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Adrienne Dellwo

The Fibromyalgia Camping Checklist

By April 18, 2012

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Camping is something I thought I'd have to give up after I developed fibromyalgia. I was sad about that, and my husband and kids were even sadder.

Because we didn't want to stop going, we started looking for solutions to the multiple problems camping posed for me. A few years of experimentation has lead me to a pretty good checklist of what it takes to get me through a few days in the wilderness. You can see it here:

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Comments
July 11, 2009 at 1:06 pm
(1) Ruth says:

I’d like the natural mosquito repellant recipe if it worked for you!
thanks.

July 11, 2009 at 7:57 pm
(2) Cynthia Armistead says:

I’d love to get that recipe, too! My daughter and I both have FMS, and we seem to attract mosquitos but have problems with most repellents.

July 12, 2009 at 1:49 am
(3) Linda says:

I also want to know about people that go camping who have FM…same sort of situation, with my man loving camping and I haven’t yet gone and now have FM….I don’t think he realizes how that may be a barrier and I hope there are ways to cope…please forward the mosquito recipe if you can!

July 14, 2009 at 6:00 pm
(4) Kirstin says:

I am 16 years young, and have suffered for about a year from fibromyalgia. My family and I love camping, we usually take three camping trips a year, and we are hiking and fishing every day. This past year, with my various pains and weaknesses, our trips have been modified greatly , but they are not impossible.

My most recent trip was in mid-June, only two weeks after I had received my diagnosis. Rather than bring the harsh mosquito chemicals, we brought the Off clip-on fans, and they worked great! They actually worked better than the spray in my opinion!

In order to prevent me from having to sit out the entire trip, we cut back on our activity level. Rather than go hiking AND fishing, we would just do one of the other. If we took a really long hike one day, we would spend the next day relaxing and taking short walks and drives, to keep the activity level up, and to prevent my muscles from getting too sore. This method worked great for me, I never had to grab the Tylenol or any other pain reliever.

The biggest struggle for me was the temperature. Depending on where you go camping at, it will probably be pretty cold at night. For me, my muscles are a lot stiffer and more sore with cold weather, so it was difficult to try and stay warm. The best thing was the camp fire, once darkness was setting in, we started up the fire, and I didn’t move from it until it was time for bed. It kept my body warm, which kept my muscles in an agreeable mood. It was also crucial for me to have a jacket and a blanket close by.

It is also important to have comfortable bedding to sleep on at night. During my trip, I only had a thin foam mattress and a sleeping bag, and it was my biggest regret. After a long day and lots of activity, it is necessary to have the most comfortable bed possible. I would suggest a thick foam mattress, and then an extra sleeping bad to sleep on top of. Socks, mittens, and a hooded jacket are also important for bed, to keep your hands, feet, and head warm. You’d be surprised at how big of a difference it makes when those things are kept warm and they don’t cramp up.

Overall, just limit your physical activity, stay warm, and keep moving. Don’t lay down and die, try to walk just a couple of minutes to keep your muscles stretched out and functioning.

July 17, 2009 at 4:32 pm
(5) Linda says:

Ditto on that bug repellent recipe. I’d love it.

July 17, 2009 at 4:59 pm
(6) Tammie says:

I would also love that mosquito repellent recipe….in addition to the Fibro and CFS I have MCS and have been looking and looking for something that I can tolerate – so far with no luck.

July 18, 2009 at 1:52 pm
(7) Kristin Hayes says:

Air mattress. 10 years ago I slept on this tiny foam pad that rolled up to virtually nothing so I could throw it in my backpack and hike 15 miles to our camp site. Sadly, no more. Campgrounds are more like it and I haven’t found anything better to sleep on than a good air mattress, (unless you have a trailer). I also love our big tent which is large enough that I don’t have to stoop over and hurt my back every time I get in it.

