From FM Sufferers Aging with FM

Aging with Fibromyalgia (FM)

  1. Use coping skills that Attention Deficit people use, such as keeping your keys and other easily lost items in the same place consistently.
  2. Write yourself daily reminder notes and have a planning calendar and post them in the same area.
  3. Avoid falls by never rushing.
  4. Use baskets on stairs for items to go up and down to minimize trips.
  5. Do less than you think you can so you won’t overdo. Take frequent rest breaks.
  6. Whenever possible, avoid driving when stressed or flaring.
  7. Have handrails installed in bath, on stairs, etc.
  8. Secure all throw rugs to avoid slipping.
  9. Walk as much as possible for exercise.
  10. Stretch daily ,even on days you feel you just can’t walk.
  11. Remember to say, ” No, I can’t” when people try to get you to volunteer to do too much.
  12. Follow good nutrition guidelines and set up a good sleeping plan by going to bed at the same time and getting up at the same time.
  13. Break down overwhelming tasks into little bits and pieces. It’s better to give some pressing task 15 minutes a day than none at all.
  14. Try to get out every day to interact with others. Relationships though at times tiring are important.
  15. Avoid toxic, energy sapping people.
  16. And remember a positive attitude yourself goes a long way. You are somewhat limited, but it’s not fatal or severely debilitating if you take care of yourself. It may make you feel older than you are at times, but keep laughing, even at yourself when you are in a fibro fog!

These are some of the things I’ve learned as I get older with fibro. Now, I just wish I’d always remember to use them! LOL!  I hope some of these suggestions may help someone else. – Kathleen Zyrlis

Let people know that you have fibromyalgia and are not just getting older.

Work out — my husband and I go to the Y and people know me and understand what are my limits.

– Millie

I am a 54 year old woman with Fibromyalgia. I also was in a position to have to have a complete hysterectomy at the age of 35 so I started even earlier with some aging factors.

I was diagnosed with Fibro in 1991 after being symptomatic for 6 years. I was one of the lucky ones who did not have to go for decades without a diagnosis.

My tips and rituals to try and stall off the aging factors are really about  using common sense.

  • Eating well, drinking plenty of water, I mean plenty! It helps the skin stay young and supple so much better than any cosmetic product can and it is free. I drink close to 8-10 full glasses or bottles a day and even my friends ask me what my secret is because I am without wrinkles.
  • Having a group of friends that you meet with at least once a week when not flaring. These friend’s should be the kind that if you are flaring you can tell them and they will be your heroes by coming by to see you!  Meet them at church, your grand child’s school, the community pool, and even the Red Hat Society.
  • (secret: I have been a happy Red Hatter for 5 years and they have helped to save my sanity)
  • Close, close, friend. The one who knows almost everything about you. Someone who you can share your highs and lows with. This friend must be a champion for your cause and be willing to learn all she can about your disease. I’m very blessed in that my friend is one who does not bat an eye if I need to cancel a planned outing. She will pick up a Tai Chi tea and show up with it & her magic fingers. My best friend is a retired RN and is an awesome masseuse.
  • Keep stress out of your life~ I know you all are saying, “Yeah Right!” Taking into account that there are stressors in our lives that we have absolutely no control over this is about those that we do. We are the only one who knows what our tolerance levels are and when we should say NO. Try it now, “NO!” For example; when the person at church asks you to sign on for yet another committee because “she just knows that you will get it done” and you know that it will add stress, say what? NO!  These are the kinds of stressors that we do have control over and the person who asked you has no idea that it will cause you to lose sleep, cause a flare, etc.. Only you know, so do yourself a huge favor today and learn how to say NO. I promise you the task will be taken care of. The church walls will not fall.
  • My final tip. KEEP MOVING! I HAVE OVER THE YEARS HAD THE EXPERIENCE OF DOING BOTH. I can say that though it seems at the time that laying down and not being active is best because it does not hurt as much, it is not the answer. After 4 years of being almost bed bound I found myself in deep trouble which took a year with a physical therapists and personal trainer to get my muscles back in shape enough to walk some distances. It does not require major work out programs to stay active. I walk gently almost daily, stretches & gentle yoga poses are now feeling really good. I also use tai Chi to keep me active. If you would rather swim, bike ride, or whatever you enjoy and does not feel like an exercise program, Do It!   And please, Keep Moving for yourself, and for all of us.

