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Karen, I agree with you 110%. Only in my case it's RA. I am lucky, in some respects, that it was caught early and I was put on a very good med called Remicade. But,, because I don't have the disfigured joints like some with RA have, people don't think I have pain. This is something I wrote in 2008 about living like this:
Debilitating Pain of RA
Many people don't realize that we, people with Rheumatiod Arthritis(RA), don't have to be in a wheelchair or use a walker to be disabled, the pain of RA does make you
disabled, whether it's physically or mentally.
I realized this one week when the medication had diminished from my system and the pain from RA ravaged my body. I never knew what pain was, I mean real pain, that attacks all your joints at once and makes you want to say "I can't take this anymore!"
I thought that the pain I went through with Chronic Regional Pain Syndrome(CRPS) was the worst pain I could have, but that was just one knee, the RA pain went through most joints in my body. One day it could attack the neck, shoulders, elbows, wrists, hands and fingers. Then it takes on the hips, knees, ankles, feet, toes or any joint vulnerable to this disease.
How can anyone say a person with RA is not disabled? Is it because you can't see my disability? Or maybe my pain? The day comes for the treatment and yes it does help the pain go away, but not completely away. The disease is still there lying in wait until the medication leaves my system and then it will rear it's ugly head and again I will be in pain. Janet Richards 2008
Hi Karen,
Once again you've done a great job. Sometimes we have to look back to know just how far we've come. For so many years, you've done a super job of helping people gain knowledge about fibromyalgia and chronic pain, therefore I know you will continue to do so. Thank you for all you've taught me; I, for one appreciate each topic you study and research for this website and beyond. I know your struggles and your triumphs and I applaud you. Thank you for reminding me of things I sometimes forget when I feel badly and don't realize I'm better than before although the pain is still there. Linda E
The part about you staying up all night and sleeping in in the mornings was really encouraging to me. I thought I was the only one with this problem, and feel embarrased when I have to explain to other people that I can't meet them in the morning because that is when I sleep. If you ever need to e mail someone in the middle of the night I'll be here at my computer!!!!
My Dear Meme:
Congratulations for the good article you have written, I'm a consultant in rehabilitation and suffer from fibromyalgia, I must tell you that you are absolutely right in the 30 points you mention, unfortunatelly there are financial responsabilities that the goverment doesn't want to take eventhough is fully recognised how terrible this condition is in our daily life. Regards: Dr.Eduardo Lopez-Gonzalez.
I want to say thank you for this article you wrote about your invisible disability. I would like to have something like that to hand out to friends and aquaintances and anyone else who give me a questioning look when the see me and think I am not disabled. I have three herniated discs, degenerative disc disease, chronic sciatica and arthritis of the spine. So, I am in some stage of pain all the time. If I do anything that requires extra exertion with the pain level spikes. It's just a matter of time before it wears me out. Then I get frustrated and depressed. I have God and the Angels on speed dial. lol. My husband has been a wonderful support but, there are times he gets over protective of me and impedes my independence. Keep up the good work and I hope your days are a painless as possible.
Thank you sooooo much, Karen, for your article. It means so much to know there are others who understand. I have herniated discs, degenerative disc disease, chronic sciatica, fibromyalgia, and arthritis of the spine, along with COPD, severe asthma, coronary problems ... and the beat goes on. When I park in handicapped spaces, people often look at me as though they think I shouldn't be parking there, even with my handicapped license plate. I'm in pain every day. Not being able to do things I used to do really frustrates me. Then, if I am having a 'good day', and I 'forget' my limitations, my body soon reminds me, and then I'm good for nothing the next day ... or two. Then I get frustrated and even more depressed.
I wish more people were aweare of all the "invisible Illnesses" out there!
Thank you, again.
diane
This is a terrific article. Prior to finding true help/assistance for this disease, most people told me that I didn't act like anything was wrong with me. That in itself was frustrating. They didn't know how exhausting it was to have muscles so knotted up that it only hurt to move. I have also been told by my Primary Care Physician, that maybe I was researching too much! Yes, I will switch. The research was very 'telling' in its own way, and drove me to make a really good decision to see a former doctor. He is the only dual certified physical therapist/chiropractor in this area (Charlotte, NC). I knew a Chiropractor couldn't help because of my LACK of flexibility caused by the knotted muscles. After 2 months of therapy, he could finally adjust my neck and part of my back. He is giving me my life back, and I appreciate it to an unbelievable extent.
Thank you.
Hi Sue... would you be willing to share who your chiropractor/phys therapist in Charlotte is? I just moved to the Charlotte area from California and I have had a horrible time finding good care for my fibromyalgia. The primary care doc I went to wanted to put me on a morphine patch! Would much rather use chiropractic/physical therapy. Does your chiro use an "activator" or manual adjustment?
Thanks so much.
~Meg
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Thanks, Karen. I loved your answers to the questions-especially about clothes hurting.