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Rudbeckia fulgida, faded through the summer heat of 2011. (Photo credit: Wikipedia)Article by Wendy McCance
I have had a lot of communication with readers who were very interested to read about managing day to day life with fibromyalgia. Every person who has this autoimmune disease seems to have different challenges. Some people manage fairly well and can deal with the aches, pain, and fatigue because it isn’t severe. Other people are basically out of commission because of the level of symptoms they experience. My symptoms tend to have high and low moments.
Each day I am stiff and sore when I wake up. Sometimes I feel like I am cemented to my bed and the effort of rolling over and picking myself out of bed is difficult and painful. I am unable to live a fast paced life because it would knock me off my feet. As long as I have some down time each day and don’t over schedule myself with too many activities, I manage fairly decently. I can’t sit for hours on end (too painful as everything stiffens up and aches). The same is true for standing on my feet for too long. Shopping trips work well when they are under two hours.
My biggest challenge recently has been the heat. The longer I have had fibromyalgia the worse my sensitivity to heat has become. This is one area I am still trying to figure out how best to manage. I have had days where if I’m in the water, I do pretty well as long as I don’t spend too many hours outside. Other times if it is really hot out, just sitting on my porch for a small amount of time makes me feel extremely achy and sore.
I went to the beach over the weekend with my family. I hadn’t been to the beach in a few years and felt we were all over do for some fun in the sun. We took our paddle boards, a frisbee and a huge amount of food and met up with some friends who had brought their kayaks for the day.
It was a nice day in the upper 80’s but there was not much shade in sight. Even the area we would be grilling some food had very limited shade. The water was the warmest I can remember ever experiencing. I knew to get some sunscreen on right away and start drinking liquids. We spent most of our time in the water having fun on the paddle boards and throwing a frisbee around. I made sure to have a water bottle in my hands at all times and ended up drinking 3 bottles in a 2 hour period.
Right around the time the guys started getting the food ready to put on the grill, I became extremely dizzy and nauseous. I sat down on a blanket, drank some more water and had some fruit. I only felt worse and knew my time in the sun had come to an end. Everyone was great about the situation which I was so relieved about. I felt so bad that I was cutting everyone’s fun short. We hadn’t even been at the beach for 3 hours. Thankfully my husband’s parents live around the corner and we were able to extend the good time over there.
My in-laws have a pool and a grill. The kids were thrilled to continue swimming and the guys were happy to cook up some food. I got into the pool to cool down when we got over there. The pool water was nice and cool and helped shake off some of the heat I was experiencing. After I dunked myself in the pool, I spent the rest of the time in the shade. The kids had plans in the evening so we were only at the in-laws for about an hour and a half.
That night I got really sick. I felt like I had a bad case of the flu. The bathroom became my best friend and I camped out there for most of the night. The next morning I was running a fever and spent the day in bed. I did a lot of sleeping and drank buckets of water.
Now it’s two days later and I am still recuperating. I love summer and being active in the great outdoors. As I’m finding out though, long periods of time in the sun are not for me. I have had past experiences with the heat and my bodies reaction to it, but this was by far the worst experience yet. My body just can’t tolerate the heat the way it used to.
For anyone who has any illness that limits their time enjoying the sunshine, I feel for you. I have always enjoyed family bonding time in the summer months. Biking, swimming, picnics, hikes, camping, canoeing, fishing and the list goes on have been great moments I have shared with my family. I know I don’t have to give a lot of it up, but I definitely have to find ways to make it work. Have you had any experience like this which was related to an illness? Do you have any advice on how you managed to deal with it?
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Wendy McCance
To contact Wendy McCance about a writing or social media assignment, interview or speaking engagement, please email her at: [email protected]
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Pingback: Fibro Daily | For Our U.S. Readers: Dealing with the Summer Heat - Fibro Daily
Your “matter of fact” is so true. I, too, have FM and was diagnosed about 12 years ago. It is the life I have, even though I didn’t choose it, so I’m with you-make the best of it. I recently wrote a series of 3 pieces on my blog (clilck my photo) about living with fibro if anyone is interested. Thanks for your work in telling it just the way it is and staying upbeat.
Hi Lois, thanks so much. I’ll have to check your blog out. It’s always comforting to read other peoples experience with fibromyalgia.
I know. We can bolster each other! Thanks.
Hi Wendy,
I just came across your post on LinkedIn, and of course it hit my eye. The word Fibromyalgia has been a constant companion to me since being diagnosed (sort of, with ruling out other diseases) last year. I am a mother to 4 young kids and this has taken over my life, to some extent. Tough, tough. Since this is a trial and error situation between meds and alternative approaches, I haven’t yet figured out what is the answer for me. Like you explained, mornings I deal with stiffness, some doses of weakness and fatigue thrown into the mix, and lots of pain. At any given time. But I do not let this ruin me. I am currently working on my own line of baby bedding, http://www.snuggleberrybaby.com, have a nursery decor website, and have been decorating kids bedrooms and nurseries for a while. I work from bed lots of days. But being goal oriented and focused, I push on. Thanks for sharing and validating my experience for me. It feels nice to know we have partners in our pain, It takes the edge off.
Thanks,
Chavy Abelesz
Sounds like you have found a perfect career that works well with fibromyalgia. I have 3 children and can understand just how difficult it is to be everything to your kids when it feels like you are walking around with the flu. As time goes on, you will find ways to adjust your life so that you can make the most of it, even with this awful disease. Take care, and thanks so much for your comment.
