer manage your pain, and brain meds no longer manage your brain. It’s no fun to find yourself in this situation, but for People with Chronic Pain (PwCP), it happens all the time.
There are only 3 medications that are specifically prescribed for Fibromyalgia: Lyrica, Savella and Cymbalta. Lyrica, in particular, is known for weight gain as a side effect and when I first started taking it, years back, I gained 30lbs in 2 months time. I’m a short girl (5’2″) but I have a large frame, so I didn’t want to gain anything…I’m already stocky. I told my doctor that I couldn’t handle being so heavy (I think I went up to 160lbs), so she took me off the Lyrica and put me on the Cymbalta instead. I lost some of the weight and for a long time, seemed stable at 140lbs which I was okay with. I was still working out at the time and had a muscular body thanks to my trainer and her torture sessions every week (hi Terrianne…love you!).
Fast forward 10 years and I’m still on the Cymbalta, but I don’t think it’s as effective as it used to be. The problem is, science hasn’t kept up and there is nothing newer to try. Even though I continue to take my daily doses on schedule, I find that I develop brain zaps in between and my Fibro pain seems to have increased over the years as well. Part of it might just be from ageing, and part might be from my Osteoarthritis getting worse as well. I’ve also noticed that since I had my right hip replaced and I developed this Haglund’s Deformity in my left foot, my legs are constantly achier than they’ve ever been. I’ve always put that down to walking with a different gait, but I wonder if that’s my Fibro flaring up as well.
The other medication that has been difficult to regulate is what I take for my Bipolar Disorder. I was on Seroquel for a couple of years with good success, until I started having auditory hallucinations. I would be hearing music where other people heard nothing. It took a long time before we determined it was my medication causing the problem, including a visit to a Psychiatrist to determine that I didn’t have Schizophrenia. Once we realized the Seroquel was the problem, we switched to a new drug called Abilify. That worked great for the first several months, providing me with energy that I hadn’t had before and a whole fresh outlook on life.
Unfortunately, it also brought some side effects like shaking hands and trembling tongue and brain zaps – those internal lightening-fast buzzes in the head. We cut the dosage in half and then in half again, but to lose the side effects meant to lose the benefits as well. I see my doctor again soon and I think we’re going to have to try something new. The problem is, everything new is in the same general category as what I’m currently taking, so not sure what type of success we’ll have.
Speaking of seeing my doctor, I have to say that my new doctor is lovely. Dr Penny Wilson is from Australia and is in Canada for a year at least (with the promise that if she decides to go back to Australia at the end of the year, my care will be taken over by another doctor in the practice so I won’t be left stranded). She prefers to be called Penny rather than Dr and she’s simply delightful to talk to. She’s matter of fact and down to earth, and genuinely wants to see me as healthy as possible, so on my last visit there, to get the results of blood work and to get a prescription refill on my opioid medication, she decided she wanted me to book another appointment asap for what she called a Complex Care Review. As she said, “if anyone is complex, it’s you”. How true!
Basically, this appointment will be a chance to sit down for 30 minutes to go through EVERYTHING that I’m experiencing healthwise so we can triage what’s important, what can wait, what Dr Winston, my Pain Doctor, is dealing with, and what needs to be sent off to other doctors. For instance, I’ve had ongoing pelvic pain, likely due to a build-up of scar tissue/adhesions from several previous abdominal surgeries. I do know that when I had each of my ovaries removed, there was scar tissue attaching my bladder to my bowel. When I move certain ways, it feels like my insides are ripping apart, like velcro being torn open and it’s crazy painful. This is something I haven’t dealt with yet, because there have been too many other things wrong with my body. Penny will likely refer me to either the Gynocologist or to a General Surgeon to have a laparoscopic procedure done to see if they can remove some of the adhesions so that pain can be eliminated. Yes, a surgical procedure will cause more adhesions, but if they can get rid of 90% and have only 10% more grow, then those are good odds for me.
It feels weird to be looking forward to a Dr appointment, but I think this will be one of the most beneficial ones I’ve had in ages. I’m also taking in all my medications, so we can do a review and see if there’s anything I can stop or any dosage changes I need to incorporate. Yes, Penny is very thorough and for that, I’m very grateful. I have a feeling that when the appointment on the 27th is over, I’ll no longer have medication frustrations. What an answer to prayer!!
there is always hope!
