Tips for People Suffering from Chronic Fatigue Syndrome and Fibromyalgia
Alice Writes: I also have fibromyalgia. I do work full-time and make a decent salary, but I do a lot of things to survive. I wondered if they might be helpful to your readers. Also tips as to what worked for me….
Not all of this is frugality, but survivability when you are working with fibromyalgia.
If you can all afford it, pay someone else to clean your house, do laundry, stuff that requires physical ability. I don’t care about whether the tub has visible stains but when all the dishes in the house are dirty and getting moldy, and I’m exhausted, I need help.
To do organization with mental fuzziness, enlist a buddy to come over and keep you on track.
I would not function without Amitriptyline. This is also a very low priced medication even if you don’t have insurance. The cost of the generic medication is almost lower than my co-pay.
I had the experience of moving to a new city, having to use only public transportation shortly after being diagnosed with fibromyalgia. I tried taking taxis all the time because I didn’t feel like I could walk. I was using increasing amounts of Trazodone to sleep. I only realized how bad I was feeling when I took codeine for a cough, and finally was able to sleep at night. I realized something was wrong and went on amitriptyline and then moved someplace where I had to walk 5 minutes to the subway, and then 5 minutes from the subway to work. That small amount of exercise each day made a big difference.
Doing work where I have to move around, not just sit in a chair has helped ease my fibromyalgia symptoms.
Stretching has made enormous amounts of help with my fibromyalgia.
I have a couple activities I really enjoy, hiking and dancing, that give me exercise. This motivates me to get “exercise” even when I don’t feel like it, or don’t think my body can handle it. Last Monday I went dancing, stayed for 30 minutes and danced for less than half the time. But the little exercise helped.
I am single and work full-time. I have found for the last 2.5 years, that I have not been able to cook. I eat canned soup or TV dinners. Or something that requires combining 3 cans and cooking for 20 minutes. Canned salmon and rice, vegetarian chili (doesn’t require browning meat). Cooking with fresh things doesn’t work if I am too tired the week after shopping and don’t cook it and it goes to waste.
To solve part of the problem with washing dishes, I bought a very big water bottle. Water is better for me anyway.
One of my friends with chronic fatigue syndrome found that she had to simplify things to the basics. She ordered all her groceries online. The local grocery store would do that at no cost, if you had a minimum order. Sometimes she would just eat canned beans, mashed up in a bowl, heated up in the microwave.
Wear good tennis shoes all the time. Make sure they are wide enough and long enough.
Avoid shopping if at all possible. Less shopping = less shopping bags to put away = less stuff to pick up = less stuff to dig through while looking for what you really wanted = lots more time.
Although I can go to Target and save extra money, I often go to the drugstore just down the road and pay a little higher prices. I can come out the door with a bar of soap, a jug of milk, and that is it.
Fewer clothes = have to do laundry in smaller, more manageable chunks.
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I too had fibromyalgia…I had to quit work & spent most of my time just lying around. Soon my great grandson was born,I was the one who had to care for him, I did know how I could do it but I did, one day he did something cute & I laughed for the first time in a long time, I started getting better. He has been such a blessing. He 17 now, the joy of our lives.
I have fibromyalgia, osteo-arthritus, and was diagnosed with COPD 6 years ago so I’m on oxygen 24/7. Needless to say, I have learned to prioritize how I use my energy.
Living alone, therefore cooking for one, has been a challenge. BUT just today, I ordered a Foodsaver vacuum system to store on-purpose-leftovers. I make chili in the crockpot and stews, too. When I cook, I always try to make at least 3 – 4 of whatever I’m making, i.e. hamburgers, fried ham steak, casseroles, etc. With a SSDI budget, I’m careful how I spend my food dollars, buy in bulk (family packs of meat, a dozen doughnuts, etc.). However, often the food got freezer burn before I’ve “found” it in the freezer. Hence, the Foodsaver purchase. Using that appliance with the bags take up less room than plastic containers.
