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Agony Offline
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Anyone with an autoimmune disease? - June 28th 2012, 03:42 AM

So at first I thought I had cancer but my mom told me that I didn't and if I did the doctors would know by now. My mom has an autoimmune disease and I have pretty much every symptom for one, so although I haven't been diagnosed yet (were going to a Rheumatologist when we can) its pretty obvious that I have one. The sad thing is they can't do much of anything to help, and I play a lot of sports but I can't play much anymore because I in constant pain. I read that you can die from it and I'm really scared I'm tired of being in constant pain and feeling like I'm slowly dying. I cry almost every night because of the pain (like I'm doing right now) and I just can't take it. Is there anyone with an autoimmune disease that can help me through this? Or anyone who has something that makes them in constant pain? I just feel like I'm losing all hope and I need support. Thank you, sorry if I sound pathetic.



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Agony Offline
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Re: Anyone with an autoimmune disease? - June 29th 2012, 05:41 AM

Does anyone know anyone with an autoimmune disease?



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Re: Anyone with an autoimmune disease? - June 29th 2012, 08:05 AM

My friend that lives in the USA has Fibromyalgia she copes okay with it but sometimes Shenandoah anything it sucks




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Re: Anyone with an autoimmune disease? - June 29th 2012, 10:07 AM

You can't really group all autoimmune diseases together because they vary vastly, for example I have a type of Arthritis but my future father in law has an intestinal condition which is also an autoimmune disease. Type 1 diabetes is also autoimmune as well.

But you'll probably be fine... maybe
   
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Re: Anyone with an autoimmune disease? - June 30th 2012, 04:48 AM

Quote:
Originally Posted by Boobies View Post


But you'll probably be fine... maybe
That doesn't exactly reassure me lol



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Re: Anyone with an autoimmune disease? - July 2nd 2012, 04:04 PM

I wish there was something I could say to make it better or that I could tell you that I or someone I know had some great way of dealing with something like your describing and have suggestions, but there isn't anyone. Is it possible to get any more powerful/effective pain killers prescribed to help while they try to figure out what is wrong?
   
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Re: Anyone with an autoimmune disease? - July 2nd 2012, 07:29 PM

My parents don't want me to get addicted to pain killers and my mom doesn't think they'd help anyways :/ I wish though. I hate feeling like this.



When I'm sad I think, "I got a jar of dirt, I got a jar of dirt!"

You can't change fate, but you can change your attitude towards it.
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Became a HelpLINK mentor on July 13th, 2013
   
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Re: Anyone with an autoimmune disease? - July 2nd 2012, 11:35 PM

Hi there. I read your post and it made me sad so I signed up for this forum so I could reply to you, normally I'm on facebook helping people. I'm a mom myself, and would want someone to guide my kids if they were not feeling well too, so I'd like to make a suggestion for you, since you are young and I'm concerned that your physician may not test you for all possible conditions, and instead, may heavily medicate you forever. You need to get to the underlying cause to get well. I do not know what you have, nor claim to know, but when I hear about people who have numerous symptoms, I always wonder if it's due to microorganisms (infections). Please consider getting tested for Lyme, it can occur without the traditional "bullseye" rash and it is transmitted from ticks, fleas and other insects, and lots of people get it from their pets. Most people don't know they got bit, but they know they are suffering and nothing helps them. I always think of testing people for Lyme when I hear "autoimmune" problems that remain unresponsive to conventional medicine. It is worth checking out. If you do decide to test, the ONLY reliable accurate test is offered Igenex. Most physicians do not use Igenex, they use regular labs and those tests will often give false negatives, so you think you are free of the disease, but you may very well have it because the testing is not good. So if you test, you need to use Igenex (I do not work for them, or have any connection) I just want you to have good testing if you are going to bother. Just google Igenex labs, this thing isn't allowing me to post URLs. Look at the symptoms of Lyme to see if it fits you. Google this, for whatever reason I've had to remove the URL b/c I've not posted in this forum before. Anyway the treatment for this is a series of various antibiotics. Again, I do not mean to imply you have this, I am simply trying to make sure that you test yourself just in case because I know people who have dealt with never-ending symptoms for 10-20 years only to find out they had Lyme or a co-infection. It's just a blood test and you will know one way or the other. The organisms they look for include Bartonella, Borellia and others, you should research those because the symptoms differ depending on what organism a person has been infected with. I wish you well :-)
   
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Re: Anyone with an autoimmune disease? - July 2nd 2012, 11:40 PM

Meant to tell you in my first post that there's a strong correlation with Bartonella and Rheumatoid arthritis, the latest study is entitled "Veterinary and human medical researchers link Bartonella to rheumatic disease" and Bartonella is one of the Lyme organisms. Again, I do not know if this is your problem but many people will mis-diagnosed with cancer, or various different auto-immune disorders and the treatment is in the thousands of dollars and it will not help (in fact it will harm) a person who is experience symptoms that are Lyme-related versus truly auto-immune. So the key here is to find out for sure, with 100% certainty, do you have an auto-immune disorder, or do you have an infection such as Bartonella (or Lyme). The treatment strategies are completely the opposite of one another. Just trying to help. This could help your mom as well. Good luck. Best wishes, Suzy
   
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Re: Anyone with an autoimmune disease? - July 3rd 2012, 08:11 PM

Hey, I have "arthritis" due to an autoimmune problem, so I can relate to the pain. The only reason arthritis is in quotations is because at this point we aren't sure that is what it is. We are calling it arthritis because of the joint pains but that is about it because it doesn't act like arthritis. Arthritis usually gets better with exercise but mine gets worse...go figure. I have been tested for a million things but none of them came back positive. I am sorry you are going through this.

The thing with pain relievers is finding what works for you. I find Tylenol to work best but I used to feel that naproxen (the generic of alieve) worked best, so sometimes it is best to use these medications on a rotation. Also, Epsom salt baths help some. The thing that has helped my pain the most was acupuncture. I'm not going to lie I was terrrrified when I decided to go, but it really doesn't hurt and it works great. I hope some of this helped! PM me and we can chat some more if you would like.


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