Aa
how do you keep from totally freaking out?
HELP, PLEASE!!! To all of you fellow pain sufferers - i'm new to this computer thing, but i can' find anyone in my personal life, (although i have loving family and friends), who can actually relate to my 24 hour pain. the pain is, of course just one of many symptoms, but i am currently bedridden and today i feel like screaming but i can't. i feel alienated and misunderstood - i'm 32 now, i was dx'd 8 years ago, FM & CFIDS are the tip of the iceberg for me. how do any of you handle terrible days like this? any advice or encouragement from those who know this pain and frustration would be sincerely appreciated and paid forward when i can.
thank you ladies for taking the time and energy, which i know is precious, to send your very kind and truly helpful support. i am currently dealing with chronic gastritis, so i can't really type for long without causing some pretty nasty nausea. i just wanted to thank you - i'll be back in touch when i can manage it.
sorry to hear that you have been diagnosed with fibro. I have lived with this condition and other arthritis problems since my late 20's after a ski accident. My rhuemo dr. gave me celebrex and plaquenil for arthritis plus antidepressants for fibro for years. He also gave me percocet for really bad days. I was young with a family and a life and i was not ready to give up and go to bed several days a week. Now that I am 48, I am still youngish with a life and I still don't want to go to bed several days a week. There are nerve pain meds out there that help, My rhuemo dr manages the arthritis and fibro with success and a pain management dr. helps me with my chronic pain. Pain meds are not the way to go for everyone, but they have helped me live a normal life. I still have to rest and say no to some requests for my time, but that came easier with my big 40 birthday. I'm now looking forward to my big 50 in two years. Take moving up the pain med ladder slowly. This is not always the best route, but it can be a part of the big picture. Accupuncture and been helpful too. Stay physically fit and active, sleep well at night and enjoy your life. This is one of those curve balls that people get thrown in their lives that help them prioritize what is important to them. I hope you find what works for you. I still have very bad days and weeks that I feel hopeless and you may find me commenting on them some days in this forum, but I have lived well too. please keep in touch. ginap48
Hi alexis,
My thoughts n' prayers go out to you and all of the millions of people around the world who have a chronic illness. What has helped me through the years (and many of these years I was undiagnosed) was pacing myself, meditating and alternative medicine. I am currently on a treatment that is slowly, but surely restoring my health and I focus now on getting well and my recovery.
I hope you will check out our Health Pages. We have a ton of information on both fibro and CFS, including various treatments recommended by physicians who are interested in these syndromes and keep up to date on the latest fibro and CFS research. A couple of these physicians have treated their own fibro or CFS symptoms.
Hi and welcome -
Many do not have the support of their loved ones or co-workers, so we do understand what you are saying. It's not an easily understood illness and there is simply no way others can understand why we look ok, but feel like a train hit us. We can also relate to the feelings of isolation and being misunderstood. Please know that we are here for you and can empathize with your condition.
We all have our methods of dealing with flare-ups or bad days. Getting proper sleep at night is of the utmost importance in relation to these illnesses. Also, learning to pace yourself so that you don't bring on a flare or end up in bed for 3 days is beneficial. We have all discovered, quite unplesantly, that we can no longer do many of the things we use to do. It's part of accepting our limitations. We must or we will pay dearly the next day or so. Some enjoy massage; others water therapy, accupuncture, meditation...it depends upon what works for you.
I also have other medical problems outside of FMS/CFS and it isn't easy to manage. I no longer work as i'm disabled. I spread my housework out during the week and only do what I feel capable of doing. There are days when I push myself to hard, but i'm learning. I have also learned how to say NO. A very good word for us. I don't overcommit myself to things I do not feel up to doing. If I can't do it I say "No." I no longer try to be a perfectionist, at home or anywhere else. I think we all have to reach some level of acceptance and make peace with our illness. I know it's easier said than done.
Please look into our Health Pages at what Dr. Nicolson and others have found about FMS/CFS and its causes. There are some protocols that you can do at home, or with the help of your physician, to begin the road to healing. Until they come up with a way to actually treat the illness, instead of symptoms, we must be our own advocates and be knowledgable about it. Knowledge is power! :-) You do have some options for treatment.
Hope you have a better evening. Take care.
Many do not have the support of their loved ones or co-workers, so we do understand what you are saying. It's not an easily understood illness and there is simply no way others can understand why we look ok, but feel like a train hit us. We can also relate to the feelings of isolation and being misunderstood. Please know that we are here for you and can empathize with your condition.
We all have our methods of dealing with flare-ups or bad days. Getting proper sleep at night is of the utmost importance in relation to these illnesses. Also, learning to pace yourself so that you don't bring on a flare or end up in bed for 3 days is beneficial. We have all discovered, quite unplesantly, that we can no longer do many of the things we use to do. It's part of accepting our limitations. We must or we will pay dearly the next day or so. Some enjoy massage; others water therapy, accupuncture, meditation...it depends upon what works for you.
I also have other medical problems outside of FMS/CFS and it isn't easy to manage. I no longer work as i'm disabled. I spread my housework out during the week and only do what I feel capable of doing. There are days when I push myself to hard, but i'm learning. I have also learned how to say NO. A very good word for us. I don't overcommit myself to things I do not feel up to doing. If I can't do it I say "No." I no longer try to be a perfectionist, at home or anywhere else. I think we all have to reach some level of acceptance and make peace with our illness. I know it's easier said than done.
Please look into our Health Pages at what Dr. Nicolson and others have found about FMS/CFS and its causes. There are some protocols that you can do at home, or with the help of your physician, to begin the road to healing. Until they come up with a way to actually treat the illness, instead of symptoms, we must be our own advocates and be knowledgable about it. Knowledge is power! :-) You do have some options for treatment.
Hope you have a better evening. Take care.
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