July 20, 2009 at 12:42 am
(8) Renae says:

The most crucial things for me are to make sure that I am comfortable. I have a great cot that I sleep on because its too hard to get off the ground in a sleeping bag. The larger tent is also a must so that I am not stooping over and straining myself getting in and out. Making sure that I don’t overdo and know when to sit an activity out helps as well. If I have these things and my good pillows I can do ok without them I am a hot mess and end up in a big flare that takes weeks to get over. With modifications I think that you can do it just not as ruggedly as you once did. Before I was diagnosed my husband and I would climb mountains just to see the view on the other side and not think a thing about it. Now, thats just not going to happen for me again. It really stings knowing that I can’t do the things we once enjoyed but my husband is great about it and does his best to understand my limitations.

July 20, 2009 at 10:52 am
(9) Nancy says:

Hi everyone! My husband and I – and dogs – are avid campers and used to tent camp, but now have a travel trailer and it is awesome! however, the bed in it did not have a thick enough mattress, so we purchased a foam pad about 2″ thick to put under the mattress. We also have a thick comforter that we put under the sheets, so this bed is very comfy now. I still struggle with getting in and out of it though and that is a challenge. I have to use a step stool and then crawl on my hands and knees to actually get into the bed – its hard to explain, but we have to crawl over the couch sectional to get to the bed. When we bought the camper in 2005 we didnt think anything of it. Now I regret not considering it, but back then I didnt have the medical problems that I now have. In 2006 I fell down the stairs screwing up my right knee pretty bad, then the surgeries started to repair the damage. I think I developed FM sometime in 2006, but the symptoms would come and go. But my last surgery a year ago June – total knee replacement (I’m only 41!!!) – totally knocked me on my butt and I have not regained my energy or strength and deal with chronic pain everyday. This last June we took our annual trip to a big lake in our state and I was miserable the whole time. I slept for several days after arriving at the campsite. My allergies were out of control and I ached horribly. My poor husband didnt know what to do. I ended up leaving 2 days early because I couldnt deal with it. (My husband and his cousin always go together with the camper and I drive our car with the dogs in it). I did find out that I CANNOT make the 300 mile trip by myself – I cant sit that long in the car driving. I made many stops along the way to walk the dogs and stretch my legs, but I had horrible muscle spasms and leg cramps. Even with the frequent stops and taking my pain meds, the pain was still horrible. This next weekend we will be going camping again, but this trip will be very close to home. While camping I plan to take many walks with the dogs and stretch my body many times each day. I’ll also use some resistance bands and see if that helps – but above all else, like you said above, Pacing myself will be critical.

thanks for your awesome blog! I love your articles!

Nancy

July 20, 2009 at 1:42 pm
(10) L Foiles says:

yes, I sure would appreciate that mosquito repellant recipe. Are you really allergic to mosquitos, or is that just an exageration? I swear that bugs don’t even have to bite me…just land on me, and I’m already itching.

July 20, 2009 at 6:10 pm
(11) chronicfatigue says:

Yes, I really am allergic to mosquitoes. I have been my whole life — the bites cause huge hives that aches, and if I get a lot I’ll have an asthma attack.

I’m working on getting the repellent recipe from my friend — I’ll post it as soon as I can!

July 31, 2009 at 6:23 pm
(12) Sara says:

I hated camping when I was younger because I always felt so lousy. But we got an air mattress and a large tent, and it went really well, actually. I was surprised!

August 25, 2009 at 3:51 pm
(13) Urs says:

I also have FM and the one thing what always keeps me going (camoing, festivals etc) is the heatpatches you can get for saw shoulders/ back. one or two usually stops my body from going tense. It’s always been really good even just on evenings out in the winter.

Great list, thank you for taking the time t owrite it!

May 25, 2010 at 9:08 pm
(14) Logan says:

I’m a guy with fibro, 14 years old at the moment. This is a good list, especially since I’m camping this weekend. Good ideas, although at least for me the medicine won’t come into account. I do take meds for asthma, so those will come with me, obviously, but I don’t have any fibro meds, so that lightens the load a bit. My mom, however, is going to have to take a CRUDLOAD of medicine with her. She takes some outrageous number of pills every day, so that’ll be interesting.

