Part of the 10%

[Knowles]

Hello,
My name is John and I am part of the unfortunate 10% that has fibro. Mine I believe, was triggered by serious medical issues I went through in 2012. I am a financial advisor and over the years I met many clients that told me they had fibromyalgia. And like many who do not suffer from this condition, I had no idea what these people were going through. Now I do. I am glad to have the opportunity to join this support group. I am having a tough time. I know my fibro has progressed. Some say it doesn't, but I will tell you I used to get periods of some but not complete relief, but I would say that the past several months the widespread pain is constant. I have been taking 20 mg of time released methylphenidate on average 2 times a day to combat the fatigue. I also have some other issues that are brought on by fibro. Now that I have that out of the way, are there any others from the 10% group (males) on this forum? Thanks again for this opportunity to share a little about my situation.

 

[diamond]

HI I am not in the unfortunate 10% but the unfortunate 90% haha....but we do get guys on here....they mostly come and go.

You are pretty accurate as far as i am concerned in that my fibro has definitely progressed a lot in 9 years from manageable to awful and totally debilitating.

Every one is different though so don't give up just take very good care of yourself as far as possible....welcome here i hope it helps....and that some guys reply!

 

[Knowles]

Thank you for replying back to me and for your kind words. A simple acknowledgement of "I hear you" goes a long way. I believe this reply only goes to you and not to the forum so if you don't mind I would like to briefly tell you what happened to me.

During 2011 I was ill on various occasions and often had acute flu-like symptoms. I was examined by several doctors, often with the same negative outcome, and each time my diagnosis was depression.

I became discouraged with the medical community and gave up. In fact, in early 2012, I had been scheduled to have yet another exam, this time with a cardiologist, but I cancelled the appointment. I received a call from a nurse who wanted to know why. She listened while I poured out my feelings. Toward the end of the call she asked me if I would come in for the exam and ‘do it for her’. Her personal request and the patience and kindness she showed me made all the difference and literally saved my life. That exam resulted in a positive diagnosis of infective endocarditis. The cardiologist was incredulous when he learned that none of the doctors who had previously examined me had given me a blood culture test. That test would have led to an earlier diagnosis. In 2012 I was diagnosed and treated for infective endocarditis, stroke and breast tumor.

My rheumatologist (board certified and wonderful, caring human being - I sincerely mean that) told me the infection, etc. are most likely what triggered the fibro and now also ankylosing spondylitis. I am blessed to have her.

Thank you too for caring and for reaching out to me. You've made my day.

Take care and God bless.

If you want to see the sunshine, you have to weather the storm. ~ Frank Lane

 

[Tito John]

Hi John,

My name is also John, and I am also part of that unfortunate 10%. I just registered here because, like you, I seem to have entered a new, more painful stage of my fibromyalgia. Every day was a struggle already given the fatigue and pain I have had since early 2009, but now it also worries me greatly. My rheumatologist asks me each time I go to see him if I am still working, and of course I am, since I make too much to get SSDI but will be out on the street if I stop and have to wait for 5 months to apply for it (I have what seems like a myriad of other conditions as well).

Although it probably doesn't really help much, I can say that you aren't alone.

 

[diamond]

You sound such a lovely guy and so appreciative...this speaks volumes to me...it s so often us gentle folk who appreciate kind words and alos give them freely that get struck by this awful illness.

Please come here to share you ups and downs..it is particularly quiet at the moment i see with few long threads but there are sooo many of us who do understand and are happy to listen when we pop on the forum.

Try and find some quiet time just for you...have a long soak in the bath or wrap up in the duvet (comforter) fora rest or watch a silly movie.....you need to take extra care of yourself as often as possible and get help from any friends and family willing to give it.

Its amazing you are still working ..hats off to you...no one could understand this illness and dealing with the lack of empathy is another whole new topic !

Old treads cover this and so many other things but its nice to reach out and connect in real time..male/ female it makes no difference we are all in the same boat dealing with both the physical but also the emotional impact of fibro.

Take Care.