I feel so terrible that you have to live with this….I have friends who also suffer this way, and it seems to be genetic. I hope the rest of the summer will feel better and you will have some good experiences….I always enjoy your blog! 🙂 🙂 🙂
Thanks for the kind words. Honestly the summer has been pretty great. I like to look at this as a minor setback like having the flu. I had to rest up, but there will be good days ahead. 🙂
Sounds good!! 🙂
I can completely relate, I’ve had FB since 1991, I was diagnosed in 1993. No matter what temperature fluctuation, it bothers me. I have found I am most comfortable between 60 and 70 degrees and any water that I get in has to be warm or hot. I had to run around this morning in the car and I was fine until the day started to get hot. I ended up coming home sick to my stomach about 12:30 and had to hit the bathroom shortly after that. Then of course, a 2 hr nap. there are no easy answers to this supposed syndrome. About 5 yrs after being diagnosed I developed a hyper thyroid. I was on meds for a year and a half and it went into remission. Then 5 yrs later it came back again only worse. After being on meds for a little over a year, I knew something was wrong. I went to the doctor and long story short, I found out I now have graves disease, an auto immune disease. One day i was looking up some info on the computer and found the FB center here in Denver. I began reading and found they believe FB and thyroid conditions seem to be linked. I wanted to let you know this and maybe you can prevent this from happening to you. I am not on meds for FB. I cannot tolerate most meds. I have done it with ibuprofen and massage and hot baths or going to hot springs here in Colorado. Also, make sure you stay away from caffeine and exercise. Even walks. Try to eat right and drink a lot of water. Now I am writing a fantasy fiction series and it helps me to go to other worlds, medaphorically of course. If you ever need any advice or questions let me know. I am here for you! My blog is http://www.lisafender.com. You can find me on Facebook from there too! Take care and keep your chin up. You will find what works for you and don’t let this control your life, you take control of it!
Hi Lisa, the similarities are remarkable. After my last child was born, I was diagnosed with graves disease. I had a severe case and ended up having radioactive iodine treatment to stop my thyroid from being overactive. I take synthroid each day to replace the lack of an active thyroid. I had graves disease 9 years before I got my fibromyalgia diagnosis.
Thanks so much for taking the time to comment. I’m looking forward to checking out your blog. Wishing you all the best. 🙂
I am trying to avoid having them ‘kill’ my thyroid, so far so good. I am in remission right now and they check my blood every three months. I stay away from caffeine as much as possible and I am trying to lose weight. I hope it doesn’t flair up again because I don’t want to be on meds the rest of my life. I hope these docs start admitting the connection of the two!
Sounds like your in pretty good shape if you are trying to lose weight. I dropped 10 pounds in a week when my overactive thyroid became severe. I hope everything works out for you.
Oh God, that’s what I’m worried about if i lose weight! I hope that doesn’t happen!
I’m sure you will be fine. If not, thankfully there are pills to get your health stabilized again.
I find you simply amazing!! I love your positive outlook despite the severity of your symptoms. Thank you for sharing your journey with us. I will keep you in prayer!
Aw, thanks. You only get one life and I don’t want to miss a thing.
I am so sorry you have this condition — I have no personal experience from it other than when I worked as a personal trainer, one of my clients had fibromyalgia — I did a lot of research on it so I could help her and be sensitive to her condition.
Pain is a snarly little bastard.
That’s awesome that you were able to help. I think it’s wonderful that you researched the condition and tailored a program for them.
I was a good trainer *smiling* The gym always sent me what they thought where “tough cases,” but what I saw as Women who just needed someone to listen and to understand their conditions by taking time to learn about them - or just to be aware and use empathy.
I had a burn victim who lost most of her fingers; there was a hearing impaired girl that we somehow made up our own way of communicating (I wish I had known handsign but I did not). And others for whom I hope I helped in some small way.
It was rewarding and I felt honored to work with these women - not just ones with “conditions” but all of them. I miss personal training sometimes.
You are amazing. Those woman were lucky to work with such a caring individual. 🙂
I have no advice and have no idea how you much you suffer or how you manage with this condition day in and day out but I will tell you that I think people who have debilitating conditions are amazing. I do not know how I would cope if I was like that. I do believe it is a tial and error thing meaning that you will learn how to manage being in the heat simply by doing so and trying different things till you find what works for you………….I like that you see it as just the way it is and that you share your experiences with us it is how those like me who have never heard of the condition before learn about it………………..thank you for that.
http://jo-annemotherandnanna.blogspot.com.au/
Thanks for your comment. 🙂
I suffer from fibromyalgia too, although my symptoms have lessened over the last few years. For that I am grateful. But the aches and pains, the bone-numbing fatigue, the inability to achieve a good night’s sleep are still with me. Rather than the actual sunshine bothering me, I find it is the heat/humidity that wrecks havoc with my ability to cope. I live on the Atlantic Coast and the humidity is high here-it drains me so much that some days I can’t move much at all.
I hope you gradually are able to stay longer in the sun enjoying time with your friends and family, and am glad that you have found a way for now to work around your limitations. Good luck with the rest of the summer.
So sorry to hear that you have to deal with fibromyalgia. I know what you mean about the humidity. It can really tire you out. Take care. 🙂
Ah honey, I am so sorry for your troubles. Being challenged with something like that at any age is difficult especially for a family such as yours. I think with everything you have mentioned, you are doing well. My disability is very different and is manageable and certainly not as debilitating as your.
You know, it’s just life. No biggie, more a nuisance than anything. 🙂
What Emotional pain are you holding in you. Go within connect with your spirit. Marian.
Hi Marian, thanks for the concern, but I’m not holding in any emotional pain. I tell these stories as a way to let others know that they aren’t the only one going through these issues. It’s not painfully written, it’s just a matter of fact that this occurs in my life.