To sum up:

I believe the more active we are, the better we take care of our bodies, and spending time with those we love and love us right back are my tips for looking like I am in my 40’s when I am really 54 and also have Fibromyalgia. I feel blessed now that Fibromyalgia found its way to my body. I know that sounds crazy but it has helped me at a much younger age look at myself and my life and realize I had to set up priorities, for myself!  It was a natural for me to set up priorities for my family, my job and my church. It felt so unnatural to do so for myself that I even felt immense guilt at first.

I had a very wise doctor and friend gently remind me that if I did not take care of myself first I would find myself unable to take care of those I love and wish to take care of.

I can now say when I plan my week I include time to take care of myself and to make time for things that are just for me. I can promise that with time and diligence that it will soon start to feel as natural to you as it does to me.

Your great reward for this will be a happier person, a more relaxed body, and a fitter and ageless look that you’ll be able to pull off until you’re in your 90’s. Just go ahead and share your real age~ Knock them off their boots.

Toni Helser

Do not hesitate to go in the type of store which sells medical equipment (wheelchairs, contention stockings, etc. – not that that is what you need) to find out if they have equipment that might help you.

Opening jars is … well, you know!  There are various jar openers and some may be a bit expensive.  $ stores have a type of shelf lining that is a rubberized material that is a bit sticky on a counter.  (This idea gotten from hospital staff.)  You cut two pieces, put one on the counter on which you will put the jar, use the other one to unscrew the cover.  (This type of material can also be used to put under a cushion on your sofa or chair which tends to move around – it will keep it stable for longer periods of time.)

Please rethink about “looking good” and do not hesitate to use a cane (or canes) when walking because it will make you look old.  We often suffer from vertigo, our muscles go out of whack, our knees or ankles give out – better look old and interesting than end up with a fractured hip!  You may end up looking “interesting”.  Walking with canes has its problems: you may develop blisters if your skin is overly sensitive.  $ stores have nifty little cotton gloves – sometimes two to a pack.  You may find handling the canes hurts your wrist : get a wrist stabilizer from your pharmacy or med equipment store.

My doctor – whom I will not qualify, but I’m stuck with him since doctors are hard to find in Québec – tried to make me trouble with the authorities that issue drivers’ permits who regularly ask for reports.  If you go to see your doctor and have decided to use a cane, tell your doctor that it is more to ensure balance and for prevention against falls (my doctor is very ignorant about FM/ME/CFS).

Oh!  there is a “cane-seat” you can find, sometimes even in pharmacies. I hardly ever leave home without it: believe me, it’s better than MasterCard!  The “cane” has three legs and the middle one is the one that touches the ground when it is closed.  When you need it to sit if you get too tired waiting at the cash or such, you open your seat.  However, you must be wearing pants because you have to sit with the handle between your legs for safety.  They are not overly expensive and can take quite a bit of weight (I’m over 200 lbs. and have been using mine for nearly 10 years).

If you take various meds, you may be taking some that affect your capacity to endure sunlight : get cute summer hats or caps.  This is very restful for eyes also (are we ever sensitive!).  With straw hats, if you’re afraid it may go flying in the wind (we don’t see many days without middling winds nowadays), you just get two pieces of ribbon and put it through between the crown and the brim of the hat, make a little knot so it stays put, and tie it on windy days.  When it’s not windy, just leave the ribbon under the hat.

If you can afford it, get Obus Forme type of seats and backs to use in your car.  They afford quite a bit of comfort.

Shoes:  if Crocs are still in business, they just can’t be beat.  The imitations are a no-no however.  (I have 14 pairs and dread winter because I never found the Crocs boots…)  They have various models, sandals, mary janes, etc.  The original ugly model is actually the most comfortable.  For winter, they have a lined model which is really cushy.

Cooking : when having good days, cook batches that you can freeze.  Wash more lettuce than you need, spin it dry (a spin dryer for lettuce is great, but you can also wash lettuce, put in a large strainer, leave it there for a while so most of the water falls from it or evaporates – then put lettuce in Ziploc bags that you have lined with paper towels).

If you find that opening cupboards and drawers for your everyday items is sucking up your energy, if you have wooden cupboards, screw in hooks and hang your most-used utensils.  Your kitchen will look interesting, if not totally tidy.  Or if you have wall space, you can get a board with holes in it and there are various hooks for that type of board.

Windows and drawers are hard to pull, get some Jig-a-Loo spray and it will make things easier.

If your neck is painful and you need to be sitting in a car (or elsewhere), you can find U-shaped little cushions that are inflatable in travel stores.  You may also find that

I-shaped inflatable cushion that you put between your knees to sleep.