There is an Opioid Crisis in North America and it’s affecting two factions of people – the ones who take and use opioids illegally and the ones who use and take opioids legally as prescribed by their doctors. I want to focus on the second group because we’re not being given our due in the news. First though, let’s look at some numbers.
*Every day, more than 115 people in the United States die after overdosing on opioids.1 The misuse of an addiction to opioids—including prescription pain relievers, heroin, and synthetic opioids such as fentanyl—is a serious national crisis that affects public health as well as social and economic welfare. The Centers for Disease Control and Prevention estimates that the total “economic burden” of prescription opioid misuse alone in the United States is $78.5 billion a year, including the costs of healthcare, lost productivity, addiction treatment, and criminal justice involvement.2
**Canada isn’t far behind. “This is a major public health crisis in Canada,” says Dr. Theresa Tam, Canada’s chief public health officer. “Tragically, in 2016, there were more than 2,800 apparent opioid-related deaths in Canada, which is greater than the number of Canadians who died at the height of the HIV epidemic in 1995.”
New data from the Public Health Agency of Canada (PHAC) shows that from January to March 2017, there were at least 602 apparent opioid-related deaths across the country; it is expected that this count will rise as additional data becomes available.
Pressure is being put on physicians in both countries to stop prescribing opioid medications or to cut down on the number of prescriptions they write, and many are complying. So where does that leave us, the People with Chronic Pain (PwCP) who depend on opioid medication to manage their pain in order to have any semblance of quality of life?
Physicians and Pain Doctors are now more likely to offer Pain Management Programs and techniques in place of opioids. These programs use a combination of non-opioid medications such as over-the-counter or prescription ibuprofen (Motrin), acetaminophen (Tylenol), aspirin (Bayer) and steroids, plus various therapies, including:
Are these programs helpful? Do they work? Do they relieve pain? Well, from my own personal experience, the answer is no, they don’t take your pain away. They do give you the tools to manage your pain more effectively as long as you employ the tools on a daily basis, but when your entire body is wracked with a deep aching, burning sensation that NEVER GOES AWAY, it’s almost impossible to manage that. When my legs feel like bricks and my arms are burning like fire and I can’t move my shoulder to brush my hair and my knee is collapsing when I walk and my spine feels like it’s going to collapse any second from now from the intensity of the stabbing I feel…it’s hard to be motivated that today is going to be a good day.
Now, I have to be honest and admit that I am still taking opioid medication. I have been, for the last 10 years. I have weaned down my dosage, but I still take it. Right now, I take a Slow Release dosage of OxyNeo (Oxycodone) in a dosage of 30mg, 3 times a day. Each dose is to last me 8 hours. Does it work? Somewhat…it keeps my pain at a 4-5 on the pain scale which I can manage with other techniques. If I didn’t have the medication, I would be at a steady 8 on the scale, all the time. Now, what would happen if my Doctor decided to stop my drugs? I would be hard pressed to manage without them, especially after so many years of taking them. Am I an addict? No, I’m not and here’s why. When you have legitimate pain, it’s impossible to become addicted to a pain medication. It’s when you take a medication that you don’t need that you become addicted to it.
I want to share a conversation I had in a chat with a couple of friends who’ve allowed me to share their thoughts and first names. Read what happened to Lindsay and our replies:
I belong to an online Fibromyalgia Support Group. I spend so much time on the computer that it made sense to me to find a support group online as well. It’s run by a lady named Catherine and has members from around the world – Australia, England, Canada, and the USA.
It’s a super supportive atmosphere and the one thing we are very clear about is that none of us are doctors and we are not there to dispense medical advice. We can talk about what does and doesn’t work for us, and our own medical experiences, but we can’t diagnose you based on YOUR symptoms, as Fibromyalgia can have SO many symptoms, it would be impossible to try.
One of the so-called “tests” used to determine if you have Fibro or not is the 18 Tender Points as shown here:
So you can see why Support Groups are so necessary when you live with Fibro, or really any disease that causes Chronic Pain, such as Osteoarthritis, Rheumatoid Arthritis, Lupus, Ehlers Danlos Syndrome, MS and more.
