How to 'Beat the Heat' This Summer If You Have Fibromyalgia


Do you have problems regulating heat? Are you sensitive to weather changes? Does the heat make you sick?

Many people with fibromyalgia find the better weather usually means less pain, but they find themselves with a new problem: the heat makes them very, very sick!

Unfortunately, that seems to be a common problem.

Fortunately, we can do things to keep ourselves cooler, starting with our homes. If you don’t have central air conditioning, it is probably worth the small investment for a window or portable unit.

Keep your bedroom cool, even if just using fans. Having somewhere you can sleep is one of the most important things you can do. Getting a restful night’s sleep is challenging enough. Trying to do it when you are hot is miserable!

You can find other tips for cooling your home here.

Once our house is cooler, we are halfway there!

 

Take special care to use sunscreen. Some medications might make your skin more sensitive to the sun.

But we can’t stay in our cool and hopefully air-conditioned houses all summer…not if we want to enjoy it, even a little bit! So, what can you do to help keep cool this summer?

– Be picky about the time of day. Avoid being outside during the “hottest” parts of the day, usually between 11:00 a.m. and 4:00 p.m. If you have a choice, spend these hours indoors!

– Choose your clothing wisely; light-colored, loose and breathable clothing will be cooler. Wearing a hat, especially one with a wide brim. This will protect your face from the sun. Sunglasses (polarized) will help to protect your eyes – a necessity if you get migraines.

– Stay hydrated. If you feel thirsty, you are already dehydrated – or that’s what I have been told all my life. The minimum you need is eight glasses a day, more if the temperature is higher and you’re sweaty! One of my personal favorites is ice water with lemon, but you can infuse water with all kinds of fruits!

  • Make it a habit to have a reusable water bottle with you whenever you go out.
  • Something I learned from one of the many times I have had heat exhaustion, is to make sure to include something with salt to help balance electrolytes.

– Make sure to eat something! Save the heavier meals for cooler days, and stick to light and refreshing choices. These are the perfect days for sandwiches, salads and fresh fruit. Outdoor BBQ-ing is another great option! Or just order in.

Some Great Tips…

I recently asked my family, friends and a Facebook group I love what tips they had to “beat the heat” this summer and they had some great ideas!

Plenty of people choose to stay indoors; a general agreement was the need for A/C.

And a whole lot of people said they spend the time in water…either a local pool, the beach or a lake. The cool water is definitely a favorite!

Some other ideas included…

“Use a spray bottle filled with water and a few peppermint essential oil drops, spray on skin and it will cool you down.” One I didn’t know, and am looking forward to trying (I mixed in five drops to about three ounces of water, but it’s raining today.)

“I take showers to cool off – really helps before bedtime,” “running water over my wrists and feet” and “going to bed with damp hair” were a couple other great ideas!

“Cold compresses” was another, either using a regular damp facecloth or towel (put the facecloth in a Ziploc in the freezer for drip-proof version).

“Cooling cloths” from a store (I found some at my local Winners store and Amazon online). You wet it, wring it out and it stays cold for hours and doesn’t drip and get you all wet. Perfect to take anywhere, even to bed! Using one on the back of your neck can help cool you down.

And if you have a family, spend a day at the water or spray park. Jump in when you’re hot, sit in the shade when you’re not…and spend some quality time with the “little ones.” Take a picnic.

And a Couple of Fails…

I have heard of people putting sheets and pillows in freezers before bed for a more comfortable sleep… I can see the pillow, but by the time I remake the bed with the sheets from the freezer, those sheets wouldn’t be cold anymore!

A friend suggested eating spicy food, as it apparently drops your body temperature and makes you sweat. Personally, I don’t need any help sweating, and spicy food doesn’t agree with my tummy, so nope, not for me!

Do you have any tips or tricks to beat the summer heat?

Cheers,

Chelle

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Thinkstock photo via Chitra Tatachar.

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Learning to Manage the Physical and Emotional Pain After My Diagnoses


As a child, my health was generally good. As an adult, things have been much less straightforward.

