SUGGESTIONS FOR HELP
By Cheryl Nagler
From Summer 2017 Forum
Iím just a victim of this nasty and unrelenting disease and not all of the suggestions Iíve gotten from other patients were helpful to me but some were. A friend of mine who also suffers from this found some helped her as well yet they werenít the ones that helped me. As a result, I thought Iíd mention some so others can pick and choose and, perhaps, find one that actually helps a bit. Many are said to be for fibromyalgia but Iím not sure if we actually have fibromyalgia or if CFIDS/ME includes pain as one of the symptoms since there is no way of knowing as yet. In any case, here are some ideas that you may want to try.
Sleep seems to be a real problem for me. Just getting to sleep can be difficult so I talked to my physician and, with his help, tried several medications to help induce sleep. When I found some noises would wake me too soon that couldnít be avoided such as a neighbor shoveling snow early in the morning in the winter or kids being noisy on their way to school, I tried a sound machine and that really helped. My friend no longer sleeps in the same bed with her husband since she found his movements would awaken her so they got twin beds, instead. She also takes some pain medication before going to sleep although I did not find that as helpful as she did. We both find silently thinking of two words that we think seem to help get to sleep.
When I inhale, I think of the first two letters of the word relax and when I exhale, I think of the last four. It seems to help to block out other thoughts although it isnít always as easy as it should be. Relaxation techniques vary and some are helpful to some but not always the same ones. My friend tires to think of the most relaxing place sheís been and picture herself being there such as on a beach or in a garden.
There are some nights when none of my methods Iíve heard of seem to work and I just donít get enough sleep. When that happens, I find taking a mid-day nap is beneficial. Sometimes I donít fall asleep during that time but resting is helpful and other times I find myself waking up an hour or so later!
There are some before bedtime things that may help some, especially after a day that hasnít been very good but even these things will differ between patients. My friend finds just taking a warm bath helps. When I found my sleep disrupted by muscle cramps, I found a talking to my doctor who prescribed a muscle relaxant worked wonders. My friend had similar problems although not exactly the same and she found just typing much less at her computer was helpful but not completely so she tried some topical creams. She also found eliminating some activities or shortening others helped as well as a sleeping medication for short periods of time.
Neither of us were helped by a massage therapist and we both tried different ones, as she doesnít live in the same town as I do. The things that worked best for both of us were often different but we both are better off with our different methods. Donít give up! You may find something completely different that helps or, strangely enough, you may find something that you had already tried that didnít help is a real help now. Just living with CFIDS/ME and trying to manage it is a huge problem for us all but sometimes there is help when we least expect it.
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606