There are many many more ideas you can find when you dig up in your imagination.  Even for those of us who have cognitive problems, it seems that if we have used our imagination, it is still there.  Memories fade, learning is difficult, but what you have acquired should still be there inside somewhere.

Josette Lincourt

I am 64 years old. I have had Fibromyalgia/Chronic Fatigue Syndrome since before I was 12. That is when I was going to the DR with the growing pains that never went away and Irritable Bowel Syndrome. Over the years my condition was called Spastic Colon, Fibrositis, Chronic Pain, Ileitis, Colitis, just Charley Horses, a mental problem, etc.

I was the head of a support group here in Olympia, WA for over 10 years. Preceded by 10 for the support of Ileitis/Colitis/ Crohns diseases. I was very sick. I was either recovering or coming down with  the symptom’s. I am married to an abusive alcoholic for over 43 years. My DR showed my husband how thick my file was. He told my husband that he was making me sick. I thought he was right ,and wrong.

He was right. I am not cured, but now I have a life. My husband left a year ago. Now I can hold down a job which I couldn’t have ever done previously. I don’t have IBS now. I have lost over 40lbs. I am happy. Stress is terrible on this condition. I have since run into several women it a singular situation. I hope they will find out that you can take care of yourself better if you don’t live with someone that has no compassion.

I always told the people in our groups to do what you can. I swam laps for years. If you have to mow your lawn don’t do it all at once. If you don’t do too much the first day you will be able to finish or do some more the next day. I set the timer to make sure i don’t work too hard on flower beds. If you do anything you feel better than if you just rest like too many DRs tell you to do. I am in pain every day.

I fill my life with joy. You can handle the pain better if you are not gritting your teeth. Smiling is better. When you keep doing something and it doesn’t work, do something else, anything else. I am an artist. Art gives me intense joy. Find your passion. I can’t run a marathon. I don’t want to either. If you only make your list of things you can’t do your will miss the wonderful things you can do. Supplements help.

Proper doses of prescription meds help. Lyrica and are great. They have helped me and  my mother [82] to be able to shop and go for walks. Fibromyalgia is bad, but sometimes your bad symptoms are another condition. Don’t assume every problem is the Fibro. Milk and beef make me very sick. I can’t drink coffee. There are other things but I am so used to these limitations that I don’t really care.

When the IBS get too bad drink chicken broth or Jell-O dissolved in warm water. When it is a little better eat a baked potato with nothing on it. Then be careful what you eat. IBS is like having stomach flu for years. Lots of us have skin problems. Most of us have foot pain. All of us have sleeping problem. When we are given antidepressants we are not being treated for the mental illness of depression.

We are being treated for the symptom of being depressed because we are always in pain. Last week I took the ADD, ADHD test. I failed with flying colors as you can probably can tell with this letter. I am  now taking Stratera. It is helping somewhat. All we can do is treat symptoms as they come along. Work on your body, mind and spirit if you want to make it through.

Linda McAllister

I am a woman 81 years old and I have fibromyalgia, diagnosed by a rheumatologist last year. I had always had for years aches and pains that would go and come so I didn’t give it to much thought and continued doing everything, gardening, walking with my dog, going to the gym… eating healthy, I became a vegetarian…but last year the pain became intolerable, I could not sleep…so I made and appt. with the Dr. after talking with me and also I had filled a long survey, he sent me prior to my appt. and examining (pressure points) me he told me I had fibro. That day the Dr. also did blood tests, X-rays galore to make sure I did not have lupus, RA etc.

He started treating me with Lexapro and Lunesta and I had to go every 6 weeks. Then Ambien went generic and we switched to save me money. I went for 6 months and got discouraged… so I weened myself off of the Lexapro and did not go back any more…this was a year ago, I only take the Ambien because otherwise I don’t sleep…I am in constant pain…also have IBS with constipation…bad, bad. I also have osteoarthritis and osteoporosis… The only thing that helps me is the gym…the water… I go every day into the whirlpool and walk in the swimming pool. I have also constant fatigue so I had to give up walking, working in the garden, mowing my lawn. Cleaning my house when I have to vacuum and dust… I do now what I can a little bit at a time.

Elaine Burroughs

Hi, I was diagnosed with Fibro. in 98, looking back I am sure I had it since I was a child. I hurt so bad when I was little, but you know how that went.{it was all in your head or it was growing pains}. or etc…  when it hit me really hard  in 98, I had just got over from back surgery, plus a few other surgeries since 86. I wanted to die, I hurt sooooo bad. besides my muscles hurting and not hardly being able to get up from a sitting position my nerves in my body felt like they were going to come out of my body, but of course at that time the nerve part was unheard of.