Well, I joined a new Fibro support group a few days ago, and just had the most interesting experience. Yesterday, the Leader of the group “diagnosed” a member with a symptom she was experiencing (bloating and constipation) and told her she had “Leaky Gut”. I suggested that she shouldn’t diagnose, and what if it was something else, such as Gastroparesis?
My goodness, did I ever get a pissy response!!!! I took screenshots (which I won’t post here), but I ended up just leaving the group. I was told that this woman has 25 years of living with Fibro, she’s done years of research with top doctors, and she knows what she’s talking about. Apparently, this woman is determined that the only way to resolve Fibro is with Bovine Colostrum and a Chiropractor. Now, I’m willing to try the Bovine Colostrum to see if it helps, but you DON’T diagnose someone definitively, EVER. It’s even in her rules, which I quoted to her, which made her even angrier!!
And not only that, how dare I suggest Gastroparesis and the radioactive tracer test that would diagnose that because that would make this lady’s “Leaky Gut” even worse. FACEPALM (yes, she really put the Face Palm Emoji in there).
And not only THAT, how dare I tell her what to do in her OWN GROUP. She’s never been angry before, I’m the first one in the whole ten months to upset her, blah blah blah blah blah blah (yes, I am that talented!!)
So, I told her I was leaving the group because I obviously couldn’t state my opinion without being attacked, she couldn’t follow her own rules, and I don’t need that kind of energy in my life. I reiterated that it’s okay to suggest possibilities, yes, but you never tell a person that what you suspect they have IS what they have. That’s just being irresponsible. Then I called her an @ss and left. Oops!!
There is always hope.
Part 2 – Post-op – Day 2
After a night of basically no sleep, I “woke up” to experience my first attempt to get out of bed. Wowzers was that ever a challenge!!! I don’t have a ton of strength in my arms, but in order to get in and out of bed, you need to use them for balance, and strength and pushing, etc. The nurses were all fantastic at helping if I wanted it, but I’m also so stubborn, I want to do everything myself.
So, using the instructions of the nurse, I was able to sit on the edge of the bed and “dangle”. That’s what they call it – dangling – and it’s important to do that first, to make sure you’re not dizzy and aren’t going to collapse on the floor when you stand for the first time. After I assured them I was okay, they helped me put my Crocs on – easy footwear to slip on and off – and then using my walker, I stood slowly for the first time. I won’t say it was painful, but it felt really weird – maybe because the motion was smoother, since everything fits together properly now. Most of the pain was in the upper thigh and groin area, not the hip, so that was a bit strange. At any rate…I was standing…and all this effort so I could use the portable commode beside my bed, instead of a bedpan!!! Yes, that’s what this was all about – peeing!
Part 2 – Post-op
If you haven’t read Part 1, you probably should. It will help familiarize yourself with what’s happening as we move towards Post-op. Go ahead…I’ll wait.
< insert Jeopardy music here>
Welcome back and here we go!
I know that the surgery itself went very well, but I really was quite sedated for most of it. I did wake at one point, maybe when they were positioning me, and I could hear some hammering and a couple of voices talking, but it wasn’t disturbing or upsetting. I remember looking at the Anesthesiologist and sort of smiling at him, like “oh, hi there!”, but before I had time to realize that was my new implant Dr. Burnett was hammering into my leg, I was drifting off to sleep again. That spinal anesthesia/IV Sedation really was quite lovely and I think if I ever have surgery again and it’s an option, I will most definitely take it!!!!
The next thing I remember was a bunch of people moving me onto a bed, and then being rolled into a new room – so the transfer from the Operating Room to the Recovery Room. Because I hadn’t had the General Sedation, I was quite awake once the Anesthesiologist gave me medication to reverse the effects of the sedation I had received in the Operating Room. Again, I wish I’d had my glasses because I would have felt even more like “me”, but I understand the issues with potential loss, etc. My nurse was excellent in regards to pain control and making sure I wasn’t trying to tough it out. Because of my Fibromyalgia and Myofascial Pain, I’m already taking long acting Opioid medication and was able to follow my usual drug scheduling leading up to surgery. I am sensitive to Morphine as I find it makes me quite itchy and “jumpy” and I also get very nauseous, which is a problem for me (have I mentioned earlier that I am unable to physically vomit due to a previous stomach surgery? If I am that sick where I am retching and dry heaving, etc. I end up having to go to the E.R. to get a Nasogastric tube shoved down my nose into my stomach to get rid of whatever’s in there, so there’s nothing to puke up. Sorry…that was probably too much information).
