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Sick again-still 15 years!!!!!!

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Chronic Fatigue Syndrome
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Posted 1/6/2007 10:32 PM (GMT 0)
Hello All,

First off, my sincere appreciation for all of the pain and suffering that you all endure. I too have had 15 years of illness, dealing with incompetent and competent (Thank God) physicians, and one illness after another  (troubled preganancy, depression, autoimmune thyroid, endometriosis, fibroids, nasal polyps, allergies...and over 10 surgeries in 15 years).

I thought I was well on my way to wellness. I had a hysterectomy in February and all of my previous issues with pain were gone. My thyroid levels are in check and I felt great.
Now, I am really scared. My arms feel like lead and are so weak sometimes that I have trouble lifting the sheets off of me while I am in bed. I feel like I have a baseball lodged in the right of my neck at the base of my skull. Both of my shoulders ache and feel tight. Muscle relaxers did not help. One night I ended up in ER, they prescribed xanax and steroids. It helped for a short period of time and has since returned. Now I have pain that seems to move(?). Sometimes the inside of my arms will ache or I will have a pain that travels down my left leg- all the way to my ankles. I can't remember (since my thyroid- I can never really rely on my memory). But now, I feel like I am walking in a really thick fog. I see a Rhematologist in a week. Given my history of autoimmune diseases...I can't help to think that this is another one. I hope to have answers soon. I am depressed and scared and angry as hell!!!! I will try to venture in here later so that I can count my blessings...right now....in a really bad place

Thank You all for listening. It helps to know that I can put my feelings out there. I have a 15 yo son who is numb with all of my illnesses. My husband tries to be supportive, but I really don't know how he does it. I am sick of it....I can't imagine how he feels. I haven't been able to hold down a job for more than a few months since we were married. I received a notice from Social Security stating that I am not even eligible for disability because of how little I have worked. My self worth is really wavering......

Posted 1/7/2007 3:19 PM (GMT 0)
Welcome uchurley, I'm glad you found us, but I'm sorry to hear about all of the recent problems you've been having. I'm glad you are seeing a rheumatologist becuase that seems like the right direction to go. If steroids helped you, you very well might have some type of autoimmune issue other than thyroid. As you can see from my signature, that many years after developing CFS I now have lupus. I do know how hard, frustrating, and scary it is to be so sick and to not be sure exactly what is wrong. When I first got sick with lupus symptoms I was in diagnosis limbo for almost 3 years. I also have children and a husband and know how hard it is to try to be a mom and a wife while being sick. I think our system for giving people disability really stinks and I think it is set up to give disability to as few people as possible. Hang in there and know that you are among people who understand what you are going through. There are other great forums here too if you do find out you have something like lupus or fibromyalgia. Let us know if you have any questions or we are also here for you if you are just having a rough day and need to vent. Take care and I look forward to hearing more from you
Posted 1/7/2007 11:58 PM (GMT 0)
Thanks Hippimom,

I will keep on keepin on. I have to. I will let you know what the results of my tests are. I see the Rhematologist on the 11'th and I made sure that I asked to fast so that I could have any tests that they require. I have had ana tests before and they came back negative. But, from what I have read about diagnosing Lupus, you can still test negative for ana's and still have it. Truly, I have read just about everything I could get my hands on. This whole ordeal with my arms being heavy as lead is really scaring me. I hve been chronically ill for a very long time, but if this continues to get worse...I can't even imagine. Thank You for your reply. I hope you are doing well these days.

Posted 1/30/2007 1:34 PM (GMT 0)
Hallo uchurley,

Please remember it is not your fault you are sick. It is such a shame that people do not realize the struggles chronically ill people go through to continue leading a normal life and trying to cope & thrive despite our physical problems.

Your family might think you were a hero if they spent an hour or two in your body!!!

Have you ever been tested for tick-borne illnesses, uchurley? Lyme Disease is a multi-systemic illness that could be the cause of any of the problems you described. Current blood tests for Lyme are not reliable. Diagnosis is usually made on the basis of symptoms/possible exposure to ticks.

Some people do not remember being bitten by a tick and never see a bulls-eye rash. Symptoms can lie dormant for many years (even from childhood) and be triggered by a stressful life event. Also it is possible to go into remission and then have symptoms return again later if not treated properly.

One of the reasons I bring this up is that the use of steroids can disseminate Lyme through the body very quickly and cause a flare up of symtpoms.

The 'good' thing about have Lyme Disease is that with proper treatment, most Lyme patients do recover. I only want to suggest that this is an area you could do some research on and try to at least rule out the possibility of Lyme Disease.

I wish you good luck on your search and hopefully journey back to health ...
Posted 1/31/2007 2:23 AM (GMT 0)
Thank You for your help. I had a battery of tests done by a rhumatologist and he seems to think that I have fibromyalgia. I see him again in a few weeks and we will review the test results together. From what I remember the nurse telling me, I don't have Lupus or MS. Those were the biggies I was really afraid about. But, since fibromyalgia is a "rule out" type of disease: There is still some seed of doubt as to the correctness of the diagnosis. When I am feeling a bit more energy, I will post some questions on the fibromyalgia site. Thank You for your help. I will discuss whether they ruled out lyme disease in all of my tests too. Thank You !!!!! I will keep you posted.
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