My health waxed and waned throughout my 20s. I moved to a city I adored, made friends, lost friends, explored art and music and had a career. It was a beautiful, exciting time in my life that also brought great pain. It reminds me of one of my favorite movies, “Eternal Sunshine of the Spotless Mind.” However tumultuous, I wouldn’t trade those memories for anything. Looking back, they are hazy like a dream and crystal clear at the same time. How, I don’t know.

Things calmed down considerably for me as I ventured into my 30s. I was enjoying my chosen profession and I spent most time with family and a few friends. I had some health issues, but nothing particularly alarming.

 

In 2015 I became very ill. I experienced severe weight loss, stabbing pains in my gut, fatigue beyond description, and gastrointestinal issues. I had also been plagued by intermittent tingling in my hands. I went to two doctors and they told me I was vitamin-deficient and suggested I take supplements and laxatives.

I knew deep down there was something more going on, so I went for a third opinion. In April 2016, I was finally diagnosed after years of struggling. I have celiac disease. It is not an allergy or a fad, and it sure as heck isn’t going away. It is a serious autoimmune disorder, the only treatment being lifelong adherence to a gluten-free diet. With this diagnosis came hope. It was tangible, understandable and I could say with confidence what was wrong and how to fix it. Oh, how little I knew about my own illness.

I sat back and waited for the symptoms to subside, to feel better. But instead, I felt worse. After several more tests it was confirmed my gallbladder was chock full of stones. It was explained to me that many people with Celiac Disease have this comorbid condition. I subsequently had a cholecystectomy.

After my surgery things just weren’t right. I didn’t heal in the estimated time frame, and had to extend my leave of absence from work. I continued to have pain but now instead of stabbing pain, I felt a dull ache that radiated from my phantom gallbladder to my pelvis to my back. “Man, this is some slow healing,” I thought. I returned to work functioning at approximately 70 percent. I took it slow. My coworkers were very understanding and accommodating. I am grateful for that. The pain never went away though, it just kept getting worse.

By early 2017 it was a struggle to get out of bed.  I could barely walk some days. Then “some days” turned into “most days” and “most days” turned into “every day.” Upon waking, the second my feet hit the floor in the morning, my whole body was ignited by the most excruciating pain. Pain that began at the base of my neck, traveled the length of my spine, through my joints to my feet. By now peripheral neuropathy had limited function in my hands to five-to-10 minute intervals. I had debilitating insomnia. I had to pee all the time. I have never experienced an overactive bladder before, and that is some uncomfortable stuff. I found myself missing more work than I was OK with. I have always prided myself on my work ethic and it sucks when your body takes you hostage.

After countless scans, tests and biopsies, my struggling was given a new name. Fibromyalgia. So, the good news is I have validation. My pain is real. The other good news is I am not dying. Bad news? Again, no cure. Am I gonna struggle more? Yeah.

I am currently in this awkward space of trying to figure it out. How do I manage this pain? How do I go to work in this pain? How do I emotionally accept my situation? How do I keep myself from becoming isolated? How do I maintain my sense of self? Sometimes I find myself getting very angry that my life has become so limited. It’s only natural to feel the feelings. And I make sure to feel them. Each and every one. The pain, sadness, confusion, fear, hopelessness. That doesn’t mean I am giving up. I’m just working through it.

Please do not misunderstand me: I am grateful for every day I am given. But even more than that, I am grateful for the lessons I have been taught. My experience has been tremendously humbling. We should never judge one another or make assumptions based on how things appear to us. You never know what someone is dealing with, the roads they have been forced to travel or how alone they may feel due to chronic illness.

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10 Things That Surprised Me About Fibromyalgia


I was diagnosed with fibromyalgia almost 15 years ago now, and as soon as I was diagnosed I went online to research everything I could find. What I found was not a lot of information. Unlike now, there really wasn’t much on this disease at all then.

Every morning I put on my face and didn’t let anybody know how bad it was. There were days I was so tired I honestly do not know how I coped. Every day I laughed with my coworkers, giggled with my kids, kept up with my friends and was a good partner to my husband.

The literature I found on the disease really did not give me an outlook on what the future would be like. There was nothing in anything I read to let me know that gradually over time it would get worse and worse, that every day would become a struggle, that my house would be a mess on a constant basis and that there were some days I would barely make it out of bed.