Anyway, Fentanyl is typically ordered for me in hospital so that’s what I was given and it worked really well. That plus the fact I couldn’t feel my legs (“you ain’t got no damn legs!”) really did make the time in the Recovery Room go quite comfortably. My nurse would check me frequently to see if I could feel my toes or my knees, etc. and I was finally starting to get sensation back in the left leg after an hour, and then in the right leg about another hour later. I know that the right leg, the operated leg, was more heavily frozen and took twice as long to finally regain all feeling again. It was the weirdest thing, to stare at my toes and try wiggling them, and not be able to do a thing. It gave me an appreciation for what paralyzed people might go through, and how the tiniest movement is so joyful when it happens!
I would like to showcase the latest in legwear – the flattering compression leggings and pumping circulation wraps to prevent blood clots!!! Take a look at this and then the picture beside it shows you why. Don’t look at my tushy (blush blush!) ha ha ha!!!
Blood clots are a major concern after any surgery, but after certain surgeries in particular, total hip replacement being one of them. I wore these leg pumps for the entire time I was in bed, only taking them off to use the bathroom and to walk. Once I was back in bed, on they went. I am on blood thinners for a specific period of time as well.
Regarding the second picture, you can see my surgeon’s initials at the top. There are 53 staples in there and I think the incision is approximately 9 or 10 inches long. It’s absolutely straight and clean and will heal up beautifully!!! No wonder Dr. Burnett is the best!!! To get a better idea of where it’s located, I am laying on my left side, and the incision is on my right hip. The top of the incision is on the left of the picture and if you count off the spaces between the pen markings, my hip bone is between 4 & 5, almost right under the initials.
When I had regained a good portion of feeling back, I was finally moved from Recovery to my room in the South wing of the hospital. I had a private room – not that I had requested one, but apparently 80% of the rooms are private, which in my opinion is quite lovely. I don’t mind a roommate, but I really prefer my solitude, especially because I don’t sleep and I’m up at all hours. I would feel guilty if I disturbed anyone. I’m also fortunate to have Insurance coverage for this too.
The nurses kept me on oxygen the entire time I was there. I had planned on using my CPAP machine, but because I really don’t sleep much in the hospital, I had Ray take it home and just stayed on the oxygen. Here I’m just resting after getting all settled into my room. I’m waiting for Ray to get here…oh, and look. Here he is!!!
And yes, I finally have my glasses back too!!! All the better to see my fantastic husband. How I love this man…he takes such good care of me. I only just noticed after adding this picture how close I came to giving you a peep show with my gown slipping. Geez…you already got to see my tushy…I think those drugs really did a number on me. Time for some sleep me thinks!!! Actually, what I really wanted was food. I was so hungry at this point (I’m guessing this photo was taken around 7 or 8 pm?) but my Nurse Lisa told me that if I ate, I’d probably just get sick and throw it up (aka, get the dreaded NG tube!!) even if I didn’t have a General Anesthetic. I still had drugs in my system and she’s seen it happen enough. I did get some tea finally and then at around 11pm, Lisa showed up with this:
Yes, that was a roast beef sandwich on white bread with butter than I inhaled plus crackers and cheese!!!! I ate the first half of the sandwich so fast before thinking “oh, I should take a picture for the blog”. Ha ha! It really was the best thing I’d eaten in a long time. Finally, I felt tired enough to try and sleep, so we did one fun go-round with the bedpan (there was no way I was ready to try and get out of bed yet, nor did they really want me to) and then off to the Land of Nod.
Thus ended Day 1. I shall continue the adventure again tomorrow!!!
In the course of the last few weeks, my husband and I took a quick trip from home (Victoria, BC) to Calgary to visit family and friends. We did the 12-hour drive there in one day and I’ve realized I just can’t do that anymore. Even trying to sleep in the car was painful – front seat or lying in the back. We did lots of visiting, I rested as much as I could, and we did the drive home in one day as well.