June 26, 2010 at 11:44 pm
(15) Sita says:

Thanks for this list! I’m going camping last year and it went ok but thanks for this list. This will help with this year’s trip. :)

July 12, 2010 at 9:30 pm
(16) clb says:

Since finding out that I have Fibromyalgia instead of some illness that can be cured or treated successfully I have tried to end my life once, unsuccessfull at that I am living day to day. I go to the VA hospital at American Lake in Tacoma Wa for all of my healthcare so I do not have accessto good treatment. VA healthcare is the worst place for someonewith Fibromyalgia, but when you can’t afford anything else it’ll do. The doctors there aren’t up to date on treating FMS and don’t take the word of a patient who tries to give them info on new ways they’ve heard of to treat it. I’m tired, bone tired, mentally fatigued and want to get this miserable life of mine over and done with. Unless anyone can offer some advice on how to make my doc listen to me and give me the medications that seem to work, then I will just choose to become a hermit and sleep what life I have left away. I asked him to let me try provigil so I can stay awake to drive to appointments and do errands & he refused with no explanation. I live 50 miles from the nearest city that has health care facilities including the VA. The fatigue from FMS is so severe I have to drink several of those 6 hour energy drinks just to make it to town & back. I’m at the end of my rope. Recently my 13 year old grandson came to live with us, it is so unfair to him that I can’t do the things I should be able to do with him. I am 50 and on pain meds that in no way control the pain I have. I have asked for an increase but was denied. I take, 50mg of Tramadol 4x a day & 5 to 10mg of Oxycodone every 8 hours. This has no affect on my pain. I have resigned to live with it & hopefully die soon to be rid of it all. FMS isn’t the only ause of my pain. I was injured in the military and am very sure thats what caused the FMS. If anyone out there has any advice I would greatly appreciate it. Thank you for letting me vent. I don’t think anyone can really understand what a person with FMS goes through except another who has it. They can say they do but until you experience the fatigue and relentless all over pain you can’t.

July 20, 2011 at 3:59 pm
(17) Tina says:

I read your letter and would like to encourage you to find a Fibromayalgia friendly doctor. I was diagnosed at a pain rehabilitation unit and many regimens of treatment were given by the Doctor there who made the DX. It is my understanding that pain killers do not even touch FM. The first step taken for my treatment was a good one and has worked for 12 years. I take a low dosage anti-depressant and in additon, as needed, aceteminophen. I am right now participating in a research for Pfifzer Company through a research company in my area. It is a blind study and I may be taking Celebrex, but maybe Iboprophen or Motrim. I am quite comfortable as long as I pace myself. Pacing changes with other health challenge changes. Good luck to

July 31, 2011 at 8:31 pm
(18) Jim Luzadder says:

Hi, this darn limit as to the number of characters that I can write cuts what I need to say in half. You are very, very depressed, a common symptom with FMS. You are also angry and rather isolated. Get a mental health therapist ASAP and get on an anti-depressant. Speak to the medical director at your VA. Ask for a consult with a rheumatologist. If this is a no-go, stark yelping at your congressman and senators for help. Then go to the local va ombudsman, and then on to the national va ombusman and medical director. I’m a Viet Nam vet and was a mental health specialist for thrity years. Don’t ever give up!

July 31, 2010 at 1:46 pm
(19) Jasmine says:

I can totally relate to your wanting things to just end. I’m 60 and have lived with FM since I was 37. But you have to take things one day at a time. I also have a teenager living with me, and I grieve that I cannot do the active things I’d love to do with him. Many times in the last few years I have just wanted it to all end, so tired of the constant pain and overwhelming fatigue. I have finally realized that each day is truly a gift, as long as I’m not in a wheelchair like so many people are, or have cancer, or some other terrible disease. FM can really mess up your mind as well as your body, because it never goes away and there’s no cure. But please take life one day at a time, and accept that some days are going to be really bad, and some days are actually going to be pretty good, in comparison to the really bad. Hang in there. There are others who love you and want you to be around, especially the young ones in your life.

