Living Under Stress With Fibromyalgia & Chronic Fatigue Syndrome

The best thing this person can do for herself is Cognitive Behavioral Therapy. As a therapist I have FMS and have worked with clients who have FMS and this therapy is very effective in teaching behavioral changes and cognitive changes a person can make to help them deal with stress. In particular the person who is taking care of someone with Alzheimer’s needs to learn that they CANNOT TAKE ANYTHING THE PERSON SAYS PERSONALLY! This is one of the biggest mistakes I see people do in this situation, even when they say they aren’t doing it, subconsciously they still often are. Argue these thoughts down and remind yourself, this isn’t your real mom or dad anymore b/c of the dementia, so they say things the formerly healthy person would never have said. Hope this helps.

Chronic fatigue Syndrome, Fibromyalgia, Irritable Bowel Syndrome, Hashimoto’s Thyroiditis, Autism, and migraines often respond to removing gluten from the diet. We’ve learned this from our family’s personal experience with food intolerances. I know that some forms of arthritis also respond favorably to dietary intervention. It takes up to 6 months for gluten to leave the body, so if one is Celiac, it may take a while for symptoms to disappear. It is often recommended to try removing cow’s milk, soy, and corn products (in rotation) to see if these hard-to-digest foods are additional irritants.

The technique that has helped me the most is neurofeedback.

Having tried many of the traditional approaches like CBT, Tai Chi, meditation and yoga, what I need was to retrain my brain to learn a relaxation response that I could draw on when I’m faced with stress at work or in my relationships.

It may not be necessary for everyone, but when nothing else works is a viable option, especially if you’re living in a situation where high levels of chronic stress is the norm.

Check with your state to see if assistance is available. In Wisconsin we can get respite, in-home care, etc. If any of these are available you may be able to leave the house for a while, take a relaxing wekend alone. I have a 23 yr old diabetic Down syndrome daughter and the programs allows time to relax.

When my mom came down with a rare neurologic disease that slowly (over a few years) has left her almost com-pletely demented and in a near-vegetative state (can’t feed herself, needs diapering), her doctor recommended a group home for her needs to be taken care of by pro-fessionals after she fell and broke her hip and was permanently wheelchairbound (this at the beginning of her illness). He was aware of my condition and knew I couldn’t take care of her (I have CFS). Fortunately, she has had enough money, with her social security, to this point to pay for this quite expensive proposition. But when her money runs out (probably toward the end of the year), the State of Arizona is supposed to step in and take over, taking nearly her whole social security check to help with expenses. If you have no other choice, talk to your State social/health service people and see what they can do for you. No one expects you to die due to taking care of another, even if it’s family. Some states do, however, have familial laws, whereby the children are expected to take care of the parents financially when they can no longer care for themselves. Fortunately, Arizona does not have such a law – YET! I don’t know what those states do if the children have no money, either. If I were stuck in such a situation, I’d do some-thing drastic.

My Father has Dementia, the best thing I found is a place called Total Long-term Care (TLC). I don’t know if they have it your state but it has been a life saver for me. You can also check into hospice. If she can be diagnosed as having a terminal illness they can also be very helpful. Check any and all resources in the community, you may be surprised at what you can find. If your Mom has insurance, medicare/ medicaid, check with all of them.

That’s difficult… (the situation in the example, I mean). I’m single which has it pros and cons. One of the “pros”, though, is that it’s easier to separate myself from stressful relationships. One thing I did about 18 months ago before having major back surgery was to cut off my attention to news and political issues (I was a bit of a political wonk and occasional activist). I just couldn’t deal with those external issues which would often get me really fired up. Another thing I’ve started doing is I have a little kitchen garden, which gives me some constructive things to do outside and then I like cooking, so I try to use my herbs in healthy foods. So this is a nice little diversion for me. So basically, I’ve cut out some stressful/emotion-raising activities and taken on a more calming, creative activity that feels constructive and gives me some pleasure. It’s also something that I can pace myself at and not feel pressured about doing. I’m not saying that this is what everyone should do, but it seems to be working for me; at least it helps a lot doing these 2 things.

DEAR STRESSED, I HAVE NO MAGIC WORDS,OR A WAND FOR THAT MATTER, HOWEVER WHAT I DO HAVE IS EXPERIENCE, I TOOK CARE OF MY PARENTS OFF AND ON UNTIL THEIR DEATHS, I ALSO HAVE SOME MEDICAL BACKGROUND. I WANT TO TELL YOU TO TAKE IT MINUTE BY MINUTE, BREATHING ,AS WE FORGET THIS AND HOLD OUR BREATH WHICH IN TURNS STRESSES OUR BODY. REACH OUT TO ANYONE YOU CAN AND IF THAT NEEDS TO BE A STRANGER WHO IS FAMILIAR TO YOUR PROBLEMS, THAT IS WHAT THEY ARE THERE FOR, ALL KINDS OF AGENCIES HAVE WONDERFUL PEOPLE WHO WANT TO HELP, TAKE THE TIME FOR YOURSELF TO CALL SOMEONE, THEY WILL HELP AND IF THEY CAN’T THEY USUALLY KNOW SOMEONE WHO CAN. GOD BLESS YOU AND I CAN BE REACHED THROUGH THE BLOG HERE. PLEASE KNOW I WILL BE PRAYING FOR YOU AND MAY GUIDANCE FIND ITS WAY INTO YOUR LIFE. DEBORAH

