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6 years ago  ::  Mar 14, 2009 - 1:36AM #1
Ericalauren
Posts: 12

Hey all! I'm 21 years old and I have fibromyalgia and chronic fatigue syndrome. I've been sick since I was 13 years old. Is there anyone else here who is young and has a chronic disorder? Or, who has been sick since they were young? If so, did you get the whole "teenage angst" or "maybe it's just hormones" thing from doctors? I got that a lot, plus, "there's people dying in Africa and therefore you cannot be suffering." Oh, and then I got thrown in a drug rehab facility (despite that I have never done drugs) at the age of 16. Apparently, that's legal in America.

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6 years ago  ::  Mar 14, 2009 - 7:29AM #2
ladyhuckleberry
Posts: 3
I can definitely sympathize with you because I have fibromyalgia myself, as well as other health issues. They're not fun to deal with but with my Faith I've come to deal with things a lot better. Should you want to talk please feel free to get with me. My name's Jan. You can reach me at ladyhuckleberry@aol. Look forward to being there for you if I can.
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6 years ago  ::  Mar 14, 2009 - 9:09PM #3
karbie
Posts: 3,329

And I thought my soon-to-be ex-family doctor was bad! The fact that there are people suffering in Africa doesn't mean squat about your own pain. My mother had the answer to that when she was 3 and had broken her leg when another child pushed her down. The nurse told her, "Now, now..your leg doesn't hurt that much!" And Mother told her "How would YOU know--it isn't YOUR leg!" Which I thought was really cool because she was right and she'd gotten away with talking back.


I understand about not being believed about somethng being wrong. No one in my family believed I really had an ulcer or gall bladder problems when I was a teenager because they never showed up on the tests. When it was discovered that the ulcer had formed an adhesion to the abdominal wall and that I'd been having gall bladder attacks for over 25 years before it came out, she was really upset for just writing it off as trying to get attention.


The fact that people are suffering in Africa doesn't change the fact that you are in pain here. If you doctor is so concerned about it, they can head over and do volunteer work there. I'm horrified that you were committed--I know that someone can be held for 72 hours against their will, but the initial bloodwork should have been enough for them to let you go. Most of all, I'm sorry that you have been suffering for so long without being believed.


My niece was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome at age 22 after being in pain for years, too. She has other problems that she thought were the cause and was really upset to find out she has these as well. Since my older sister and I have it, she knows what the "coming attractions" are and isn't too happy about the whole thing. The main thing that has changed is that more doctors are willing to believe that Fibromyalgia exists. The Chronic Fatigue comes along for the ride because the pain from the fibro keeps us unable to have really restorative sleep no matter how long we stay in bed. I've been in denial about the CFS myself because I just didn't want to add another disease to the list.


Try and see if there are any support groups for chronic pain in your area. Foods that are rich in antioxidents will help lower your pain levels and increase your mobility as well. Cherries are very good for this--fresh, frozen, canned, dried, juice--I didn't believe how much they could help until I went from walking with a cane indoors to being able to do stairs without being in pain. Cranberries, blueberries--all of those were used by the Native Americans to help with arthritis pain. Try to get a lot of B-complex vitamins in food or in supplements--that can help as well.


Try getting either the cotton jersey sheets that are like t-shirt material or sheets with as high a thread count as you can afford--one of those little things that help more than you'd think. I can't afford a memory foam mattress, but even a topper is a help--especially during a flare.


I've been on Lyrica but am coming off that for something else. I was willing to put up with the side effects in trade for some mobility, but I sure jumped at the chance for something else. I currently have all my joints--even in my toes--swollen and painful. It may be from the Lyrica--I knid of hope it is so it will go away, but I have arthritis in too many places to really believe it. I'm just hoping it isn't a sign of the rheumatoid arthritis my Grandma had.


I'm glad that you found us. This is a safe place to grumble, share news of anything new that can help, or just be with people who understand what you are going through and BELIEVE you. The friends I've made here and on the other forums have been a blessing in my life--just talking to someone who knows what you are going through has been a huge help for me. I hope that you can get a doctor who specializes in Pain Management; their goal is to get your pain level down as far as possible so that you can still have a life. Hang in there--and for the more or less traditional welcome--we're glad that you found us and sorry that you needed to.

