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Whyfor

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Primarily thanks to this forum, I've come to the realization that I have spent several years just passively accepting my illness without ever knowing for sure what was causing my suffering. This happened because, I think, I've undergone about ten years of being told "I don't know what's wrong with you," and, "I think you're just depressed." Frustration and anger had driven me away, and I've been trying to deal with it outside of doctors and tests, with the loving help of my incredible spouse, who supports me and believes in my pain (Oh, yes, I know how fortunate it am). But I'm just running away from what might be the truth.

The only time Fibromyalgia was ever brought up to me as an option was quite a while ago, when the condition was still being widely debated as to whether or not it was even a genuine diagnosis. When the Rheumatologist in question poked me in all the "Tender Spots," and found I was only sensitive in and around my hips, she shrugged her shoulders and sent me on my way. Since then, I believe I created for myself the idea that Fibromyalgia is only a throw-away "disease" doctors give people when they don't know what's actually wrong. And I feel terrible for it.

I have all the core symptoms, plus a few atypical ones, including sun sensitivity and easy bruising. They began after a terrible bout of Mono as a teenager, and I just never got completely better. I've never been able to hold a steady job, and attaining any form a disability has been impossible because no doctor has ever given me a real diagnosis.

Before I go rambling any further, I think I just wanted to say "Thank you," and let you wonderful people know that I'm restarting this miserable journey through the medical system. My first plan of action is to contact my GP to see if she has any suggestions on a good Rheumy to visit. (Hopefully one I haven't seen in the past, since I've already gone to a handful of them in my area.)

If anyone has any good advice, I would be so grateful to hear it! But again, thank you so much! The forums have been awesome for me! And I mean that sincerely. :smile:
 
Good for you. I just wanted to say that the most important thing in any illness is management. We all fight for a name of the illness we face, I think because at least in my case I fought for a name thinking once I had this "name," doctors would treat me better and they would have a cure. After all, that is the main goal. Name then cure it so I can get my life back. But even with the finally name of the illness we still have to manage our condition. That is what makes this forum special as we all share how we cope and the treatments and home coping skills that work for us. This gives others a starting point to developing their own coping skills.

As you go forth looking for your diagnosis you may want to consider getting help of a counsler who deals in mental health. No your not crazy, but you are dealing with anxiety and depression, and maybe loss of work or trouble managing homelife. What I found was that a counsler gave me someone to talk with that understood and could listen and offer help without being judgemental. That way when I was at home or with friends who didn't understand I knew I had someone in my corner to help me deal with the depession that comes from loneliness and sadness. Just a thought!

Please let us know how things work out with a rheumatologist, and keep coming and reading. The more you know the better off you will be. I often tell members that it is best to tell the doctors the worse symptoms that are affecting your life and let the others wait until you see if the doctor is helpful or not. When we come in with a long list of complaints often we are not taken seriously. Be sure to write down any questions you have so you don't forget them.

I hope this helps and I do wish the best of luck to you in getting that answer, that name for your illness. :)
 
Being told by my dr. that I had a myalgia was no surprise and did not change what I was doing for it. I was still down for a couple of days just the same. Having home support is huge for me. I wish you the best, good luck.
 
Whyfor, I'm so glad to hear you are finding the forums really useful :) I wish you the best of the best with your mission. I know what is like to know something is wrong with your body, but not being able to get a clear diagnosis. I was in a limbo like that for a few years, until I was diagnosed a few years ago, but I just couldn't believe it, since my symptoms aren't all that bad!

It wasn't until I started participating in this forum that I came to my senses and realized I was living in denial. I was afraid before to face the reality, but in the last months I learnt is better to face reality... I just got tired of living in fear! I congratulate you for taking your health in your hands :) Sometimes we just have to fight to get the right diagnosis. Best of luck!
 
Thank you all so much for the words of support! It really does mean a lot.

I do think I had been living in some state of denial. I mean, I knew my health was bad enough to keep me from having a normal life, but I think I sort of entered this head-space where I just didn't think it mattered as much anymore. All of the symptoms I deal with day-in and day-out have become almost routine, to the point where I've already learned how best to work around them when I can. I relatively know my limits, and I've learned to not push myself too hard. However, I'm finally learning that without a proper diagnosis, I can't get any treatment that might actually help me improve! I'm just winging it here on my own.

The forum has become a bit of fresh air, just to see so many people like me. I will absolutely utilize it with any questions I may have.
 
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