Living With Chronic Fatigue Syndrome

Articles, links, and tips for people living with Chronic Fatigue Syndrome and related illnesses.

Fibromyalgia: An Invisible Disease? An Imaginary Illness?

Posted by Catherine Morgan on March 18, 2008

girl.jpg

Fibromyalgia: An Invisible Disease? — by Catherine Morgan (cross-posted at BlogHer)

I try not to be a complainer, but last week I was seriously not feeling well. I actually resorted to sending a message to the other women in my community to ask for help (and I’ve never done that before).

I thought I would take tonight’s post to talk about what was wrong with me last week, because I know many women are suffering with the same problem.

The good news is, I finally found a doctor in Florida that believes in my diagnosis. I was only changing doctors because I needed someone closer, I had long since given up on finding a doctor that actually understood or had compassion for my condition. So, you can imaging my shock when I went in for my initial appointment, and the doctor told me that not only did he understand what was wrong with me, but he wrote the book, literally. Can you believe it? What are the chances of that happening? I have to admit, my first thought was…This guy can not be from Florida.

And I was right.

But who cares, he’s here now, and he’s my doctor.

Yippee!

Well, not so fast.

The bad news is, he found something else wrong with me. I know, just my luck. Other doctors had told me, that because I have a lot of joint pain, I “probably” had Fibromyagia in addition to CFS. But I had never been “officially” diagnosed. And I’m beginning to wish I never was.

I made the mistake of questioning the doctor on his Fibromyalgia diagnosis. I should have known better, but I really didn’t want to be diagnosed with another “imaginary” disease. Let’s face it, having one “invisible” disease is more than enough for anyone. I didn’t want to be diagnosed with another disease that people don’t even believe exists. After ten years, I’ve gotten to hate having to either pretend I am perfectly fine, or explain why I’m not but still look like I am.

But this doctor wasn’t going to let me off the hook. He was determined to prove to me that I had Fibromyalgia. So he began to touch what is known as the “tender” points, all eighteen of them. [Let me just add one thing here...The person who developed this lovely diagnostic technique, OBVIOUSLY didn't have Fibromyalgia. Let me put it to you this way - Is a jalapeño pepper "mild"? Is a migraine "uncomfortable"? Maybe if you've never had a jalapeño pepper or a migraine.] I had to admit, the “tender” points were hurting me. And if that doctor touched any of them, even one more time, I would have kicked him in his “tender” point.

So, all of this happened on Friday, March 7th – By the next morning, the pain was radiating from all of these so-called “tender” points and throughout my entire body. I felt horrible, everything hurt me. And I didn’t start feeling better until almost a week later. Don’t get me wrong, I really am happy that I found a doctor that doesn’t treat me like a nut case with a disease that isn’t real…I just could have lived without knowing that my random joint pain was really Fibromyalgia.

It would be so much better if these dammed “invisible” diseases, didn’t have “actual” symptoms.

Contributing Editor Catherine Morgan
CatherineBlogs, The Political Voices of Women, Care2 Election Blog

20 Responses to “Fibromyalgia: An Invisible Disease? An Imaginary Illness?”

  1. Malcolm said

    This is one of those classic situations when it would be great for the condition to be imaginary! At least it is positive to find a doctor who actually appreciates the “reality” of the condition – if only he didn’t have to test it.

  2. Hello Catherine,
    I’m having some trouble locating the comment that I posted earlier. This could be because you have cross-posted elsewhere. I want to convey my support for you during this time. I’m very glad to hear that you have located “the doctor who wrote the book”. As for me I suffered for many years without being correctly diagnosed. By the time I was correctly diagnosed I had already found that alternative medicine practitioners who were doing a great job of teaching me how to care for myself and cope with the invisible disabilities. Best wishes to you. :-)

  3. Thanks Brightfeather – :-)

  4. Greg Katz said

    I think you’re very brave. You are obviously connected to your body (even though there are times I’m sure you wish you weren’t). Jerome Groopman’s book “How Doctor’s Think” has been a great relief to me. Having dealt with an auto-immune disease for over thirty years I’ve been in far too many waiting rooms. His book gave me insight into the doctor’s process and how I can use that information to create better relationships with my health providers.

    I find that creating art helps me go to a zone that is less bogged down with distress. The process of creating is inspiring and gives voice to my symptoms. It’s like creative screaming.
    Good luck in your journey

  5. You were in my heart and on my mind Catherine so I dropped into to leave you a {BIG HUG}. You are a remarkable woman with a wealth of knowledge, you are tuned into your body and you have “attitude” — attitude is everything.
    Best wishes

  6. Sue said

    Hi, Catherine –

    So sorry to hear you’ve been diagnosed with another illness, though the flip side of that is that maybe you can get some effective treatment now that you have a diagnosis. You might want to check out my latest blog entry. It’s about a medication, low-dose naltrexone, that has resulted in amazing improvement for me (I only have CFIDS, but naltrexone is also being used for fibromyalgia and many other immune system disorders with great results). Maybe it can help you as well.