"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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6 years ago  ::  Mar 22, 2009 - 9:13AM #4
Serenity.beliefnet.com
Posts: 3

To not be believed...or not be acknowledged is the greatest of all pains.  The reason for that I would say is because it sends the message of unlove.  My sister always knew that I needed the love I didn't receive ...she knew, but she couldn't change the fact that it was true.  She also couldn't make up for it.  It doesn't make up for anything when a mother turns away or has ignorance that she has something to deal with she is afraid of...I was Bi-polar from childhood, something that was perhaps dark..but not life threatening, something that I certainly overcame and actually did remarkably well.  It is the fact that when you have a generation of unlove...that passes on to the next generation..it just builds on the mistrust...and the darkness then becomes a Spiritual unrest that is more frightening and threatening than any unlove can be ever.  When you are not taught how to love,  or how to trust...as Maslow says...you haven't got the foundation to grow on.  I thank god...my god of understanding, for my sister...she gave me anything I know of love.  As for my mother....forgiveness is an issue I will keep coming back to,  and until I do, I'm sure..pain and unrest..will haunt me.  My mother, my head in the sand, addictive mom...god bless her, and all her ignorance, from her..came me..and I don't know how that happened. 

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5 years ago  ::  Mar 21, 2010 - 6:08PM #5
jenny
Posts: 1

belive it or not.  i am a healthy and active member of society., i never in my dreams thought i would end up with a serious back condition.  it was like a serious bad dream when this all took  place and the news was given to me. it has changed my life forever. since then, i have not been able to work or continue with my daily normal life at home or other wise. i have been riduculed t work and gossiped about my co workers as if they dont believe me. meanwhile, i lay in bed basically crippled with pain. my dr can only do what my emloyer allows him to do for treatment. i pray each night in between prayers of strenght and almost feel like giving up. thats when i receieved "gabriel' in my dream. he comforted me and held me. the most unbelievable warmth i have ever felt. when i woke up, i felt like a new person. still in pain but no sadness. i pray gabriel will come again to help me and give me strenght when i am low.

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5 years ago  ::  Mar 25, 2010 - 5:21AM #6
karbie
Posts: 3,329

Gabriel is one of the Archangels, so you got some powerful help there. It's okay to pray for him to return for you.


On the purely physical side, one of my (now documented) problems is severe sleep apnea; the neurologist at the hospital told me that having sleep apnea will make the pain from fibromyalgia 10 times worse. Now all I need to do is pay off some medical bills, argue with the insurnace about things it should be paying for, and find out what they will cover in the way of helping me get some relief from the apnea. the idea of any of my pain levels going down sounds wonderful, just as not being tired all the time does.


good luck, dear.

"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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3 years ago  ::  Jul 30, 2011 - 11:31AM #7
BlackRose666
Posts: 11

I was diagnoised with fibromyalgia just after college. Since I have changed jobs that means I have changed doctors too, and they usually don't want to say fibromyalgia is a "real" disorder. I've been told (since diagnoisis) that it's fibro-itis (same thing just a different name), degenerate discs in the cervical spine, all types of arthritis (every xray is clean) and tendonitis (again, MRI's are clean), and a pinched nerve due to a technically dislocated shoulder. My should sits forward and up, so yes there is a nerve issue there.


But do any of these explain why, when I'm having a bad day, that not only can I not move my arm but have difficulty walking? And the problem is with the opposite leg.. I have all the tender points, I don't get REM sleep, but it's not fibromyalgia 'cause it isn't "wide-spread". Did it ever occur to these doctors that maybe one pain is so intense I don't feel the others?


I read about some of the different meds other people have tried. I'm glad you are finding something that works! 'Cause i have a tolerance for narcotics and even lyrica didn't help I asked about combining naturopathic rememdies with medical marijuana. Didn't go over well! But if a doctor refuses to believe that fibromyalgia is an actual condition I guess I can't expect him to embrace a different, and more comprehensive, treatment plan than just popping pills all.

