I just want to introduce myself. I am an RN of 17 years. I had never heard the term "fibromyalgia" until I got very ill about 7 years ago. I had no idea what was wrong with me. I thought at first I had a fatal disease and would die. This is because my body literally felt as if I were dying.
I am going to plea with you to read this and lend an ear for a few minutes. Then if you choose still not to believe it exists as a real medical physical condition, then so be it. If you still tend to believe it is "not that bad" then so be it. However, please listen for a few moments.
I am the caregiver. I always have been to some extent even before I was a nurse. But I am the one you will find to believe you when YOU say you are in pain. You will get compassion from me. You will get my best offers of comfort when you have the flu, a cold, a broken bone, cancer and etc. I will be the one to listen to you and help in any way I can. This just happens to be a part of my personality which gives. So for you to say you will not believe me really hurts emotionally. I wish you would just consider how you would feel if you had the worst headache of your life and someone said that you were faking it or that you must be imagining the pain.
Headaches are well accepted. We have all had them. Everyone at some time has had a bad headache or has had a migraine. I believe you when you tell me you hurt. But then again, fibromyalgia is one of those diseases which is as invisible as a headache but yet not believed by many because they have not experienced the disease first hand. And please believe me when I say that your family member or friend who has FM is in much more pain all over than just a headache.
It hurts us badly to have the very people we love doubt us. The reason is not because we neccessarily want sympathy, but rather the fact we only want belief. Your disbelief does not relieve your loved ones real physical pain and miseries. It only serves to hurt more. The disbelief and labels may not increase the horrible physical pain, but it does bring on emotional pain which only adds to the miseries of the disease they call "fibromyalgia".
As a nurse, I research everything about this monster which plagues me. Most recently they have found evidence that FM is indeed real and is a disease of the central nervous system. Chemical imbalances in the brain are at fault for the many many symptoms we suffer. Just as diabetes is a disease of the pancreas which fails to supply enough insulin, the brain fails to supply enough of other kinds of chemicals in FM. You can believe diabetes because you can see it on paper or on a blood sugar meter. We don't have an FM meter. But the disease is real. I might add I would rather live with diabetes everyday than to live with FM.
...he says nothing in response.
Dear Debra,
.
Thank you for the awesome post. I have had Rheumatoid Arthritis for 34 years and that disease is pretty much under control, but my fibro friend (enemy) seems to never ever be under control!! I absolutely hate this constant pain. One day at a time I guess. I too have pills, they are my friend! I am so judged by my family because they think "you didn't need narcotics with your RA, why do you need them now"? I am blown away at how they can play doctor with me, totally disregarding all the pain I have everyday. I have a double whammy, having RA and fibro, it sooo sucks!! Are you able to work? I can't imagine how you worked before your diagnosis, I feel for you. I have had many nurses in my day and you know which ones are good and which ones aren't when it comes to pain relief!! I imagine you have got to be one of the best in town. I once heard that if you have RA your likelyhood of getting fibro is as high as 80%. Is that true? You didn't mention if you had children or not, mine all came after my RA diagnosis (i actually had juvenil arthritis) so all they know is a mom who struggles with health issues. I never got to do many physical activities with them, but they all turned out ok. They are pretty understanding, except for the eldest daughter, she hates the fact that I am on pain medication and actually wouldn't talk to me after a particular difficult hospitalization. I went through a detox program so I could try Suboxen (spelling?), unfortunately it did not work, I was completly devastated. I am so glad you shared your experiences and hope to hear more from you. You must have a wealth of information and many stories to tell. Well God Bless and again thank you!!
I am a big advocate for fibro belief, removal of stigma, and advocate for pain control. It it means narcotics, then so be it. What people don't understand is that if they took the meds we did, yes, they would be looped. But because we take them for the real symptoms and real pain, they don't loop us or drug us like it would them. My anger comes not only from FM miseries, but more from the fact we must face such stigma and judgement. People are attacking our very dignity and integrity for all the mean things they can say and think of us.
We hurt. I promise if they had one day of this kind of pain, they would look for narcotics too. They have no idea what kind of pain we suffer everyday. They say it won't kill us, but to me we live a life of someone with cancer, yet ours is not cut short. We live with it in the normal span of life.
hugs to you,
Debra
learnFMnow
Also let me comment on how cruel it was to detox you. It was cruelty. Yes, of course we will have withdrawals from stopping our meds. But people do not understand that this does NOT mean addiction. Addiction is when you crave the drugs for a high and take more and more so that you can get that way. The meds are taken beyond pain relief. That is addiction. People even have withdrawal symptoms from antidepressants and they are not even a controlled substance. People don't get high on antidepressants.
hugs again,
Debra