And, the literature never told me a lot of the things I’m going to tell you about now – the following 10 things that probably surprised me the most. Little did I know that within 11 years of being diagnosed, I would no longer be working as a result of conversion disorder which super-sized my fibro, that falling up or downstairs would become normal, that every morning I would need an hour and a half just to be able to push the pain back enough to be able to function for the day.

Two years later, I would have to give up driving as fibro was affecting my eyesight more and more. My life completely changed four years ago. I became what they call chronically ill, as the conversion disorder tripped me into a permanent fibro flare. Things that at one time had seemed so easy were now things I struggled to manage every day. I need a cane to keep my balance, and a walker now and again when I get really bad. A wheelchair is needed if I am traveling or doing something as simple as going to the mall.

So here we go, here is my list of the 10 things that surprised me because they either weren’t in the literature of the time, or they were considered to be rare symptoms of fibromyalgia. A couple of good things are mixed in as well – nothing can be all bad.

1. Fatigue

I did not know it was possible to be so tired – that even when you woke up in the morning you would be exhausted just going to the bathroom. I didn’t know trying to do my housework or even getting dressed would tire me out so badly that my legs would literally give out. How is it that you can be so tired, even breathing feels like a chore? Then when it’s time to sleep, you can’t. You might be able to for 45 minutes or so but then you have to get up and move around because the pain is so bad. Broken nights contribute heavily to the fatigue, but even on rare occasions when I do sleep through the night, I wake up exhausted. I would never have believed that taking a shower could become a major undertaking and that I would be so tired afterwards it could take up to two hours for me to be able to get up and function.

2. Fibro Fog

Although the things I read told me about fibro fog, it is not really understandable until you’re going through it. I didn’t know I would forget what I was speaking about in the middle of a sentence, that I would forget the name of my husband or child, that words which should come easily to me don’t and that stuttering would become a way of life as I struggle to find the words.

Of all the things associated with fibromyalgia, this is the one I find hardest to deal with. How embarrassing to forget your best friend’s name or where she lives or her phone number; how embarrassing to be talking to your husband of 26 years and not be able to recall his name; how devastating to be speaking to your child and not able to recall their name. On those days when it is really bad, it hurts me so much to know that at some point I will hurt somebody’s feelings by not being able to remember what they are called.

 

3. Journaling

This one actually surprised me a lot. Who knew journaling every day would be able to give me a look back at how I have progressed over time? My tip to anyone who is struggling with chronic illness of any kind: keep a journal. It will give you the opportunity to remember the good days, the great days and the wonderful days.

It will give you the opportunity to look back on those very black days when depression and anxiety had you so down you actually believed it would be better if you weren’t here. It will make you remember the reasons it’s better you are here.

In my journal, I write down quotes I find inspiring, things I really want to remember and who I talked to each day. I write down project ideas, recipe ideas and think of ways to make my housekeeping easier (for heaven’s sake, it takes me 45 minutes just to make the bed). The journal is like my memory for those days when it isn’t very good.

4. Loneliness

This one I guess I should have expected – that one by one the friends would all drop away, that I would have to cancel on them at the last-minute or just flat-out say no. It seems so funny to me I have friends all over the world online that I speak to at least a couple of times a week but those who were closest to me are no longer there. I have made some very strong friendships online but all of my friends who live close by I never see any more.

5. The Itch

In all of the literature I read on fibromyalgia, they mentioned the possibility of being itchy, but that it was a mild symptom and not everyone has it. They lied. Sometimes the itching is so bad I literally cut myself with my nails from scratching. It does not matter how much cream I use or any of the other itching remedies everyone recommends – the itch is unrelenting. There is not a time when some part or other is not itching. I have learned to be careful with just how much I scratch.

6. People

I am surprised all the time by the bad manners of people and then I am pleasantly surprised at the kindness of others. The number of times I have been walking towards the door and instead of maybe helping me out by holding it for me, the person just lets it go even though they have seen me coming. On the other hand, there are wonderful people who not only see me coming that then hold the door for me or offer to help me in some way but say something to give me a laugh or to make me smile.