I’ve recently been taking a relaxation course — listening to visualization exercises can be really helpful to de-stress. A registered nurse also highly recommended The Insight CD by Immrama Institute (www.immrama.org or Indigo). It works on your brainwaves and can bring about a significant reduction in stress and anxiety, improve spleep and increase energy and vitality. You must listen to the CD with headphones as there are separate binaural beats (frequencies) played into each ear. This is overlayed by either the sound of rain or waves. There are 3 tracks on the cd – each 24 minutes long. You only need to listen to one track to get benefit. Cost is about $35.00. I’ve yet to try it as I don’t have headphones. This would be something easy to introduce into your stressful situation. It difficult to find time for your self when you are taking care of someone full time, that is why this might be an option for you as little time is required. I hope you are able to find some peace of mind.

The best destress I’ve encountered is talking things over with supportive friends and singing.

My mother just passed last August after nearly 15 years of being in a nursing home due to Alzheimer’s. She had early onset and was only 73 when she died. It was so stressful as I was the main one checking on her, doctor consultations, etc.. with Fibro, doublely hard!!!
Give yourself permission to let other’s help! I’m not sure what stage you mother is in now, but I remember grieving each loss of my mother’s “self”. Her ability to dress, use the bathroom, verbal articulation,etc… allow yourself to grieve each one. When the end came it was difficult, even though I had said good-bye to so much of her. I finally cried for what I had gone through.
My best advice is to realize others of us have made it through and you will to. “Hugs”

Find the best nursing home she can afford in your area (within comfortable driving distance for you) and make and application to have her admitted and then visit her as much as possible. She will be upset at first but will be better off being cared for by professionals and you can make the transition with her which will be imminently better than them having to put her where they chose when you get down and have to be taken care of yourself. You can visit her on a regular basis and it will serve not only to provide her with company but to remind the staff that you do pay attention to her so she will be better taken care of her than those who are being “warehoused”.
I’m sorry, I know this is not what you want to hear but unless your illness is much, much milder than most of those I know it is the truth and what is best for both of you in the long run.

My heart goes out to you. While she is in your care, I would suggest that you have someone come over and care for her while you go to the bathroom and have a spa day for yourself, a long Epsom Salt bath to ease some of the pain, a good read or good relaxing music, etc. So get alone, baby yourself, take a nice hot bath, and think positive thoughts while forgiving yourself and your mom, doing all the breathing exercises, etc. It will refresh you. Perhaps the person can stay long enough for you to finish off this bath with a nap .

Until recently, I was in a similar situation. In trying to take care of my mother, without family support, my health had finally deteriorated to the point that I wasn’t even able to take care of myself any longer, much less the loved one I was suppose to be helping. I tried to get family involved, but they seemed unwilling to take notice or get involved.

That’s when I finally had to do the hardest thing I think I’ll ever have to do. I had to admit that I can’t do it all, and that I was going to have to find other arrangements of my loved one. I had to walk away, for the most part, and force my other relatives to start taking a more active role.

I’m still dealing the guilt of that; that voice that says if you’re a good daughter, you’re suppose to take care of your parents when they get older. But my health is so bad, I’m barely able to care for myself. And that was sooooo hard to admit.

If family is not available, look to other local agencies. Look to churches, and community groups. You don’t even need to be their denomination necessarily. Often they will help if you show you have a great need. And look into government assistance.

I’m not suggesting you have to take as drastic of a step as I took…My case of fibro is really severe. But you do need to get to the point where you can say “I can’t do it all.”

I know how difficult caring for someone with Alzheimer’s can be and wanted to suggest some resources: I know the Alzheimer’s Association has a 24 hour/7 day a week phone line you can call for support. I think you can call for anything-for a listening ear and support or to ask about resources in your area. Their # is: 1.800.272.3900. Also, I’m doing some temporary work for a website that provides free educational videos for caregivers of older adults. Many of the videos are about dementia/Alzheimer’s and there are also some new meditation videos on there that may help. If you’re interested, the site is: http://www.mmlearn.org. Also, you could see if you have a local Area Agency on Aging, Leeza’s Place, or call the United Way-plus they all should have websites you can find. If you can’t get out, there are online support groups. I think you should definitely seek support. I know it can be hard to find, but caregiving is exhausting for anyone and most people cannot provide care for someone with Alzheimer’s 24 hours a day.

I understand what you are going through. I took care of my bed-ridden mother for about 5 months before I had to admit that I could no longer handle it. I had to make probably the hardest decision I had ever made; I made the decision to place her in a nursing home. It was a hard decision, but it was the best one for her and for me. She was getting care and I was able to recover some. It was at the point that if I had not made the decision, my family was going to take the choice out of my hands. Please do not allow yourself to get to that point. Do your research on the nursing facilities in your area and get her into one… you need your life back so that you can recover. You can visit her as often as you want, but do not let her guilt you into taking her back home. Whether she will admit it or not, she needs more care than you can provide right now. God bless you and your mother. You have been a good daughter and don’t EVER think differently.