July 9, 2011 at 11:56 am
(20) Kristin says:

Mosquito repellant – I use Alfresco, from Alfresco UK, its totally herbal and was made in the Chelsea Physic Garden, its also about the only one that is recommended as safe for babies!

July 9, 2011 at 1:20 pm
(21) fogmom says:

I found a folding chair that is slightly cushioned I can sleep on it when I need to. It folds almost flat. They are hard to find and I have mended mine several times. My biggest problem is pacing my self. I always over do it but I enjoy pretending I’m normal. I pack a lot of chemical heating pads. The one use kind. Usually I am so exhausted that with the heat from the pads and a 3 inch foam pad (bought at academy) I sleep like a log. I also take extra pain pills along just in case.

July 9, 2011 at 3:22 pm
(22) Cynthia Eftis says:

I just don’t have the energy to shop or pack for camping. I have canceled camping trips two or three years in a row now due to FM. And my allergies really started acting up the last time I went..ugh. And I love being active in the outdoors. I have our annual Labor Day weekend family trip scheduled and a cabin reserved….again. Hoping I don’t have to cancel again. I was thinking of going on steroids just so I could make it.

July 9, 2011 at 7:20 pm
(23) Julie says:

I found a portable battery at Walmart that works with my CPAP. It’s great for our camping trips!

July 9, 2011 at 7:27 pm
(24) alana says:

yes – have often wanted to end it, and now simply value life a lot less. making the most of it as possible, but welcome death any time.
repellent = equal parts dettol/ citronella/ baby oil.
also i have discovered hammocks, and although i haven’t yet gone camping, these are very suitable in place of tenting
good luck everyone

July 10, 2011 at 9:59 am
(25) Mindy says:

There was a link to the recipe in the article. Kind of hidden though hard to see. Here it is!

Ingredients:

Witch Hazel

The following Essential Oils:

Lemon Eucalyptus
Citronella
Cinnamon
Lemon
Peppermint
Lavender
Cedar
Rosemary
Use 1 cup of witch hazel as a base. Mix 2 parts lemon eucalyptus, 2 parts citronella, and 1 part each of the rest. Add 1 Tbsp of the oil mixture to the witch hazel. Spray on generously.

I haven’t tested it extensively, but it worked well for all of us. Let me know how it works for you!

July 10, 2011 at 3:27 pm
(26) Joy says:

Excellent article! I thought I’d have to give up camping, too, when fibro entered the picture. One thing I realized is that I have to let others do most of the set-up, or I’m useless the rest of the trip. I hate just sitting there, but I sometimes have to.

Some items I’ve bought to help:
-A double-high air mattress (I used to sleep on the floor of the tent, but that is not realistic any more).

-A really good sleeping bag with a zipper at the feet! (I was so relieved to hear someone else needed an escape hatch, too! Although, my feet also get claustrophobic for some reason, so I needed it for that, as well).

-A port-o-jane. This is essentially a pitcher with a lid designed for women to go. I use it at night to avoid having to leave the tent in the freezing cold of the mountains, because it will take me an hour to warm up again otherwise, plus with my hypoglycemia, sometimes, I have to get up quite a few times in the night- how I miss the bladder of my youth.

-A bigger tent. We have a three room tent for 2-3 people. The air mattresses take a lot of room in there, plus I need everything out and easy to access (especially for when it gets dark).

-A battery operated fan for tents- then I can take an afternoon nap in the tent.

-A camp chair with attached footrest- I love it! I’m only 5’00″, so it hurts my back to be hanging off the chair like a kid.

-Protein bars (Zone bars)- so I never have to worry about getting stranded with my blood sugar.

July 11, 2011 at 11:11 am
(27) Janet says:

I have CFS and just came home from a successful camping weekend. Pacing is a must! The best addition to our camping gear is a small folding tripod footstool. Being able to rest with my feet up makes a huge difference.

July 15, 2011 at 5:09 pm
(28) Sandy Birkenmaier says:

Adrienne, where did you get the new canvas for your tent trailer? We need to replace the canvas for our Viking pop-up, and haven’t found a source yet.

