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I was diagnosed with FMS about 3 years ago, about a year after I had a case of Lyme disease. I don't have the typical points of pain, but I have lots of pain, much caused by spinal problems & age appropriate arthritis (I'm 65). But my rheumatologist still feels its FMS, albeit, a non typical type.
The fatigue is overwhelming sometimes. I've wondered if I might have CFS, have heard doctors lecture on it. I wonder, but don't hear anything that would convince me that if that were the diagnosis, I'd get a better result from treatment. I'd love to hear feedback on this.
Rick
Hi.
I've had FM for years and the fatigue is almost worse than the pain and my pain is severe. It is a package deal. It seems like most doctors want to talk about the pain more than the fatigue. I don't know if the English language has a word to describe the overwhelming fatigue that FM brings. It is also very embarrassing for people like me to mention it because I was always the hyper member of my family. People respond with comments about how they know how I feel because they are so tired and they hurt also. They just don't understand. Now, I feel shame because I feel that I am not pulling my weight in life and I can't do a thing about it. Others think that we are lazy or wimps. I've taught school for 23 years and each year I could handle less and less. The doctor's told me years ago that my FM would never get worse. (It was called Fibrocytis back then.) Each major trauma in my life has left me unable to return to the last step that I was standing on. This year I resigned from teaching. I was born to teach so there is a lot of sadness in my heart right now. The good part is that I can pace myself and that alone has lowered my general pain level a little and if I need to sleep and can sleep then I do. I'm still working on the guilt and the loss of our major family income. My disability was denied because pain and fatigue are not measurable so they could not be included in the Teacher Retirement System. Unless you have an additional illness that can be measured or seen then you are not considered for any help. I was sent for a psych test and came out fine so I don't know why they think this is just in our heads? Hopefully, someone will find us help soon so that we can have our lives back.
Does anyone else have trouble keeping up on the cleaning of their home? I used to pay for help but I can't afford it now. I thought that since I wasn't working that I would be able to keep the work done on my own. Not so.
Thank you for allowing me to chat.
Judy
Rick,
I'm sorry. I forgot to mention that I've heard that men don't always have the trigger point pain. But, even if you have them all like I do, the pain is an all over aching pain. It is like you have a high fever and you ache all over but you can't take anything that will help the pain go away so it is always there. I have several friends who will say their neck hurts or their shoulder hurts or their back hurts. You can't just have neck pain and be it be considered FM.
Also, it may be that because I am 57 that I've begun to notice age discrimination but doctor's like to blame things on our age. I have the "advantage" of having had this when I was young and I'm also very healthy otherwise.
Judy
Hi, I know exactly how you feel. It's like having the flu on a daily basis and the feeling of being run over by a bus. I, too, was a teacher and forced to leave my job last year after an accident, I started experiencing the symptoms and was diagnosed with CFS, UBS, Fibro, CPS,...too many to name. I filed with my personal disability to help with bills and was informed that I could only be covered for 2 years. I was stunned! Like you, I have no energy and have to rest as needed...I cannot sleep due to insomnia or pain, whichever decides to act up. I need the monetary help due to the fact that my husband is in the military and is sometimes without any orders, therefore, he doesn't get paid and we lose our insurance. You are not alone...I really feel that the Medical Board need to petition to these insurance companies to extend our coverage for life. This is a horrible desease and it is very dibilitating. I used to pride myself in being over zealous and always having awesome dinners for my huge family and now, my home is empty with a pain-ridden carcass inside on her bed.
Anyway, I wanted to ask you, if you had any type of medical disability insurance that you can go back and file on...I know it is short lived, but any small amount helps. It is sickening how these insurances go and pitch their bit to teachers and other working Americans, but fail to mention the small clauses that say you won't be covered for life just because you have a dibilitating desease and your world is turned upside down! Greed! Is a horrible thing!
You're not alone, I will be praying for you...hang in there!
Kitty
Severe Mixed Sleep Apena and Severe Chronic Fatigue Syndrome/Fibromygia
I am almost 58 years of age, have never been a smoker, not excessively overweight, and exercise on a regular basis. I have been a teacher for 26 years and now teach gifted children.
I have been diagnosed with Chronic fatigue Syndrome -CFS (b-19 parvo variety) and recently developed severe mixed complex sleep apnea. I am often so fatigued from the CFS/fibromyalgia that I cannot wait to get home from work to get some sleep. I have undergone sleep tests and it was so severe I was placed on a VPAP which the insurance company when it saw my medical test did not hesitate in giving me.
All of my medical tests and doctors were through the University of Miami School of Medicine a renowned university medical center. My CFS doctor is internationally known as an expert in the area.
The VPAP machine does help me at times, but often I still wake up gasping for air. It is a terrible feeling. Often after 1-2 hours of sleep I awake choking for breath. If I sit up 4-5 hours I can often go back to sleep and get say another 1-2 hours of sleep before I have to go to work. I can only imagine what is happening to my body. I have noticed that stress makes things worse.
My advice is to rid one's self of as much stress as possible as it is not worth you health in the long run. It may seem hard to divorce yourself from something or someone but there are no other alternatives. If you keep on heavily involved in a stressful situation it will only get worse.
I would also like to add that I was a very physical active person all through my life until I developed severe CFS/Fibromyalgia. Up until my early 50s I was able to walk several miles per day and bench pressed 300 lbs. I was able to work in and maintained my rather large yard my at during this time completed several advanced college degrees with honors.
My house at times looks like a dumping ground as I often go days or weeks being unable to clean up due to the joint pain and sleep deprivation. I am a 6.3 250 pound male.
I feel and pray for all of you.
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Thanks again Florence -this is great information. It is important for us to have these kinds of matierals and great to have an expert like you bringing it our way!
All the best, sue
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