For instance, I was at the nail salon yesterday to get my pedicure (I can no longer reach my toes without losing my balance and getting dizzy, even when sitting down) and there was the most wonderful lady and her husband also having a pedicure. She was about to turn 80 and he was getting very close to 90. She literally had me in hysterics the whole time we were there. I once wrote a post about kindness and how it was becoming a lost virtue; I can tell you with absolute certainty that not all the kindness is gone.

The other thing about people is they all think they have the answer or the cure for my problem. The fact that I tell them their cures and suggestions are all things I’ve already tried doesn’t seem to faze them. They are convinced there must be something I can do that will stop the disease in its tracks, or they plain just don’t believe you could have something that can’t be fixed.

7. Body Temp

Reading up on fibromyalgia, I discovered I was going to have problems with my body temp; since I was already going through menopause, this was not good news. I had already gone through the night sweats and the hot flashes were still running me down, but then along comes fibromyalgia, and as it progressed, the temperature swings became worse. When I was cold, I was freezing and when I was hot, it was hard to breathe. I would be literally dripping from the ends of my hair during the hot flashes amplified by fibromyalgia; and three or four blankets plus a couple of sweaters could not get me warm, because being cold was also amplified by fibromyalgia. I am mostly past the hot flashes now. I only get them now and again. For me, it is mostly the cold that takes over and that I have to deal with, but every now and again I’ll be lying in bed and the furnace goes on and it’s not a night sweat and it’s not a hot flash – it feels entirely different. The heat is, at times, unbearable – almost like you are in one of those places with super high humidity and heat.

8. Trading Off 

It has become a game of trade-off; if I do this today, how little am I going to get done tomorrow? Should I do the dusting knowing tomorrow the only thing I might be able to do is shower, or should I leave the dusting for today and hopefully be able to put a meal on the table and play with the dogs and who knows, maybe – just maybe – I might be able to do a load of laundry as well? See what I mean? The trade-off every day; what can I do today that won’t incapacitate me for tomorrow? It is a constant balancing act.

9. Online Friends

I think one of the biggest surprises for me was just how many people with chronic illness I would meet online. How meeting them made me feel not quite so alone. Talking to others and discovering how they spent their days and learning about the compromises they made helped me to figure out my own system for getting things done. I have talked to so many whose conditions are more severe than mine, and yet our spirits are still high and each and every one of us still hopes that in the end, the medical establishment will eventually find a way to help and maybe even cure us.

10. The Guilt

Nobody understands just how guilty you feel not being able to do the things you used to. For instance, it has become normal for my house to be a mess, as my bad days far outweigh my good days. I know my floor needs to be washed but if I do that then I am literally going to be laid up for two or three days to recover from it.

The same holds true if I attempt the dusting, the vacuuming, the bathrooms, the laundry, just about any household chore. I have a cleaning schedule I made up that allows for latitude and how much gets done in a day. Some days I have to stay almost motionless so I can make dinner that night.

As one might expect, the guilt of sitting down on my rear end all day and not getting done even a third or a quarter of what you had planned for that day is so weighty you feel like you have an elephant or gorilla sitting on your shoulder.

A good wife and Mum is supposed to keep the house clean (and yes, I know how old-fashioned that sounds but it was the way I was brought up), is supposed to cook meals every night, is supposed to be the one being leaned on when it is needed, not the other way around. Thank God for my husband – he is now and has always been the tower of strength I need when the guilt and pain overwhelm me, and he steps in and takes up whatever the challenge is. But, that also makes me feel guilty after he has worked all day and then has to come home sometimes to a wife who really cannot do anything some days.

Wrapping It Up…

If there was one thing I could say to people who do not have a chronic illness, it would be that this disease is real. We are not faking, we are not being lazy, we are not just trying to get out of working. We have real and, in some cases, horrible, horrible pain. You would be amazed how many people think and say that to our faces.

I would also like you to know I am not ignoring you when you tell me all I need is to get a little more exercise or get out of the house more or be more sociable. I am simply not willing to listen to people who have no idea what it’s like, and thus have no concept of how many times we have heard these same things over and over, even from family members at times.

