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Chronic Pain
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Posted 5/1/2013 9:09 PM (GMT 0)
Hello all, new here. Lets see well i have had chronic pain since i was 3 mostly my legs and got worse as i got older effecting my arms and back then i was diagnosed at age 13 with crps or rsd fast forward to age 27 i had my first and only child thats when things got much worse, headaches untreatable sever pain brain fog ect... so took me a while but i now have an amazing younger doctor who wants to know whats wrong with me as bad as i do. He dosnt think its rsd because i dont have the skin changes, just went to a neruo doc and he said its rsd then went to another and he says its fibromyalgia and my doctor cant believe that we cant get a straight answer and my ins wonnt pay for an mri my doc thinks we are back at square one but he says its ok cause we know its not rsd or fibromyalgia the other docs dont listen to me when i tell them whats going on. My doc thinks when we do find out its gonna be something weird lol all hes sure of is that its autoimmune and its nervus system related. So if anyone has any ideas id love to hear them
Posted 5/1/2013 11:33 PM (GMT 0)
Hi and welcome. I'm sorry, but it is virtually impossible to give even an educated guess about what is going on with you medically. Everyone her is really just a chronic pain patient and we have no doctors assisting on the board. We do have some nurses and/or former nurses and possibly others in the medical field, but we do not diagnose anyone. Occasionally you may find a person who is in the same situation that you are and they can help some.

I recommend leaving the guesswork on this one for the medical professionals. It sounds quite complicated and, assuming it is a rare disease or syndrome,it would be u likely that anyone could really properly "guess" what it is.

I hope you find relief and answers soon.
Posted 5/2/2013 1:21 AM (GMT 0)
Hello Squishy and welcome to HW. You certainly fit the criteria for chronic pain and sorry its been such a long road for you.

Retired is right,with such a variety of symptoms I couldn't wager a guess. You have various specialists who don't know.

We can sympathize with your pain and frustration of not having a positive diagnosis and we can offer our support and prayers. Certainly glad to have you join us and look forward to hearing more of your story.
Posted 5/2/2013 1:51 AM (GMT 0)
Hello Squishy and welcome! You'll find a lot of helpful advice and recommendations here. Sometimes doctors can write letters and such to insurance companies to get things like MRIs approved. Look into that if you haven't already. Also, since there are no specific tests for fibro, how is your doctor so sure that's not what it is? I'm glad you have a proactive doctor that wants to help and wish you the best.
Posted 5/2/2013 8:53 PM (GMT 0)
Hi Squishy, I have had trouble getting a diagnosis as well so I know how frustrating it can be. I am new to chronic pain so I have no idea what you may have. I did tons of research and found out I might have Lupus. So I got tested and it is a possible. So I am seeing a doctor about that later this month. Also for my pain issue I just kept going to different doctors. I saw a team of doctors in the hospital, a gastro, a neurologist, a hematologist, oncologist gyno, infectious disease, and a pain management. I still don't have a for sure diagnosis but I have some treatments that are helping with the pain. Just keep looking and you will find your answer.
Posted 5/3/2013 12:45 AM (GMT 0)
As bad as things are right now it sounds like you have hit the jackpot that many of us wish we could win. A doctor who is curious and wants to know what is really going on and not just settle for the first thing that comes to mind.

I wish i could find a doctor like that for treating my diabetes. Every doctor I have ever seen for it just goes by what is written in the medical text books even though countless documents (records) I have provided indicates that my case is not typical. (Just a little rant.)
Posted 5/6/2013 6:56 AM (GMT 0)
Yes the doc has written letters to my ins. But they still wont accept it, fibro is ruled out because i display neruological issues that are pretty clear like urination issues falling ect. And the fibro pain points do hurt but it hurts like that anywhere on my body. Thankyou for your support :)
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