It  was some tuff years from 98 till now. our kids just turn their heads because there was no way that super mom was down sick.  But my husband was a God send. He educated himself as much as there was info. He took care of me even when he felt bad.  You see he had it to. He had chemicals dump on him and another guy, that had a lot of poison side effects, and coming down with Fibro. was one of them. So he has suffered also. But he was still right there for me.

I am better today, I still hurt, a lot at times. But the biggest thing I have learned thru all of this IS NOT TO OVER DO IT. When I overdo it I suffer for days, with the hurt and the extreme fatigue. The fatigue is the most over whelming feeling,  I think one could feel.  When you get fatigued like that, you feel mentally drained and physically drained. It is absolutely horrible.

So again YOU DON’T OVER DO IT.  When I feel the least bit tired I try very hard to stop.  I don’t always do it and I pay dearly for it, but I know that is what I need to do. and also pace yourself, when you are used to going full strength, it is very hard for me to slow down, but I know I have to. I have a lot more to my story if you are ever interested.

Judy Upton

The best help that I have received with FM is the Fibromyalgia and Chronic Fatigue Center. As a 58 year old woman, hormone treatment and help with hot flashes are important to me. I have been going to the Cleveland center for several years and feel so much better now–the muscle aches are gone!

My tip is to work with a doctor who specializes in FM.

While I have a GP and gynecologist, I rely on my FM specialist and continue regular visits to monitor and “tweak” my health.

Please withhold my name if you use this tip as my colleagues do not know that I have FM.

Short on time so just a quick reply:  I find that 45 minutes of water aerobics really helps my fibro body if the water temp is warm and the air temp is decent.  After water aerobics then I head for the hot tub at the same YMCA for 10 minutes.  Then I go home.

Luella M Van Englehoven

Hi!

I am only 35 years old and have had FM since the age of twelve, not sure if this qualifies as aging!  The one thing I have learned is the need to prioritize.  Does it matter if there are dishes in the sink when I go to bed?  My answer today is “no,” but ten years ago I would have said “yes.”

The hardest thing is not pushing myself too hard on good days.  There are so many things I want to do, but also know that if I do them all, I will pay with pain later!

The most important thing I have learned the art of saying “No.”  My health is my number one priority and if it means not attending a wedding or a family gathering, then so be it.

I continue to roll with the FM punches, understanding I cannot predict what is next.  I spent many years hiding the pain from everyone and in doing that I gave merit to the idea that this condition does not exist.  Now I let the pain show on my face and in my walk, and now others around me are gradually understanding this is REAL.

The best way to think of aging with FM is that what cannot be cured must be endured.  I keep enduring!

Heather Tarzia

I am 55 years young and have had FM for almost 25 years. I also have arthritis in my feet and sciatica pain regularly. My tip: have young friends, active friends and make sure they understand your limitations but encourage you to get out, participate in activities, travel and see new things.

Joy can be scarce unless you seek it. Teach your grandchildren to swim, learn to take and share photos, pass along your recipes to the next generation that likes to cook and go to the beauty salon or spa with friends for a massage. I have done all of these things in the past year with and because of my medications, a good attitude and mild exercises. If you are having a flareup, watch your diet.

Do what makes you feel good inside until you can feel better on the outside.

 Hara

I will be 60 yrs. old on the 30th of July. I’ve been dealing with FM for about 35 yrs.

More rest. Pacing is now 20mns. /40 mns. rest. Sleep more if possible to be more alert and have less pain. Good sleep seems to break the vicious circle.

Be aware of the effects of medicine. Slows us, speech can be impaired, memory too.

Tell grown kids and grandchildren there is no guarantee . If something is planned…may have to cancel. Days are a roller coaster.

Exercise, pace, drink more water, eat smart, use your personal therapy tools and laugh every day.

Use a small notebook to write everything down or if you’re tech savvy use your cell phone calendar/notepad or a computer. Brain Fog!!!

Join a support group even if it’s an online one. Don’t become isolated.

Natural aging slows everything we do down. Seems like each generation walks a little slower. We work slower, chores/projects take longer now. We need canes or walkers now. Acceptance of the aging AND FM is difficult but can be done. Be kind to yourself!  I see myself going downhill every day. My pain level for “normal” has risen to 6. For years I could keep it as a 4-5 now that’s a thing of the past. When I go into flares, they are much worse, last longer and take longer to recover from. It’s all very much combinations of things; changing meds, over work, aging…. just to keep some kind of balance in life.

Well, that’s my “blah, blah” on things! Thanks for the opportunity.

