11 Nov
Posted by Fibromyalgia Support as Fibromyalgia-Diagnosis
Fibromyalgia is a nerve disorder that causes extreme pain in the muscles, joints, tendons, and soft tissues. CFIDS stands for Chronic Fatigue Immuno Deficiency Syndrome. This basically depletes my immune system to an unhealthy level and knocks me off my feet for days to weeks at a time. The doctor said its the worse case he’s ever seen, and I have an appointment to see the head of rheumatology in January.
My question to you is this: How do you deal with a diagnosis that means that you will be in constant severe pain for the rest of your life? How do you face the day knowing how much pain and exhaustion it will cause you? Most of all, how do you maintain a normal life?
Honestly, I’m scared to death. I’ve only just turned 19 and have huge goals and aspirations that are being obstructed by this condition which has plagued me since the start of high school. I’m now a college student, but its been getting worse and worse to the point where I’m practically useless a great deal of the time.
It’s affected my family, my boyfriend, my classwork, my job, pretty much everything in my life. My mind is more capable than my body, and that drives me absolutely insane. Sometimes my boyfriend can’t even touch me because the pressure hurts too much on my skin. How will I be able to deal with kids and a job that requires me to be present all the time?
Please offer any advice you can, I know that the situation is kind of specific…
4 Responses
Peter_M
November 11th, 2009 at 9:22 am
1God bless you, I so feel for you. I have peripheral neuropathy along with prostate cancer, severe joint disease, disc disease, deep vein thrombosis and just diagnosed with type I diabetes BUT I am 66 and not 19! My hope for you is that the doctors can do some serious "pain management" for you. After experimenting with several things I have settled on oxycontin, 30mg, three times a day. The oxycontin doesn’t have the tylenol that some preparations have and thus less chance of damage to the liver and kidneys. The "Oxy" is managing my pain although it never goes completely away and I don’t know how much it would help you. One thing I did notice is, since it is being directed at my pain, I don’t experience any "high", unsteadiness on my feet or other side effects that hinder other every day activities. I know this isn’t much help but I wanted to offer something…I hope you find some relief somehow and I will say a special prayer for you tonight….
___Jeanene___
November 11th, 2009 at 2:45 pm
2They do have fibromyalgia support groups. If they have one in your area you might want to attend them. You can learn from others who are suffering like you,what they do to get theirself through the day. They may take some kind of meds or shots. It may help to ask the advice of others in the group and also ask the doctor what you can do for it. You have your whole life ahead of you and I can’t even imagine how you are going to function. I know a lady in her 50’s who has it and she has a very hard time,it’s gotten harder for her over the years. I think there is no cure for it and I do not know if it gets any worse the older you become. Best wishes to you dear.
Anne_H
November 11th, 2009 at 4:56 pm
3Fortunately there is free information and free help available.
http://www.FibroFix.com is an all free site.
Explains Fibromyalgia and how to beat the symptoms.
Use over-the-counter meds you can get almost anywhere + tricks and tips.
People who want your money are lying about Fibromyalgia.
The truth is setting us free.
Dominie
November 11th, 2009 at 10:35 pm
4I can sure relate to everything you said! I have had FMS since 1982 http://www.fms-help.com/fibro.htm and CFIDS since 1987 http://www.fms-help.com/fatigue.htm. See my 100 Tips for Coping at http://www.fms-help.com/tips.htm
I have a website with FMS/CFIDS information (online since 1996) at http://www.fms-help.com I also write a free newsletter that you can subscribe to (see link at top of my homepage). I have a support group on Yahoo that is open to all of my newsletter subscribers. I hear from more younger people now than ever before who have FMS/CFIDS - see my page about children and teens at http://www.fms-help.com/teens.htm
Presently there is no "cure," but there are many things you can try in order to feel more comfortable and functional. My personal list of helps is at http://www.fms-help.com/what.htm Not everything works the same for everyone, but these meds/supplements/lifestyle helps assist me in staying as functional a possible.
I truly understand firsthand what you experience! Please visit my site. You will find lots of help, support and information there. If you are having trouble explaining fibromyalgia to your friends, family, teachers, etc., see http://www.fms-help.com/mnif.htm ("My Name if Fibromyalgia") - a classic article - short and to the point in plain English - no medical jargon.
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