I understand your stress. My Mother lives with me, and not that she has te condition yours does, she treats me like I am 15 and can’t make my own decisions or critisizes everything I do. I am also going thru forclosure, need back surgery, have depression, anxiety disorder, irritable bowel, adhesion in abdominal/pelvic region which is very painful, ad still having problems and going to court after 6 years of seperation frm my x-husband. I feel your stress.

I have ME/CFS and FMS. I am mostly bed, recliner, home bound; most days I am lucky to have enough energy to make two less than ideal meals for myself. My father, whose health is deteriorating (at this point we may be equally ill in regard to quality of life measures), lives minutes away. I am his only living relative.

One of the ways I manage my stress is to live in a different home, though it would make more economic sense for us to live together. Indeed, together we might be able to make better meals. But at what cost to my mental health? The biggest issue for me is that I cannot handle TV noise and my father has the TV on most of the time.

I have a live in helper who runs errands for the two of us. We pay to have our yard work and house work done.

Having a live in helper has brought its own stresses of the interpersonal sort. The situation is less than ideal because she perceives slights where none are intended and avoids dealing with her feelings, which means she engages in petty passive aggressive behavior. I have not fired her because it is difficult to find a reasonably compatible live-in helper.

One of the things that helps me cope is that I know I have good conflict resolution skills and I am doing my best and that is all I can do. You can lead a horse to water but you can’t make her drink, not if her ego requires everything being someone else’s fault. I focus on what needs to be done now and not on any sort of friendship; I stay polite, friendly and that is that. If she wants to avoid, I give her that.

I think I would try to approach the example in a similar way. The woman’s mother is no longer herself, the situation is less than ideal, the expectation of a satisfying relationship is not reasonable. There is just the matter of getting through. And perhaps remembering what was.

Indeed, if possible, in that situation I would look for a live in helper despite my difficulties in finding a suitable one. I would do that as much to provide myself with a break, particularly if the woman is able to get out and do anything that she would find to be enjoyable.

And who knows, she might be lucky and find a helper who is skilled in conflict resolution and has the patience necessary to deal with someone with Alzheimer’s.

I’ve thought about searching for a nursing student to move in with my mother and will do so when she reaches the point where that becomes necessary.

Even as I write this, I don’t know how I cope other than taking it one day at a time and looking forward to whatever good I can find in the day.

My mother had increasingly noticable, life-impacting dementia and stroke-caused personality changes, cognitive issues, and the like. I would go and stay with her for months at a time, trying to sort things out, get her to admit she needed assistance, etc. She died this spring of a hospital-caught infection after spending 8 weeks there after a fall. I was able to extend my stay over this time period. She was difficult to deal with, and I found blogging about my experiences (under an “assumed” name and not mentioning anyone by their “true name,” very therapeutic. I also connected with other people dealing with similar situations through the internet and my blog. Knowing that you are not alone (either with fibro and with a parent with alzheimer’s, can be a very positive experience.
Good luck. I’ve read the comments and folks seem to have lots of good ideas you might try.

It’s a multi-faceted healing process, & ongoing. Stress seems to be the one component that is the most difficult to deal with, as we very often don’t have control of the external situations in & around our lives. I’m a single Mom of a mentally disabled son, so taking care of “me” is often on the back-burner. I have very good results with a combination of holistic modalities & therapies, which include most importantly the food & nutrition that my body gets. I do regular detox/natural cleanses. I’m vegan, & about 80% raw living foods. I get daily exercise, usually in the form of at least a 30 minute brisk walk. If you’d like to hear more of my regime, & suggestions, you can visit my blog at http://www.DonnaWilsonsWorld.com
Happy 1-1-11 & all the best in Health, Joy & Prosperity to you!!

I have considered divorce and giving my husband full custody in order not to deal with his stressful, workaholic life. The demands his employer put on him and in turn on me makes me the slacker-picker-upper. He is available 24/7 to his employers.

I find planning is my best strategy for de-stressing my life. Pacing, and taking time to do the things I must rather than do everything at the last minute is best. I am no longer able to put out fires as they happen, but work best when I try to prevent fires in the first place, figuratively speaking. My husband is able to take on jumping through hoop after hoop of fire. On the other hand, he is able to roll over and fall asleep in an instand and wake up when the alarm goes off.

Like a previous poster, i have had to detach some emotionally from relationships to survive and take a stand. Sad.

The other thing that helps, I no longer read crime or violent novels.
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My mother also had Alzheimer’s, she passed last year. For 15 years she was in a nursing home, early onset took her mind from us when she was in her late 50’s. It was a sad, hard road….I was her guardian.
I can say, that when I had a moment alone, (usually in my car or the bathroom) , I would take time to think of the joy in my life..the birds flying, children laughing…things like that. It didn’t erase my stress and pain, but it gave me hope to go one more day!
Now, there is a space where I used to fill with visiting my Mom, etc…I am trying my best to do what I love in that space, because she would want that for me!
Hope it helps.