Sue Fox

It has taken everything I have, but I’m up to walking an hour a day on the treadmill.

Being obese makes everything harder, but I’m making some progress and feeling better.

Here’s the tip:

  1.  Get your exercise first, then you’ll feel more energized to tackle other tasks.
  2. Start your new healthy habit BEFORE the holiday or New Year.  That way you won’t become frustrated with all the other “Revolutionist’s” who flood the fitness centers each year
  3. Keep a simple “foods eaten” journal.  Note when you feel lousy and look back at what foods may make you more painful.  (Aspartame and MSG are on my hit list, but some foods make me hungry like white bread, potatoes and sage stuffing)
  4. Adjust your bedtime to an earlier time.  Think of sleep as a medication and make sure the dosage ss what you need to feel good most days.
  5. Find a support group that meets earlier in the day.  If you hear “poor me” spoken at these meetings, leave and find or start another.
  6. Consider trying a massage near the end of an exacerbation.  Find a qualified Massage Therapist and try “trigger point” massage.  I wish I could tell you that it won’t hurt.  I will tell you that You’ll feel much better after they get your tissues functioning properly
  7. If you use heat to relieve pain, use MOIST Heat or warm bath or hot tub.  Don’t dehydrate those Tissues
  8. Speaking of hydration, drink Water.  Stay hydrated

I’ve lived with Fibro for 13 years (that I know of) and perhaps longer.  Thankfully, the bad days are Fewer in number but they still come.

Patti Gartland

Hi, my name is Sharon O’Connor and I am 65 and have had fibro for 30 years.  I managed to function sort of ok while younger and working, kids, housework, all the normal things in life, although I was in varying degrees of pain most of the time.

When I turned 50, it got much harder to keep up a pace that was theoretically easier with just working and grandkids around but it was very hard to do.  At 58 I fell and my knees were injured, surgery, fibro became the overwhelming monster in my life.  Treatment resistant major depression and my knees caused me to have to go on disability by age 60.

I assumed since I would no longer be working and could take care of myself better that I would bounce back to some previous level of former functioning.  Wrong!  No matter what I do in improving lifestyle, the aging process is undoing all my efforts so that I am still in a barely functioning state.

I must add that one of the main culprits that is holding me back is depression meds side effects of weight gain.  Before the last medication change 18 months ago, I had lost 45 lbs. down from 230 and I am 5′ 2″ so I was very heavy.  I did feel better than I had felt in years, not less pain necessarily because I was working hard physically to get the weight off but still feeling much better physically and mentally.  With the medication change due to the depression, I gained all the weight back to my 230 which seems to be my set point.

I have recently started again to fight the weight with treadmill, very little of the carbs that I crave so badly and have lost a few lbs. but as I age I am getting to the point where I almost don’t care anymore, I don’t have much fight left as the fibro makes doing anything so much harder and is getting worse as I age.  It is quite hard sometimes to know if the pain and discomfort I feel is fibro or arthritis or……..?

I do have a primary care doctor that works with me pretty well with the complexity of overlapping symptoms and works with my psychiatrist to co-ordinate meds but the side effects of Cymbalta, Wellbutrin, gabapentin, blood pressure and gird meds are making daily life very difficult complicated by bad fibro fog.  So even though I make a schedule of all the good things I need to do each day for myself, it has become almost impossible to follow as I am so foggy mentally.  I used to use Dr Pepper and Advil to stimulate my brain and body to be able to do what I needed to do but that no longer works and was causing more side effects itself.

So I am down to the real mind and body as it is and it is not good.  I am not being able to enjoy the aging process physically or mentally though I have no issues with aging, and like the person I am underneath the illness problems, just wish she could get out and enjoy what she would like to do.  Sorry for being so wordy but this is not a small issue.  Thanks for your time,

Sharon O’Connor

  1. Prioritize,  plan, pace! (some things have just got to go, like dusting, ha ha)
  2. Use memory aids like post its, lists, and planning calendar.
  3. And never stop moving!  mild, but regular exercise. Balance of exercise/activity with rest and
  4. sleep (good quality sleep is critical , and doctors often don’t take it seriously or treat effectively).
  5. Make the effort to plan for some fun, in spite of it seeming impossible …. let chores go, and see a movie that makes you laugh!

Janet Starkey

I am 63 I find that just a little walking if possible helps me with my stress level a lot.  And the deep breathing and relaxation every day being calm.  I can’t do any type of yoga I just lay on the bed and relax each part of my body from toe to head.  It takes time to do and takes a while to learn to relax, really relax the areas.

Betty Robinson