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3 years ago  ::  Jul 31, 2011 - 7:24PM #8
karbie
Posts: 3,329

Your doctor is an idiot. there is no specific test for fibromyalgia except checking the pressure points for it. It isn't going to show up on an x-ray, although arthritis will. Fibromyalgia attacks the nerves, connective tissues and your organs. The largest organ in the human body is the skin. I've had days when I would have removed my skin to take that much pressure off my lower back. If he doesn't believe that the disease exists, how can he treat it?


It reminds me of what someone should invent for doctors--a machine that allows them to physically "feel" a patient's pain and symptoms.  It would help with young children, unconscious patients, and  best of all, patients who are in intense pain. The only part I can't figure out is getting a doctor to agree to use one more than once. It's just a daydream.


Pinched nerves aren't uncommon. In my case, I do have degenerative disc disease, plus spinal stenosis. I've had a fusion and bone graft on my upper spine several years ago. I was missing the upper disks except for rubble on the diss below and a bone spur pressing on my spinal cord. I've lost almost 3 inches of height in the last decade between the surgery and the flattening of the disks I have. In my case the degenerative disk and steno sis are hereditary, so that isn't necessarily going to happen to you. I got nerve blocks until my insurance changed. Now it no longer covers any diagnostic test or palliative treatment. When I had my PAP test, they paid for the slide to be read, but the costs of the exam and getting the cells out of my body weren't covered.


I've been a pain management for several years and I'm on a combination of generic Flexeril and Neurontin, which do help a great deal.These aren't opioid, so perhaps having the muscle relaxant/ anti-anxiety  drugs will help calm things down for you.  Even if the fool doesn't believe in fibromyalgia, he could at least try to treat your very real symptoms.


I'm on a fentyl patch to keep a constant level of painkiller in my body. What I can take for pain is limited by the fact that I've had bleeding ulcers in the past and have a lot of sensitivities to drugs. So since I can't take aspirin, alleve, or ibuprofen i can't use OTC drugs. I did find that Pamprin maximum strength-multi-symptom formula helps ease the muscle spasms. the other OTC painkiller that might help you is called Percogesic-- my father could take it without it interfering with his heart medications.


Don't try to push your body too hard, because it takes longer to recover.When my son started college, he was commuting because we live about 35 miles away and it saved us dorm costs. With just one car, we weren't going to let it sit in a parking lot all day. I knew if I took my breakthrough pain pills, I'd conk out. So I came up with the less than brilliant idea of using my pain for energy to keep me going, probably because i was in a flare-up at the time. there is an extreme condition called "Fibro Fog'. When you've pushed too far for too long, your body starts shutting down non-essential parts of the brain, like emotional control and vocabulary. It does feel like you are seeing a fog, and it can lead to stroke or coma.


Here's something that works and id pleasant--eating cherries of any type, drinking cherry juice, pomegranate juice, blueberries--any fruit that is high in anti-oxidants will help to lower your pain levels and increase your mobility. Cherries were used  to treat arthritis by the Native Americans, as were cranberries and blueberries. I have some cherries in the refrigerator now. Let's put it this way--it helps enough that both my mother and husband have bought them for me when they'd gotten up to almost $7 a pound. I wouldn't  have paid that much, but they said the results were worth it.


I do understand what you mean about one area hurting so much that it blocks out areas that don't hurt as much. I hope some of this helps you--this is isn't one of my better days, but I wanted to respond and let you know someone had heard you.

"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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3 years ago  ::  Dec 26, 2011 - 9:48AM #9
REteach
Posts: 15,153

If you have chronic joint pain and dislocations, or can do joint tricks, you need to consider the hypermobility form of Ehlers-Danlos.


Excercise is still the best treatment for both fibromyalgia and EDS.  Deconditioning makes the pain worse. 

I know you believe you understand what you think I said, but I am not sure you realize what you heard was not what I meant...
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