When we got home, we bought a house.
We have been house hunting for a while now and I found a listing that we passed to our realtor, who set up a viewing for us. As soon as we saw it, we knew it was perfect. It’s a single level 2 bedroom, one bathroom with a garage. There’s a good size kitchen plus dining area, a large living room with fireplace, the bedrooms are both a good size and there are two patios, one in the front and one in the back. I have 4 different rose bushes in the front of the house, lining the sidewalk, and a hydrangea in the back garden – my two favourite flowers in the world. There’s also a planter for other flowers, and we back onto a green space. Conditions come off at the end of the month and we move in mid-October.
So…what does all this have to do with Opiate withdrawal? Well, simply put, I screwed up my timing for my doctor appointment to renew my prescriptions. I ran out of my prescription of my Oxycontin on Monday, and the earliest I can see my doctor is Friday. And so I’ve been getting by through the use of all the “leftover” meds I’ve hoarded when I’ve had extras after a prescription has been filled. Or when I’ve “skipped” a dose during the day, just to have some extras in case of a situation like this. My current dose is 40mg, 3x per day, plus all the other meds I take. I also have some leftover morphine from my husband when he was dealing with a back injury. I’m taking whatever drug cocktail I can come up with just to get through, as stupid as that may be.
Why don’t I go to the ER? Because despite the fact I have well documented chronic pain, and I only go to one pharmacy for my prescriptions, I still feel like I’m being treated like a drug addict when I go there presenting with pain. I would rather deal with it at home than risk being ostracized or embarrassed. Yes, you read that right. I would rather be in pain than risk being seen as a drug seeker. The saddest part of this is that I sit on two different medical committees as a Patient Advocate, and I’ve told them this, and even though the doctors and nurses on these committees have told me how much that hurts them to hear that, it still happens.
So…I am praying for Friday to get here because Opiate withdrawals are hell, and I don’t wish this on anyone.
but there is always hope.
I thought I’d share some tips with you on dealing with a Person with Chronic Pain (PwCP).
1. A PwCP may seem unreliable to others (heck, we can’t even count on ourselves). When we’re feeling good, we plan and promise (and genuinely mean it); but when the pain hits, we compromise, adjust or even cancel, because we simply can’t manage through the pain.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it and even harder to explain.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. You may have to repeat a request or write things down for a PwCP. Don’t take it personally, or think that they are stupid.
4. The senses can overload for a PwCP. For example, noises that wouldn’t normally bother you can be overwhelming to us, especially if the sound is repetitious or high pitched. Certain sounds that bother me personally include metal against metal (i.e.: two forks stuck together), the smoothie maker, or repetitious sounds I can’t identify.
5. We don’t have an abundance of patience when it comes to things like waiting in a long line or listening to a long drawn-out conversation. Our pain levels are usually fluctuating and we mostly want to get back to our “safe places”, such as the home. PwCP don’t want to be seen as rude, ever…but we may come across that way if we seem in a rush to get away.
6. PwCP need and value a support system, so this next point is really difficult. Please don’t ask “how are you” unless you are genuinely prepared to listen to the answer. Chances are, we’re only going to answer you with “fine” anyways, to save you from how we’re really feeling.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like loading the dishwasher, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. There’s no way of knowing when this will happen. We’re not being lazy when something doesn’t get done…we may just be trying to get over a hurdle.
8. Pain can come on fairly quickly and unexpectedly. Sometimes it lasts, and sometimes it abates after a short rest. A PwCP may appear perfectly fine one moment and look like they’re at death’s door the next. It doesn’t take much to wear us out – but often, when we’re in the middle of something fun and dear to our heart, we will continue on long past the point we should have stopped because it makes us feel normal.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the PwCP knows there is a refuge if needed. A PwCP may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a PwCP. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort. Just know that when we say we hurt…we hurt.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That doesn’t reduce the pain, – it only reduces our ability to give it a label. Having you believe us is still the most important thing that we need to feel validated.
I hope this helps a bit to give some understanding of how PwCP work. If you have questions or comments, I’m happy to reply. Thanks for reading and as always…
there is always hope