Discussions By Condition: I cannot get a diagnosis.

Fibromyalgia or Not Fibromyalgia that IS my Question!

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: queenofyuma
  • October 3, 2008
  • 04:17 AM

Thursday, October 2, 2008
Hello All,

I’ve suffered a long time from pain that doesn't seem to have a real diagnosis, I've been diagnosed with many other things in the past but after all the C.A.T scans and M.R.I'S, being pinched and prodded, medicated and having needles stuck in me as well as physical therapy, all things that either didn’t work or made everything worst. Then of course my making a lot of Doctors rich along the way, until eventually the doctor changed their diagnosis, and then once diagnosed they would send me over to another Doctor, and the process would begin again, test after test after the same test.

Now I feel like I'm going my final round, I have one more doctor (the last one said he didn't know what was wrong with me, so I should find a Doctor who could, well at least he sent his wife out to tell me, I never really got to see him again, guess I really scared that one away)! Seriously, I don't want to go to anymore Doctors (after this last one I'm seeing, how many times have I said that)? I'm tired of going to doctors and just having them tell me what I already know, "you have pain but we can't figure out why"?

So maybe I can get some input from the people here, how do I find out what I have, could it be fibromyalgia? How would I tell my doctor to look for this kind of disorder? I know I'm sore all over, tired, my joints hurt, my head hurts, etc. You name it and its been hurting and making me very tired for about three years now. But I'm no good for my family or myself as I am now.

I did not hear of fibromyalgia until recently, it is the one disorder I have never been diagnosed with nor did I really think about until I heard that two cousins of mine have it, and a friend of ours, all their complaints sound a lot like mine.

How do I know I have it, maybe I don't, but if I do, how do I get the proper help from my Doctor and make sense so she'll listen? I just want them to test me or "whatever" needs to be done, so that we can either rule this in or out of my life? Either way the problem is painful and I'm so tired of the negative medical treatment which I have received thus far.

I'll be waiting to hear from you, any advice is better than none after all it's my body that's feeling this miserable pain and so far the Doctors have been no help at all, so I'm ready to listen to the people who suffer from pain and get your take on this?

I can't thank you enough for listening.
God Bless and be well!
QueenofYuma:rolleyes:

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5 Replies:

  • Hi Queen,I hope you get more information soon about your condition. I will share my experience with you. I was diagnosed with MS, Lupus, Fibromyalgia and Chronic Fatigue and a few other things over the many years I was seeking help. It turns out I have Babesiosis and Lyme Disease. Most doctors won't test you... of if they test you for this they will send it to a local lab which mostly aren't helpful. You will get a negative result.It took me over 8 years to get my first treatment after a positive test for Lyme and now it has been a total of 15 years for the Babesiosis and the Lyme Disease is still there. Even though I was treated for Lyme agressively for a short time, the doctors I saw later thought of me as a faker and someone needing attention or it was all in my head type of diagnosis. I am so angry that it has taken so long to get a decent diagnosis. But that ONLY came about once I decided to go to a LLMD -- a Lyme Literate Doctor. If they don't tell you they are LLMD, don't bother. Find a doctor to be tested correctly and completely. It isn't cheap, but waiting is not an answer.I am now looking at a lifetime of treatment because doctors didn't LISTEN to me. I hope you can find help and relief. Never give up. Keep fighting for your health. It is NOT normal to loose your energy and be in such pain. You are not alone! Email me if you wish.Take good care of yourself. No one else really gets this, unless they have gone through it. keep the faith and strength, Light
    Anonymous 42789 Replies
    • October 3, 2008
    • 06:01 AM
    • 0
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  • Hi Queenofyuma, I read your post and you sound just like me ! You are not alone,Im sure you've had many replies the people on this site are GREAT!!!! Ihave seen many Dr.s and been sent back & forth, I did find 1 dr. I really like , she was a rheumatologist & my insurance dropped her, I was so mad..... any way I do see a rheum. now & they still don't know what is wrong with me.First they thought I had Grave's (Thyroid problem), then it was Lupus, then Fibromyalgia, then Sarcoidosis and now we are back at FM. It is crazy, you know you have real physical pain sometimes unbearable and you know it is not right but the dr.s tell you this blood test is slightly high or there is nothing significant enough to diagnose you, it is so flustrating. I can tell you to check out some of the fibro websites & google fibromyalgia but it really is hard to get Dr.s to listen when they think its FM, my rheumatologist even told me its a wastebasket diagnosis(currently looking for NEW Dr.) and that doctors put that label on it when they can't figure it out. Just keep pushing it is your body and you know when something isn't right , do not give up we all deserve to have at least a mostly pain free life. learn all you can and use it with your DR.s to show them you are NOT going to let down. I hope this helps and I will pray you get your diagnosis! Take Care & I'm pullin for ya! Bridge27
    Bridge27 14 Replies
    • October 3, 2008
    • 06:21 AM
    • 0
    Flag this Response
  • Hi Queen,I hope you get more information soon about your condition. I will share my experience with you. I was diagnosed with MS, Lupus, Fibromyalgia and Chronic Fatigue and a few other things over the many years I was seeking help. It turns out I have Babesiosis and Lyme Disease. Most doctors won't test you... of if they test you for this they will send it to a local lab which mostly aren't helpful. You will get a negative result. Find a LLMD doctor who will test you through Igenex lab in California. Dont settle for local labs on this and don't settle for doctor who isn't a LYME DISEASE Specialist. It took me over 8 years to get my first treatment after a positive test for Lyme and now it has been a total of 15 years for the Babesiosis and the Lyme Disease is still there. Even though I was treated for Lyme agressively for a short time, the doctors I saw later thought of me as a faker and someone needing attention or it was all in my head type of diagnosis. I am so angry that it has taken so long to get a decent diagnosis. But that ONLY came about once I decided to go to a LLMD -- a Lyme Literate Doctor. If they don't tell you they are LLMD, don't bother. Find a doctor to be tested correctly and completely. It isn't cheap, but waiting is not an answer. I am now looking at a lifetime of treatment because doctors didn't LISTEN to me. I hope you can find help and relief. Never give up. Keep fighting for your health. It is NOT normal to loose your energy and be in such pain. THERE ARE REASONS FOR HOW YOU FEEL! You are not alone! Email me if you wish.Take good care of yourself. No one else really gets this, unless they have gone through it. keep the faith and strength, Don't let the system get you down... KEEP FIGHTING for a DIAGNOSIS!!!
    Anonymous 42789 Replies
    • October 3, 2008
    • 07:38 AM
    • 0
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  • WOW! :eek: What a blessing you folks are, I don't feel so alone anymore! I wish we all were out of pain however and didn't have to write to eachother about how our bodies hurt and people can be less that caring because of it. However it is our fate (for now) that we are stuck with these afflictions, whatever they are, until somebody decides to care and find a cure or give us the proper test, and find a cure, or find a doctor that will help without judging us the minute we say "we don't know why, but everything hurts". HOWEVER, I'm glad I have found this place, it is a refreshing thing to know that I am not alone and I feel my eye's starting to well up again when I think of what I read in your replies to my little blog. I don't know how to ever thank you for sharing your personal pain with me, I know it wasn't eassy. I can say that because of your trust and telling me about your story. You have helped to make me want to continue to fight the good fight. I want you all to know that you now have one more person that is here for you. Too help you fight that good fight as well. Should you ever need an ear to listen or a shoulder to cry on, no matter how painful sometimes things get, I am your new friend and Sister in who also suffers your pain, until our "Ship comes in" so to speak after that we are going to PARTY! Thank you again and I look forward to hearing from you soon, as for today my "newest" doctor has prescribed some medication for me. It seems that when they can't diagnose, they stick more pills in your face and pretty much put you on the back burner, well I can't be on the back burner after your encoraging words, so I'll let you know how it goes with the "next" Doctor and probebly the next after that. :)Well for now, I'm whipped from the long day so I will look forward to hearing from you soon, take care and take it slow! Your new friend ;)QueenofYuma (Renee)
    queenofyuma 1 Replies
    • October 4, 2008
    • 03:12 AM
    • 0
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  • Hi Queen or Renee, Thanks for the kind words, that is why I love this site, we all bless one another, my eyes filled with tears reading your reply. You have a friend in me as well.......I wish you the BEST & will share my "adventures with my many doctors" as I can........rest up to take on the next & hope it will be the ONE doctor to give us some long awaited answers!Your friendBridge27 (Bridget):)
    Bridge27 14 Replies
    • October 5, 2008
    • 08:00 AM
    • 0
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