I think it would surprise you to know just how much we force ourselves into appearing normal so people don’t know how much pain we are in. Many of us put a smile on every morning hoping we truly can hide just how badly we feel, but that smile is wiped from our faces the moment we step in our doors. We generally do not want your sympathy or your pity. We are warriors and we push ourselves every day to be the best wives, mothers, coworkers and friends we can be. We are stronger than you could possibly imagine because every day we have to struggle to get through the day knowing somebody somewhere thinks we are a fraud.

This post originally appeared on Barb’s Outlook.

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21 Things Doctors Don't Tell People About Fibromyalgia


When you are diagnosed with any chronic illness, a good doctor should tell you about the symptoms, inform you of the prognosis and offer ideas for treatment or management of the condition. However, fibromyalgia was formally recognized only a few decades ago, and many doctors are still unfamiliar with the illness and how to treat it. Furthermore, it is difficult to truly understand the physical and emotional symptoms a person with fibromyalgia experiences on a daily basis if you haven’t been through it yourself. This can make it hard for doctors to offer patients a full picture of what life with fibromyalgia might look like after diagnosis.

We asked our Mighty community to share some of the things doctors didn’t tell them about fibromyalgia. Let’s raise awareness and improve our understanding of the illness so doctors can better prepare their patients for the road ahead.

Here’s what the community told us:

1. “They don’t really understand fibro. It varies so much from person to person, and treatment plans are different for everyone, so there are lots of things doctors don’t know about this condition yet.”

2. “You [might] lose friends because you can’t go to every event you used to. But the friends you do keep are amazing and super understanding.”

3. “I actually had a great doctor when I was diagnosed because his wife has it as well. He told me the good, the bad and the ugly. He did also admit that most doctors including himself don’t fully understand it like they should.”

4. “They won’t [always] take other health issues seriously because ‘it’s probably just a symptom of fibromyalgia.’”

5. “There will be people who don’t believe/don’t care about your pain and exhaustion. You [might] have to hide the fact that you are even sick to protect yourself.”

6. “I have yet to have a doctor believe me. They always say I’m too young.”

7. “Most doctors don’t know enough about fibromyalgia to be able to treat it. They didn’t have answers as to why I have so many symptoms or how to manage them. I learned to keep up with current research to educate my doctors and be my own advocate. I learned to pace my activities, and rest when I needed. I learned to trust my instincts more, and not care about offending family, friends or providers with my answers and actions.”

8. “They don’t tell you about the emotions you will have to deal with every single day, the grief for the person you used to be, the guilt you’ll feel every time you let someone down and cancel plans, the fear of the future and the feeling of being a burden to your family. No one emotionally prepared me for life with fibro.”

9. “It affects everything. More than just your body. It will affect your social life, your work life, your love life, etc.”

 

10. “Every person responds to treatment differently. You have to become your own advocate and search out any and all treatments to see if they work for you.”

11. “They don’t tell you sensory overload is a thing and every sound, flashing light and smell can affect you on good days and bad.”

12. “Doctors don’t tell you how hard it will be to do everyday tasks.”

13. “They don’t tell you how likely you are to have other problems because you have fibromyalgia, such as irritable bowel syndrome (IBS), restless legs syndrome (RLS) or anxiety. They don’t realize how hard it is to have this illness.”

14. “Most won’t tell you to find a rheumatologist who specializes in chronic conditions like fibromyalgia; the specialists cost more to visit, but they are knowledgeable about the condition. Also, do your own research on the condition, symptoms and treatments. At the end of the day, you are your best advocate; empower yourself with knowledge any way you can.”

15. “You will never have good quality sleep and will always be tired. You will have a hard time focusing/concentrating on simple tasks which will seem overwhelming at best.”

16. “Meds don’t [always] work, but meditation, music therapy, art and sleep are your best friends!”

17. “I would constantly be questioned by everyone about the validity of my pain, my diagnosis and my treatment plan.”

18. “Some people can get better with natural remedies. Drugs are not the only way to go. I’m not saying natural remedies will cure you. But they can possibly help relieve your symptoms. This may require a total lifestyle overhaul. But anecdotal stories of improvement abound.”