I’ve dedicated one cupboard to baking, having all the pans in the bottom cupboard, ingredients and mixing bowls in the top cupboard. I use a stool in the kitchen whenever possible — mixing batters, washing dishes that can’t go in the dishwasher. The dishwasher was something I saved very hard to buy because I’d end up with all my 8 piece serving dishes dirty during a flareup of fibro or exacerberated COPD time. Sometimes they hit at the same time. That’s fun!!! :-)
With all the dishes dirty, I didn’t eat as well. Hence the dishwasher purchase for my apartment. Still there are times when loading the thing or unloading it is a BIG chore. I’ve learned, though, to just do part of a task, rest, and do another part. This works for baking as well: Measure and mix the dry ingredients. Rest. Measure the wet ingredients. Rest. Mix the two together. Rest. Sometimes I end up putting the bowl in the fridge and baking the product the next day. It always seems to come out fine.
I have grocery delivery once a week in the small town where I live and use Walmarts free delivery on many items because they are cheaper than the local store and delivery to my door! I want to give the local store as much business as I can afford because they are the ONLY grocery we have and I don’t want them to close shop. They supply my eggs, milk, butter, deli cheese, fresh meats, frozen foods, etc. I’m buying dehydrated peppers, celery and whole eggs through Walmart so along with dried milk or evaporated milk, I will have those ingredients on hand for cooking and baking in the event I forget to order them on the one day per week they do deliveries. (Only $1 for delivery!!).
In conclusion, I think the key to making the syndrome and conditions work for me is that I break down tasks, give myself permission to rest rather than barreling through the whole project (like cleaning the bathroom), purchase tools that make life easier, and ask for help when I need it. Now if I could just find a garbage genie, I’d be a happy camper. In fact, though, I have a neighbor who willingly takes out my garbage to the dumpster which is too far for me to walk most of the time. Winter cold shrivels my bronchial tubes like RIGHT NOW! so I’m self-imposed home bound in the Winter. I stay home, too, so that I don’t get sick from all those people out there who go to the store, etc. when they are sick. A hospital stay with pneumonia wrecks my budget!!
Also, I wear only knits — like in t-shirt type tops, and sweat pants or other knit pants. They don’t wrinkle as easily as regular street clothes, and no ironing needed when hung up immediately from the dryer. I have three outfits for going out in — 1 pants outfit, 1 dress, and 1 skirt and top with jacket that could be used over the dress or pants outfit. Keeping my wardrobe simple takes the stress away of trying to figure out “what am I going to wear”!!! I like these outfits, they look good on me, and are classics so they never go out of style. Just don’t ask me how many pairs of shoes I have!! LOL
I have a family member who is bi-polar, and believe me, I wouldn’t trade places with her for the world. Everyone has something they are struggling with. I know how to wrestle with my conditions so I’ll keep mine, thank you very much! LOL
I have bipolar II and the medicines I take cause flu-like symptoms. I wish I had fibromyalgia instead, because of the hatred and stigma lavished on me whenever people find out my secret.
I have never broken the law, and wouldn’t hurt a fly, but people are paranoid. I hate my diagnosis!
I don’t blame you for feeling that way, Kathie. I would trade my burden for FM or CIDS any day!
I know it is hard dealing with being bipolar and there is a stigma with it but FM and Cfs have theirs too I’m afraid. There is an old saying that the grass is always greener on the other side and I have now lived long enough to realize that there are just as many weeds growing there too we just can’t always see them. I know it is hard and that is an understatement but there are many more of us now who are having an understanding of what it means to be bipolar and have friends and family members who suffer from it. I have counseled with enough people now to realize everyone has their own form of handicap they are having to deal with that is why it is so important for each of us to try to be more understanding and to help others as much as we can.
Thanks Jill. I have heard that people with FM and chronic fatigue are sometimes accused of being addicted to pain meds or lazy, so I guess people have a hard time understanding them too.
BTW, I do Yoga, and stretching with bands. I use VERY light weights but I’m careful NOT to overdue. The COPD requires that I walk slowly so I can walk further. Apartment halls are good for walks. I also do sitting in the chair exercises. All these can be found on the Net. Make Google your friend!