I’ve probably had fibro since I was 10, although it didn’t get bad enough to have a diagnosis until I was 40 (I’m 54 now). I grew up camping, hiking, and backpacking, and, while sleeping on the ground was do-able, I was always very sore in the morning. Now, getting up off the ground is next to impossible, even if I haven’t been sleeping. My husband and I have a pop-up camper, which is wonderful for sleeping in, and for standing up straight (often a problem in tents). His knees have gotten bad enough over the years that it limits his hiking distances; that also keeps me from overdoing it.

I always increase my guaifenesin levels while camping, and carry additional oral and cream painkillers. I generally sleep in a hat to keep from getting chilled, and have clean washcloths to scrub off the sweat when I’m awake, since my sweat’s acidity is very irritating to my skin.

We’ve found that B-complex vitamins keep gnats (and many other bugs) out of our faces for several hours. When the gnats reappear, it’s time for more B. My husband tells people. “B is for Bugs.” For mosquitoes and flies, I spray on a mixture of one part Avon Skin So Soft (the original bath oil, not the new “bug stuff”) in seven parts water. I also use this on the dogs.

As Adrienne says, pacing is crucial. Don’t forget to drink plenty of fresh water, too – probably half of our travel weight is water. If you’re in the woods and out of the sun, pack Vitamin D, too.

July 15, 2011 at 8:06 pm
(29) alleytamcat says:

I also love camping, and have found the following items have made a world of difference:

- Cabin-style tent with straight walls. My tent stands 7′ high in the middle. No more changing on the floor or hunching over for anything.
- My heating pad. Keeps my back warm when we’re sitting around the fire, and I take it to bed with me as well. Lots of parks rent extension cords, and my tent has a special port to allow cords in (without the bugs and everything else!). It’s a life saver during cool nights.
- Oversized camping chair (with padding) so the cross support beams on the sides don’t cut into my legs & cut off my circulation.
- Air mattress with a built in pump. They are more expensive but worth every penny. Takes 2 minutes to set up your bed (if you have a good sleeping bag)! A 20 second “top up” every night will keep your mattress at the right firmness – just turn the dial. Very little co-ordination needed and you don’t have to be super fast at plugging the air mattress before all the air escapes.
- Pre-packed, designated camping gear. I keep mine in 2 see-through containers (baggies, cutlery, tongs, matches, rope, hatchet, you name it …) I have a list of what is pre-packed, and what items I need to add. Way easier on the brain, and a lot less work, too. Great not having to re-assemble the kitchen when we get home.
- This year we are camping within 20 minutes of a Superstore, so we are packing gear only and are going to buy our food there once we are set up. Hoping that will help lessen the last-minute packing and running around stress! One job at a time.

Happy Camping Everybody!!

July 16, 2011 at 12:50 am
(30) Katharine says:

My church is camping next weekend. Up until a few years ago I always went, even when my husband and I were estranged. I have been sleeping with some type of air mattress for the last 20 years. Even before I was diagnosed, in 2005, I had bad back and neck problems. I’ve learned a lot of good advice from everyone. Thanks!

Now when I go camping I rent a trailer or something at the campground where my mom is a member. She got me a family membership and I’d go with one of my friends and our daughters. I love the place because it has a heated pool and Jacuzzi. :) Now that is a huge luxery for me.

April 22, 2012 at 1:24 pm
(31) Carol says:

My husband and I (and kids/grandkids) also love camping and the outdoors. One thing that has helped me a lot is our ATVs! They are a God-send! They get me places I’d never be able to get to anymore, like the top of a mountain to see the great view! They can get you just about anywhere!

April 26, 2012 at 6:12 am
(32) Fibromyalgia Treatment says:

Hi,

I found easier way to know about fatigue disease and symptoms. You give whole information about “The Fibromyalgia Camping Checklist”. And this information is more important for us.

Thank You so much for this information

Fibromyalgia Symptoms

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