19. “[They don’t prepare you for] the look of confusion and disappointment in your child’s eyes when you tell them you’re too tired or in pain to play with them.”

20. “What is a 10 today [might] be a seven tomorrow because that pain threshold – where you couldn’t possibly take anymore – it keeps shifting and it only goes up.”

21. “There’s a grieving period that differs for everyone… Grieving our former life, emotionally, physically and psychologically. Depression and anxiety happen and can exasperate flares. It is a life-changer, but not a life-ender. Take your time to grieve, then move forward. Find solid support and be honest with yourself and others. It will be OK.”


21 Things Doctors Don't Tell People About Fibromyalgia
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Conquering the Fear of Pain and Loss Due to Illness


I’ve always been very independent, strong-willed, action-oriented, fun-loving and free-spirited. I have vision and drive and lots of optimism – always ready to start a new creative project, go on an adventure or fight for a good cause. Except when I feel ill, and the pain is so bad I think I’ll die soon. I have an autoimmune disease that presents itself in a variety of illnesses and symptoms.

I’m not afraid of dying, I just want to live a long and healthy life like anyone else. I’m afraid of the pain getting worse, because it has been getting worse over the past 15 years. I’m afraid I won’t be able to endure the pain and other symptoms much longer. I’m afraid I won’t be around to experience grandchildren.

But I’m a fighter, always have been. About five years ago I was on disability, but I didn’t want to be. I worked hard to improve my health and get stronger. I did part-time work for a while and gradually started my own online business. I got off disability about two and a half years ago when I had made significant health improvements.

 

Unfortunately, this past year the symptoms of this disease have been the worst yet. Gradually, over the past nine months, the flares of fibromyalgia and the arthritic inflammation have increased in frequency and intensity. Because of weak muscles I fell down my front steps on Christmas Eve, badly spraining my ankle. During the winter, I was constantly dropping things – my hands just had no strength. I broke a toe during the spring, further decreasing my mobility. The pain and inflammation got so bad I couldn’t walk up a few steps, I couldn’t cook, bend over or push a vacuum cleaner. My legs and hips are always swollen and painful. Even now the pain wakes me up several times throughout the night, or prevents me from falling asleep at all.

So, yes, I’m afraid of continuing to live like this. It stops me from living normally. I had to turn down a job offer because I couldn’t do the tasks consistently. I may have to sell my home and move to a better climate, even though I don’t want to and can’t afford to. I’m afraid I may have to go back on disability, because it’s not enough money to live on. I don’t like being dependent on others.

I’ve had health problems since birth. I had colitis and food allergies as a child, as well as scoliosis. These things were small in my mind, minor inconveniences in an otherwise active and happy life.

I’m a creative and adventurous person; normally I’m not afraid to try anything new and fun. I’ve traveled the world and been involved in many types of charitable work. I’ve given birth to and raised three children who are now successful adults. Through it all, there were bouts of pain, illness and fatigue, but I thought that was normal – until 15 years ago when I was diagnosed with Hashimoto’s thyroiditis. It had gone undiagnosed for a long time and my thyroid levels were so low the doctor wondered how I was still alive.

The doctor said I could get better but I needed to be monitored closely for a while. She said it’s an autoimmune disease and other things might develop. I’ve always been into natural health, so I took responsibility for finding solutions. It was just another opportunity to learn and to improve myself.

Working at my health keeps me going. It gives me hope when I find something that helps me feel better. I’ve become an expert on wellness. I’m very strict about my diet, supplements and routines to maximize the health benefits. I’ve been to more specialists and alternative health practitioners than I can count. I’ve tried so many medicines and natural health remedies that I could write a book about it. I meditate, and when I’m not in pain I do yoga.

But nothing has helped during the past nine months and now I’m getting an ulcer from taking too many NSAIDs. I’m also feeling insecure about my future. Doing my online work has become difficult because sitting for long periods is as bad as standing all day. I need to keep moving at gentle intervals, and I need to reduce my workload.

I’m afraid the pain, muscle weakness, tiredness and brain fog will kill me. But I want to live, and get well, and do all the things I love to do. I want to work, I want to support myself, I want to travel and enjoy my family and friends. But I’m so exhausted that I don’t know if I can. It’s a terrible feeling to be gradually getting worse when you’re trying so hard to get better.