    Sue

  7. I am so sorry that you were diagnosed but at least you know now and can treat your symptoms. Many struggle for years without ever being diagnosed. Nice blog. If you ever need help come visit my forum…we have a pretty small but personal group. Good luck!

    Sincerely, Tammy Elaine

  8. Well, I added a banner for ya but the box didn’t support the html…here’s the link:

    The Ultimate Fibromyalgia Resource Center

  9. Sorry to hear about your illness. I have a few questions, if you don’t mind: Have you found anything that works for you? Can you share with us where the 18 tender points are?

    Thanks for sharing,
    Monica

  10. Hi Monica. Here is a link to the tender points…

    http://www.aafp.org/afp/20001001/1575_f1.gif

  11. Maria Reason said

    wrote so much all for nothing no result wiped out

  12. Samantha said

    Keep strong Catherine you know your own body better then anyone.
    Sending big hugs

    Sincerely
    Samantha
    Undiagnosed Illness

  13. Monica said

    Oh my gosh, tears are rolling down my face as I read your article. Trust me, I know exactly how you feel about CFS/Fibromialgia being the “invisible” illnesses.

    I’ll spare you the story, but wanted to make a post saying how I understand!

    And, May 12, 2008 is ME/CFS Awareness Day. I’ve never been one for ’causes’, but felt compelled to write about it on my blog.

    http://handmadebyannabelle.blogspot.com/

    There is a video to help others understand this debilitating illness.

    Thank you for blogging about CFS!

    Monica

  14. RAD said

    Catherine, I can so relate to your blog. My wife has Ehlers-Danlos Syndrome, a chronic illness of the connective tissue that has some cross over to the symptoms CFS patients experience. She often has days where she, for lack of a better word, feels like crap, yet looks great. It’s very hard for her to make people understand that “I may look OK but I can’t stand in line and my neck is killing me”.

    Some days she takes day by day and some it’s minute by minute. I’m happy to here you found a good doctor. I know what it’s like trying to find one that doesn’t think you are crazy or a whiner. We went through that too. Don’t give up. Lean on those around you. They want to help.

  15. Hi! I’m having a blog carnival and would love for you to submit a post! You can read more about it here:

    http://icdisease.today.com/2008/06/07/join-the-ic-disease-health-blog-carnival/

  16. icarecafe said

    the icarecafe would really like your help with a discussion on Fibromyalgia

    As you many know the icarecafe has been set up to provide a space for patients, carers and their supporters online.

    Some of the members have set up a discussion group on the subject of Fibromyagia. The group has asked lots of questions which are still in the process of being answered. So we thought it appropriate if we invited people from other Fibromyalgia discussion group and blogs to ask if they wished to participate.

    To have a look at the discussions so far please have a look at

    http://www.icarecafe.com/?page_id=1107&group_id=36

    Please do feel free to join in the discussions and to post any information which might be of interest to our members.

    If you have any questions please feel free to get in touch. I’m one of the moderators of the icarecafe and I can be contacted by sending and internal email to my profile.

    Thanks very much in advance for your help!

    Best wishes

    Belinda Shale
    Moderator – the icarecafe

    http://www.icarecafe.com

  17. Kevin said

    Have you heard about Dr. St. Amand’s guaifenesin protocol for treating fibromyalgia? It’s not a pain reliever and goes beyond treating just the symptoms. You could visit the protocol’s web site:

    http://fibromyalgiatreatment.com/

    I have followed it for 5 months and my pains, fatigue and symptoms have significantly improved. It’s miraculous!

    Kevin

  18. Haifa2404 said

    I understand what you’re going through, I really do. I was diagnosed with Fibromyalgia just yesterday. But frankly, I think that that doctors (especially rheumatologists) say I have Fibromyalgia because they don’t know what to do anymore to ease my pain. It’s the easy way out: Chronic pain that can not be proved by any blood test or any other scientific process must be Fibromyalgia! Oh and they can prove it by pressing against eighteen tender points in your body and if it hurts then it must be it. Yeah right!

  19. Angel said

    Hi there, I’m also someone who suffers from both Chronic Fatigue and Fibromyalgia. Two invisible, highly debilitating diseases that many people don’t seem to think you have. Or don’t take seriously.
    I’ve also been from doctor to doctor, who tried to sell me some gimmick or another that would supposedly ‘cure’ me. I have been suffering with both for most of my life, however it wasn’t until a few years ago that I discovered what the problem was.
    I’ll spare you the rest of the gory details, but I can highly sympathize!

  20. Heather said

    I know exactly what you mean. I have a wonderful doctor who is very supportive and totally believes that fibromyalgia is real even though it often seems “invisible”. However, every three months when I see him for my regular check ups he always has to gauge my tenderness that day which means he presses and mashes on each tender point. I end up leaving there feeling much worse than when I arrived but at least he is trying his best to quantify an often unquantifiable illness. Thank God for Doctors who believe.

Leave a Reply

XHTML: You can use these tags: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <pre> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>