I’m still making plans and goals, but I’ve accepted a slower pace; I had no choice. I’m letting people know that I need help, and that I can’t do as much as I used to. I’m researching ways to live more efficiently by reducing cost of living and giving away anything I don’t really need. And I’m putting less pressure on myself by not overexerting on good days. I’m trying to enjoy the little things, like my pets and hobbies, while I still can.

I get depressed because of the relentless pain, the constant conflict of wanting to do more than I can and the insecurity about my future. But I don’t dwell on those thoughts, I focus on solutions instead. The depression is an undercurrent that’s not obvious to others, but it rears its ugly head when I’m alone on painful rainy days.

I do believe my life can still improve, but I must make some hard choices, like selling my home and moving away from family and long-time friends. It will be a new adventure with different challenges and opportunities to learn. Fortunately, that’s what I like about life: discovering new possibilities for living life to the fullest and not letting the fear or pain win.

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Going to the Emergency Room When My Pain Is 'Too Much'


Fibromyalgia, joint hypermobility syndrome and chronic fatigue syndrome all cause some form of pain. However, for me, the worst of them is the pain I get from fibromyalgia.

Most of the time when we are in pain we can take some paracetamol or ibuprofen and the pain dies down. Or if it is particularly bad, we may use opiates such as codeine or tramadol. But what happens when these painkillers do not get rid of the pain? When taking a handful of painkillers is basically like swallowing a handful of smarties?

That’s what life with fibromyalgia is like. I am in constant pain that is not relieved by traditional painkillers, and even the atypical medications prescribed barely touch the surface. I can’t count the amount of times I’ve been told to exercise or meditate instead of taking painkillers. As if these are the magic cure to the excruciating pain experienced by people with chronic illnesses. I cannot count the amount of times I’ve been told this pain is “all in my head” and no one could possibly be in this much pain all the time, or even that I’m too young to be in this much pain. This pain is not in my head – it is very, very real. I would not be asking for help if I didn’t think I needed it. I would not be asking for increasingly stronger painkillers if I had not tried everything in my power to avoid it.

 

I only go to the emergency room when I am absolutely desperate. When I have taken a concoction of medications that would knock most people out. It is very rare when in the ER to find a doctor who understands chronic pain. The trouble with emergency medicine is that they want to find out what is wrong and cure it. The trouble with me is, I already know what is wrong and there is no cure. I just need pain management. But the ER is an absolute last resort, for when I’m sitting in my room in so much pain I cannot bear it anymore. But when I get to the emergency room no one knows what to do with me.

I have a care plan in place that has been set by the Pain Clinic. It states if I attend the ER I am to have IV paracetamol and morphine and to be treated in a kind and understanding manner. You might find it strange that my care plan says “to be treated in a kind and understanding manner;” however, I have been treated so appallingly by some staff that this statement is necessary. I’ve been called an attention-seeker, a drug-seeker and a manipulator. None of these are true. I do not want your attention, I just want you to help me. If I could get by without any drugs then of course I would. Just because I cry and say I wish I was dead does not mean I am manipulative. I come to the ER when I have no other option, when I am desperate. Just because you cannot see my illness does not make it any less real.

The other problem is many doctors do not believe fibromyalgia is a real illness. These views tend to come from older doctors as, when they were trained, illnesses such as fibromyalgia had not been discovered or were still very rare. These doctors are often under the understanding that fibromyalgia is “all in the patient’s head” and that they need psychological help. Of course there are always exceptions to this, and I have found a few older doctors who are understanding and a few younger doctors who do not understand fibromyalgia. All I ask is that when I turn up to the emergency room, I am treated with respect and kindness. That I am not labelled as a drug-seeker, but am instead given the relevant pain medications and cared for like any other patient.

I am so very thankful for the NHS and all the understanding and kind doctors I have seen. I dread to think where I would be without the help of the NHS. This post is not to negate the great work these doctors do, it is simply to explain a side of the NHS not many people see.

Until next time,

Louise xox

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